The latest on my craw's radar: people who (appear to?) object to early intervention. Remember that my son is five. He is a product of early intervention. I believe in making sure that ALL people get the services and supports they need- that is, early intervention is not about telling other people it is "too late" or an alternative to providing service to older children or adults. Early intervention is identifying children who need services and support as early as possible and providing he service and support they need. It is about trying hard to get kids learning the skills other "normal" kids pick up on their own, and helping them learn to function, to play, to learn about their world and communicate with their fellow human beings.
Although this attitude may not be shared by all folks who believe in early intervention, I can only speak to the attitudes I know. Maybe there are folsk who believe they are curing their kid. I have no such allusions. I am teaching my autistic child to live in a world designed for people who are not autistic.
But the objections to early intervention seem to be something I can't put my finger on. I sometimes have this trouble between when my critical thinking alarm goes off ("there's something wrong with this argument...") and when I actuallyhave time to process what the other person is arguing to be able to pinpoint the problem ("Oh! I see. You think the sky is yellow. Well, that doesn't work.") At this stage in my processing, I can only say that when people scream very loudly and get very upset and start attacking other people because of their parenting choices and semantics of their goal, there is usually something wrong i the argument- especially when they suddenly seem to be in my face.
Sometimes there is something wrong with my own thinking. I'm learning all this too, after all. I am not a perfect savant about autism or even about Joey. I'm no mindreader, and I have to learn what he's thinking and feeling the same way other people do- I'm just better at understanding him than most other people. I understand that I don't know everything. But usually by the time I have ideas that get out here, they've been pretty thought through, so that they are at least reasonable, even if not always right. There is no need for shouting, or getting surly. Present me with new information.
But usually when I have someone surly and sharp telling me what an idiot I am, there is something wrong with that side of things. The assumption of stupidity is a huge red flag. The assumption of lack of research is another red flag. It makes me start to look very carefully at what is being said- and what is being implied.
Back to the case in point: early intervention. So far, there seems to be an anti-early-intervention segment, and they are very, very angry. So far, the objections to early intervention seem to be:
1. You shouldn't medicalize child development.
2. It is impossible to diagnose autism before age 2.
3. Children before age 2 often seem to be autistic.
4. Early intervention is intended to "cure" autistic children.
5. Early intervention services deny services to older children and adults (apparently because the services are intended to "cure" autism.)
Child development is already medicalized. That's why we go to a pediatrician for well-baby appointments every 6 months.
If we had been knowledgeable about autism, we could hav diagnosed Joey before the age of 2- closer to 18 months. He was showing signs while we were still in the hospital, but diagnosing based on sensory problems would probably be very tricky.
My non-autistic child is VERY different from Joey- even with the sensory problems my other child has. With them side-by-side, there is no mistaking that Joey was autistic from birth. I have not met a normal child who "seemed" autistic the way autistic children do before age 2. I have met children with other disabilities who present very similarly to autism. And for the record, Joey did have things like eye contact, smiles, and interest in people as a baby. No one sign is going to give you a diagnosis of anything, much less autism.
Early intervention helps children learn valuable skills and gain functional skills and education that other children "pick up" through imitation and normal processing. It helps autistic children learn how to learn. It does not cure autism.
Early intervention does not eliminate the need for future service, and does nothing at all for people who currently require support and service. It lessens the needs for specific types of service for children who are able to benefit from early intervention.
In Joey's case, the smiles were disappearing. The ability to communicate was not developing. He was becoming increasingly frustrated and upset. WE WERE LOSING HIM. That may be hard for some people to understand. It seems particularly difficult for some autistic adults I have met. From this point of view, I was watching a happy, healthy, loving child turn into a sullen, frustrated, angry child. As a parent, that means something must be done. Now. If I had not moved my butt and gotten him into some kind of intervention, what would have happened to him? I can tell you this: he would not be speaking. He would have remained rustrated and angry. He would have had less and less access to the world around him. I understand that some people think that this is what I should have done- allowed him to "be autistic" and do nothing. I can't please everyone.
Tuesday, May 15, 2007
Monday, May 14, 2007
House Hunting
I had a few minutes with my friend Christine this morning. We haven't seen a lot of each other lately. She's the one with the three hydrocephallic boys, and I have my two little guys, so the two of us are definitely hopping. She needed to go to the grocery store this morning. Andy and I were not doing anything at all, so we picked her up for the ride. I have a rental, because my car is in the shop from being rear-ended, and we thought it might be nice to ride around in a new car for a few minutes after we got out of the store.
We drove lazily around town looking at the houses for sale. There are quite a few, because the recent assessments on everyone's property just doubled, and people are being taxed out of town. The problem is, if you sell, where do you go? You have to leave the area. The assessments are obscene, by the way. I have a nice little house. We were very, very lucky to get it, and just a couple years before things started going crazy. It is right in town, and I have made a nice little garden and everything. But it is not worth what this assessment is saying it is worth. Maybe about half. But we're in town, on the east coast, in teh DC metro area. Apparently large numbers of people want to pay way too much money to live here.
Or do they? Several of these houses have been on the market a while.
Anyway, its not like we're planning to move, but it can be fun to wander around and look at other people's houses and gardens. Some need some work. Others are gorgeous. Oh, look at the gingerbread on THAT one! In the midst of this chatter, plans for summer, goals for the boys for summer, what we are going to do with ourselves in teh fall when Andy- the last of our boys- is actually in school two days a week. Dreams of getting housework done, yardwork done, porches repairs, ramps built, couches recovered. Dreams of time.
Generally, my house looks like a bomb went off in it right before the tornado hit. I am not a housekeeper. I keep my life in mounds and piles. If I have no time, those mounds just keep getting bigger, instead of occasionally disappearing. It is also over-run by toys. this partly because of a lack of time, partly because Joey needs almost constantly supervision. Toys invaded our living and dining rooms because of this, when I kept him occupied while I got things done. And then I stopped being able to do things. Both boys get very, very upset if I do stuff. Its very, very strange. And then keeping them engaged is very important, so I spend a lot of time- poor me- playing with them. ;) Having them be able to spend some time outside by themselves has been lif-changing. I can cook dinner- real dinner- every once in a while. Its nice to have some real food.
We're having tacos tonight. I can divide everything on teh plate, so Joey will eat it- even the meat. Yay for dinner!
Once Christina's boys come home, it is a constant schedule of feeding, changing, and trying to get her housework done. The housework usually ends up not happening, but her house always looks neat as a pin. I have no idea how this is done. :P
We drove lazily around town looking at the houses for sale. There are quite a few, because the recent assessments on everyone's property just doubled, and people are being taxed out of town. The problem is, if you sell, where do you go? You have to leave the area. The assessments are obscene, by the way. I have a nice little house. We were very, very lucky to get it, and just a couple years before things started going crazy. It is right in town, and I have made a nice little garden and everything. But it is not worth what this assessment is saying it is worth. Maybe about half. But we're in town, on the east coast, in teh DC metro area. Apparently large numbers of people want to pay way too much money to live here.
Or do they? Several of these houses have been on the market a while.
Anyway, its not like we're planning to move, but it can be fun to wander around and look at other people's houses and gardens. Some need some work. Others are gorgeous. Oh, look at the gingerbread on THAT one! In the midst of this chatter, plans for summer, goals for the boys for summer, what we are going to do with ourselves in teh fall when Andy- the last of our boys- is actually in school two days a week. Dreams of getting housework done, yardwork done, porches repairs, ramps built, couches recovered. Dreams of time.
Generally, my house looks like a bomb went off in it right before the tornado hit. I am not a housekeeper. I keep my life in mounds and piles. If I have no time, those mounds just keep getting bigger, instead of occasionally disappearing. It is also over-run by toys. this partly because of a lack of time, partly because Joey needs almost constantly supervision. Toys invaded our living and dining rooms because of this, when I kept him occupied while I got things done. And then I stopped being able to do things. Both boys get very, very upset if I do stuff. Its very, very strange. And then keeping them engaged is very important, so I spend a lot of time- poor me- playing with them. ;) Having them be able to spend some time outside by themselves has been lif-changing. I can cook dinner- real dinner- every once in a while. Its nice to have some real food.
We're having tacos tonight. I can divide everything on teh plate, so Joey will eat it- even the meat. Yay for dinner!
Once Christina's boys come home, it is a constant schedule of feeding, changing, and trying to get her housework done. The housework usually ends up not happening, but her house always looks neat as a pin. I have no idea how this is done. :P
Sunday, May 13, 2007
Mother's Day
It is a Mother's Day tradition now that my mom and I got to a local, family-run nursery and buy flowers for the yard. These are then ceremonious taken home, and left to dry out in their little plastic pots. Sometimes I get them in the ground and revived. But it sure is fun picking them out.
This year I had the boys pulling the wagon for me. Its one of those moments that hits me oddly. When joey was Andy's age, he did not pull the wagon. He did not try to pull the wagon. I spent most of the time chasing him among the flower-tables, but he never even saw the flowers. He had been in school most of a year, and had about 25 words. If I bothered to move about two feet, I could pick up his baby book and tell you what the 25 words were. "Flower" was not one of them.
This year, Andy was all about the flowers, the wagon, and the brothers wanted Mommy to pull, then Andy wanted to pull Brother (Mom had to help), then Joey wanted to pull, then they both wanted to pull the flowers for me, and they both wanted Grandma to watch. Andy did a lot of hard pulling. We could discuss it as a sensory issue., all the heavy work, but what fun is that? Andy wanted a plant, he got his own grape tomato plant, he LOVES grape tomatoes. I hope we get a chance to plant it together tomorrow. Joey wanted a blue flower. I found some purple verbena, and that seems to do. I also got some geraniums for the front, and some dahlias, and some thyme to spread on the little paths- they'll smell good as boy feet crush them. I may try to track down some more to edge the yard. I have a lot of mint already growing. They didn't have any lemon thyme or pineapple sage, so I'll have to go elsewhere. Before I had boys, we'd get herbs at the Cathedral, but I doubt I'll get up there- again. I'd also like some lamb's ear, because it would be soft and be another good edging, another texture, another smell, and the silvery leaves add another color.
I know- just what SID kids need- a sensory-overload garden.
This year I had the boys pulling the wagon for me. Its one of those moments that hits me oddly. When joey was Andy's age, he did not pull the wagon. He did not try to pull the wagon. I spent most of the time chasing him among the flower-tables, but he never even saw the flowers. He had been in school most of a year, and had about 25 words. If I bothered to move about two feet, I could pick up his baby book and tell you what the 25 words were. "Flower" was not one of them.
This year, Andy was all about the flowers, the wagon, and the brothers wanted Mommy to pull, then Andy wanted to pull Brother (Mom had to help), then Joey wanted to pull, then they both wanted to pull the flowers for me, and they both wanted Grandma to watch. Andy did a lot of hard pulling. We could discuss it as a sensory issue., all the heavy work, but what fun is that? Andy wanted a plant, he got his own grape tomato plant, he LOVES grape tomatoes. I hope we get a chance to plant it together tomorrow. Joey wanted a blue flower. I found some purple verbena, and that seems to do. I also got some geraniums for the front, and some dahlias, and some thyme to spread on the little paths- they'll smell good as boy feet crush them. I may try to track down some more to edge the yard. I have a lot of mint already growing. They didn't have any lemon thyme or pineapple sage, so I'll have to go elsewhere. Before I had boys, we'd get herbs at the Cathedral, but I doubt I'll get up there- again. I'd also like some lamb's ear, because it would be soft and be another good edging, another texture, another smell, and the silvery leaves add another color.
I know- just what SID kids need- a sensory-overload garden.
Saturday, May 12, 2007
For Living Memory
Katie McCarron is about the same age as my Joey. They might have gone to school together. They would have been in the same playgroups, the same classes, gone to the same parties; as they grew, they would have shared the same friends, perhaps met each other in college. My son and I have missed the opportunity to have this beautiful young woman in our lives.
Katie McCarron loved grass. So does Joey. They could have pretended to be lambs together.
HUg your children tight. Love them as they are. God bless Katie McCarron.
Thursday, May 10, 2007
Summertime Nears
I've been having some interesting conversations with some other friends who either have very young children, or very typical children. The complaint of the day appears to be Summer. School is out. What to do with the bairns? Ah, the stress of having to spend time with your little ones, while the days are warm and the sun is up early and to bed late.
From what I have gathered, the typical summer day for "normal" kids goes kind of like this:
Rise: Somewhere in the region of 9 am. If the kids are early risers, then they get up earlier, or know to play quietly until Mom gets out of bed. The 6:30-7 am rise for a school day is clearly relaxed. For preschoolers, the 8 am rise is relaxed to 9.
Breakfast. Most of the mom I know actually cook breakfast, or at least do more than tell their kids to get their own cereal. However, I understand that this may actually be unusual. At any rate, breakfast is served.
Hanging out. Perhaps they will go to the park today. Maybe a ride somewhere. Perhaps there's a special event in town. A trip to Grandma's is always good for an outing. If all else fails, that's what the TV and DVD player are for, or that video game console. '
Lunch. This apparenly can happen anywhere from 11 am to 1 pm, depending on when your bairns rise in the first place. Buy stock in peanut butter, jelly, and chips. Apple orchards are a good bet, too.
Hanging out. Going to the pool is a popular afternoon activity, as Mom gets a chance to chat with other moms while the little ones get cool and wet. Rainy afternoons- well, that's what that TV and DVD player or video game console are for.
Snack. Sometime during the afternoon, the hanging out is disturbed for consumption of sugary and/or salty comestibles, washed down by juice. (Yes, I know many of my readers will be offering actual healthy snacks to their kids. Most of my friends with normal kids don't read this blog.)
More hanging out. If one cannot remain at the pool until dinner, another activity is usually offered, involving the TV and DVD player, or the game console. (I think some of these people need to get that "no electronics until after 5" rule and get some creativity going for engaging these kids.)
Dinner. Mac and cheese, hotdogs, maybe something from the grill. Buy stock in Oscar Meyer. It's going to be BIG. Dinner being consumed somewhere between 6 and 8 pm, with no regularity to when exactly- eat when the mood hits you and the grill is warm enough.
More hanging out. TV and DVD or game console again. No surprise there.
Bedtime. This begins sometime when the kids feel sleepy, anywhere from 9 to 11 pm. Bath, stories, songs, tucked in, and off to dreamland, until tomorrow...
OR:
6 am: drop child at daycare.
6pm: pick up child from daycare.
Take, for contrast, what my summer is going to look like:
Rise: Between 7 and 8 am. No later than 8 am, but I would like to sleep in that long. Dressing ritual commences.
Breakfast: Eaten by 8:30 am.
9 am: OT camp for Joey. This will bein town, so about 10 minutes in the car. Take activities to entertain Andy while waiting for Joey.
10 am- consult with the OT.
10:30-11:30- playground. If it is raining, basement activities: blocks, trains, coloring, painting, something of that sort.
11:45- make lunch. Lunch must be ready by 12 noon. Lunch must be consumed by 12:30, because we have to be in the car promptly at 12:30.
12:30- drive to Speech camp.
1-2:15 Speech Camp for Joey. Activities packed for Andy.
2:15- consult with the speech therapist.
Tuesdays: More speech, 2:45-3:30pm.
Wednesdays: OT 4-5 pm.
Thursdays: OT 3-4 pm. Drum lesson, 5-5:30 pm.
Yet to be Scheduled: OT for Andy and Speech for Andy, once per week each. OT might be 11 am on Mondays, eliminating morning playground on Mondays.
1/2 drive back home.
Also yet to be scheduled: ABA sessions, probably 3 hours per week, to teach safety and communication.
Any spare time in the afternoon will be spent in the back yard or the basement, depending on weather and scheduling of presently unscheduled activities.
Dinner: Promptly at 6 pm.
6pm-7pm: Wind down. Yes, I will probably get out the TV and DVD player, or have them play games from Noggin and Sesame Street.
7 pm- bedtime. Bath, story, song together. story and song each seperate. Lights out. Joey will play in his window until the light fades. Andy will play until he passes out.
On weekends, each and every Saturday I am not working (I don't get a lot of work in the summer) will be taken up by a "field trip." Sundays will have Sunday school and a ride to a closer destination or visit to Grandma.
There will be no room for variation, unless someone gets physically ill.
When the conversation turns to "summer woes," I realy have nothing to say. What they are talking about sounds like a wonderful, relaxing life to me. If I mention what my days look like, they glaze over and start talking about the pool. I can't take my kids to the pool by myself.
My friends and I share one thing: we both are holding on for Fall, when kids go back to school. In their view, they will get their lives "back". In my view, I will get two hours twice per week to clean, vacuum, do laundry, cut the lawn, try to get caught up on repairs, and at Christmas, clean and decorate and bake cookies (mmmm... cookies...) At least I will get lots of time to play with Andy. I am already putting together a otebook of ideas for portable projects and activities that can be done in waiting rooms and office playrooms. :)
From what I have gathered, the typical summer day for "normal" kids goes kind of like this:
Rise: Somewhere in the region of 9 am. If the kids are early risers, then they get up earlier, or know to play quietly until Mom gets out of bed. The 6:30-7 am rise for a school day is clearly relaxed. For preschoolers, the 8 am rise is relaxed to 9.
Breakfast. Most of the mom I know actually cook breakfast, or at least do more than tell their kids to get their own cereal. However, I understand that this may actually be unusual. At any rate, breakfast is served.
Hanging out. Perhaps they will go to the park today. Maybe a ride somewhere. Perhaps there's a special event in town. A trip to Grandma's is always good for an outing. If all else fails, that's what the TV and DVD player are for, or that video game console. '
Lunch. This apparenly can happen anywhere from 11 am to 1 pm, depending on when your bairns rise in the first place. Buy stock in peanut butter, jelly, and chips. Apple orchards are a good bet, too.
Hanging out. Going to the pool is a popular afternoon activity, as Mom gets a chance to chat with other moms while the little ones get cool and wet. Rainy afternoons- well, that's what that TV and DVD player or video game console are for.
Snack. Sometime during the afternoon, the hanging out is disturbed for consumption of sugary and/or salty comestibles, washed down by juice. (Yes, I know many of my readers will be offering actual healthy snacks to their kids. Most of my friends with normal kids don't read this blog.)
More hanging out. If one cannot remain at the pool until dinner, another activity is usually offered, involving the TV and DVD player, or the game console. (I think some of these people need to get that "no electronics until after 5" rule and get some creativity going for engaging these kids.)
Dinner. Mac and cheese, hotdogs, maybe something from the grill. Buy stock in Oscar Meyer. It's going to be BIG. Dinner being consumed somewhere between 6 and 8 pm, with no regularity to when exactly- eat when the mood hits you and the grill is warm enough.
More hanging out. TV and DVD or game console again. No surprise there.
Bedtime. This begins sometime when the kids feel sleepy, anywhere from 9 to 11 pm. Bath, stories, songs, tucked in, and off to dreamland, until tomorrow...
OR:
6 am: drop child at daycare.
6pm: pick up child from daycare.
Take, for contrast, what my summer is going to look like:
Rise: Between 7 and 8 am. No later than 8 am, but I would like to sleep in that long. Dressing ritual commences.
Breakfast: Eaten by 8:30 am.
9 am: OT camp for Joey. This will bein town, so about 10 minutes in the car. Take activities to entertain Andy while waiting for Joey.
10 am- consult with the OT.
10:30-11:30- playground. If it is raining, basement activities: blocks, trains, coloring, painting, something of that sort.
11:45- make lunch. Lunch must be ready by 12 noon. Lunch must be consumed by 12:30, because we have to be in the car promptly at 12:30.
12:30- drive to Speech camp.
1-2:15 Speech Camp for Joey. Activities packed for Andy.
2:15- consult with the speech therapist.
Tuesdays: More speech, 2:45-3:30pm.
Wednesdays: OT 4-5 pm.
Thursdays: OT 3-4 pm. Drum lesson, 5-5:30 pm.
Yet to be Scheduled: OT for Andy and Speech for Andy, once per week each. OT might be 11 am on Mondays, eliminating morning playground on Mondays.
1/2 drive back home.
Also yet to be scheduled: ABA sessions, probably 3 hours per week, to teach safety and communication.
Any spare time in the afternoon will be spent in the back yard or the basement, depending on weather and scheduling of presently unscheduled activities.
Dinner: Promptly at 6 pm.
6pm-7pm: Wind down. Yes, I will probably get out the TV and DVD player, or have them play games from Noggin and Sesame Street.
7 pm- bedtime. Bath, story, song together. story and song each seperate. Lights out. Joey will play in his window until the light fades. Andy will play until he passes out.
On weekends, each and every Saturday I am not working (I don't get a lot of work in the summer) will be taken up by a "field trip." Sundays will have Sunday school and a ride to a closer destination or visit to Grandma.
There will be no room for variation, unless someone gets physically ill.
When the conversation turns to "summer woes," I realy have nothing to say. What they are talking about sounds like a wonderful, relaxing life to me. If I mention what my days look like, they glaze over and start talking about the pool. I can't take my kids to the pool by myself.
My friends and I share one thing: we both are holding on for Fall, when kids go back to school. In their view, they will get their lives "back". In my view, I will get two hours twice per week to clean, vacuum, do laundry, cut the lawn, try to get caught up on repairs, and at Christmas, clean and decorate and bake cookies (mmmm... cookies...) At least I will get lots of time to play with Andy. I am already putting together a otebook of ideas for portable projects and activities that can be done in waiting rooms and office playrooms. :)
Between the Rock and the Hard Place
Well, the jury is in... Andy's articulation problems, according to the insurance, are an educational problem tha should be addressed by the school. According to the school, he isnt actually developmentally delayed by the problem, so it ain't their problem. I can't send him to regular school when no one can understand a word he says. Where have we done this dance before?
So please, everybody buy t-shirts. :P Anybody want to have a bake sale?
So please, everybody buy t-shirts. :P Anybody want to have a bake sale?
Wednesday, May 09, 2007
Just some thoughts about gratitude
I've been reading a lot of blogs lately, and especially Musings of a Highly Trained Monkey (did that work? I'm new to this linking thing). Its a blog about working in the ER, and it has a lot of insights about different kinds of people who present themselves to the ER. Around here, ER bashing is a spectator sport. The local hospital is infamous for poor service, overpriced doctors, and sending people home with inappropriate medications. In fact, there's a lot of bashing of other people and complaining and whining that seems to go on here and there in places I've kind given up visiting because now that I have Autism Hub blogs to read, and there is a LOT less negativity there. But anyway, on to the random thoughts...
I will never forget the people who came to take care of my Joey when he had the croup and was turning blue. Those were incredible, amazing people. I hope they aren't too surprised when I call and ask if Joey can come see the ambulance station this summer, and thank them personally. They hopped right in, made him feel comfortable, let him know everything was going to be just fine, so that for Joey, it was just a fun adventure by the time we got to the ER. The ER nurse was hilarious. He knew a freaking-out-parent when he saw one. Even the nurse who was changing sheets stopped to talk to Joey and try to find cartoons for him on the TV. These people took a situation that was potentially terrifying for my child, and made it into something that included laughter, smiles, and new friends. They made a situation that was terribly stressful on us and made it a walk in the park. I have no idea if they thought I was some stupid person calling 911 over croup. They seemed to be more interested in the fact that they had a child in their care, and to make that child comfortable. We are forever grateful.
On that note, I'd also like to thank the lady in the grocery store the other day who was trying very hard to get Joey to talk with her. He wasn't feeling that great, so he was echoing the questions instead of answering them, yet she remained pleasant and undeterred. She didn't ask, she didn't frown, and she didn't treat him like an idiot or a spoiled brat. She took him as he was, and when his own words failed him, she provided some, without being annoying.
I'd like to thank the bongo drummer at our church who this last Saturday let Joey get up and actually play the drum with the band while they were performing. You could see that Joey thought this was the coolest moment ever. This person has started bringing kazoos to Saturday servicce for the kids. Joey now has two. He plays them all the time (and so does Andy, when he gets hold of one.)
I'd also like to thank the lady who works for Enterprise at our local body shop, who called to get an appropriate vehicle for us and made sure it was waiting for us when we arrived on Tuesday, knowing I had two sick little guys I had to bring with me. I just transferred the carseats and we were on our way. In that vein, I'd like to thank the police officer and the lady that rearended us for being so polite and making a bit of fuss over my boys in making sure they were OK, and telling me how handsome they are. I know how hard it can be to stay nice when you're having a hard day.
And I'd like to thank all the folks who have been leaving me comments here. Sometimes it is just nice to know you're not alone out here.
I will never forget the people who came to take care of my Joey when he had the croup and was turning blue. Those were incredible, amazing people. I hope they aren't too surprised when I call and ask if Joey can come see the ambulance station this summer, and thank them personally. They hopped right in, made him feel comfortable, let him know everything was going to be just fine, so that for Joey, it was just a fun adventure by the time we got to the ER. The ER nurse was hilarious. He knew a freaking-out-parent when he saw one. Even the nurse who was changing sheets stopped to talk to Joey and try to find cartoons for him on the TV. These people took a situation that was potentially terrifying for my child, and made it into something that included laughter, smiles, and new friends. They made a situation that was terribly stressful on us and made it a walk in the park. I have no idea if they thought I was some stupid person calling 911 over croup. They seemed to be more interested in the fact that they had a child in their care, and to make that child comfortable. We are forever grateful.
On that note, I'd also like to thank the lady in the grocery store the other day who was trying very hard to get Joey to talk with her. He wasn't feeling that great, so he was echoing the questions instead of answering them, yet she remained pleasant and undeterred. She didn't ask, she didn't frown, and she didn't treat him like an idiot or a spoiled brat. She took him as he was, and when his own words failed him, she provided some, without being annoying.
I'd like to thank the bongo drummer at our church who this last Saturday let Joey get up and actually play the drum with the band while they were performing. You could see that Joey thought this was the coolest moment ever. This person has started bringing kazoos to Saturday servicce for the kids. Joey now has two. He plays them all the time (and so does Andy, when he gets hold of one.)
I'd also like to thank the lady who works for Enterprise at our local body shop, who called to get an appropriate vehicle for us and made sure it was waiting for us when we arrived on Tuesday, knowing I had two sick little guys I had to bring with me. I just transferred the carseats and we were on our way. In that vein, I'd like to thank the police officer and the lady that rearended us for being so polite and making a bit of fuss over my boys in making sure they were OK, and telling me how handsome they are. I know how hard it can be to stay nice when you're having a hard day.
And I'd like to thank all the folks who have been leaving me comments here. Sometimes it is just nice to know you're not alone out here.
Recovery from Waxing
So Joey sems finally on the mend. We even withstood our ABA therapy for the day, and ate solid food.
Now, remember Joey has not eaten anything in two days. He is drinking juice for me, but I've beenhaving a hard time reintroducing solids, so I haven't pushed it. I provided some crackers and some goldfish, but no go. This afternoon, however, Andy was hungry and let me know it; and JOey joined in the chorus. What do they want?
Cookies.
I was making some for Allan's work (they are having a party or something), so it was known that chocolate-chip delights were in the house. However, since they both have been down-in-the-mouth, I wasn't too worried about it. Silly me.
Now, remember Joey has not eaten anything in two days. He is drinking juice for me, but I've beenhaving a hard time reintroducing solids, so I haven't pushed it. I provided some crackers and some goldfish, but no go. This afternoon, however, Andy was hungry and let me know it; and JOey joined in the chorus. What do they want?
Cookies.
I was making some for Allan's work (they are having a party or something), so it was known that chocolate-chip delights were in the house. However, since they both have been down-in-the-mouth, I wasn't too worried about it. Silly me.
Tuesday, May 08, 2007
Jargon
"What do you need, Andy?"
"awatirnsursrecth."
"Take your thumb out of your mouth, and speak to me sweetie."
"AAAAAAAAA!AWATIRNSURSRECTH!"
"You want something?" "AAAAAAAA!" "What do you want, honey?"
"AWATIRNSURSRECTH!!!!"
"You want a tyrannosaurus rex?"
"Yeth! T-REX!"
"It's in your hand, sweetheart."
"NOOOOOOOOO! T-rex. T-RECTH!"
"You want to watch your T-rex show?"
"YeeeeeeEEEEEEEEEEEEEETH!"
"Sure, we can watch that."
Andy is feeling better. Joey is not, but he's not waxing. I'm feeling like crap, but not waxing yet. Trying to keep a little guy who is feeling as well as he's felt in a week occupied, while you and the other child feel like you've been repeatedly run ver by a Mack truck (or was it a Peterbilt?) can be quite the adventure. I hate to have him watch TV and play with puzzles and whatever all day, when it is gorgoues and he could use the sunshine, but I have to have two eyes on Joey, eve while he's sleeping. Yesterday, he was running both ends, even in his sleep. It might hav been accomplished better if I was feelign OK, and could hang out half-in and half-out of the house, but the less I move, the better. Even typing is exhausting.
The little sample above is actually pretty clear speech for my little Andy. I also know he's a dinosaur freak, and his favorite show, so deciphering the wails wasn't too too difficult. He also has a lot of practice saying these words. Sometimes it brings me to tears trying to figure out what he wants or needs, sifting through the sounds like Sherlock Holmes untangling a code. I'll be glad when we come through the summer and he's had a few onths of speech therapy under his belt. It has to be frustrating for him, poor little boy.
"awatirnsursrecth."
"Take your thumb out of your mouth, and speak to me sweetie."
"AAAAAAAAA!AWATIRNSURSRECTH!"
"You want something?" "AAAAAAAA!" "What do you want, honey?"
"AWATIRNSURSRECTH!!!!"
"You want a tyrannosaurus rex?"
"Yeth! T-REX!"
"It's in your hand, sweetheart."
"NOOOOOOOOO! T-rex. T-RECTH!"
"You want to watch your T-rex show?"
"YeeeeeeEEEEEEEEEEEEEETH!"
"Sure, we can watch that."
Andy is feeling better. Joey is not, but he's not waxing. I'm feeling like crap, but not waxing yet. Trying to keep a little guy who is feeling as well as he's felt in a week occupied, while you and the other child feel like you've been repeatedly run ver by a Mack truck (or was it a Peterbilt?) can be quite the adventure. I hate to have him watch TV and play with puzzles and whatever all day, when it is gorgoues and he could use the sunshine, but I have to have two eyes on Joey, eve while he's sleeping. Yesterday, he was running both ends, even in his sleep. It might hav been accomplished better if I was feelign OK, and could hang out half-in and half-out of the house, but the less I move, the better. Even typing is exhausting.
The little sample above is actually pretty clear speech for my little Andy. I also know he's a dinosaur freak, and his favorite show, so deciphering the wails wasn't too too difficult. He also has a lot of practice saying these words. Sometimes it brings me to tears trying to figure out what he wants or needs, sifting through the sounds like Sherlock Holmes untangling a code. I'll be glad when we come through the summer and he's had a few onths of speech therapy under his belt. It has to be frustrating for him, poor little boy.
Sunday, May 06, 2007
More Waxing
Oh joy. Now they are both waxing. Lovely.
If I don't write for a bit... wish me luck. :P
If I don't write for a bit... wish me luck. :P
Saturday, May 05, 2007
Waxing
I now have our first hint at original, non-scripted, totally spontaneous speech. Whenever someone spits (or spits up), or in fact when anything comes out of someone's mouth, Joey calls it "waxing." We have no clue why.
Andy is still throwing up. We had an unfortunate performance at dinner, and Joey immediately got upset, since he doesn't like messes: "Andy is WAXING!"
So when everyone started calming down, and all that was left was Joey's perservertation ("Andy is waxing.... waxing, Mommy... Andy's waxing!") we asked: why waxing? What does "waxing" mean?
"Joey," Allan asked calmly, "does 'waxing' mean you're sick?"
"Yes," Joey replied. He usually replies "yes" to a "yes/no" question. "Andy is waxing on the floor."
"Why is it 'waxing'?" we asked. Unfortunately, the response to this was so completely incoherent, I couldn't tell you exactly what he said... but it obviously made sense to him.
So "waxing" it is.
Andy is still throwing up. We had an unfortunate performance at dinner, and Joey immediately got upset, since he doesn't like messes: "Andy is WAXING!"
So when everyone started calming down, and all that was left was Joey's perservertation ("Andy is waxing.... waxing, Mommy... Andy's waxing!") we asked: why waxing? What does "waxing" mean?
"Joey," Allan asked calmly, "does 'waxing' mean you're sick?"
"Yes," Joey replied. He usually replies "yes" to a "yes/no" question. "Andy is waxing on the floor."
"Why is it 'waxing'?" we asked. Unfortunately, the response to this was so completely incoherent, I couldn't tell you exactly what he said... but it obviously made sense to him.
So "waxing" it is.
Special Ed Games, Part 354
Joey went over to the elementary school this week with a couple other kids who are going over next year, to check it out (andbe checked out). I got the word the day before. Not much time to prepare a little guy for a big event. They slapped a sticker on his back to identify him, and off they went.
He had a pretty good day, but when he got back to his own school, he walked into a pole, then got upset that his sticker got torn. then he was upset about sing the bathroom (not his favorite thing to do in the first place), and ended up not eating much lunch, but was apparently able to join the class at the table for milk.
I replied to this narration of events with a bit of surprise that they were surprised. They turned his schedule upside down, with practically no notice. Fortunately, it was ABA and OT day, and I got him mostly reigned in, but I know he was upset because he wouldn't talk about it at all, not even with yes/no questions. The therapies headed off the brunt of the repercussions by immiedately providing familiar structure and specialized sensory input. He's had a pretty good week, just still not talking about his "adventure" and a little persnickety, nothing I would consider major.
The teacher's response was that it coudn't have been the change in schedule, because he was so happy during the day in the new school: "So in my view the trip and change in schedule were not the causes for the breakdown because he seemed happy and flexible the entire time we were on the bus and at Hugh Mercer."
Doesn't this person realize that when she makes these changes, it impacts us here at home? That he can hold it together in the moment and even at school, but that overload results in breakdown at home? What is the deal here? If this trip ha been on Tuesday, when all we have is speech, instead of Wednesday, it may have been days before Joey was back on track and not hair-trigger for meltdown.
Meanwhile, Andy was doing better yesterday, but today is back down. I've called the clinic. We'll see if we get new meds.
He had a pretty good day, but when he got back to his own school, he walked into a pole, then got upset that his sticker got torn. then he was upset about sing the bathroom (not his favorite thing to do in the first place), and ended up not eating much lunch, but was apparently able to join the class at the table for milk.
I replied to this narration of events with a bit of surprise that they were surprised. They turned his schedule upside down, with practically no notice. Fortunately, it was ABA and OT day, and I got him mostly reigned in, but I know he was upset because he wouldn't talk about it at all, not even with yes/no questions. The therapies headed off the brunt of the repercussions by immiedately providing familiar structure and specialized sensory input. He's had a pretty good week, just still not talking about his "adventure" and a little persnickety, nothing I would consider major.
The teacher's response was that it coudn't have been the change in schedule, because he was so happy during the day in the new school: "So in my view the trip and change in schedule were not the causes for the breakdown because he seemed happy and flexible the entire time we were on the bus and at Hugh Mercer."
Doesn't this person realize that when she makes these changes, it impacts us here at home? That he can hold it together in the moment and even at school, but that overload results in breakdown at home? What is the deal here? If this trip ha been on Tuesday, when all we have is speech, instead of Wednesday, it may have been days before Joey was back on track and not hair-trigger for meltdown.
Meanwhile, Andy was doing better yesterday, but today is back down. I've called the clinic. We'll see if we get new meds.
Thursday, May 03, 2007
The Good With the Bad
Joey had an excellent extra-primo day today. This was a bit of a surprise, since his schedule was all screwed up yesterday by a field trip to the elementary school, but I'll take it. :) His ABA therapist said he worked really hard for her, and then his OT was really happy with him- they are making a special project that requires cutting, and apparently he's doing it all by himself- and then our music lesson was brilliant. In the past, Joey hasn't wanted to watch and focus on the teacher, he's just wanted to bang on the drums. Today, he paid attention pretty well and followed the lesson along, and played the rhythms (or at least tried to). I am so proud of him! He even alternated the sticking! What a star!
Andy, however, was terribly sick all day. He threw up until about 4 this morning. He kept down some juice and toast for me during the day, but I came home from therapies to a report of a baby throwing up. He slept a lot. He just looked awful. I took him over to the doctor. We have a set of clinics in this area that take walk-ins, and we use them a lot for when the boys are actually sick, because trying to get in to see a doctor around here is always a couple days' wait. I don't know about you, but I certainly wouldn't want a pounding headache-ear infection for two days before I could even get in to a doctor; why would I make a 2-year-old wait two days? I'm probably the kind of parent most docs hate anyway- since my boys can't really tell me what's going on, if they act in certain, unusual ways, I take them in. Tell me its a virus if that's what it is, but please check them, just in case. I think I've been "wrong" once- and two days later, we were back with an ear infection. :P
So I take my bundle of dead weight over to our usual clinic. The problem with walk0in clinics is you never know who the doctor is going to be, and they have a rather high rate of turnover and musical-chairs. However, I've never been outright refused service before. They've hired someone who won't see children. What's up with THAT? At a walk-in clinic that a good many folks use as primary care? You're joking, right? But no- I was told to call my pediatrician (why would I be standing in a walk-in clinic if my pediatrician would see me at 7 o'clock on a Thursday night?) or go to the emergency room (um... the kid isn't in mortal danger. He just needs you to look in his ears). Fortunately, there's also a location in the next town over, so we called ahead (in case I ran into traffic and got there after closing) and off we went. Those people saw us just fine. Double ear infection. Start a new round of Zithromax and see what happens. Woo-hoo!
So far, his fever seems o be down, and he's sleeping, and hasn't tossed the medicine back up. Knock on wood, I think he might get some real rest tonight!
Andy, however, was terribly sick all day. He threw up until about 4 this morning. He kept down some juice and toast for me during the day, but I came home from therapies to a report of a baby throwing up. He slept a lot. He just looked awful. I took him over to the doctor. We have a set of clinics in this area that take walk-ins, and we use them a lot for when the boys are actually sick, because trying to get in to see a doctor around here is always a couple days' wait. I don't know about you, but I certainly wouldn't want a pounding headache-ear infection for two days before I could even get in to a doctor; why would I make a 2-year-old wait two days? I'm probably the kind of parent most docs hate anyway- since my boys can't really tell me what's going on, if they act in certain, unusual ways, I take them in. Tell me its a virus if that's what it is, but please check them, just in case. I think I've been "wrong" once- and two days later, we were back with an ear infection. :P
So I take my bundle of dead weight over to our usual clinic. The problem with walk0in clinics is you never know who the doctor is going to be, and they have a rather high rate of turnover and musical-chairs. However, I've never been outright refused service before. They've hired someone who won't see children. What's up with THAT? At a walk-in clinic that a good many folks use as primary care? You're joking, right? But no- I was told to call my pediatrician (why would I be standing in a walk-in clinic if my pediatrician would see me at 7 o'clock on a Thursday night?) or go to the emergency room (um... the kid isn't in mortal danger. He just needs you to look in his ears). Fortunately, there's also a location in the next town over, so we called ahead (in case I ran into traffic and got there after closing) and off we went. Those people saw us just fine. Double ear infection. Start a new round of Zithromax and see what happens. Woo-hoo!
So far, his fever seems o be down, and he's sleeping, and hasn't tossed the medicine back up. Knock on wood, I think he might get some real rest tonight!
Going to be a Long Night
We had a Special Education Parent Advisory meeting this evening. This is a meeting where parents of kids with special needs are supposed to meet and advise the school personnel about what the school needs to be doing to help these kids. What it actually entails is the school personnel running their mouths as long as possible until the meeting is adjourned and the same five parents can go drinking together and complain about school personnel. I am the Fearless Leader (Chair) of this glorious event. hree years ago when I took on this mission, I thought I could do some good. Oh, the naiveté.
Only one other parent was game for drinking tonight, so we hung out and chattered about what summer was shaping up to for us, and then I went home... to find that I have a child that has been upchucking since bedtime. So about every half-hour, there is this funny cough throught he bay monitor, and I'm off to clean the room again. I have no idea how such a little child can hold so much fluid. But it just keeps coming.
So I'm goign to read some blogs and wait it out- at least until Blankie comes out of the dryer.
Only one other parent was game for drinking tonight, so we hung out and chattered about what summer was shaping up to for us, and then I went home... to find that I have a child that has been upchucking since bedtime. So about every half-hour, there is this funny cough throught he bay monitor, and I'm off to clean the room again. I have no idea how such a little child can hold so much fluid. But it just keeps coming.
So I'm goign to read some blogs and wait it out- at least until Blankie comes out of the dryer.
Tuesday, May 01, 2007
A Day Against Disabilism
Every day I am amazed by the rampant disabilism in special education. Here is an education system that is supposed to be designed to help, to support, to give these kids a chance to live independently and get an education; but instead you get full-pitched battles for resources that are not only limited, but designed to meet needs your kid doesn't really have (and in fact, I am finding most of the kids in the system don't have.)
Special education here is designed for severe mental retardation- so long as you don't also have a physical disability. We have a brand-new school here, an upper elementary built from scratch over the last two years. I have a friend who has two severely physically disabled children- whether they are mentally retarded as well is a matter of debate, since their physical disabilities make it impossible for them to acquire speech- and they are debating whether or not to send them to the new upper elementary school. Apparently, the special education classroom would have to be altered to accomodate them because of their wheelchairs and physical therapy needs.
Why? These people were aware of these kids in their system when construction- and even design- began. Besides, they likely won't be the only kids in wheelchairs they'll ever have. Why, in this day and age, would you design a BRAND NEW SCHOOL that is not fully accessible?
Now, let's go back to the speech thing. These kids' mouths are not formed properly, and speech is probably physically impossible for them (I defer to her expetise of the mom in this matter; I don't know the particulars). Little attempt has been made to give them an alternate form of communication. You'd think the school would work hard to give them some form of communication, even if it is simple switches or large buttons with pre-recorded phrases, so that these guys could at least communicate some of their needs. I am thinking seriously of buying such buttons for them for the summer, and having my cousin's boys (who are about the same age) record simple messages (like "yes, please!" and "no, thank you") and see if these guys would use them. They are 8 years old, and have no way to tell their mom they need something, other than tugging on her clothes. And why? Because they can't speak, they're not supposed to communicate?
These are the challenges of two boys who have obvious, clearly visible disabilities. People know they need help, it is blatantly obvious they need skills, accomodations, equipment, nursing care, aides, respite, the works. They have terrible problems getting these things. It took them years to get medicaid waivers. The school doesn't recognize their skill needs, and they have no academic goals for them- any progress is considered sufficient. I can only assume that is because such severely disabled children are not usually expected to live to see Upper Elementary- by people without disabilities. They are "low functioning" and will "always be dependent"... so the attitude- more or less subtle- is, "why waste resources on them"?
Skip to my own child. Joey talks. If you are not familiar with Oobi, Little Bear, Pinky Dinky Doo, Blue's Clues, Cars, Toy Story, and Franklin, you might miss that every word he says is based on words he's heard before. He likes other children, and has some stock phrases to start contact, but then he doesn't know what to do, especially if a children reacts in an unusual way- which is any way other than how Andy would react. He knows his letter, his numbers, his colors, can write his name, and can match and sort and make patterns- if you can get him to sit down long enough to show you. What chance has this child, whose disability is not so apparent, have at getting accomodations in a world that wants him to be invisible?
At least, they say they want him to be invisible- but then won't address anything that is actually visible, or do it ways hat would be sublte and acceptable in a "mainstream" environment. Needs to chew? Gum is a no-no, lets give him a chew toy. That chewing gum is far more "invisible" than having a plastic tube in you mouth is beside the point. And who needs brushing? That takes too much time, it has to be done every two hours, after all! Food issues are the parents' problem- we put the food we are serving in front of him. But you want to send in food? That's too much work for the teacher and aide. Social skills? Toss him in the gym with the HeadStart kids and hope he figures it out! After all, that's how other kids learn social skills...
And these people are special educators- he's in self-contained environment, not even an inclusion setting!
What is disabilism? It is an attitude that people who are not facing the challenges of disability are inherently superior. That their ways of coping and interacting are innately superior and preferred. That people with disabilities are, somehow, not as human, and have less right to try for independence and education. That people without a disability somehow know what is right and proper for people who do. That people who need support and accomodation are somehow children; or if they are children, that they are babies.
It is also the assumption that people shouldn't need to be accommodated, shouldn't need support, shouldn't have "special needs." The shock special education personnel keep displaying that their kids might have special needs is discouraging. How far would their day get without their coffee? Their few minutes of favorite music? Perhaps a cushion on the driver's seat, or hot water in their shower? Perhaps they like their food a certain temperature? We all need to be accomodated in certain ways to cope with living and functioning. To say my child's accomodations are unacceptable, just because they are unusual or different, is ridiculous. To deny him education in learning to self-regulate is equally ridiculous. It is discrimination.
Special education here is designed for severe mental retardation- so long as you don't also have a physical disability. We have a brand-new school here, an upper elementary built from scratch over the last two years. I have a friend who has two severely physically disabled children- whether they are mentally retarded as well is a matter of debate, since their physical disabilities make it impossible for them to acquire speech- and they are debating whether or not to send them to the new upper elementary school. Apparently, the special education classroom would have to be altered to accomodate them because of their wheelchairs and physical therapy needs.
Why? These people were aware of these kids in their system when construction- and even design- began. Besides, they likely won't be the only kids in wheelchairs they'll ever have. Why, in this day and age, would you design a BRAND NEW SCHOOL that is not fully accessible?
Now, let's go back to the speech thing. These kids' mouths are not formed properly, and speech is probably physically impossible for them (I defer to her expetise of the mom in this matter; I don't know the particulars). Little attempt has been made to give them an alternate form of communication. You'd think the school would work hard to give them some form of communication, even if it is simple switches or large buttons with pre-recorded phrases, so that these guys could at least communicate some of their needs. I am thinking seriously of buying such buttons for them for the summer, and having my cousin's boys (who are about the same age) record simple messages (like "yes, please!" and "no, thank you") and see if these guys would use them. They are 8 years old, and have no way to tell their mom they need something, other than tugging on her clothes. And why? Because they can't speak, they're not supposed to communicate?
These are the challenges of two boys who have obvious, clearly visible disabilities. People know they need help, it is blatantly obvious they need skills, accomodations, equipment, nursing care, aides, respite, the works. They have terrible problems getting these things. It took them years to get medicaid waivers. The school doesn't recognize their skill needs, and they have no academic goals for them- any progress is considered sufficient. I can only assume that is because such severely disabled children are not usually expected to live to see Upper Elementary- by people without disabilities. They are "low functioning" and will "always be dependent"... so the attitude- more or less subtle- is, "why waste resources on them"?
Skip to my own child. Joey talks. If you are not familiar with Oobi, Little Bear, Pinky Dinky Doo, Blue's Clues, Cars, Toy Story, and Franklin, you might miss that every word he says is based on words he's heard before. He likes other children, and has some stock phrases to start contact, but then he doesn't know what to do, especially if a children reacts in an unusual way- which is any way other than how Andy would react. He knows his letter, his numbers, his colors, can write his name, and can match and sort and make patterns- if you can get him to sit down long enough to show you. What chance has this child, whose disability is not so apparent, have at getting accomodations in a world that wants him to be invisible?
At least, they say they want him to be invisible- but then won't address anything that is actually visible, or do it ways hat would be sublte and acceptable in a "mainstream" environment. Needs to chew? Gum is a no-no, lets give him a chew toy. That chewing gum is far more "invisible" than having a plastic tube in you mouth is beside the point. And who needs brushing? That takes too much time, it has to be done every two hours, after all! Food issues are the parents' problem- we put the food we are serving in front of him. But you want to send in food? That's too much work for the teacher and aide. Social skills? Toss him in the gym with the HeadStart kids and hope he figures it out! After all, that's how other kids learn social skills...
And these people are special educators- he's in self-contained environment, not even an inclusion setting!
What is disabilism? It is an attitude that people who are not facing the challenges of disability are inherently superior. That their ways of coping and interacting are innately superior and preferred. That people with disabilities are, somehow, not as human, and have less right to try for independence and education. That people without a disability somehow know what is right and proper for people who do. That people who need support and accomodation are somehow children; or if they are children, that they are babies.
It is also the assumption that people shouldn't need to be accommodated, shouldn't need support, shouldn't have "special needs." The shock special education personnel keep displaying that their kids might have special needs is discouraging. How far would their day get without their coffee? Their few minutes of favorite music? Perhaps a cushion on the driver's seat, or hot water in their shower? Perhaps they like their food a certain temperature? We all need to be accomodated in certain ways to cope with living and functioning. To say my child's accomodations are unacceptable, just because they are unusual or different, is ridiculous. To deny him education in learning to self-regulate is equally ridiculous. It is discrimination.
Sunday, April 29, 2007
Another Happy Sunday
With a dose of allergy meds, the boys went to church this morning after all. The Sunday School teacher and I had a little chat. Apparently, they've given up on days when the director isn't here to be his aide, and he wanders about and does whatever. Not what I wanted to hear, but they haven't tossed us out yet, so we'll keep working on it. It would be nice to have an aide in there for him, because with his gum, he is able to sit and attend- but still needs a little reminding that the rules apply to him. They also now have too many kids in there to keep track of his sensory stuff, and having someone in there could make sure he got his vibrator or his gum or his chair cushion when he needed it, and teach him to get these things for himself. But he makes it through, he's in with kids his own age, and nobody's gotten hurt. So that's a good thing.
The boys were still antsy, so I took them out to Wakefield. This is a regular trip for us, I'm sure I've blogged about it before, but I'm no going to swim through right now to check, and for those of you who just pick up blogs where they are, I'll save you from wading as well. Wakefield is the birthplace of George Washington. It is a working colonial farm, with animals and everything. It's also a pretty safe place to let the boys run, and not a lot of people go there. So we go there a lot when the weather is good. I took some pictures today of things to make up a nature walk list, and while I was at it, I took lots of boy pictures and movies. They like seeing themselves on the TV, so I thought I'd make a little DVD. Besides, its calming. This is the calm before the week's storm...
We've decided that putting Joey into the speech and OT camps is the best option for him. Its going to be a little rough on me, and I have to figure out what to do with Andy (as in, what we can do together, not what shelf I am going to put him on), but if he can do intensive therapy this summer, maybe we can at least get him going with using his sensory book himself, make sure he can dress and undress himself, and do some other things in groups and independently, that will help him in kindergarden. I can also control his schedule better, so I can do the brushing and work on the oral issues (ie, get him to eat more foods). So this week I'm going to call up and say, "Since you guys were ammenable to this- this is what will happen." I expect them to promptly start having small bovines. If they don't, you'll be sure to know.
Because the boys can run at Wakefield, I end up taking a lot of photos of their backs. It seems strange for them to be walking on ahead like that. Most places, I have to have them firmly by their hands, so I mostly see the tops of their heads. At Wakefield, they run on ahead, checking out their freedom and the world around them. My boys get a chance to grow up a bit.
I like going to Wakefield. I think they do, too.
Saturday, April 28, 2007
And so it goes
Usually on Saturday evening, Joey and I saunter over to the church to listen to the band. Joey likes music, especially involving drums and guitars, and since there arent a lot of people at the Saurday service, it gives us a chance to get hi used to the sanctuary and going to church and stuff without having too many people jostling him and making him nervous.
But tonight he would not sit down. Even when they started, all he could do was track, track,track. Track the banister, track the pews, track the cords for the guitars, track a seam in the carpet. Then he wanted to run out to the street, out into the halls, up and down the main aisle. Track. track, track.
This means one thing:
Joey is coming down with something.
This is really depressing, because we just finished a round of antibiotics because he had never recovered from teh croup. It means if he goes to Sunday school tomorrow, he will probably have a bad day and need the director to come be the aide again. We might not go at all, trying to head off the storm. He's already missed a week of school, so his schedule has already been a complete mess.
On a more selfish note, it also means I didn't get to sit with him for the half-hour to listen to the music while hugging a Boy- something I really could have used this week.
But tonight he would not sit down. Even when they started, all he could do was track, track,track. Track the banister, track the pews, track the cords for the guitars, track a seam in the carpet. Then he wanted to run out to the street, out into the halls, up and down the main aisle. Track. track, track.
This means one thing:
Joey is coming down with something.
This is really depressing, because we just finished a round of antibiotics because he had never recovered from teh croup. It means if he goes to Sunday school tomorrow, he will probably have a bad day and need the director to come be the aide again. We might not go at all, trying to head off the storm. He's already missed a week of school, so his schedule has already been a complete mess.
On a more selfish note, it also means I didn't get to sit with him for the half-hour to listen to the music while hugging a Boy- something I really could have used this week.
A Reminder!
May 1 is "Blogging Against Disablism Day." Let's all raise the call that people with disabilities are, first and foremost, people. I look forward to spending a lot of time online on Tuesday, reading everybody's thoughts and ideas about what it really means to be human- for everyone.
Friday, April 27, 2007
Who are these people, and what did they do with my IEP team?
Mom and I walked in to the strangest IEP meeting I have ever been to. This was the meeting for Extended School Year (summer services). These meetings have been a right royal fight for everyone here every year. Usually its a lot of wrangling to even be able to call a school person for advice at any point, and they complain as they fill out the paperwork.
Not this year.
Apparently, Joey's behaviors have been unavoidable this year. He's not a danger, but the slamming fo doors, clicking, and tracking have apparently been well noted and been very disrupting. It was decided that he qualified on that ground alone. I was shocked. Not only did he qualify, but I have a peice of paper here that says he will get 2.75-3.5 hours per day, five days a week, for eight weeks! I know th edoc wants 25 hours a week, but folks, this much ESY is UNHEARD OF here.
I have heard there are at least three other parents headed to mediation right now. I wonder if that has a bearing. OR maybe someone wants to try to put together a real summer program, and this gives them an excuse. Or maybe the immanent retirement of our esteemed director of special ed. Or maybe someone finally told these people to shut thir mouths and open their brains. Joey's teacher even stood up to our mouthy OT. It was incredible. I was beside myself.
So we have the documents. We're hoping to pin down the exact nature of the program before we put our names to it. We know the amount of time, the duration, that sort of thing, but what exactly will this be? The camps I want, or an in-house program? We made clear that we need to know soon, so I can reserve spaces.
Not this year.
Apparently, Joey's behaviors have been unavoidable this year. He's not a danger, but the slamming fo doors, clicking, and tracking have apparently been well noted and been very disrupting. It was decided that he qualified on that ground alone. I was shocked. Not only did he qualify, but I have a peice of paper here that says he will get 2.75-3.5 hours per day, five days a week, for eight weeks! I know th edoc wants 25 hours a week, but folks, this much ESY is UNHEARD OF here.
I have heard there are at least three other parents headed to mediation right now. I wonder if that has a bearing. OR maybe someone wants to try to put together a real summer program, and this gives them an excuse. Or maybe the immanent retirement of our esteemed director of special ed. Or maybe someone finally told these people to shut thir mouths and open their brains. Joey's teacher even stood up to our mouthy OT. It was incredible. I was beside myself.
So we have the documents. We're hoping to pin down the exact nature of the program before we put our names to it. We know the amount of time, the duration, that sort of thing, but what exactly will this be? The camps I want, or an in-house program? We made clear that we need to know soon, so I can reserve spaces.
Thursday, April 26, 2007
Life is like a bowl of cherries
I don't get much sleep in the week before an IEP meeting. Even with one like this, where I have a plan, I get insomnia. When I get insomnia, I often end up with bad analogies and t-shirt slogans. Then I torture you with them. ;)
This one is "what its like to wok with our school OT.” I know disease references might seem offensive to some folks, but they do get across the sense of importance of the situation.
You're sick, and you suspect there may be something wrong with your endocrine system. There is only one endocrinologist covered by your insurance, so off you go. He does some tests, and tells you that you have diabetes. When you look at the results of the tests, they look bad, and you start some treatment for diabetes.
After a year, your test results come back with slightly better sugar numbers- let's say, 250, when you now know you're supposed to be under 90; but its better than the 300 you were. After a small lecture on how painful needles can be and the risks of insulin, you start a little insulin. In the meantime, another doctor you're seeing for a skin rash looks at your records and suggests you see an out-of-network endocrinologist who specializes in diabetes (note- for those of you unfamiliar with diabetes, you can get a skin rash if your sugar gets too high). Doubtful that there is much else to be done, because the doctor has been telling you that everything necessary is being done, you decide it can't hurt to have a second opinion.
To your shock, you are told that yes, you have diabetes... and pancreatic cancer. As you look over the tests, including one that most endocrinologists consider standard, but your other doctor didn't even do, it is practically staring you in the face.
Your other doctor remains skeptical, so you decide to get a third opinion. That also comes back screaming "pancreatic cancer!" (which would, of course, explain why you're diabetic). You take these reports back to your doctor, and note that both of the other endocrinologists recommend cancer treatments. Your doctor replies with bringing you some literature about cancer treatments, while telling you that these treatments are all extremely painful and risky, and you *could* try them, but why bother? Your sugar is improving with the treatment you are getting, and its the diabetes that needs to be controlled. You insist on at least some treatment for some of your other symptoms that have been revealed by the other testing, and to get your sugars under control. The doctor reluctantly gives you an increase in insulin.
In the meantime, not being an idiot, you begin cancer treatment with one of the other doctors. In trying to get your sugars under control, the new doctor suggests you might want to eat certain kinds of foods that are low in sugar. You take this to your first doctor. They freak out. They tell you that you need carbohydrates in your diet. They scream something about Atkins and South Beach diets. They tell you the cafeteria can't handle this particular request because of dietary rules. You note that the new diet seems to be helping to control your sugar, so they contact your second doctor and ask them to change their recommendation. Needless to say, doctor #2 is highly offended, and responds that dietary control of diabetes is extremely common, and her first duty is to her client, not convenience. The first doctor permits the diet, but still tells you they don't like it and you should eat plenty of carbs. You go to their boss. That boss tells you no one has ever complained about the endocrinologist, and he has to be able to treat pancreatic cancer, because the law says so, and when the boss talked to the doc, the doc seemed very enthusiatic about the new diet. He won't pay for the treatment you've been receiving from the other doctor, period.
It has now been another six months, trying to get this all in place. You first doctor does some tests without your knowledge. At your next appointment, he presents the results, saying, "You're are now doing so well on the insulin... wow, 100! You may not need that insulin anymore! And look! Your cancer has been cured!"
And I'm supposed to have confidence in this person?
This one is "what its like to wok with our school OT.” I know disease references might seem offensive to some folks, but they do get across the sense of importance of the situation.
You're sick, and you suspect there may be something wrong with your endocrine system. There is only one endocrinologist covered by your insurance, so off you go. He does some tests, and tells you that you have diabetes. When you look at the results of the tests, they look bad, and you start some treatment for diabetes.
After a year, your test results come back with slightly better sugar numbers- let's say, 250, when you now know you're supposed to be under 90; but its better than the 300 you were. After a small lecture on how painful needles can be and the risks of insulin, you start a little insulin. In the meantime, another doctor you're seeing for a skin rash looks at your records and suggests you see an out-of-network endocrinologist who specializes in diabetes (note- for those of you unfamiliar with diabetes, you can get a skin rash if your sugar gets too high). Doubtful that there is much else to be done, because the doctor has been telling you that everything necessary is being done, you decide it can't hurt to have a second opinion.
To your shock, you are told that yes, you have diabetes... and pancreatic cancer. As you look over the tests, including one that most endocrinologists consider standard, but your other doctor didn't even do, it is practically staring you in the face.
Your other doctor remains skeptical, so you decide to get a third opinion. That also comes back screaming "pancreatic cancer!" (which would, of course, explain why you're diabetic). You take these reports back to your doctor, and note that both of the other endocrinologists recommend cancer treatments. Your doctor replies with bringing you some literature about cancer treatments, while telling you that these treatments are all extremely painful and risky, and you *could* try them, but why bother? Your sugar is improving with the treatment you are getting, and its the diabetes that needs to be controlled. You insist on at least some treatment for some of your other symptoms that have been revealed by the other testing, and to get your sugars under control. The doctor reluctantly gives you an increase in insulin.
In the meantime, not being an idiot, you begin cancer treatment with one of the other doctors. In trying to get your sugars under control, the new doctor suggests you might want to eat certain kinds of foods that are low in sugar. You take this to your first doctor. They freak out. They tell you that you need carbohydrates in your diet. They scream something about Atkins and South Beach diets. They tell you the cafeteria can't handle this particular request because of dietary rules. You note that the new diet seems to be helping to control your sugar, so they contact your second doctor and ask them to change their recommendation. Needless to say, doctor #2 is highly offended, and responds that dietary control of diabetes is extremely common, and her first duty is to her client, not convenience. The first doctor permits the diet, but still tells you they don't like it and you should eat plenty of carbs. You go to their boss. That boss tells you no one has ever complained about the endocrinologist, and he has to be able to treat pancreatic cancer, because the law says so, and when the boss talked to the doc, the doc seemed very enthusiatic about the new diet. He won't pay for the treatment you've been receiving from the other doctor, period.
It has now been another six months, trying to get this all in place. You first doctor does some tests without your knowledge. At your next appointment, he presents the results, saying, "You're are now doing so well on the insulin... wow, 100! You may not need that insulin anymore! And look! Your cancer has been cured!"
And I'm supposed to have confidence in this person?
Wednesday, April 25, 2007
Round 2
Oh, yes, I got the email this morning: "I didn't say that! I said we have to be careful interpreting the results!"
Right. Does that mean you don't show care in interpreting the results of other tests and evaluations?
This is NOT increasing my confidence in this woman. It certainly shows me that she is 1. Not familiar with this test and 2. not familiar with how to properly consider the results. She's surprised that we would want to know this information, to look for gaps in Joey's skills. Why on earth would we want to know this information?
I thought we were about to write an IEP?
Right. Does that mean you don't show care in interpreting the results of other tests and evaluations?
This is NOT increasing my confidence in this woman. It certainly shows me that she is 1. Not familiar with this test and 2. not familiar with how to properly consider the results. She's surprised that we would want to know this information, to look for gaps in Joey's skills. Why on earth would we want to know this information?
I thought we were about to write an IEP?
Tuesday, April 24, 2007
Battles
For some reason, the school OT just can't say the words," yes, ma'm." I can only imagine it is a matter of pride. If she doesn't fight me on every single request or suggestion I make, she loses some kind of brownie point somewhere. She keeps sayign she wants to get along with me, then won't STFU.
I have requested the school evaluate Joey using ABLLS (Assessment of Basic Language and Learning Skills). It is a test designed to check on skills needed for 5-7 year-olds to function. It is commonly used to test preschoolers, to give educators a gauge of the skills needed for elementary school, including kindergarden. It also is often used to design ABA programs. It is not a comprehensive test, but it does test skills that are not covered in other common gauges, such as the LAP-D, and is designed specifically for kids (like Joey) who have language problems or delays. Back in September, I kept asking what skills Joey would need for kindergarden, and was basically told "we'll take care of it." So I am already annoyed to discover there was a test they could have given him to find the gaps in his skills and address some of them. However, I am far more annoyed at the email I got from the %&$^#*! OT today. It basically says "well, he doesn't need to do all this stuff for kindergarden. It won't tell us anything his teachers don't already know. It won't give us an age equivalency or standard score. This is usually given to low-functioning kids." In other words, "What are you having us do this for? I don't want to bother."
Of course he doesn;t need it all for kindergarden. But he needs some of it, and this will tell us some of things he may be lacking. It will tell us some of his strengths as well as some of his deficits. It is a yes/no sort of thing- either he can do the skill listed, or he can't. Its not about age equivalency, it is about tracking actual mastery of actual, functional skills.
These teachers that know him so well had to be fought to get him goals for bilateral co-ordination, social conversation, and visual motor skills. They were shocked that he needs sensory accomodations. Joey is just a barrel FULL of surprises!
I asked for the test. They do it in the fall (why bother? The IEP is being written NOW). I asked for it by NAME.
The proper response is "Yes, Ma'm."
I have requested the school evaluate Joey using ABLLS (Assessment of Basic Language and Learning Skills). It is a test designed to check on skills needed for 5-7 year-olds to function. It is commonly used to test preschoolers, to give educators a gauge of the skills needed for elementary school, including kindergarden. It also is often used to design ABA programs. It is not a comprehensive test, but it does test skills that are not covered in other common gauges, such as the LAP-D, and is designed specifically for kids (like Joey) who have language problems or delays. Back in September, I kept asking what skills Joey would need for kindergarden, and was basically told "we'll take care of it." So I am already annoyed to discover there was a test they could have given him to find the gaps in his skills and address some of them. However, I am far more annoyed at the email I got from the %&$^#*! OT today. It basically says "well, he doesn't need to do all this stuff for kindergarden. It won't tell us anything his teachers don't already know. It won't give us an age equivalency or standard score. This is usually given to low-functioning kids." In other words, "What are you having us do this for? I don't want to bother."
Of course he doesn;t need it all for kindergarden. But he needs some of it, and this will tell us some of things he may be lacking. It will tell us some of his strengths as well as some of his deficits. It is a yes/no sort of thing- either he can do the skill listed, or he can't. Its not about age equivalency, it is about tracking actual mastery of actual, functional skills.
These teachers that know him so well had to be fought to get him goals for bilateral co-ordination, social conversation, and visual motor skills. They were shocked that he needs sensory accomodations. Joey is just a barrel FULL of surprises!
I asked for the test. They do it in the fall (why bother? The IEP is being written NOW). I asked for it by NAME.
The proper response is "Yes, Ma'm."
Saturday, April 21, 2007
Red blocks
Joey loves blocks. Megablocks are especially wonderful things. He doesn't build with them. He carries them around. The Megablocks have larger "pegs" like big circles, and he likes to count them. The line-blocks, with three or four of these pegs in a straight row, are the blocks he loves. The rest rot in the toybox (Andy has already moved on to Duplos).
I work on Saturdays. I actually work three jobs, as I teach two places as well, one online and one live. the live class only comes around every couple of years, but I do love it when I have one. The online classes are just OK. Too many students think that having an online course is a lisence to sass the professor or skip the work. Anyway, that's not what I do on Saturdays. On Saturdays, I hole up in my bedroom, in my hubby's oversized recliner, with a computer in my lap, and score GRE writing assessments. (No, I can't tutor anybody, its against my contract. No, I can't grade your essay, its all automated and I have no control over which essays I get. Its all standardized, anyway, so it wouldn't effect your score). On breaks, I do weird stuff like write blog entries and change bedsheets. Its a pretty good deal. Sometimes I even stay in my pajamas for the morning (I'm weird, I like to be dressed).
So I am sitting here, holed up for the day in my comfy chair, when a little face appears at teh door.
The idea of letting the boys come up the stairs without escort is new for us. Joey's motor planning is usually so poor that stairs were a major source of concern and falls. Andy is better, but still, he's not yet 3 years old, and we want to know what he's DOING up here. My house is not exactly clean and neat, and there is plenty of trouble to be found. So much for childproofing.
The other problem with independent stair climbing is that Joey has trouble remember what he came upstairs for, and then just wanders about the upstairs, and finally melts down, because he knows he came up here for something, but what was it? I can sympathize with the frustration there, it happens to me all the time since I was pregnant. If anybody needs anecdotal evicdence that pregnancy causes brain damage, I'm your girl.
So here I am, and aroun the corner comes a little face. "Hi Joey," I say brightly, wondering where Dad is.
"Red four?" he replies in a hopeful question. I'm stunned. He came up the stairs, and knows exactly what he wants. And better yet, I happen to know he left his red blocks- a four and a three, his usual set- right here on the chair. HE knew which room he wanted andd everything!
"Do you want your red blocks?" I ask, to encourage speech.
"Red blocks." Red is Joey's current favorite color. Everything has to be red. I produce the required booty, and the little face lights up. "RED blocks! Thank you!" He fetches them from my hand with a kiss, and is gone.
My baby is growing up.
I work on Saturdays. I actually work three jobs, as I teach two places as well, one online and one live. the live class only comes around every couple of years, but I do love it when I have one. The online classes are just OK. Too many students think that having an online course is a lisence to sass the professor or skip the work. Anyway, that's not what I do on Saturdays. On Saturdays, I hole up in my bedroom, in my hubby's oversized recliner, with a computer in my lap, and score GRE writing assessments. (No, I can't tutor anybody, its against my contract. No, I can't grade your essay, its all automated and I have no control over which essays I get. Its all standardized, anyway, so it wouldn't effect your score). On breaks, I do weird stuff like write blog entries and change bedsheets. Its a pretty good deal. Sometimes I even stay in my pajamas for the morning (I'm weird, I like to be dressed).
So I am sitting here, holed up for the day in my comfy chair, when a little face appears at teh door.
The idea of letting the boys come up the stairs without escort is new for us. Joey's motor planning is usually so poor that stairs were a major source of concern and falls. Andy is better, but still, he's not yet 3 years old, and we want to know what he's DOING up here. My house is not exactly clean and neat, and there is plenty of trouble to be found. So much for childproofing.
The other problem with independent stair climbing is that Joey has trouble remember what he came upstairs for, and then just wanders about the upstairs, and finally melts down, because he knows he came up here for something, but what was it? I can sympathize with the frustration there, it happens to me all the time since I was pregnant. If anybody needs anecdotal evicdence that pregnancy causes brain damage, I'm your girl.
So here I am, and aroun the corner comes a little face. "Hi Joey," I say brightly, wondering where Dad is.
"Red four?" he replies in a hopeful question. I'm stunned. He came up the stairs, and knows exactly what he wants. And better yet, I happen to know he left his red blocks- a four and a three, his usual set- right here on the chair. HE knew which room he wanted andd everything!
"Do you want your red blocks?" I ask, to encourage speech.
"Red blocks." Red is Joey's current favorite color. Everything has to be red. I produce the required booty, and the little face lights up. "RED blocks! Thank you!" He fetches them from my hand with a kiss, and is gone.
My baby is growing up.
Friday, April 20, 2007
Sympathetic Response
I have been having a very strange problem lately. I have been having trouble with filtering and processing sound. I've always had trouble with TVs and being tired- if I'm tired, and you want to talk to me, turn the TV off, or I can't even hear you. But now its like I can't do it at all. If I'm in a room and there are other conversations going, I can't even hear the person speaking to me, and often find I have looked away- even when I know I am being spoken to. It happened today. Miss Carrie, one of our speech therapists, was giving me the latest results from an evaluation she had just completed. I know she was talking to me. I can even tell you some of the words that emerged from her mouth. But all I could hear were the boys, and suddenly I realized I missed the conversation, perhaps she had asked me a question? She was now asking me if I was nervous. About what? Whether Joey was apraxic? About the possibility that even this diagnosis wouldn't get the medical insurance to kick in something? I don;t think it was connected to what I hadn't heard, though. I think she had just noticed I wasn't there anymore. I feel terrible about it, too, because I'm sure it seems rude for me not to focus on her when she's telling me important stuff, and has lengthened her day by an hour to test him for us, and all. I need to do something really nice to thank this person, she really is bending over backwards to help us, and not many people are doing that these days.
But in the meantime, I am definitely seeing an increase in this kind of occurance. One part of me wonders if this is what happens to Joey when he can't focus on a task- because I can't even really tell you where my mind was, I just snapped back and realized it wasn't focusing on what it should have been focusing on. Another part worries if there is something changing, or if this is just a sympathetic sort of response- I am either noticing these things more because I know more about the problems Joey may be facing and autism generally, or they are occuring more as a psychosomatic response to Joey being autistic, and the stress of fighting with the very people who are supposed to be helping us, the "school folk." Or am I just getting old, and this is part of that? Or am I suffering some form of exhaustion, and need to see somebody? Because it really needs to stop. And if this is what its like to be Joey, then I definitely need to help. I worry about it happening when I'm driving. Will I tune out of teh road in favor of the boys, or the radio, or the trees passing by? That would be Not Good.
But in the meantime, I am definitely seeing an increase in this kind of occurance. One part of me wonders if this is what happens to Joey when he can't focus on a task- because I can't even really tell you where my mind was, I just snapped back and realized it wasn't focusing on what it should have been focusing on. Another part worries if there is something changing, or if this is just a sympathetic sort of response- I am either noticing these things more because I know more about the problems Joey may be facing and autism generally, or they are occuring more as a psychosomatic response to Joey being autistic, and the stress of fighting with the very people who are supposed to be helping us, the "school folk." Or am I just getting old, and this is part of that? Or am I suffering some form of exhaustion, and need to see somebody? Because it really needs to stop. And if this is what its like to be Joey, then I definitely need to help. I worry about it happening when I'm driving. Will I tune out of teh road in favor of the boys, or the radio, or the trees passing by? That would be Not Good.
Thursday, April 19, 2007
The Parent Role at an IEP meeting
As I send off my latest request for an IEP meeting, I just had a very sad thought.
Being a parent at an IEP meeting is kind of like being a passesnger on a plane. You are part of the team inteded to result in a pleasant flight, by making sure everything is groovy, and stays groovy, from teh time you get on to the time you get off. Included in this team are the pilots, the attendants, the mechanical crews, the air trafic crontrol folks... you get the idea.
Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under teh seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You ake sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem.
However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do nd exactly when.
Oh, and your flight is already departing from the gate. And if you dont do all of this correctly, of course you will crash. Oh well, sucks to be you.
Being a parent at an IEP meeting is kind of like being a passesnger on a plane. You are part of the team inteded to result in a pleasant flight, by making sure everything is groovy, and stays groovy, from teh time you get on to the time you get off. Included in this team are the pilots, the attendants, the mechanical crews, the air trafic crontrol folks... you get the idea.
Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under teh seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You ake sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem.
However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do nd exactly when.
Oh, and your flight is already departing from the gate. And if you dont do all of this correctly, of course you will crash. Oh well, sucks to be you.
Home Not-Alone
So Joey has now missed a week of school. We've been relaxing and trying to get him to recover from all these infections and coughs and creeping crud. A taste of summer vacation, if you will. I've caught up on my episodes of Pinky Dinky Doo, learned all the Oobi and Ply with Me Sesame games on Noggin, and made that lovely movie. I can't really go anywhere, because of Joey's problems with his antibiotics, and I can't just let them loose in teh yard because of the chilly weather (they're supposed ot be recovering from these colds, not picking up on new ones). We've pretended to be dogs, cats, cows, Space Rangers, Little Bear, Duck, dinosaurs, Little Bear pretending to be a Space Ranger, Mr. Guinea Pig, and racing cars. We've done painting, drawing, coloring, put together puzzles, played trains, played blocks, played with the play-kitchen, played with play-doh, and played with some our big fancy toys, like our Cars playset tent and our racetrack. In other words, it's been like a rainy-day week here.
What shall we do today?
I was thinking of more coloing (to go with Andy's listening therapy) followed by exploring the basement playroom, maybe getting out our tunnels. Then lunch, and storytime. Andy then has his nap, and Joey's therapies start. We have ABA, OT, and a music lesson today. Then we should get home for dinner and bed. Whew!
What shall we do today?
I was thinking of more coloing (to go with Andy's listening therapy) followed by exploring the basement playroom, maybe getting out our tunnels. Then lunch, and storytime. Andy then has his nap, and Joey's therapies start. We have ABA, OT, and a music lesson today. Then we should get home for dinner and bed. Whew!
Tuesday, April 17, 2007
Saturday, April 14, 2007
Ear infections
One thing you need when you are sick is rest. Joey appears to hae an ear infection that is resistant to Zithromax, which sucks, so we changed his antibiotic. Now if only I could get him to SIT DOWN. He has as much energy now as when he's fine! We are trying to tempt him with Oobi and Pinky Dinky Doo games on Noggin's website, but... bounce bounce bounce! IF the child would just take a NAP!
Wednesday, April 11, 2007
A Long Day
So the boy starts to stir about quarter to seven this morning, with a moan and sob, and "My ears hurt!" Just a few direct questions makes it clear- he really did just tell us not only that he is in pain, but that his ears are the specific, actual problem. Holy cow, my son can communicate with me!!!
So I pack up two little boys and head off to the Medic One, a walk-in clinic we tend to use, especially for ear infections. And bingo, we have one. Fill the scrip, give him a dose, pick up grandma, and we're off to Kluge.
Charlottesville is lovely in the spring. 270 was planted for flowey effect, and the redbuds, dogwoods, and cherry trees are in full swing. Very pretty. When we go back next month for Andy, I hope the azaleas will still be in bloom.
Anyway, nothing too new and exciting. Dr. Blackman is still nice, supportive, and very interested in Joey's progress. He wants us to work on social skills. The OT wants us to try brushing. The PT wants him able to climb into a sling-swing. The SLP says he's progressed in receptive language a full standard of deviation, so now he's just breaking into two standards of deviation, instead of being a full 3 standards of deviation behind. So he's made up some ground. We didn't test expressive, but he's about to get a full eval from our private OT anyway. We were just testing the waters. Why, I don't know. I keep calling them saying I want a full eval to get a sense of where he is, and when we get there, they're all just consult appointments. But at least I''l have some letters with "Kluge" in the letterhead saying he needs services. They'll promptly be ignored, but there you are.
We'll probably wait on teh brushing until summer. If I can't get this school OT to even give him gum, I can't see expecting her to do brushing in a supportive, appropriate way. After all, when it was mentioned before, she blew it off as "too difficult, too time-consuming." If it works, what's a little time?
So I pack up two little boys and head off to the Medic One, a walk-in clinic we tend to use, especially for ear infections. And bingo, we have one. Fill the scrip, give him a dose, pick up grandma, and we're off to Kluge.
Charlottesville is lovely in the spring. 270 was planted for flowey effect, and the redbuds, dogwoods, and cherry trees are in full swing. Very pretty. When we go back next month for Andy, I hope the azaleas will still be in bloom.
Anyway, nothing too new and exciting. Dr. Blackman is still nice, supportive, and very interested in Joey's progress. He wants us to work on social skills. The OT wants us to try brushing. The PT wants him able to climb into a sling-swing. The SLP says he's progressed in receptive language a full standard of deviation, so now he's just breaking into two standards of deviation, instead of being a full 3 standards of deviation behind. So he's made up some ground. We didn't test expressive, but he's about to get a full eval from our private OT anyway. We were just testing the waters. Why, I don't know. I keep calling them saying I want a full eval to get a sense of where he is, and when we get there, they're all just consult appointments. But at least I''l have some letters with "Kluge" in the letterhead saying he needs services. They'll promptly be ignored, but there you are.
We'll probably wait on teh brushing until summer. If I can't get this school OT to even give him gum, I can't see expecting her to do brushing in a supportive, appropriate way. After all, when it was mentioned before, she blew it off as "too difficult, too time-consuming." If it works, what's a little time?
Tuesday, April 10, 2007
RED
Today, Joey is five years old! Happy Birthday, Buddha Buddy!
So he got up this morning, and started rummaging through the clean clothes (which tend to sit in the hall with the washer and dryer, rather than being folded and put away in a timely manner). When I asked him what he needed, he said "Red one! I want a red shirt!"
Allow me to stop and pick up my teeth from the floor. He responded to me... in a sentence... expressing a preference. My Joey! What a great birthday present!!!
After a good deal of rummaging, we did finally find a red shirt. I was surprised he didn't have several, usually we have a variety of long-sleeve t-shirts from teh Lands' End Overstocks, but apparently they are all size 6, and have been passed down to Andy, and got mostly replaced by blue and orange shirts (the red ones must not have been on sale). But I finally found one that fit him, and all was groovy. I got him dressed, and started on Andy, who wanted his favorite dinosaur shirt this morning.
Joey started down teh stairs.
Last night, I prepared for the Birthday Morning by setting up a playtent in teh livingroom, and arranging his presents. So as I am dressing Andy, Joey starts down the stairs, and sees teh tent, and says, "Oh! Nice surprise!"
I could have cried.
This burst of verbal-ness is actually something of a shock. It started when he was put on the oxygen during our Croup Crisis a couple weeks ago. He's been using sentences ever since. We know Joey does these burst-breakthroughs, but to have it coincide so perfectly with the oxygen and steroids (he was put on steroids for the croup) is just strange. It was so dramatic, I'm going to have him checked again for allergies, since this steroid helps stem allergic reactions.
Tomorrow is Kluge Day. I don't expect to learn much new, but just to document where we are. I'll keep everybody posted. :)
So he got up this morning, and started rummaging through the clean clothes (which tend to sit in the hall with the washer and dryer, rather than being folded and put away in a timely manner). When I asked him what he needed, he said "Red one! I want a red shirt!"
Allow me to stop and pick up my teeth from the floor. He responded to me... in a sentence... expressing a preference. My Joey! What a great birthday present!!!
After a good deal of rummaging, we did finally find a red shirt. I was surprised he didn't have several, usually we have a variety of long-sleeve t-shirts from teh Lands' End Overstocks, but apparently they are all size 6, and have been passed down to Andy, and got mostly replaced by blue and orange shirts (the red ones must not have been on sale). But I finally found one that fit him, and all was groovy. I got him dressed, and started on Andy, who wanted his favorite dinosaur shirt this morning.
Joey started down teh stairs.
Last night, I prepared for the Birthday Morning by setting up a playtent in teh livingroom, and arranging his presents. So as I am dressing Andy, Joey starts down the stairs, and sees teh tent, and says, "Oh! Nice surprise!"
I could have cried.
This burst of verbal-ness is actually something of a shock. It started when he was put on the oxygen during our Croup Crisis a couple weeks ago. He's been using sentences ever since. We know Joey does these burst-breakthroughs, but to have it coincide so perfectly with the oxygen and steroids (he was put on steroids for the croup) is just strange. It was so dramatic, I'm going to have him checked again for allergies, since this steroid helps stem allergic reactions.
Tomorrow is Kluge Day. I don't expect to learn much new, but just to document where we are. I'll keep everybody posted. :)
Monday, April 09, 2007
Andy
I don't usually say much about Andy here. This blog mostly focuses on autism, and my autistic son. However, today was an Andy Day, and there are clouds on the horizon.
We have Andy doing something called Therapeutic Listening. Its one of those therapies that sounds like a duck, but it can't hurt him, so why not try it? Andy, like me, is highly sensitive to sound, and appears to have some other sensory issues going on that make him dislike crowds, avoid too many people at once (even familiar ones), and get very, very grumpy. He also has been doign a lot more toe-walking. He doesn't appear to be autistic, but appearances? What would I know? We've got an appointment for Dr. Blakcman to give him a look-see in May. In the meantime, we have the Listening. He listens to modulated music for 30 minutes, twice a day. It actually seems to be helping, as he will now listen ot the music on a normal volume (at first, I couldn't even hear it and he would pitch a fit), and will do a single activity for the half-hour, such as playing with playdough or doing puzzles. Who knew?
My private OT.
Anyway, we're also trying to do a general eval, and that is much harder. Andy has a lot of trouble following instructions, espceially from strangers (he does just OK at home). He seems to be doing something very strange- his skills set is all over the place, making the test nearly impossible to score. The joys of standardization. In the meantime, the speech therapist took a look at him. He's having some trouble with articulation. His language use seems to be ok, but understanding what he's saying can be next to impossible. We're going to see if the insurance will cover an eval and therapy for him. Then we shall see what we shall see.
I really don't want him in teh hands of the special ed folks. That's just won't do.
We have Andy doing something called Therapeutic Listening. Its one of those therapies that sounds like a duck, but it can't hurt him, so why not try it? Andy, like me, is highly sensitive to sound, and appears to have some other sensory issues going on that make him dislike crowds, avoid too many people at once (even familiar ones), and get very, very grumpy. He also has been doign a lot more toe-walking. He doesn't appear to be autistic, but appearances? What would I know? We've got an appointment for Dr. Blakcman to give him a look-see in May. In the meantime, we have the Listening. He listens to modulated music for 30 minutes, twice a day. It actually seems to be helping, as he will now listen ot the music on a normal volume (at first, I couldn't even hear it and he would pitch a fit), and will do a single activity for the half-hour, such as playing with playdough or doing puzzles. Who knew?
My private OT.
Anyway, we're also trying to do a general eval, and that is much harder. Andy has a lot of trouble following instructions, espceially from strangers (he does just OK at home). He seems to be doing something very strange- his skills set is all over the place, making the test nearly impossible to score. The joys of standardization. In the meantime, the speech therapist took a look at him. He's having some trouble with articulation. His language use seems to be ok, but understanding what he's saying can be next to impossible. We're going to see if the insurance will cover an eval and therapy for him. Then we shall see what we shall see.
I really don't want him in teh hands of the special ed folks. That's just won't do.
Sunday, April 08, 2007
Easter
We had an interesting morning at church today. The church insisted on having the kids in service today, so they started the service 15 minutes early, then planne to send the kids to Sunday School after "children's time." This meant I had to have Joey in a huge crowd of people (Its EASTER, people!) and then have him sit in front of all those people and try to participate in an activity before going to Sunday school. What a great idea... not.
Fortunately, Joey performed beautifully. There were too many people in the service, so we set up camp in the vestibule. Fortunately, the nursery was open, so Andy got an extra few minutes to play. There was NO WAY he would be able to deal with that many people all at once. Joey wanted to go up and see the instruments, so we ran up the side aisle. Our service has a deaf couple with an interpreter in teh front row; Joey reached the front and the intepreter was there signing, and stopped, fascinated. He had me hold him for a while to hear and bounce to the music, and watch the signing, and he was such a happy little child. When we ran back to the vestibule, it was packed with people; no longer a quiet escape from the crowd. Yet, Joey did not meltdown; instead, he started barking like a dog and tracking the lines in the floor. We got some funny looks, but since he was managing to control himself and make himself comfy, I was prety proud of him.
So Children's Time came at last, and up we went. We sat towards the back of the crowd of children, in front of our deaf friends. The children's pastor had the kids sing a song; I wasn't familiar with it, but JOey was trying hard to sing along, so they must have been teaching it in Sunday School. Of course, his procesing problems meant he remained a verse and half behind, and he was getting frustrated; he knew the others were ahead of him. He sat in my lap and tried, though; I am SO proud of him! And then the amazing thing happened.
The deaf lady caught his attention, and was signing the song to him; and he tried to sign back, and sang along.
The whole visual thing just struck me, then and there. I know Joey is highly visual, and learns best with visual cues and aids. TV is a great boon for us. He just loves the idea of reading. He's a very visual person. But to see him able to process the visual cues so much faster, and actually keep up... I am going to spend some time this afternoon looking for signing classes. It would be such a simple way to help him keep up with the conversation, to be able to give him those visual cues. I know he'll need to get on in the world without signs, but he also will need to keep up with work and lessons, and having a way to help him not lose that ground has to be worth something.
Saturday, April 07, 2007
April Showers Bring May Flowers...
...but April snow is ridiculous. It's the day before Easter, for pity's sake! Allan says we shouldn't dye the eggs- just put them out in the snow. Instant hiding, with the addition of staying chilled.
Thursday, April 05, 2007
Parking
I live on a city street that has no posted signs about parking. It has become something of a bone of contention among the neighbors. The houe next to us has several grown children, an apartment, and two couples living there, and everyone has at least one car. We have three vehicles (two we use regularly, one is a Jeep that we have retained in case of snow and use as a truck). The other three buildings around us are all rentals- a duplex, a house, and three aparments. Guess what? they all have cars. We have a driveway. The people next door have converted their yard to a 3-space parking lot, and they have two lengths of street frontage (they are the corner lot). Yet we still have troubles.
My driveway actually parks two cars, and we used to park the Jeep in the end of it, since it wasn't used much. BUt the folks next door insisted on parking a car in front of our house. Usually, there are two spaces in front of our house, but they inisisted on parking in the middle, so that my husband had no-where to park but across the street, which seemed to us to be rude, to park in front of someone else's house all night long (it was annoying us, after all...) so we learned to park the Jeep out front. Then we had the second space that was just right for my husband's car, and we weren't being complete nuisances by blocking up the street all night long. We didn't leave nasty notes and we didn't call the police, we just parked our car. After all, it is public parking.
Now, what this means is there is no place for mom to park when she comes to help watch my little guy while I drive the other one around to therapy. And there is no-where to park for my therapists who come. They cannot park in the driveway, because I also cannot be blocked in when I have to go to teach; and my mom has a lo of trouble getting in and out of o driveway, since all of these people have large SUVs they park on the street. Besides, I would block her in when I came home, or have to park on teh streetmyself. So to the street she goes. After all, it is public parking.
The folks across the street have started leaving notes on the cars of people who come to my house, implying that it is no longer acceptable" for anyone to park in front of their house. Confused, and not a litle annoyed, I called the police to check on parking regs.
Yep, you guessed it- it is PUBLIC PARKING. As long as they are not blocking driveways, too close to the corner, too close to a hydrant, and close enough to the curb, ANYONE can park ANYWHERE along the street.
Although I have advised my folks to try to park a little bit down the street from these people, sometimes there is little choice. So I put a note on their door asking them to stop harrassing my therapists and respite workers.
I expect to have to start paying for paint jobs soon.
My driveway actually parks two cars, and we used to park the Jeep in the end of it, since it wasn't used much. BUt the folks next door insisted on parking a car in front of our house. Usually, there are two spaces in front of our house, but they inisisted on parking in the middle, so that my husband had no-where to park but across the street, which seemed to us to be rude, to park in front of someone else's house all night long (it was annoying us, after all...) so we learned to park the Jeep out front. Then we had the second space that was just right for my husband's car, and we weren't being complete nuisances by blocking up the street all night long. We didn't leave nasty notes and we didn't call the police, we just parked our car. After all, it is public parking.
Now, what this means is there is no place for mom to park when she comes to help watch my little guy while I drive the other one around to therapy. And there is no-where to park for my therapists who come. They cannot park in the driveway, because I also cannot be blocked in when I have to go to teach; and my mom has a lo of trouble getting in and out of o driveway, since all of these people have large SUVs they park on the street. Besides, I would block her in when I came home, or have to park on teh streetmyself. So to the street she goes. After all, it is public parking.
The folks across the street have started leaving notes on the cars of people who come to my house, implying that it is no longer acceptable" for anyone to park in front of their house. Confused, and not a litle annoyed, I called the police to check on parking regs.
Yep, you guessed it- it is PUBLIC PARKING. As long as they are not blocking driveways, too close to the corner, too close to a hydrant, and close enough to the curb, ANYONE can park ANYWHERE along the street.
Although I have advised my folks to try to park a little bit down the street from these people, sometimes there is little choice. So I put a note on their door asking them to stop harrassing my therapists and respite workers.
I expect to have to start paying for paint jobs soon.
Wednesday, April 04, 2007
Morning Meeting
So I survived the meeting with the school OT. There were severa snide comments made that I could have replied to in a nasty way, and made everything unpleasant, but I was too chicken. Bok bok. Besides, what would it accomplish? I didn't have a tape recorder. I hope I made my position clear: I am not out to "cure" Joey, but I expect the school- and her- to help support him so he can function in a world that is not friendly to autistic living.
Note to school people: here are some comments to steer clear from when you are dealing with a parent who is already upset:
"Gee, you seem so good at research and know so much, I thought you knew everything! I'm always taken aback when there is a hole in your knowledge!"
What the parent hears: "You're a know-it-all. I'm not going to help your kid. You do it."
"We're not against sensory integration. I've set up a sensory room [here] and [here] and I helped set up the one in Joey's classroom!"
What the parent hears: "Now that you complained, I'm doing the minimum I've been told to do so you can't sue us."
"You know, sensory integration won't cure Joey."
No shit, Sherlock. How many presentations have you been to where I explicitly state, "Autism is not cure-able, but it is treatable. We want to help Joey function in a non-autsitic world."? So what I hear is: "I haven't listened to a word you've said."
In the end, I think maybe I ought to go back to school. I need some coursework in OT, Speech, and development. These people are NOT going to help us.
Note to school people: here are some comments to steer clear from when you are dealing with a parent who is already upset:
"Gee, you seem so good at research and know so much, I thought you knew everything! I'm always taken aback when there is a hole in your knowledge!"
What the parent hears: "You're a know-it-all. I'm not going to help your kid. You do it."
"We're not against sensory integration. I've set up a sensory room [here] and [here] and I helped set up the one in Joey's classroom!"
What the parent hears: "Now that you complained, I'm doing the minimum I've been told to do so you can't sue us."
"You know, sensory integration won't cure Joey."
No shit, Sherlock. How many presentations have you been to where I explicitly state, "Autism is not cure-able, but it is treatable. We want to help Joey function in a non-autsitic world."? So what I hear is: "I haven't listened to a word you've said."
In the end, I think maybe I ought to go back to school. I need some coursework in OT, Speech, and development. These people are NOT going to help us.
Tuesday, April 03, 2007
K-I-D... spells... kid!
Joey's favorite toy this minute is a leapfrog phonics writing thing. We haven't been too worried about it up to now. He likes letters, it is comforting for him, and he's been learning to write letters, spell words, and make sounds. the words are the funniest. It has a setting where you can spell out three-letter words, and if it is a word, the toy tells you the word and praises you (K...I...D... spells... Kid! Great job!) When Joey, pressing random letters, discovers not only a word, but a word he knows, he just beams with delight. D-O-G! Dog! Wow!
The problem is that he is starting to perseverate on it. Instead of doing his work, he is echoing the toy. Instead of participating in class, he echoes the toy. Instead of interacting with the world around him, he echoes the toy.
Hence the seeking of a doctor yesterday. Is he uncomfortable, maybe sick? Is he using this toy to comfort himself because he is uncomfortable, unhappy, afraid? Is there something wrong at school? Are we doing something that is making him want t retreat into reciting, echoing, letters? With all the advances he has made, he still can't tell us. He thinks the question "Are you OK?" is, without fail, "I'm OK." Its a form... and increasingly boring one... not communication.
I meet with the school OT in the morning. I haven't much faith. This woman and I have personality clash issues in the first place, and now she's threatening my kid... and has actively worked to deny him service. I'm expecting the whole mess to either last five minutes, or drag on in hell until I have to extract myself to pick up Joey. I wish McDonald's sold beer.
The problem is that he is starting to perseverate on it. Instead of doing his work, he is echoing the toy. Instead of participating in class, he echoes the toy. Instead of interacting with the world around him, he echoes the toy.
Hence the seeking of a doctor yesterday. Is he uncomfortable, maybe sick? Is he using this toy to comfort himself because he is uncomfortable, unhappy, afraid? Is there something wrong at school? Are we doing something that is making him want t retreat into reciting, echoing, letters? With all the advances he has made, he still can't tell us. He thinks the question "Are you OK?" is, without fail, "I'm OK." Its a form... and increasingly boring one... not communication.
I meet with the school OT in the morning. I haven't much faith. This woman and I have personality clash issues in the first place, and now she's threatening my kid... and has actively worked to deny him service. I'm expecting the whole mess to either last five minutes, or drag on in hell until I have to extract myself to pick up Joey. I wish McDonald's sold beer.
Monday, April 02, 2007
Trying to see the doctor
It sometimes amazes me what people expect from children. Joey has been getting cold and clammy, and even sweaty, so I tried to take him in to the doctor this morning. We wanted to be sure it was connected with coming off the steroid, and not anoter problem. Our own doctor can't see him until Thursday... so we often go over to the Medic One, a walk-in clinic. I got there for opening, but we were still fourth in line. OK, I thought. 45 minutes. A little long for kids to wait- and I had both guys with me today- but we'll deal.
An hour and a half and two meltdowns later, we were still waiting. The first people hadn't come out yet. The other folks in teh waiting room were giving us the looks-could-kill scowls and the why-can't-you-control-your-brats frowns (after all, they weren't feeling well, either- why would they want to see two little boys screaming, kicking, and hitting their mom? TWICE?) The staff was getting annoyed with us, too. They couldn't tell me how long it would be. No one could tell me anything. We finally gave up and left. I'm just going to keep Joey quiet for today, and if he's still not right, we'll try again tomorrow.
An hour and a half and two meltdowns later, we were still waiting. The first people hadn't come out yet. The other folks in teh waiting room were giving us the looks-could-kill scowls and the why-can't-you-control-your-brats frowns (after all, they weren't feeling well, either- why would they want to see two little boys screaming, kicking, and hitting their mom? TWICE?) The staff was getting annoyed with us, too. They couldn't tell me how long it would be. No one could tell me anything. We finally gave up and left. I'm just going to keep Joey quiet for today, and if he's still not right, we'll try again tomorrow.
Friday, March 30, 2007
Wednesday, March 28, 2007
Official hoops
We got the official letter from Edd today, the Director of Student Services. Ths is the letter that takes two pages to say "f&*# you." The OT is supposed to meet with my OT and I and "collaborate" on a sensory plan for Joey. Like my private OT works for free, or that we can come up with a single plan, and it is all done. And all of this is supposed to be a "good faith effort" on the part of the school. Like they 've all suddenly had a religious conversion and can now handle sensory issues like professionals. Oh, and I'm supposed to meet privately for "coffee" with the woman who thinks my child needs no summer service, has no coordination issues, and shouldn't have gum because it is "against school rules." Yes. Riiiiiiiiiiiiiiight.
Oh, and it thanks us for being such wonderful advocates for our child. Right. If I'm such a wonderful advocate, why isn't Joey getting an appropriate education? Or rather, why is the free part of that education not appropriate? Because, quite frankly, I suck.
Oh, and it thanks us for being such wonderful advocates for our child. Right. If I'm such a wonderful advocate, why isn't Joey getting an appropriate education? Or rather, why is the free part of that education not appropriate? Because, quite frankly, I suck.
Tuesday, March 27, 2007
Hyacinths
Last fall, my mom bought me more bulbs than normal gardens ever plant. I love bulbs. You put them in the ground, toss some cow manure on them twice a year, and bingo! You have flowers. I don't plant many tulips, they wear out. But hyacinths and daffodils... gimme.
I got to pick the bulbs. We were in a local nursery center, and having a really bad month, and I handpicked each bulb, it was heaven. I managed to get them in teh ground, which is a miracle. And now I am SO glad I did. They are blooming today. It was a warm, sunny delight of a day, and my hyacinths came out, and coming in from class this evening, it just smelled SO wonderful. It makes being tired not so bad when the hyacinths are blooming. You can almost feel the perfume in the air, and when it is still like now, the weight of it hugs you. How can anyone be unhappy when hyacinths are blooming?
I got to pick the bulbs. We were in a local nursery center, and having a really bad month, and I handpicked each bulb, it was heaven. I managed to get them in teh ground, which is a miracle. And now I am SO glad I did. They are blooming today. It was a warm, sunny delight of a day, and my hyacinths came out, and coming in from class this evening, it just smelled SO wonderful. It makes being tired not so bad when the hyacinths are blooming. You can almost feel the perfume in the air, and when it is still like now, the weight of it hugs you. How can anyone be unhappy when hyacinths are blooming?
Having a misery day
I'm tired, I have a sniffle, and I'm feeling really miserable today. If life were left up to me, I'd meet the stupid school OT for coffee, slump in my chair the whole time, smile, and nod, and have this round be over. This woman is not suddenly going to understand sensory issues or deal with them appropraitely, but we have 12 more years stuck with this woman. There aren't any other choices, unless we move or sue. And Im paying too much money in therapies to afford to really sue. Unless I get a fifth job. I'm running out of hours in the day. Andy now needs 2 30-minute sessions of therapeutic listening (anyone else done that?), but that's not so bad, because I just picked times I was playing with him, anyway. Now he plays with headphones on. Only I can't cut any corners; I can't get a si of something to drink or check my email surreptiously, because he'll take the headphones off. WE actually went up a volume setting today, big big stuff apparently. He likes the songs. My garden needs a layer of spring mulch, which for us is a thick layer fo newspaper to keep the weeds down covered by a light, decorative sprinkling of hardwood shredded bark. BUt I never got to it last year. This year isn't looking good, either. I miss my garden. I'm just so tired.
Monday, March 26, 2007
What to do
So the director of Student Services had a meeting with the staff, and our IEP meeting, or whatever, and basically told the OT to get with our OT and us and "colloborate on a plan for Joey's sensory issue that we all feel comfortable with."
Sounds reasonable, doesn't it?
Except that the school OT doesn't do sensory stuff. The problem with teh plan we have right now is that leavin gher to implement it, when she is not skilled to do so, it ludicrous. How can I colloborate on a plan when the only problem with teh plan is qustionable personnel?
And sorry about the work we've already done. We're just screwed with that.
The only thing I can see to do is to move forward as we are... tracking down a lawyer and some educational specialists.
Sounds reasonable, doesn't it?
Except that the school OT doesn't do sensory stuff. The problem with teh plan we have right now is that leavin gher to implement it, when she is not skilled to do so, it ludicrous. How can I colloborate on a plan when the only problem with teh plan is qustionable personnel?
And sorry about the work we've already done. We're just screwed with that.
The only thing I can see to do is to move forward as we are... tracking down a lawyer and some educational specialists.
Saturday, March 24, 2007
What a Day!
So yesterday was quite the adventure. It was the first beautiful Friday we've had in a while, and the kids didn't have Wee Time, so I thought ti would be good to take them somewhere. Joey wasn't feeling good Thursday, but he seemed to be recovered, so I thought Richmond and goat-petting would be an excellent destination.
We were delayed by ome phone calls- the most damaging being one of the lawyers calling to say she wasn't taking new cases, and perhaps I ought to spend my energies making sure his next IEP is "airtight." TO which I could only think, I canput all the OT goals and time in there I want, if its done by a person with an attitude and lack of skill, what good is it? But anyway...
So I packed up the guys and headed out to get some gas. I was about to right-turn-on-red when a little truck cut me off, and I had to brake. I didn't hit him. The person behind me, however, didn't stop in time, and we were bumped. It was more of an annoyance than anything else; there's a dent in my tailgate, but it still works, and no one was hurt. Andy freaked because of teh bang, but soon was giggling with his brother. WE had to wait for a policeman to show up, who was very nice, but it ate our morning.
So instead of heading down to Richmond right away, we went ot World Market and picked up a set of CHinese paints and brushes. I want to show my students how difficult Chinese ink painting really is, and there is no better way than handing them a brush, a stone, and some dry ink, and saying "go for it!" The store was a disaster waiting to happen- little kiosks of grabbables every where. Fortunately, my guys were more interested in each other, and they were perfect little angels. I was so proud of them! We decided to go get Grandma and go on to petting goats, they were so good.
Goat petting is fun. Feeding them is even better. There were peacocks on top of the chicken coop, and Joey found them all by himself- it is such a miracle to have him noticing his environment, but to really explore it to find peacocks way over his head... wow! And when they got tired, they said goodbye to the animals and came along to the car without a lick of trouble. Incredible.
So home we went, and rested for a bit while I made some spaghetti for dinner, and returned more phone calls (Kennedy Krieger, the director fo student services, another possible professional advocate, a couple of law offices). We had a nice dinner, some nice baths, and an OK bedtime (Andy was a bit of a fuss, the time change is a little bit of a mess still). My husband and I setled in for the night with our work.
About 11:30, we heard tow quick barks from Joey's room. Oh no, I thought, croup! And he came in barking, sure enough, so I got the humidifier going in the bathroom, and got settled into the steam with him whil Allan ran to get some meds for him. He had been gone... five minutes? Not ten... and Joey started to scream with every breath, "I'm broken! I'm broken!" OK, the mist isn't working, I thought, I'll get his shoes on and take him over to emergency when Allan gets back. I carried him down the stairs. I foudn the shoes. I took up Joey's foot in my hand. It was cold.
It was blue.
I ran to the door. No Allan.
I called 9-1-1. The dispatcher was very professional, and I rubbed Joey's hands and talked to him until we could hear the ambulance. He asked for Daddy, he asked for Grandma. Broken-broken-broken- all gone. He said he could hear the ambulance, and I told him they wer coming to help, help was coming, the doctor was coming. Allan arrived just as the ambulance and the fire truck did. THey put an oxygen mask on him, and he was better within a minute. The blue faded. He smiled at me, at the paramedic, and he looked for his Daddy. We told him he would get to ride in the ambulance, and he seemed happy about that, sitting up on the stretcher like a big, big boy and letting them strap him in.
I got into teh ambulance with him. He was turning slowly pink again. We were waiting for him to stabilize, and they switched to blow-by. He was giving high-fives to one ofthe paramedics. They asked him some questions, and he was answering and responding to them pretty well. Then he said, "All fixed now. Thank you. I feel better."
The ride was fun for him. He liked getting the x-rays taken. He didn't like the medicine much, but he did OK with teh mask and the all. We finally went home about 3 am. On the way home, Allan said, "Hey, Joey, Did you have fun? Want to do this again tomorrow?"
To which that silly boy replied, "oh, YES! I had fun!"
We were delayed by ome phone calls- the most damaging being one of the lawyers calling to say she wasn't taking new cases, and perhaps I ought to spend my energies making sure his next IEP is "airtight." TO which I could only think, I canput all the OT goals and time in there I want, if its done by a person with an attitude and lack of skill, what good is it? But anyway...
So I packed up the guys and headed out to get some gas. I was about to right-turn-on-red when a little truck cut me off, and I had to brake. I didn't hit him. The person behind me, however, didn't stop in time, and we were bumped. It was more of an annoyance than anything else; there's a dent in my tailgate, but it still works, and no one was hurt. Andy freaked because of teh bang, but soon was giggling with his brother. WE had to wait for a policeman to show up, who was very nice, but it ate our morning.
So instead of heading down to Richmond right away, we went ot World Market and picked up a set of CHinese paints and brushes. I want to show my students how difficult Chinese ink painting really is, and there is no better way than handing them a brush, a stone, and some dry ink, and saying "go for it!" The store was a disaster waiting to happen- little kiosks of grabbables every where. Fortunately, my guys were more interested in each other, and they were perfect little angels. I was so proud of them! We decided to go get Grandma and go on to petting goats, they were so good.
Goat petting is fun. Feeding them is even better. There were peacocks on top of the chicken coop, and Joey found them all by himself- it is such a miracle to have him noticing his environment, but to really explore it to find peacocks way over his head... wow! And when they got tired, they said goodbye to the animals and came along to the car without a lick of trouble. Incredible.
So home we went, and rested for a bit while I made some spaghetti for dinner, and returned more phone calls (Kennedy Krieger, the director fo student services, another possible professional advocate, a couple of law offices). We had a nice dinner, some nice baths, and an OK bedtime (Andy was a bit of a fuss, the time change is a little bit of a mess still). My husband and I setled in for the night with our work.
About 11:30, we heard tow quick barks from Joey's room. Oh no, I thought, croup! And he came in barking, sure enough, so I got the humidifier going in the bathroom, and got settled into the steam with him whil Allan ran to get some meds for him. He had been gone... five minutes? Not ten... and Joey started to scream with every breath, "I'm broken! I'm broken!" OK, the mist isn't working, I thought, I'll get his shoes on and take him over to emergency when Allan gets back. I carried him down the stairs. I foudn the shoes. I took up Joey's foot in my hand. It was cold.
It was blue.
I ran to the door. No Allan.
I called 9-1-1. The dispatcher was very professional, and I rubbed Joey's hands and talked to him until we could hear the ambulance. He asked for Daddy, he asked for Grandma. Broken-broken-broken- all gone. He said he could hear the ambulance, and I told him they wer coming to help, help was coming, the doctor was coming. Allan arrived just as the ambulance and the fire truck did. THey put an oxygen mask on him, and he was better within a minute. The blue faded. He smiled at me, at the paramedic, and he looked for his Daddy. We told him he would get to ride in the ambulance, and he seemed happy about that, sitting up on the stretcher like a big, big boy and letting them strap him in.
I got into teh ambulance with him. He was turning slowly pink again. We were waiting for him to stabilize, and they switched to blow-by. He was giving high-fives to one ofthe paramedics. They asked him some questions, and he was answering and responding to them pretty well. Then he said, "All fixed now. Thank you. I feel better."
The ride was fun for him. He liked getting the x-rays taken. He didn't like the medicine much, but he did OK with teh mask and the all. We finally went home about 3 am. On the way home, Allan said, "Hey, Joey, Did you have fun? Want to do this again tomorrow?"
To which that silly boy replied, "oh, YES! I had fun!"
Thursday, March 22, 2007
Strangeness
It is very strange to relate the same story half a dozen times, and always get the same reaction... "So... have you found a good lawyer yet?"
Relating our meeting on Wednesday, before even mentioning that we were thinking its time for a lawyer, this has been, without exception, the first comment from everyone I have spoken to.
It is very strange.
Why should people need lawyers to get what the law already says is their right? And why should it be so common to need one that whole firms do nothing else but this specific type of law? Are schools really this stupid? For the $200 grand its going to cost for one due process, they could put together a decent in-house autism program, especially in a little system like this one. But instead they pay all that money to lawyers. Or spend all that energy in divide- and-conquer, instead of using it to help kids. What planet is this, anyway?
Relating our meeting on Wednesday, before even mentioning that we were thinking its time for a lawyer, this has been, without exception, the first comment from everyone I have spoken to.
It is very strange.
Why should people need lawyers to get what the law already says is their right? And why should it be so common to need one that whole firms do nothing else but this specific type of law? Are schools really this stupid? For the $200 grand its going to cost for one due process, they could put together a decent in-house autism program, especially in a little system like this one. But instead they pay all that money to lawyers. Or spend all that energy in divide- and-conquer, instead of using it to help kids. What planet is this, anyway?
Wednesday, March 21, 2007
Anybody out there know a good lawyer?
We need one licensed in Virginia. Unfortunatle, that's our update from here.
Thank you.
Thank you.
Having a Stimmy Week
The return of the tracking has been something of a shock for us. WE know it comes and goes, like everybody's moods, but holy crap, he's putting his eyes right to things to track them, or to watch numbers. He hasn't been this bad since school started 2 /2 years ago! It is distressing to us, because usually this means HE is stressed. The question is, why? Is he just stressed because his brain is moving forward and doing new things, or is there a real concern- like something going on at school we should know about?
While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...
I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.
Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!
While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...
I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.
Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!
Monday, March 19, 2007
Therapeutic Listening
So Andy has been having some issues with noise and sound, so we signed him up for therapeutic listening. This is a program where the child listens to specially modulated sound, stimulating brain development. His first session was today.
The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"
Riiiiiiight. Just what I want to hear on a Monday morning.
So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.
Riiiiiiight.
So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P
The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"
Riiiiiiight. Just what I want to hear on a Monday morning.
So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.
Riiiiiiight.
So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P
Sunday, March 18, 2007
A Review: Nature's New Hope
Charlottesville today. We checked out a therapy where Joey would listen to music and look at a light while lying on a table that moves. This is supposed to encourage his brain to improve his sensory integration.
The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.
A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.
It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.
So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.
The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.
A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.
It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.
So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.
Saturday, March 17, 2007
A Review: The Faison School
Well, I spent today in Richmond, getting a tour of the Faison School. Thought I'd share.
The Faison School has taken over an old hospital building. The younger kids have space downstairs, including the wide, still-clinical halls where they park their ride-ons and hang their bookbags. Wandering about this lower level are a variety of students, not just the younger ones, all with a one-on-one aide or therapist. There are trampolines, bean-bag chairs, train sets, and sit-and-spins. It is an ABA paradise of small rooms divided roughly into cubbies by bookshelves and cubicle-like walls and desks. In other words, if you are looking for a 12-month, full-day, $57,000 DTT program, I have found the perfect thing for your kid. And I am convinced there are people who need this, and kids who do very well with it. I am very happy for them.
However, I was very concerned about it as a program for Joey. For one, the person giving me the tour seemed amazed that Joey could ride a bicycle through a hall at high speed, and manouver through that hall without hitting any object or any person. She also seemed very impressed when he said "hello" to her on cue (I prompted him with "Say hello to Ms. Shirley, Joey!" and he said "hello" without even looking a her- something he only does with strangers). I had hoped this would not be such an impressive accomplishment for a child going into kindergarden. Not one of the children we saw there was even close to being "as functional" as Joey- the behaviors were far more random and severe. The programs we were shown were far below Joey's level. When I asked about socialization and generalization, I was told there was an hour each day when teh children worked in groups (great- with other autistic kids), and that there as plenty of opportunity for "natural interaction" and generalization in the halls. Um... the hals that still look remarkably like a hospital (or other institution). In other words, they had nothing to offer Joey but more drill. Isn;t there supposed to be more to ABA than DTT?
If you have a kid who is having a lot of trouble responding, who needs to learn how to learn and how to play, I would definitely look into Faison. The people there were very nice and polite, they seemed to care a lot about their charges, and they showed an interest in both Joey and Andy. However, if you have a kid who has moved on and needs more attention to social skills, interacting with peers, and sensory issues, well... I'm still looking. I'll keep you posted.
The Faison School has taken over an old hospital building. The younger kids have space downstairs, including the wide, still-clinical halls where they park their ride-ons and hang their bookbags. Wandering about this lower level are a variety of students, not just the younger ones, all with a one-on-one aide or therapist. There are trampolines, bean-bag chairs, train sets, and sit-and-spins. It is an ABA paradise of small rooms divided roughly into cubbies by bookshelves and cubicle-like walls and desks. In other words, if you are looking for a 12-month, full-day, $57,000 DTT program, I have found the perfect thing for your kid. And I am convinced there are people who need this, and kids who do very well with it. I am very happy for them.
However, I was very concerned about it as a program for Joey. For one, the person giving me the tour seemed amazed that Joey could ride a bicycle through a hall at high speed, and manouver through that hall without hitting any object or any person. She also seemed very impressed when he said "hello" to her on cue (I prompted him with "Say hello to Ms. Shirley, Joey!" and he said "hello" without even looking a her- something he only does with strangers). I had hoped this would not be such an impressive accomplishment for a child going into kindergarden. Not one of the children we saw there was even close to being "as functional" as Joey- the behaviors were far more random and severe. The programs we were shown were far below Joey's level. When I asked about socialization and generalization, I was told there was an hour each day when teh children worked in groups (great- with other autistic kids), and that there as plenty of opportunity for "natural interaction" and generalization in the halls. Um... the hals that still look remarkably like a hospital (or other institution). In other words, they had nothing to offer Joey but more drill. Isn;t there supposed to be more to ABA than DTT?
If you have a kid who is having a lot of trouble responding, who needs to learn how to learn and how to play, I would definitely look into Faison. The people there were very nice and polite, they seemed to care a lot about their charges, and they showed an interest in both Joey and Andy. However, if you have a kid who has moved on and needs more attention to social skills, interacting with peers, and sensory issues, well... I'm still looking. I'll keep you posted.
Friday, March 16, 2007
Mourning: To Jim Sinclair
This is responding to a well-known essay by Jim Sinclair, "Don't Mourn for Us." The essay is directed at parents of autistic children, and does much of teh smae kind of generalizing that his organization seems to be fighting. The essay can be found presently at http://web.syr.edu/~jisincla/dontmourn.htm.
When I discovered Joey was autistic, I did indeed mourn. I still get upset. I greived. I worried. You could even say, I freaked out. But I think you missed completely why I was greiving- and why I still find myself listening to "Never Surrender" and having to pull off the road. You seem to miss the battle parents are fighting for their their children.
Sure, you mourn for the "normal child" you were "supposed to have." We wanted to go to Italy and ended up in Holland. But you seem to think that is 1. a bad thing, and 2. the only thing. Autism is not happening to me. I am not autistic. But what I realized, feared, knew, and greived about, was that normal life was being threatened- for me, for my child, for my family. "Normal" families have no clue abotu IEPs, special ed administrators, and the constraints of labels and resources on the simple opportunity for your child to be independent. Normal parents assume independence is in the future of their child. I can never make that assumption again. I have to fight administrators, teachers, therapists, supervisors, doctors, insurance agents, and institution, just to allow my child the same shot at respect, independence, and freedom that normal families don't even think about. As long as their kid doesn't do something stupidly criminal, they will be free to live their lives as they choose. I am going to have to fight for that right for Joey- and if I don't do that fight RIGHT NOW, he will not have that opportunity- ever. If I ever STOP fighting- if we ever surrender to this insane, ignorant system that is supposed to be helping, but is instead trying in all ways to hinder us- our default is that he will NOT be free. He will be stuck in some institution, with people who don't care dictating his every move, every minute, every breath. This is not a reason to be upset?
I'm not worried about the child I was SUPPOSED TO have. I'm scared and fighting hard enough for the child I DO have- the wonderful, beautiful, intelligent, sweetling little guy who is my Joey, and his darling, intelligent, handsome, lickable brother, Andy, even though Andy does not have autism. These are my boys. My job is to help and support them, so they can be healthy, happy, educated adults. I'm the mom here.
The whole "autistic person/person with autism" thing is just plain idiotic, and I wish people would stop playing semantics. The hole high/low functioning thing is equally stupid. People with autism are autistic. "HIgh functioning" and "low functioning" is a guide to hich services these people may need, not whether or not they need them. My kid needs service as much as any head-banging, non-verbal, wheelchair-bound person; he just needs DIFFERENT services, because he has different issues and disabilities. He may OR MAY NOT require MORE or less service. Just because my kid doesn't need a helmet doesn;t mean he doesn't need accommodations in order to function and care for himself. This should be a battle to get everyone what they need, not fighting each other for slices of an ever-shrinking pie.
When I look at Joey, I have no need to say this is not some other child. I noticed that, oh, five years ago. Does that mean I can't be worried about him, I'm not supposed to try to help him function and be independent in the world? Because that is the signal you are sending- especially to my school admin. They take up essays like this and say, "see? these people don't want services. They WANT to be autistic, just as they are. They don't want to be independent, employed, or functional- they think it torture!"
Joey is NOT an alien child who landed in my life by accident. He is a human being, and he is my son, just as much as Andy is a human being, and my son. This is NOT an alien world. We are human beings on planet earth. We just need to know how to help him understand this world, just as we help Andy understand this world. And it takes Joey a little more time to process information. He IS my own kind- he is a human being, just like I am. He just needs different help, different support, different teaching methods than what I needed, or what Andy may need. He is not an "it." Joey is MY SON.
When I discovered Joey was autistic, I did indeed mourn. I still get upset. I greived. I worried. You could even say, I freaked out. But I think you missed completely why I was greiving- and why I still find myself listening to "Never Surrender" and having to pull off the road. You seem to miss the battle parents are fighting for their their children.
Sure, you mourn for the "normal child" you were "supposed to have." We wanted to go to Italy and ended up in Holland. But you seem to think that is 1. a bad thing, and 2. the only thing. Autism is not happening to me. I am not autistic. But what I realized, feared, knew, and greived about, was that normal life was being threatened- for me, for my child, for my family. "Normal" families have no clue abotu IEPs, special ed administrators, and the constraints of labels and resources on the simple opportunity for your child to be independent. Normal parents assume independence is in the future of their child. I can never make that assumption again. I have to fight administrators, teachers, therapists, supervisors, doctors, insurance agents, and institution, just to allow my child the same shot at respect, independence, and freedom that normal families don't even think about. As long as their kid doesn't do something stupidly criminal, they will be free to live their lives as they choose. I am going to have to fight for that right for Joey- and if I don't do that fight RIGHT NOW, he will not have that opportunity- ever. If I ever STOP fighting- if we ever surrender to this insane, ignorant system that is supposed to be helping, but is instead trying in all ways to hinder us- our default is that he will NOT be free. He will be stuck in some institution, with people who don't care dictating his every move, every minute, every breath. This is not a reason to be upset?
I'm not worried about the child I was SUPPOSED TO have. I'm scared and fighting hard enough for the child I DO have- the wonderful, beautiful, intelligent, sweetling little guy who is my Joey, and his darling, intelligent, handsome, lickable brother, Andy, even though Andy does not have autism. These are my boys. My job is to help and support them, so they can be healthy, happy, educated adults. I'm the mom here.
The whole "autistic person/person with autism" thing is just plain idiotic, and I wish people would stop playing semantics. The hole high/low functioning thing is equally stupid. People with autism are autistic. "HIgh functioning" and "low functioning" is a guide to hich services these people may need, not whether or not they need them. My kid needs service as much as any head-banging, non-verbal, wheelchair-bound person; he just needs DIFFERENT services, because he has different issues and disabilities. He may OR MAY NOT require MORE or less service. Just because my kid doesn't need a helmet doesn;t mean he doesn't need accommodations in order to function and care for himself. This should be a battle to get everyone what they need, not fighting each other for slices of an ever-shrinking pie.
When I look at Joey, I have no need to say this is not some other child. I noticed that, oh, five years ago. Does that mean I can't be worried about him, I'm not supposed to try to help him function and be independent in the world? Because that is the signal you are sending- especially to my school admin. They take up essays like this and say, "see? these people don't want services. They WANT to be autistic, just as they are. They don't want to be independent, employed, or functional- they think it torture!"
Joey is NOT an alien child who landed in my life by accident. He is a human being, and he is my son, just as much as Andy is a human being, and my son. This is NOT an alien world. We are human beings on planet earth. We just need to know how to help him understand this world, just as we help Andy understand this world. And it takes Joey a little more time to process information. He IS my own kind- he is a human being, just like I am. He just needs different help, different support, different teaching methods than what I needed, or what Andy may need. He is not an "it." Joey is MY SON.
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