The plan of the Day: Talking to Joey's Class

Today I am going to talk to Joey's class about autism, an idea I suggested after thinking about Mom-NOS's great classic, Hair Dryer Brains in a Toaster World. I got the questions the kids offered this morning, so I don't have a lot of time to prepare and think. I hope my talk with Joey's class goes even half so well.

We are a very small school system. In fact, there is only one school per level. We have one lower elementary, one upper elementary, one intermediate, and one high school.The kids that Joey sees in class today are likely the same kids he saw for the last three years, and he will still be looking at them nine years from now. I was surprised to find how many kids did not know Joey this summer; or, perhaps I ought to be more accurate there. Everybody knows Joey. Not everybody has had to work with him in their classes, or are familiar with his differences. Since he is not in the mainstream classes right now, even fewer are getting to know him and learn to accept those differences. It is likely at this point that Joey will spend the majority of his school time in "inclusion" classrooms, where he will have access to a special education teacher all day. The majority of those kids are hand-picked to be supportive and benefit from that environment as much as the special needs children. Therefore, it is likely we will be seeing this particular group of kids for a long, long time.

I need to get this right.

I'll keep you posted.

Edit: I almost forgot, here's the questions I got:


1.) Why does Joey say "Infinity and beyond?" (I corrected misspellings!)
2.) Why does Joey want to run out the door? (2 asked that)
3.) How does a kid get autism? Is it because when they breathe their
brain doesn't get oxygen fast enough?
4.) Does it hurt them to have autism?

Downtown Adventure: Another Day

You may remember last spring I took the boys to see some of the sights of our town, including the Hugh Mercer Apothecary, and was very pleased to find the docents patient and willing to help accommodate us. The boys were off on Monday, so we fished about for President's Day stuff to do. Joey was not in a good mood for a long ride to Wakefield, and Ferry Farm was closed (why is the farm where George Washington grew up closed on President's Day? I have no idea). So I settled on another go at the apothecary.

Unfortunately, this time wasn't so pleasant.

When you enter the apothecary, the front receiving room includes a wall of medicines and a counter of jars filled with interesting herbs and such. The tour starts in the next room, which was apparently the doctor's surgery. There may be a couple more rooms in the tour, but I don't know, we've never gotten that far. They spent a very long time in the surgery, explaining what medicine was like in colonial times, quite graphically. It's a pretty nice little presentation for adults and children who can easily sit and focus.

When we arrived, the tour was well underway with a room full of children in the surgery. Since you have to pay for the tour ($5 per adult, $2 for kids 6-12), I thought it a good opportunity to let my guys try to settle and see if the tour would be a good idea. The docent was not the one there before, and she immediately started badgering us about how it was a paid tour and much to the effect of "pay up, lady." I explained that I would pay in a minute, as I was trying to get a handle on my guys. Andy was asking questions about the counter, Joey was asking questions about the furniture, and I didn't particularly want either of them running about the room while I was trying to get money settled. Both boys were being pretty good about their voices, so I didn't really see why the woman started fussing about us being in the room, but she did- "its a paid tour, and you're disturbing it" sort of comments. Why isn't she going to let us wait for the next tour, since it was a paid tour and already well under way? I wondered.

I started having my second thoughts, and quickly explained that my child was autistic and I wanted him to get used to the room for a moment. I think had the woman given us a couple of minutes to settle, we would have been ok, as I had gotten them both sitting on a bench and was working to determine if this tour was going to be something we could handle. But she didn't, so Joey picked up on the mood and decided he was done. He announced his wish to leave in a fairly loud voice- one that I would readily say was disruptive to the other room, where they were still going on about pulling teeth- and I was by now quite sure we were not welcome. Andy wanted to stay and ask more questions about the herbs and hear the tour, but we weren't getting the minute we needed to pull Joey together.

"Come on, we're not welcome here," I explained to get him out the door. Now the woman started saying things like, "I was a teacher for 29 years and know something about..." and "I'm just trying to help you..." and "You don't have to be so nasty about it!"

A teacher for 29 years? And you don't know an autistic child when you see one? Or offer to help accommodate a disability instead of running your mouth? This was getting worse by the minute. I finally got Andy gathered and out the door, and Joey made a break for the library just down the street.

Now, you'd think once I had removed my children from the situation, it would be done. She had her silent front room back, but was she happy? No. In her full colonial costume, this woman actually came out and followed us a way down the street, making similar comments about how rude and nasty we were being and how "some days it just doesn't pay to get out of bed in the morning!" No kidding, lady. You just made it that kind of day for us, that's for sure.

And guess what else is closed on President's Day? The library.

We gave up and went home to play Wii Sports.

IEP Season Comes Around Again

Getting ready for your yearly IEP? When Spring comes around, it is time to be thinking about what goals your child(ren) will be aiming for in the coming year. What is reasonable? What to ask for? How to prepare?

Here are some links to my previous posts on IEPs and preparing for them. I hope this helps.

Quick Guide to the Day After Diagnosis (In case you are just getting started)

The Crazy Season (A Quick Guide to IEPs)

Powerpoint Thinking (Putting together a presentation about your child)

For Stimey (The Rabbit Joke, IEP-Style)

Autism Awareness Month: Resource Links Post

You Are Not Alone (Just a Reminder)

And from elsewhere:

How to Prepare for an IEP Meeting

Preparing for an IEP: Organizing Your Concerns

Three Steps to a Successful IEP

Wrightslaw

Advocating For Your Special Needs Child

And the boys played on

Friday was Early Out. Early Out days often seem like odd, long stretches of lost time. The boys are home early, but getting them to engage in an activity or find something for them to do is next to impossible. They have had their taste of school, they want cartoons (well, MythBusters is the current TV favorite) and video games, but it is far too early in the day. The Witching Hour is often simply extended from one to five instead of four to five.

Hallelujah, Spring weather to the rescue. I tossed them both outside with our Awesome Neighbor to play. They took turns riding Joey's trike. They played in the sand. They chased each other in games. They bickered as boys will do, especially when they are 6-10 years old and all of them are powerful personalities. Another friend and his mom were taking a walk, and joined us. I had four kids playing in my back yard, being boys.

It was totally awesome.

There was no denying that two of them were autistic, and the other two were hyperactive. But holy cow, they just played like any other group of boys. The other mom and I sat on lawn chairs on the patio and played with our new phones (I have my new iphone, she has a droid), swapping app suggestions. And the boys played on.

Awesome Neighbor had to go home. JoeyAndyDad came home. We sat in lawn chairs together, talking about phones and apps and geeky stuff like that. Boys had drinks and sand and the tricycle.

And the boys played on.

Triennial again

We just had our second triennial. Has Joey been in school so very long? It was a fascinating meeting. We had all four of Joey's teachers there, the speech therapist, my private occupational therapist (the school one didn't even try to come!), and the school psychologist. Oh, and me.

We started with classroom updates. Joey has a regular ed teacher and a special ed teacher in his inclusion room, who spoke about his improvements, his setbacks since Christmas, what he is doing well and what is still a struggle for him. He is spectacular in math and spelling, not so much in reading. Since Christmas, he has been able to be in reading group only a handful of times due to behavior and sensory problems. (Remember this was a child in a reading group in a REGULAR classroom last year). It has been interesting watching these teachers realize what Joey can do, and how he is actually disabled. The one teacher has figured out that Joey's reading comprehension is not the problem, it is his ability to communicate what he comprehends, and to answer questions. She spent the meeting correcting folks every time it was mentioned that he was having trouble with reading comprehension. "It's not the comprehension- it is what he is able to communicate that he comprehends!"

He is doing better with noise and assemblies- the bigger problem is boredom.

Joey spends a good part of his day in self-contained, and that teacher is new. There was a whole different attitude towards teaching from that facet of the team. Mr. T takes his kids as they come, and works to make sure they are learning. He seemed surprised at some of the problems and concerns in the inclusion room, which he simply saw as not a problem, but just facts of the child. Joey likes to walk around and needs movement. The inclusion room attitude is, "how do we get him to sit down?" The self-contained attitude is "how do I give him opportunities to move?"

Then we went to look at the evals- except there weren't any. The last speech eval was done by my private therapist, and we were about to renew it when the office was closed- so it was from 2008. The last developmental? 2005. We had some info from his gifted and talented screening which placed him in the superior range, but the intelligence test they gave him- and they only gave him selections from any of the tests- only put him at 58%. The math part? Only "high average." Well, we knew those tests were inaccurate.

The speech therapist stepped in and gave an overview of her experience in lieu of a formal eval. It was interesting to hear how different her assessment of concerns were from those of the classroom. The classroom teachers noticed trouble with communicating understanding of the feelings of others, ability to express narrative sequence, and expressing the main idea of a passage (Joey tends to place equal emphasis on all the details instead of being able to capture the larger picture in reading a passage; I understand this is pretty common in autism). The speech therapist was interested in his struggle to make predictions, create or understand narrative, or answer complex questions. Sounds like IEP goals to me...

Then my private OT stepped in with her eval, which was from the spring, and yet still a good snapshot of Joey and his abilities for functioning. Funny what info you can get from appropriate evals done in a timely manner.

We decided to update all the evals, do some cognitive testing, and have him take the complete tests provided by the gifted and talented people, even though he "doesn't qualify"- we want to understand why these tests are not accurate, what skills he does have, and how to support and teach him to help them be accurate, with the goal of having him graduate with a regular high school diploma, not a provisional/special ed one. He needs to be able to take SOL tests to get a "real" diploma (what? a special ed diploma is a piece of pity paper? Do people have any idea how much work these kids do?)

Then came the good part.

My OT piped up to ask a few questions. Or drop a few bombshells. Whichever.

Since Joey needs to move to learn, he will do it whether given appropriate opportunities to do so or not. What appropriate opportunities were being provided? Math is done in centers- plenty of opportunity to get up and walk around. Reading is done seated in a group... no wonder he has a harder time there! She provided some suggestions, such as allowing him to read standing up. Mr. T apparently was doing that already, and hadn't really thought it odd that Joey likes to read standing up. I remember when he had to stand up to eat. (I'll never forget it, as we were accosted in a restaurant once because of it!) Yep, different attitude.

Then we discussed Joey having communication alternatives for when he is excited, angry, frustrated, upset- times when he is likely to lose his ability to access language. This is a sticky point for me. I have a terribly difficult time getting others to understand that just because Joey is verbal, doesn't mean is he is verbal all the time. His ability to access language and use it effectively plunges when stress and anxiety come crashing in. I think that is true for most kids, but for Joey, it is an extreme. We talked about cards and items he can take with him from classroom to classroom, and items that can be copied for each classroom. He likes to carry things on his head. The notebook made for the self-contained was being used in the inclusion. Many of the interventions we had developed had faded into the background and needed to be reinstated. When Joey doesn't need a certain support for a long while, it can be easy to forget to leave it in the toolkit- but when he needs it, he needs it NOW. Our OT also suggested training Joey to use a card to indicate when he is processing and needs extra time to respond. It can take Joey up to three minutes to process through information to the point he can answer a question. Teachers expect answers within 5 seconds. That is a huge gap, and there is concern he is being upbraided for not listening or responding when he is processing. The card would be cue to the other person that Joey has heard them, and needs time. Apparently, our OT went to a conference with an autistic woman who used these cards to great effect, and she instantly thought of Joey.

Then came the Big One. We know Joey is gifted in math and spelling... so what gifted programs are available for him?

Gifted programs are not made to be accessible. They assumption of being "super-able" pervades our attitudes, and that of society. The gifted program is designed "for kids who are generally gifted... kids with pocket talents are handled through differentiation." In other words, the program is designed for super-abled kids, not kids with specific gifts. Hmmm.

I doubt I will fight this battle, though. The gifted program is another pull-out, another transition, and not designed to meet Joey's needs. It is another set of people to train, who probably have even less interest in learning what is needful or dealing with disability in their program. A program where kids are given a project and just told to "go for it" would be an anxiety-ridden disaster for Joey at this point.

Yet the issue remains hanging there. Why can't someone like Joey participate in the gifted program, when he is clearly gifted? Why is he cut off from that social circle? And how can that be addressed? And if boredom is a problem, how is that being addressed?

Am I Really This Old?

One of my friends from high school is going to be a grandmother today or tomorrow.

A grandmother.

Wow. My kids are still in elementary school.

This is Joey 2011

Thinking Forward

It's February. Time to start thinking about what Joey will be doing this summer.

Whether the school wants to or not.

Report Cards: Night and Day in Usefulness

It was report card day Friday, but I forgot until I opened the bags this morning to pack lunches and, hey, look, report cards! Which for us are report papers. But whatever.

Andy's "grades" are based on the Satisfactory System. It works like this:

S- Satisfactory.
P- Progressing with Effort.
N- Needs Improvement.

Apparently, this school system assumes kids (or their parents?) can't handle real grades until third grade. Andy got all S reports this time! Even in handwriting! Woo-hoo!!!

Joey's reports ar a little more complicated. First, we have the grade report. This mixes real grades with the Satisfactory System grades. Academic subjects get real grades. Other benchmarks, such as social skills and specials (music, art) get Satisfactory System grades.

How accurate is it? He has a C in science and a B+ in spelling.

Excuse me? The boy who won the spelling bee has a B+ in spelling?

That probably has more to do with the N in "turns in work on time" than his actual grasp of the subjects. Or his N in "self-control." Which means that the report card isn't very useful for gauging much, other than, hey look, my kid is autistic and needs support in turning in his homework! Really? No kidding!

The other part of Joey's report is his IEP report. Not much has changed. Again. Which really does make me angry and continues the frustration. This is ridiculous. It is frickin' FEBRUARY, people. This time, no one bothered to put in comments except the speech therapist. We have another "no instruction" for dealing with teasing and bullying. I'm sure the excuse will be "it doesn't happen here!" I now think the only answer for that from here will be, "and what have you observed during PE and recess? How much observation has been done? And why were people laughing at him at the start of the spelling bee? How have you helped him to cope with people laughing at him in large groups like that?"

Middle school is closing in fast. And the more "no instruction" I see on goals to help him cope with the social and emotional onslaught of pre-teen angst, the more I prepare for a few years of homeschooling.

Things That Make You Go "What?"

I'm sorry, I can't hear you.

Only according to the ear doctor- the one in town who is supposed to be super-good- I can hear you just fine. Except that I can't seem to hear. Is it hair in my ears? Or random wax? Funny, I was in the ear doc's office because my family doctor eliminated those things already. But my audiology tests came back perfectly normal, so obviously I can hear, right? Right?

What? I didn't catch that.

I took my mom with me. I'm glad I had a witness, or I would have thought I was crazy. The ear doctor sure seemed to think I was. The only suggestion he had was that maybe I was having trouble with "background noise", an auditory processing issue; but he didn't want to give me that test, because hey, what could we do about that, anyway?

What? I can't hear you. Can you repeat that again?

I'm not saying there isn't some possibility for this theory. I thought about when I have the hardest time hearing. After a summer of fluid in my ears (which the ear doc says couldn't have been fluid in my ears, because it is really rare for adults to have fluid in their ears, it must have been hair or wax or something like that, even though I had a doctor check out my ears and apparently my ear canals are particularly clean), I started having trouble. During, in fact, but I attribute the during to the "fluid" (which, by the way, hurts, and can cause my ears to become sensitive to high-pitched sounds like boy squeals. It was a long summer). My mom noticed it. She found talking to me in the car, I sometimes didn't even know she had spoken. My students noticed it. They have to repeat themselves a lot, which they find annoying. When my doctor checked my ears, I think she thought I was being silly, too, until she tried to tell me something while she washed her hands, and it was obvious I didn't hear her.

What's the connection there? Sure enough, noise. The staticy white noise: the rush of the road and wind in the car, even with the windows up, plus the heater blowing. In my class, I am video linked to another classroom, and for reasons unknown, they placed the microphone next to the heater/air conditioner, so that there is a constant sound of blowing air or static in my classroom. The sound of the running water with the aerator. Like TV snow.

It may not explain the occasional pain, why it seems to come and go (I have days I can hear better than others, and sometimes it is one ear, sometimes the other, sometimes both), or why it suddenly appeared. But it is interesting as a theory.

So, the good news is that apparently, my ears work. The bad news is I still can't hear you.

What?

The Meaning of Hugs and Kisses

His lips brush my cheek, ever so lightly, yet with careful deliberation. The child has appeared from nowhere, materialized into my space.

"You're my sweet goo goo," he half-whispers, a sort of stage whisper he has acquired for these kinds of moments. Perhaps he means to whisper, but is instead using the tones demonstrated to encourage him to whisper in certain contexts. I could go into the origins of the odd intimate-title, but it would be pointless, the origins have no meaning into his use of the words now. He pauses for the expected and anticipated reply.

"You are my sweet Joey-Boy," I complete the exchange with a kiss on his cheek. He rubs his face on mine, nose-to-nose, cheek-to-cheek, then brushes the lips again.

"My sweet goo goo," he repeats. He leans his head against me a moment. Then he is gone, back to play his Poptropica or with his Toy Story figurines.

In the midst of anxiety and craziness, Joey has also hit a lovey-stage. He wants lots of hugs, lots of attention, lots of closeness. He is doing this to one of his teachers, too. As Andy has hit the "Mom-leave-me-alone" stage, having Joey to smooch on is lovely; but like so many other shifts in behavior and attitude, I worry. Is he feeling lonely, or left out, or needy, or somehow downtrodden? Does he need the deep pressure, or the attention, or both? Is this another sign of depression?

I try to make no snap assumptions, but try to give him what he is asking for- lots of hugs and kisses, lots of assurances that he is still a sweet, handsome, intelligent person. I take the opportunity of having him so close to my face to give him specific praise ("I was so proud of you for getting dressed so nicely this morning!", "Thank you for throwing out your chip bag, that is so helpful!", "I saw you got a 100% on your math quiz, great job!") I let him run his hands and face over mine, an exploration that he has delighted in since he was a babe. I so desperately want him to know he is so very loved, so treasured, so wonderful.

I want him to carry that understanding with him even when this lovey-dovey mood is gone. I will miss it.

Happy New Year: Year of the Tooth Fairy!

It's the Year of the Rabbit! I hope it means lots of ice cream, not lots of lost teeth.

Sensory Overload and the Red Cheek Wonder

Everyone knows Joey gets red cheeks. One of the signs of him going into sensory overload is that his cheeks flame with color. It isn't just too much of everything everywhere; there can also be an intensity of sensory input that can send him into Red Cheek Wonder. Combined with his naturally pink cheeks, he would be an excellent poster child for Campbell's Soup.

He's just like his Mom.

I have to be careful about going to movie theaters. The overload can give me a high fever, and almost always gives me the cheek flush. The other thing that drives my blood pressure to flaming? Meetings. Trying to listen to not only what is being said, but what is being said between the lines, what is not being said, what is being meant but not actually said, the implications of the ideas being said, especially in a meeting where all those things can have consequences for my Joey or my Andy?

Overload.

So I sat there this evening trying to pretend my cheeks weren't burning and my temperature was not going through the roof, listening intensely to the changes being proposed for the middle school here (where Joey will have to be in two more years). Then I got in my little tweets into ears about the miscommunications about Joey's therapist coming in for observation, and that I would like to come in for observation next week. I sometimes wonder if others can tell when I am in overload, or if they just assume I have very red cheeks like Joey all the time. I bet they don't know that the red cheeks are a sign of overload. They probably think it is something else, like being nervous or not being truthful.

I wonder how often Joey goes through his days as I went through this evening, trying to function through the overload, trying to follow everything and process it without being fully overwhelmed. Only he has processing issues I don't think I have, making it that much harder for him to get through.

Through the Cracks

There is definitely something wrong in a society when people with disabled children have to choose between paying their rent or paying for the care of their child. I have a couple of friends in this catch-22. Technically, so are we, but we manage to bring in enough to not have such a touch choice. The people I know really caught in this crack are children with very severe disabilities, where the children require a lot of medical care and equipment as well as therapies and other specialized care. The way the system works, they can't make any more money- one parent needs to be home for the child(ren), and if they make over a certain income, their children lose important medical support and services, such as Medicaid or Social Security. Parents self-train because they cannot afford nursing or to hire care, some have to homeschool because the special education system takes too long to fix serious issues that threaten the health and education of the child who is already severely challenged and endangered. Respite care costs money. Wheelchairs cost money. Alternative communication costs money.

I certainly understand reserving government assistance for the neediest families. The problem is that no one in the private sector picks up the slack. The system is made is actually create needy families. It becomes a vicious cycle for families who make too much to qualify for assistance, but not enough to pay for both household expenses and therapy. What happens to them? They have to move back in with their parents, if they have that resource. They have to quit jobs to qualify for the assistance, instead of continuing to support themselves as much as they can and stay off other assistance programs, just getting the assistance they actually need. They drain any saving they have, trying to keep their children off those same assistance programs as much as they can. They spend their days being nurses, caretakers, lawyers, advocates, social workers, coordinators, therapists, educators... because no one can afford all of these services, and yet they are all needed because of the way our society views and treats people with disabilities and their families. Even with families who step up to the plate, no one wins a game on their own.

The attitude of the general public seems to be "sucks to be you." The idea that someone might need assistance means that person is somehow less, somehow a parasite. How very Victorian of them. Instead of being grateful for good fortune, opportunity, and talents, too many in society are spiteful. We need to advance as a society, and look at the basic ideas that move societies beyond the every-man-for-himself attitudes of might makes right: that we are all in this together, and none of us make it out alive. When we stick together, and support each other, everyone's needs can be met and everyone can contribute. Everyone has talents and challenges, and we can all do the best we can if we all help, and don't leave anyone shouldering their lot alone. We can't just assume those who need help are somehow not as good as those who have the opportunities to not be in need. You'd be amazed how quickly those tides can be turned, and the one who thought themselves self-sufficient suddenly and unexpected becomes one in need.

It's a simple rule, folks. Treat others as you would wish to be treated. And it works wonderfully well.

Changing the Rules

Well, the short of it is Joey was totally awesome. He stuck it out, spelled his words, and would have won the whole thing if they didn't change the rules for the last round. But, they change the rules for the last round, so he wasn't the Grand Champion. He totally, totally rocked the house.

The long story... well, it was one of those experiences that have ups and downs and odd moments and great moments. This was the third grade spelling bee, so all the third grade came to watch it, and most of the parents of the kids actually in it- 24 of them (two from each class). For their "practice round", each child stood and spelled their name. Most of the kids got up, precisely spelled their name, and sat down. Joey did this Joey Style, which was a lot more fun, with a lot more awesomeness. He got up there with enthusiasm and relish.

And then the whole room laughed. Most of the parents laughed because, hey, he was cute. But the laughter from the kids, that was different. You could tell by the little undertow of jeer and imitation, that there were an awful lot of those kids laughing at him, not with him. All the talk about teaching kids about diversity, about respect, about creating supportive environments... these are the kids Joey had to deal with all summer, or the ones that didn't know him at all. Some of the parents, who didn't know me from a turnip, whispered something about wondering why "that kid" was up there. I knew they wouldn't be saying such things an hour from then.

By the time Joey was the only one to spell his word correctly of the final four, those cheers were for him, not at him.

But in the final round of a spelling bee, the rules change. When you spell your word correctly, but everyone else does not, you then have to spell another word, or everyone else gets to come back and have another round. Unfortunately, Joey's word was "dignified," and he mis-spelled it completely (it was not a word he had seen before, it's not on the spelling word lists). Everyone got to come back, and this time, he was discombobulated enough to mis-spell the next word ("salute"), so he was out. The two kids who went on? They both mis-spelled their next words, before finally the one child spelled two words correctly in a row and was proclaimed the winner.

Joey was a little upset, but I brought a prize to reward him for even trying the bee. He ran at first, saying he was a loser, that he lost. Mrs. C got down and looked him right in the eye and told him that he was winner, that he was the best speller in the class, reminded him that he had spelled the words correctly when everyone else had missed theirs, and told him how proud she was of him. We sat with the other bee contestants and let him have his present, and all those kids were cheering him and saying things like, "you know you really won, Joey- you were the first winner!" and telling him how great he was. And his class? They lined up and everyone insisted on giving him a high-five, and cheering.

Parents stopped me in the lobby and the parking lot to say, "To us, he was the real winner! He was the one who really won that spelling bee!" If nothing else, he earned his respect, and showed a lot of his peers (and their parents) that he was no pity participant, but a true contestant; one who had, by all rights of the rules of the majority of the game, won. He showed them what true diversity means. We all have strengths. And it is awesome to be unique.

Preparing for the Bee

Joey is going to be in the third grade spelling bee tomorrow. We're really excited. He was in the first grade bee, but we had some miscommunications about his needs, and he got over-frustrated and threw it in the fifth round. The memory made him anxious enough that he purposely threw the classroom bee last year, so he didn't get to be in the second grade bee. So the fact that he's decided to give it another go, that's a big deal- especially with all the anxiety he's had this year. Seriously. Wow.

So I've been trying to help him prepare. Most kids, when they prepare for a spelling bee, practice- well, spelling. Not us. We practice things like sitting, listening, facing a person who is speaking to you. We talked about getting a prize if he spells all the words right. But mostly, he looks at me like I'm insane; you can almost read in his face: "It's spelling, mom. What's the big deal? What's to practice?"

This afternoon, he actually came home excited about it, saying, "My spelling show is tomorrow!" So I managed to say, "That's right! I bet you win it!" He blinked, and gave me one his processing looks, then happily cheered, "Yes! I will win!"

I think he is just now realizing it is a game, and that there is a "winning." I think I might just get something to bring with me tomorrow as a prize, whether he wins or not. Because seriously, he's already a winner for giving it another try.

In Which Momma Realizes Her Boys Aren't Babies Anymore

Though they will always be MY babies.

I tend to do spring cleaning during January. We're not in the middle ages anymore, after all. You get things done when you have a minute to get things done. This year, I am tackling the boys' rooms. We have a bad habit of tossing all the toys the boys have brought downstairs into big bins every couple of weeks, and then sticking those bins upstairs where-ever there is free space, and then they just sit there and the boys pull out the toys they want from them and leave the rest in a jumbled bin in the floor. The floorspace is getting filled up, and the boys are getting older. It was time.

I have been pecking at i, rather than sitting to it all at once. I sort the toys into Actively Played With Toys, Toys to Go to the Basement, and Baby Toys to Donate. I cleared Andy's closet of baby blankets and oddments so he can use it for his own things. The last of the Baby Stuff is being swept away.

When I was pregnant, my mom warned me that babies grow up, and they grow up fast. I knew it would be a blink of an eye. I had no idea how fast eyes can blink. I remind myself that Joey is actually growing up slower than most children, and it makes me want to hug moms everywhere, who have their children grow up faster than anyone can ever imagine.

My baby was reading my squirrel post yesterday, and he noticed my avatar icon. "Why you have your hand up there, Mom?" he laughed. I told him it was Uma. He didn't remember Oobi. It was his favorite show. So fast. So fast.

I took the old art down from his closet door. The closet door is coming off; Andy's room is quite small, and that little extra floor space will actually be a big improvement. I put the old drawings and pastings in a little box. There a cow, and a spider, and a sheet of dinosaur stickers that were rewards for training that he adored. He wants Star Wars posters now.

I put Joey's Toy Story toys in one bin in his room. I sorted out the Cars toys, but I am wondering if they go in the Basement pile or the Donate pile. Cars with eyes are apparently for little kids. What does Joey play with? Play for Joey is not usually like other kids. He likes wooden spoons, writing tablets, and sticks better than dolls or toys. But then, he and Andy played Toy Story all day yesterday, with his Woody and Buzz. Scripted pretend play is still pretend play. I leave the Cars stuff a little longer; Andy might still want to play with them, and having him go into Joey's room to get them may encourage him to engage Joey in the play. Good for both of them.

The Fisher Price bus? Donate. It's a wrench to put a bus in the donate box, as Joey loves buses. However, it is not Bus. It is a baby toy, a toddler toy, and it is still in decent shape. He hasn't played with it in ages. He's more into space stuff now. It is time to move on.

My babies just aren't babies anymore.

Happy Squirrel Appreciation Day!

Because we should always appreciate our small, furry friends.

*There are 365 species of squirrel. Maybe we should start a "Squirrel Species Appreciation Day" with a new species every day. It would make an awesome desk calendar.

*Once a female squirrel breeds with a male, she never breeds again with that male.

*Squirrels do not leave their nests at night.

*Squirrels sharpen their teeth by chewing on sticks.

*Squirrels laugh. They also use chirping sounds to indicate a wide range of emotion and alarm signals, in conjunction with tail movements. If a squirrel is chirping very fast and flicking their tail, it is laughing at you.

*When a squirrel finds a nut, they open it with their teeth, then rub it on their face. This applies a scent so they can find it later- even under a foot of snow.

*When a squirrel's nest becomes infested with fleas or other parasites, it will abandon it and build a new one.

*A squirrel's incisors grow 6 inches per year.

*Squirrels prefer to build their nursery nests in oak trees.

*The average life span for a wild squirrel is 3-5 years.

Happy Penguin Awareness Day!

Did you know:

*Penguins have been around for about 40 million years. The earliest penguins appeared in the Paleocene period in New Zealand. They appear in Antarctica in the Eocene.

*Penguins mate for life.

*Penguins can swim up to 25 miles per hour, though 15 miles per hour is the average.

*There are 17 or 18 different species of penguin in the world. There is debate about whether Little Blue and Fairy penguins are separate species.

*The average penguin spends 75% of its life in the water.

*Early explorers of the Antarctic mistook penguins for fish (and classified them as fish). Penguins are birds.

*Large, dense colonies of penguins are called rookeries. Penguins gather in rookeries to breed.

*There are no natural penguin populations in the northern hemisphere.

*Penguin eyes are made for seeing underwater. They work better under the water than they do in the air. This adaptation is likely due to the fact that penguins feed in the water, hunting fish and krill.

*Most wild penguins live 15-20 years.

Inclusion Attitude: Part of the Dream

"Inclusion is important because children with disabilities gain valuable social and academic skills by interacting with their non-disabled peers."

"It is important to include special education students in the regular education classroom, so they will have non-disabled role models."

"Inclusion helps children with disabilities, because they can interact with regular kids."

It's that little spark of abilism no one seems to notice. The language that hints at something deeper: a sort of slip, if you will. It is always to the advantage of the kids with disabilities to have inclusion programs. We forget there are also advantages to those "non-disabled peers."

A couple years ago now, we had a parent in one of Joey's classrooms complain that one of "those kids" was in their child's classroom. Special ed kids are seen as a burden, a drain on resources and attention for their "regular" and "normal" kid. It is an attitude that must be fought. Until everyone understands the advantage it is for everyone to have inclusion, it will remain a seething issue for the majority of families who do not have kids in special education, who do not understand what special education is or what it is for.

After all, what's in it for their kid?

I know why it is better for Joey to be around his non-disabled peers. Why is it good for those same peers to be around him?

They learn a lot about caring about others. Joey loves the world, and has genuine compassion for others, expressing that freely. If another kid gets hurt, Joey is right there to comfort them.

They learn about accepting differences. This is a vital social skill that often gets pushed aside, especially in middle school, when kids get that urge to be like everybody else. Teach them early. Teach them well. We are all unique, and that is a good thing.

They learn a lot about math. That's right. Remember academics? Joey even helps with academics!

I could go on, but the point is this: inclusion is about sharing strengths in order to meet challenges. Everyone has strengths to share. Everyone has challenges to meet. With inclusion, we all get those strengths, and learn to meet those challenges, often in ways no one expected. We strengthen the content of our characters.

Until everyone understands that, inclusion is under threat, because so many do not understand what inclusion is. They don't see how it is to their advantage, so they assume it is not. That assumption is backed up by media articles on inclusion, which stress the advantages of inclusion to people with disabilities, without noting the advantages to everyone. Inclusion isn't important because children with disabilities gain important social and academic skills. It is important because everyone gains important social and academic skills.

A Day Home

Joey was pretty sick yesterday. About 6am, he started throwing up- but since he hadn't eaten much, it was clear. He felt better enough to get dressed, but then I found him sprawled on the couch as Andy zipped about putting on shoes. No, that was not a child in condition to go to school. I kept him home. Shortly after Andy left, we had another bout of waxing, then the other end of the system became an issue. It was a good call.

We spent the morning watching Wow Wow Wubbzy on my bed, while I poked at a few things, but mostly snuggled him. Then he decided he wanted to move downstairs, so I set him up on the couch, and asked him what he wanted to see. He asked for Little Bear. We did a Little Bear marathon. I found this also interesting- he could watch anything he wanted, and instead of the high-power shows like Looney Tunes which have had his attention lately, he asked for a slow-paced, comforting show, most of the afternoon. I think my little buddy was trying to get some rest.

He was super-glad when Grandma arrived with soda and snuggled him on the couch- yes, a very snuggly boy. We got to sit with a fire in the fireplace, watching our Little Bear, letting the tummy rest and the boy rest... and the Momma rest. I did some picking up. I poked at the laundry. But otherwise, I spent the day snuggling my boy.

I only wish he wasn't sick.

Why Are Mental Health Services Important?

I am glad I am not a set of parents in Arizona today. I am glad I am not the Greens, who are suffering the unimaginable pain of losing their child. I am glad I am not the Loughners, who have likely been struggling to get their child the services he needs, and for whatever reason were unable to do so. There, but for the grace of God, go I.

Yes, we think about it. When Joey melts down and says violent things, we think about it. We could very easily lose him. He could be bullied to death (or worse). He could lose that line between speech and action and do something violent to himself or to others. As we scramble to get others to understand the need for service, the vital nature of those services, the potentially dangerous situations we face, we have these kinds of stories to terrify us into action.

That's not even counting in the autism factor. The autism factor just makes it that much harder to get our child help, because we can't just send him to any social worker with space on her schedule, we need someone who can work with an autistic child, understand his way of communicating and expressing his needs, his unique issues, on top of the angst. We need to find service providers who understand how autism amplifies the issues other children have with anxiety, depression, anger, frustration.

I had an appointment to see a psychiatrist in March, and we were going down the Charlottesville to see them. They cancelled. We haven't managed to get back on the schedule yet, as we sit on the waitlist for a client cancellation. We're not hopeful; it is just too hard to find someone to see these kids, the appointments are too precious. It is insanity.

So today I am thinking of the Greens and the Loughners, and sending them my thoughts and prayers with all my heart.

CNN again!

Our dreams of a school were featured in a CNN blog on the recent $380 million Megamillions jackpot thing.

Unfortunately, we didn't win. Maybe next time.

Life on the Short Bus

I just did my first 'unfriending' on Facebook. And it hurt. A lot.

I don't just 'friend' anybody. If I have allowed you to look at my life on Facebook, I have very good reason for doing so. However, sometimes relationships come to an impasse. Sometimes you have to let people go.

I got a very acrid message from a "friend" about some of my posts about the r-word and short bus jokes. I'll be straight up: not only do I dislike them, flinging about these words and "jokes" are very painful for me and for my family. You have the right to say them. That's Freedom of Speech. But I was always taught that with every right comes responsibility. You have the right to say anything you want- so take care when speaking. Use your right responsibly. You may have the right to drink, even to excess, but not to then drive a car. Someone could get hurt.

In recent testing, Joey passed the fourth grade end-of year tests for math. He's in the third grade. He can recite the birthdays of every family member, including ones he only sees a few times a year (and a couple he never sees at all). He reads dictionaries and encyclopedias for fun and comfort. So why does my son ride the special needs bus?

Well, because he has special needs. He has trouble with expressive language, so has difficulty telling us what happens to him during the day, and would have difficulty reporting problems he may have with peers. If he got upset, he might try to bolt, and the regular bus stop is around the corner and out of sight of the house, and no one is required to be at the stop to meet the children. In other words, he is on there for his safety.

Why would I feel the need to justify the safety needs of my own child? He's on that bus because it was decided he needed to be on that bus. He gets to school. He's smart as a whip and does good work when he's there. How he gets there should be nobody's business but ours. However, we've entered the moment where every year, a new variable pops up about his transportation: his social situation.

See, making fun of kids who ride the short bus is socially acceptable. Flinging around "retard" and "short bus" jokes is common, pervasive, even encouraged by adults. Joey cannot effectively defend himself from these types of jabs, but he feels them. He knows. Those words and jokes have been levied at him, and he's an easy target. And you know what? Even if my child embodied every single thing such jokes and jabs implied, they would be wrong. And you know why? Because my child would still be a fellow human being. Degrading fellow human beings for your own amusement is not only wrong, it's callous and heartless and cruel.

We teach Joey and Andy the importance of treating others the way they wish to be treated. it is a vital life lesson that so often falls by the wayside.

You can say anything you want. Having a right doesn't make it right.

What a year its been

In 2010, we went from being on the right path to being completely derailed, to trying find the tracks, to wondering if we were on a frozen lake like the Polar Express. I think right now, I'm still telling the engineers to turn left and right, but at least we can see the tracks again.

It is a reminder that you can work your butt off, and small things can make it all for naught. Differences in attitude make a difference. Proactive preparation can also make a big difference- between being able to participate in "regular" environments or being trapped in self-contained worlds.

We learned the value of child locks on car doors and the speed of Joey's legs when panicked. We discovered the value of fifteen minutes in the search for a missing child. Our world has been dominated by the fear of the bolt.

We also got to see the President. We went to the beach, the zoo, and even DinosaurLand. We didn't let fear bring us to a grinding halt.

We look forward to getting on track in 2011, and moving on to bigger and better. We hope you'll join us in our adventures!

A Little Bit of Clarity

I am starting to know what kind of moment (or even whole day) we are having by listening carefully to Joey's voice. When Joey was little, I often noted to his teachers that he had a huskiness to his voice, a sort of talking-through-cotton sound that other children his age didn't seem to have. I was, for the most part, laughed aside with the idea that that was just his voice. However, Andy does not have this thickness to his speech, despite all the speech issues he has. However, I notice it in many of the kids I meet with dyspraxia; the issues of motor control are coming into play when Joey speaks.

Now and again, and especially when he is doing well and having a really good day/moment, Joey's voice is clear as a bell. In fact, it can be hard to distinguish him from Andy at these moments, even though I know his voice is slightly lower in pitch. When Joey can speak clearly, his brain is moving in synch with his mouth. I also have noticed his language use improves in these moments, though his grammar often takes a slip. He can talk about his toys, or what he did that day, or what is going on in Poptropica, even over the phone.

When his voice thickens beyond the norm, it is a bad sign. Frustration mounts. His body is not in synch, his language use diminishes (though often his grammar improves...), and it is time for a break. Most likely, he is tired and/or hungry, or otherwise worn thin. It is not the time to press him.

So now my ears are primed, ever listening to the rises and falls in my Joey's day, searching for patterns that coincide with thick and clear. Just one more clue when the game is afoot.

Wordless Wednesday: Merry Christmas

When It Is OK To Believe

I have come across a very sad thing here in my little corner of the world: children who not only don't believe in Santa Claus, but tell others that he is dead. The parents of these children often are trying to move their children away from the consumerism they see in Santa Claus and towards a focus on Jesus in the holiday. See, these parents not only don't believe in Santa Claus, they don't even understand the point. They are themselves so caught up in the consumerism that they miss the real meaning of Santa Claus, and thus miss a wonderful way of turning their children to their spirituality and community in a way that children can readily grasp and believe.

If you believe in Santa Claus, you understand that St. Nicholas is about giving, not receiving.

You may remember that we're staunch Methodists (well, we believe in comfortable furniture and stuff, but there is no denying we're Methodist in a strain older than what I have seen in any of the Methodist churches I've tried around here, which seem very. very Baptist). We believe that God has given us many, many gifts: life, the world around us, friends and families and everything in wonderful Creation. He also gave us Salvation- that was a gift, and it is given, and it is up to us to appreciate it, be grateful for it, and remember to do our best with it. That idea of giving, of putting your best forth and giving to the world, spreading love and cheer and goodwill, that is what Christmas is for, celebrating God giving us this great Gift.

That is also what Santa Claus is trying to remind us to do. By giving without expecting any return, Santa gives us a model of being a giving person, a person who thinks of others and what they want, and tries to show love in ways others understand. It is a lesson that is often lost in translation as we succumb to the me-me-me of the adolescent age, and so many never seem to emerge from it.

Telling a child that Santa is dead is not only unfortunate, it dismisses the lesson he has to give us all, the very message of the joy of Christmas and of the Christ. It is the core of Christian belief, which is why St. Nicholas, patron saint of children everywhere, is so adored.

I believe in Santa Claus.

End of Semester

Sorry I am absent. I am tearing my hair out grading. Now school is called for snow. I'll be back when sanity resumes.

Ok, at least when I have a few more minutes to myself.

Our Adventure in President's Park

Yes, we did! We got tickets to the National Tree Lighting! And we had the most awesome seats- here we are watching the trains, and I can see our seats. Seriously. Totally awesome.

The boys liked the trains, but we didn't get to spend much time looking at them, because some official person threatened to "squish folks in" and take our seats from us if we weren't in them. At 3:30. According to the literature we had, we didn't have to be in our seats until 4:30. Besides, we weren't the only folks wandering around, or attempting to. But whatever. Mom waved us down in time for us to keep our seats.

Our adventure included a guest appearance by Stimey! So not only are we awesome enough to get tickets to the Christmas Tree Lighting, we are cool enough for Stimey to hang out with us. We rock.

So we took some photos of ourselves in front of the unlit tree while the daylight held out, and before we had to race back to our seats to keep some official person from letting someone else sit in them.

Joey and Andy were having a wonderful time, too. They were wonderfully good. Seriously. We pulled out a couple of our tricks from our bag, but they did the trick and kept everybody calm and having fun. I wish we had more time to look at the trains, though. They were digging them. If it warms up before Christmas, we might go back up just to see them. Or we'll wait until next year, if it is warmer.

Because you know what? It was Cold. Seriously. Cold. I was glad I thought to bring the tree hats. Not only did they get us on TV (woo-hoo!) but they are made of polar fleece, so they are nice and warm. And I thought to bring extra hats, extra gloves, extra scarves, and several blankets. All of which came in handy. Did I mention it was cold?

Yes, that is the beautiful and fabulous Stimey, and yes, our seats really are that close to the tree. It totally rocked.

We actually got to see the motorcade form in front of the White House, then pull away to come to the event (and joke about how he should have just walked, or used a Segway). I thought I took some film of it, but apparently, I didn't. :(

Did I mention I have a new camera?

So we waited for the dark to settle, the temperatures to plummet, and the president to show up. They started playing music for us about 4:30. The president showed up around 5. All in all, we did quite well.

I think they ought to have more ornaments on the tree, though. But that's just me. If you've ever seen my Christmas tree, you know I am not being facetious.



WE GOT TO SEE THE PRESIDENT!!!


When one sees a president, one is required to cheer loudly and take lots of pictures, and hope the zoom on the new camera works. I think it did pretty well. The film I took looks amazing, better than the photos, even.

They lit the tree around 5:15, which made us very happy, because we didn't feel obligated to stay. Did I mention it was cold?

And it was pretty awesome, too. It just comes right on, and we were suddenly aglow! What was also cool was the whole First Family lights it, including the First Grandma. And since we were also there with Grandma, we definitely appreciated that.

Joey did fabulously. We did have some games for him- a little handheld and my iPod (he loved tic-tac-toe and loves Angry Birds). He didn't even need his earphones.

Considering he sat in a car for an hour and a half, then in a line for half and hour, then in a seat for almost two hours (after walking calmly through a metal detector!), and then into a show that didn't really interest him until Santa appeared, I think he ought to be sainted for his behavior. He did awesome.

The First Lady read The Night Before Christmas, and that was fun for the guys. The little girls are adorable. I believe the other kids are from military families.

And did I mention Santa showed up?

That's when the guys really got into the whole tree-lighting thing. See the President? Oh, OK. Watch a 42-foot tree light up? Nice. Hey, look, there's Santa... WOWIE KAZOWIE, IT'S SANTA!!!!

This is Andy watching Santa. He also did great. They were both so patient and so, so, so good.

Before the show started, Andy discovered it was warm under the blanket, so he was playing under it and under the chairs like a little tent. He was adorable.

We watched B. B. King perform, then decided the boys were tired, cold, and hungry. And we were tired and cold. Did I mention it was cold?

So we bid farewell to our beautiful and adorable and wonderful Stimey, who I didn't get to really talk to much, and made our way to the exit. Only they had closed all but one of the exits, and the open one was not the one we entered through, so it took a long time for poor JoeyAndyDad to find us and pick us up. (He drove us up so we could get really close, to help out my mom). That was a bit of an adventure unto itself. But he did find us eventually, and we did thaw, and we'll see how the boys are feeling in the morning.

Overall, we had a wonderful time. How many times do you get to see the President and the lighting of the National Christmas Tree? And we got to see Stimey on top of that! Woo-hoo!

Merry Christmas!

Watch us on TV!

Wordless Wednesday: The Holidays are coming!

Preparing: The National Christmas Tree Lighting

Yes, I got tickets! Woo-hoo! We are going to go see President Obama! I am SO excited!

Of course, it's going to be the coldest December in years. Oh, and I already think D.C. is the coldest place on earth. And Security opens at 3, we have to be seated by 4:30, and the show doesn't start until 5. And I have an autistic child.

How does one get Joey through all that cold and waiting? What if he is overwhelmed by the concert, the crowd, the waiting?

So I am packing my special Success Kit:

A set of earphones and music player, loaded with Joey's favorite songs.
A Sensory Kit: fidget toys of various textures and chewy food items such as gummi bears and gum.
Scarf, Hat, Gloves spares. Extra socks.
iTouch with Angry Birds and Funny Bunny loaded.
Several chopsticks to use as air-writing sticks.


Anybody else have suggestions for the kit?

I hope they sell hot chocolate once we're there.

Echoes

I sit in a room full of parents, their children with various issues, various diagnoses, varying degrees of functionality and challenge, in a place where improving functionality and overcoming challenge is the goal. The clamor of chatter bounces about the room, parents trying hard to connect with other parents, sharing what works, what doesn't, what they see and how they feel. Certain refrains reach my ears.

"Once I took the gluten out, everything was better. He even looks at me now!"
"Oh, no, my child isn't autistic. He has PDD-NOS. It's a developmental delay."
"All those chemicals in vaccines! She's recovering from measles now, it wasn't so bad. How long? Oh, it's been about... eight weeks now. The school is starting to get fussy, but I don't want her to over-exert herself in PE..."
"The vitamins have been really helping! You should try it."
"Well, he focuses well enough when it's something that he likes. He'll watch that train in the grocery store for hours if I let him. He just doesn't like his schoolwork. What kid does?"
"The tae-quan-do has been amazing. He is so respectful now!"
"They want to teach her to sign, but if she signs, she won't speak, and who understands sign language in the real world?"
"I had to pull her out of school. It just wasn't working. Nobody wanted to really help, they just wanted to stick her in with a bunch of stupid special ed kids and let her rot."
"They want me to put him on meds, but I want him to learn to cope without them!"


I know these children. I have seen them once a week, some of them for six years, and started off seeing them two or three times in a week. I have seen them grow, and change, and suffer, and triumph. I have seen the hard work they do. The hard work their parents and grandparents and caregivers do. The hard work their siblings do.

They do what works for their families. And whether you agree or not (or I agree or not) with the comments I was hearing, or support their approaches or not, or wonder more about these children and wonder why these comments might have stood out in my head from the other jabber in the room... these are hard-working people, doing the best they can in a hard place.

I remember when I first found myself in this world of special needs and disabled children. I was shocked to find how I started off in a place of such utter ignorance. I'm an educated person. I had no idea. To find I had to come to terms with the needs of my child and the changes in my own life, that wasn't easy, and it wasn't quick. To actually come to terms, that wasn't easy or quick, either. We did try things, we spent hours researching things we had heard, theories handed to us. We went through the agonies of self-doubt, self-recrimination, the ugly side of discovering life isn't going to be as you expected it, as everyone assured you it would no doubt be- provided you did everything right, having it go this way, the wrong way, was a slim and distant possibility. The attitudes towards special needs kids and their families- the ignorance and venom of people who have no idea what it is all about, what it is like, can be overwhelming. Add in the venom of people who insist you should believe what they believe and do what they do within the special needs world itself, and it can be crushing.

Often I find people in these waiting rooms who are just reaching those terms. They go on about things they've tried. When I disagree with their approach, I often smile and nod and say, "how interesting, I'm glad that is working for you guys..." and then go on to note the latest triumphs the child has achieved, leaving why I think that challenge was overcome deliberately vague. I'm not there to add to the crushing weight of constant judgment.

I might note what worked for us. And some of those other parents smile and nod and say, "how interesting. I'm glad that is working for you guys..."

And that's OK. We'll all muddle through. It's good to listen. Sometimes there are new ideas to try, bouncing about a room of jabber.

Awareness: Child Abuse

The Facebook campaign to change your profile pic for child abuse awareness is incredibly popular. Want to do something for real? Check out My Stuff Bags, who provide comfort items to children rescued from abusive homes or at risk. Help a child by supporting My Stuff Bags!

Another Day Off, Not Going As Planned, Rocks Anyway

Well, I got something done.

You know its not going to go as planned when you start your day off by falling down the stairs. I was clearing pumpkins off the front porch (we had quite a collection), when I tripped and fell down the back deck steps. Pumpkins went everywhere. I ran inside, took some advils, and got some frozen peas on my knees. A few hours later I realized my knees seemed fine, even though I fell on them, it was my hip that was complaining. So I put frozen veggies on that. Now I realize I jammed my back. Great. But all in all, it could have been a lot worse.

The plan for the day was getting Christmas stuff up, round one. Mantle, kitchen shelf, and possibly the first garland. Two of those activities required ladders, and getting on a ladder by myself, having just fallen down the stairs, was not appealing. I got the mantle up, no problem, and some other Christmas knick-knacks went out. Then I remembered one of the light strings on my kitchen garland (the one with the cookie cutters) was kaput. So I settled myself in to pull that all apart. I got it strung with new lights, wired all the cutters back on, and I actually got that up.

Two out of three ain't bad. I probably should have gotten some stitching done a that point, but I got these things done with intermittent other things happening- an impromptu meeting with a publishing client, an email from school saying Joey was having a bad morning, building a fire (hey, I'm downstairs all day in this chilly weather, I'm having a fire!), and... would you believe it? a nap.

And I watched four versions of A Christmas Carol. With the nap, I call that a rockin' day. The back steps be darned.

The Lastest on Alex Barton

Looks like we have a settlement.

Different Worlds

When I got off the plane and discovered I was in Holland, not Italy, I also found I was in a world of people who had the strength to adapt, to change, to go with where they were and what was happening around them. Oh, and people who just couldn't deal with the lemons life had handed them; but I found the folks making lemonade far more interesting. And then I discovered there were people handed lemons who made wine (the good sparkling sweet stuff) and just let everybody wonder how they did it. Amazing people. And their parents.

Nik is about to be seven. So is Jack-Jack. I think about these little guys, as well as many other children of my readers, every single day. But these two of are interest right now, because it sometimes occurs to me that both of them are older than Andy. Not by much- a few months- but older. And I think of these little guys, and I think of my Andy, and I think, sometimes life ain't fair.

These three little guys are hard-working, courageous souls. Yet the challenges they face, so very different, just aren't fair. Nik is starting to say words, using his new iPad, working hard to learn to self-regulate and communicate. Every new skill is so hard-won. Every day is so hard-won. I check often with bated breath, lest I find he is in the hospital again, knowing how hard that little guy works, how hard his folks work to support and help him. Jack is able to scoot about, is learning to use signs and sounds to communicate, working hard to be able to understand his environment and how the world works. Every skill is hard-won, every day hard-won. Every time I talk to his mom, I prepare to hear he had a trip to the ER for a seizure, knowing how hard his folks work to support not only him, but his older brothers who are also seriously disabled. Both of these little guys are trying to hard to survive, while working so hard to thrive.

Folks who don't live with these families in their lives have no idea how hard these kids work. How much energy goes into getting to another day. It's not fair.

Andy's challenges are very different. His life is not on the line with every breath he takes. Yet he fights his own battles, ones that he shouldn't have to fight.

I awakened yesterday to a battle raging downstairs, screams of unhappiness rising up the stairwell. It was odd, they usually play together nicely in the morning now. I sprang up to intercede, and found the problem was about sticks. Joey is very fond of his sticks, which he uses for air writing, and has them about the house. Andy is also fond of sticks, which he uses as most children do: swords, guns, magic wands, whatever strikes his fancy. Apparently Joey wanted a long, thin stick Andy had, instead of the shorter (but still pretty long), thicker stick in his hand. He was screaming that Andy has stolen his stick. Andy was upset because he hadn't stolen the stick (for once), but it was one he had gotten from the yard the day before. In trying to be fair, there was little I could do other than inspect the stick and note that it was, indeed, the one Andy had fetched from the yard the day before- which, of course, settled nothing. Assuring Joey he could go out and get a similar stick was of no avail. Offering Joey another stick was useless. Joey's autism means he needs this stick, right now. Wrapping his brain around getting a similar stick was not working, especially with all the upheaval from the holiday. Meltdown was immanent.

Suddenly Andy looked down at the stick, and over at Joey, and at me, and held the stick out to Joey. "Let's trade, Doey," he offered. When this was amenable, Andy then reinforced the trade by noting the longer stick would write better, and the thicker stick made a better sword. But if you were there, you'd know that Andy did not want to trade sticks. He wanted his stick, but he knew. He could see the immanent meltdown as well as I could, heard the desperation in Joey's voice, the change of pitch that took it beyond a squabble. As long as it was a squabble, Andy held his ground. When it started turning into something else, he came up with a solution- one that got him all sorts of kisses and hugs and praise from his mom, who offered to get him another stick from the yard.

But it wasn't fair.

Thanksgiving

Yes, we had a nice, quiet Thanksgiving. We prepped. We cooked. We were uber-ready.

The boys were good, patient, and actually entertained themselves for a good chunk of time. Grandma just cleaned her basement, revealing a lovely concrete floor- perfect for chalking. I found some of JoeyAndyDad's old Star Wars figures (mine are mysteriously missing), so Andy was thrilled. We brought Joey's computer with us, making him happy. We even got them both to come in to the living room to see Santa arrive in Herald's Square! They were very excited about eating turkey and stuffing and potatoes, and Andy even had shrimp. Yummy.

The bird this year was 27 pounds. It took about 5 1/2 hours to cook. The last hour, I slapped bacon on top. Yummerific. We discovered the bacon trick a couple years ago, when I found a bacon turkey online and slapped bacon on the turkey as a joke for JoeyAndyDad. It turned out to be really super delicious. I also tried a new sweet potato casserole this year, which turned out pretty good.

Evan arrived in the early afternoon; he had to work until early in the morning. Unfortunately, he also has to work tomorrow, so he didn't get to stay over, which means we didn't get to drink and I don't have updates on all the books he's read, and the headache I sported most of the day meant we didn't get to talk much. But we all watched some football and The Empire Strikes Back. Watching a Star War movie is getting to be a tradition when Evan comes. I bet we see Return of the Jedi on Christmas. Which would be awesome. I'll be sure to grill him about his reading, too. He always reads interesting books.

The fun part was he arrived in a garbage truck. He's working for a company that picks up and hauls garbage, and he got to use the truck. Joey was thrilled to see a garbage truck up close, though we didn't have time for a ride. Maybe next time.

So, I'm thinking turkey casserole for dinner tomorrow. And the next day. And possibly the day after. It was a pretty big bird.

Meeting #... oh, Whatever!

I don't remember how many we're up to now. Today's joyous episode included the Director of Student Services, the Autism Coordinator, and Joey's School Principal, along with me and my mom.

We laid it out: Joey received failing test scores for the nine weeks' grading period, and is not achieving sufficient progress on any of his IEP goals. He is not receiving appropriate OT support because the OT is incompetent; she stated clearly at the last IEP meeting that there was nothing she could do for Joey, and insisted on a once-a-month consult status instead of direct service. Here we are in crisis, and where is this lady?

I think if one more admin person tells me this is the school OT, take her or leave her, I am going to shut the meeting down and call a lawyer. How much evidence do you have to have of a person not providing appropriate service to your child before you can go around and get someone in who can provide appropriate support? If you have a teacher who says "I cannot teach this child", shouldn't the school then immediately provide a different teacher, so that the child receives a free and appropriate public education? Why should it be any different for an OT? Or any school personnel?

Autism resource room for next fall? Great. What do we do until then?

Train the OT? Ok... and what do we do until she is appropriately trained, or a new one is hired?

How do you get across to people that these things needed to be done weeks ago? It is now too late to be thinking about prepping. He's here. Now. And drowning. Fast.

Happy Thanksgiving Week!

Today, I am thankful for my mom.

If I am feeling sad, lonely, anxious, weird, grumpy, scared, angry, out-of-sorts, and higgledy-piggledy, I can go to my mom and feel better. She has the best hugs, the best smiles, and the comfiest shoulder. Plus, we have good taste in shopping.

If I am feeling happy, silly, joyous, excited, thrilled, proud, giggly, and bouncy, I can go to my mom and share it with her, making everything fifty times better.

And if I show up at her house utterly exhausted, she lets me take a nap.

I love you, Mom. Thanks for being my Mommy.

(I'd post a picture, but she hates having pictures of her online.)

Here Come the Holidays!

Don't forget us in your holiday shopping! The JoeyMom shop is open!