Wednesday, July 08, 2009

Wordless Wednesday: Happy Fourth!





Monday, July 06, 2009

Update: War Paint

I took in the letter this morning. We go to Child Study within ten business days. Will now knock self out doing research.

Sunday, July 05, 2009

A Little Understanding: Preparing the War Paint

Friday was quite eventful here. We got to meet Team Stimey, which was exciting and wonderful; but we also met with a psychiatrist about Andy, on advice from our family doctor, who found his constant motion to be- well, not normal. It was an odd interview, with ups, downs, and both positives and negatives from many angles.

For one, I am a little suspicious of a pediatric psychiatrist with an office that is not designed and prepared for children. There were two overstuffed and cushioned couches, the kind my guys like to bounce upon, and I suspect so would many other children, especially ones with attention and hyperactivity issues (and this psychiatrist is supposed to be a specialist in ADHD). The doctor insisted we have an interview in this room, because it the room always used to interview the family; but being alone, I had to keep the guys with me. I can't imagine I am the only person to walk in on my own with my kids, so I was surprised to find in the room a single plastic table and chair- no toys, no crayons or coloring books, nothing for a child to actually do. Should I assume most five-year-olds can sit quietly on a couch while mom answers a lot of uninteresting questions? That is completely alien to me; I have no idea.

Consequently, my children promptly trashed the two couches. They put on their best display of the Witching Hour I could have possibly wished for. With nothing else to do, they turned their attentions to pillows and each other, and the plastic chair. Andy worked steadily to make himself a nest. Joey worked hard to use the same pillows for his own purpose.

The doctor asked Andy to sit on the couch for ten minutes, indicating the clock itself as a visual. I think if there had been a time timer available, we would have had better luck, but the fact that he couldn't even sit for two minutes was pretty impressive for the doctor.

And then I got a taste of how biomed parents must feel when sitting in a doctor's office explaining their experience. The doctor turned attention to Joey, and pronounced him an Asperger's child. When I explained his diagnosis was classic autism, not Asperger's Syndrome, we got into a bit of a heated debate on the matter, because Joey is so obviously social. This, according to this psychiatrist, precludes a classic autism diagnosis, because autistic people "don't like to socialize." I noted that this was not my experience; the autistic children I had met were very much interested in social interaction, but had communication and sensory issues which prevented them from doing so in a fashion that was expected. When Yale and Princeton ere shoved in my face, I tried to graciously back off the subject by noting that yes, my evidence was certainly anecdotal, and I would indeed be interested in the studies the doctor had participated in, though it would be difficult for me to draw a conclusion without actually meeting the subjects; and after all, we weren't here about Joey. We were here about Andy.

I find it concerning that people in an institution such as Yale would make that most greivous and discriminatory assumption, that a person who is not responding to you doesn't want to respond to you, rather than that they may be unable to respond to you. It is hand-in-hand with the idea that a non-verbal person has nothing to say. Prove to me that this person doesn't want to be social. Take out the sensory issues, the communication issues, and the frustration from being repelled themselves, and show this to me. Because honestly, it is not what I have seen. The autistic kids I have encountered, when given appropriate opportunity, have all shown interest in social contact... though often not in ways society might expect. Society doesn't expect a child to play with a stranger's hair, or say things at apparent random, or hit them. Yet these can all be attempts at contact, at social connection.

Meanwhile, back to the children destroying the office. Joey was removed from the equation briefly, but apparently the improvement was not considered significant. With Joey's return, the situation exploded. Andy even bit Joey, upturned the plastic table, and kicked at me. I haven't seen him that bad in a long time. Yes, we were in rare form; but certainly this is critical moment when we need advice and help! The doctor did not beat about the bush, they wanted to know what steps I had taken to get him help. I explained that I had been through Child Find twice already, and been told he was fine; I had moved him to his school to give him more movement and opportunities for heavy work and sensory self-regulation. Also, I had presented a letter from my private OT with accommodation recommendations, only to be brushed aside. The doctor was, to be gentle and reserved in my words, appalled. Why had I not been given an IEP? (and I did not appreciate being upbraided about it, especially after I had just said I had been through Child Find not once, but twice.) I think the doctor was just as appalled that no one in the Child Find had picked up on the problem.

Because according to the doctor, Andy has a very severe case of ADHD. Severe enough that the doctor wrote a letter to present to the school to that effect, and STRONGLY (with double underscore and large letters) recommending Andy have an IEP- and didn't charge me the usual $35 for it.

There were bright and encouraging points in this conversation. First, the doctor wants to avoid medication if at all possible. They even impressed upon me more than once that the school had no right to tell me to medicate my child, they had to provide appropriate accommodations with they assumption that he would not be medicated. I got the feeling this was a common problem, and I was actually glad to have this emphasized. The doctor wants to do nothing at all until October, so that the school is forced to deal with Andy as-is and discover his needs and challenges.

I have no intention of waiting two months for Andy to get appropriate educational accommodations. I intend to take the letter to the school Monday morning and make a formal request for another evaluation. Maybe someone will get the idea that I am not nuts (as I am sure they consider me right now). Well, maybe "nuts" is too unprofessional; "pushy"? "demanding"? "crazy as a loon"?

Am I concerned that we had a diagnosis of ADHD because we went to an ADHD specialist? A little, considering some of the other issues we encountered at the office. So JoeyAndyDad and I have done what we always do when presented with something we feel we are completely ignorant of: we have started to do the research. I'll keep you posted as to what we find when we get an idea of where to look things up (ie, when we've gotten a good bit beyond our Google PhDs and into real materials). I also will be taking a copy of my letter to our family doctor, and see what information I can get there. I may even contact Kluge. But again, I am left with a lot of questions, not the least of which is, what is the connection between ADHD and sensory processing disorder, and the autism spectrum?

But I have a lot of hard questions to be asking the school first, and I want answers, now.

Saturday, July 04, 2009

Proof that Signing Time rocks.

Seriously. Signing Time! rocks.

Thank you, Rachel, Leah, and Alex.

Friday, July 03, 2009

Go Team Stimey!!!!

So we met up with Team Stimey today at Wakefield, the birthplace of George Washington and site of the Great Turkey Adventure. My guys were very very excited, because I had told them they would be meeting three new friends: Sam, Jack, and Quinn. Joey has been very happy about meeting his "three new brothers!" Andy was just ecstatic we were going somewhere and were going to be with other boys.

We had planned a post-lunch extravaganza, but failed to take into account two important things: one was our appointment this morning with the psychiatrist to discuss Andy; the other was that it was Fourth of July and poor Stimey had to drive through holiday traffic. We managed to get there all the same, and meet up for our tour of history.

Stimey, Alex, Sam, Jack, and Quinn (Team Stimey!) are, as you all know, completely and totally awesome. But until you meet them, you have no idea how totally awesome they really are. For example, Stimey remembered to pack cold water for each of her three boys. How totally awesome is that? No, wait for it... she gave two of the bottles to my boys (I didn't pack water because we usually just do our circuit and get something to drink at the end). And she did not even complain once when my boys completely drained both bottles, leaving her three with a single bottle to split between them. Oh, and she brought pretzels, too, which my guys promptly snarfed.

Alex is totally awesome, too. He had a knack for finding cool stuff to show the boys, like a bee hive, and a rabbit skull, and animals. (Sorry about the beaver, Alex. That was all my fault.) He also had a knack for keeping up with little dudes while Stimey and I looked for strays, usually Joey and Quinn. When we had the little dudes together, he scoped out coming attractions.

We were pleased to discover that Team Stimey likes animals as much as we do, while still liking history about as much as we do. Which means the boys were enamored with the animals, and Stimey and Alex wanted to see the house, even though the kids found it a little boring. All of the animals were in pens today, probably because there was a huge crowd for the Fourth Weekend (a whole two dozen people! Very exciting! We actually had to share fence with a couple other families!)

Did I mention that Andy and Sam turned out to be bosom buddies? Andy was delighted to have a new friend, especially a slightly older, and therefore totally cool, friend. He has made a picture for Sam already, and insisted we call Sam, and he was bitterly heartbroken when Team Stimey didn't come home with us to live forever and ever. Oh, and he was upset that he forgot to bring Beavery and Blankie with him to show Sam. So Sam, here they are:


Tree-climbing turned out to be a great favorite activity as well, and fig trees can be really cool to get into. You could tell Stimey's kids were more practiced at the art of tree climbing than my guys. I need to get them into the woods more.

Andy showed off his adept stick-collecting skills, including finding this cool walking stick. Or wizard's staff. Whichever. So here's Gandalf and Sam walking up from the river bluff... In case you can't tell, Andy was quite in his glory, with a big new stick and his new friend.

Joey was having a grand afternoon, too. He discovered that Stimey wears a watch. His afternoon was all set. Better still, he discovered he could set it himself, pulling the small pin and twirling the hands about to change the time and (even better!) the date. Joey did connect some with Jack, but once he found that watch he was all about Ms Jean and her wrist.

Andy and Sam remained bosom buddies, climbing the fences to see the baby pigs and the cows. There were quite a few animals out today, which is always nice, but no fowl. There must be a fox about again. And thank God, no turkeys. In fact, they had the blacksmith shop open and the living history going, so we got to snatch a few minutes of the talk about life as a colonial blacksmith.

Stimey is so awesome, she gave me a Stimeyland pen. You know you are jealous, just admit it. I have one and you don't!!!

Thank you, Team Stimey, for a most excellent afternoon. We had a fabulous time, and can hardly wait to join in Camp Stimey another day. Maybe next time we'll convince you to come home and live with us. Because you totally, totally rock.

Wednesday, July 01, 2009

Wordless Wednesday: Out of This World





Monday, June 29, 2009

Thought on speech therapy

We're having an interesting issue with Joey's speech therapy. He's been saying he doesn't want to see Ms. Nikki (his private therapist). Is this just part of him being tired from school and his tummy troubles, or are we seeing some therapy fatigue?

We're toying with the idea of going with a shorter session with a new therapist. Nothing against Ms. Nikki (who brought this to my attention and said she is not offended, it happens), she has really been working OK with Joey. Perhaps a new face, with some new things to do and approaches to try, will bring some novelty and fun back into speech therapy, which may seem too much like work as he gets older.

However, I think we ought to consider some of the other issues we have seen with the move to the new office. For one, there s now a mini-office in the therapy room- a desk with a computer and files and things. This computer has been causing a lot of headaches, and I think it is a serious distraction for him. The old rooms in the old office were just rooms, they didn't have the computers and things in them, and I think that worked better for Joey. Also, a lot of speech therapy seems to involve tables, instead of using the whole room and activity to promote speech. After sitting in school all day, Joey may not be too keen to sit around another room doing more table-top stuff for another 40 minutes.

One thing about the OT is though there is a general structure to the sessions (half fine-motor in the "small room" , half gross-motor in the "gym"), every session is a surprise. What will they make? What games will they play? What will they do? Our OT has a knack for trying new things, mixing up new activities with old favorites. There is a sameness to the speech therapy, you sit at the table and talk about what you did today, and work on asking and answering questions. This has been pretty effective, actually, but it may be getting old as he masters these skills in a basic way.

So what to do? Speech is a definite issue, and his oral communication is still seriously limited. His use of language still needs to be addressed so he can function and communicate with his teachers and peers. As nice as it might be to think the world will learn to speak Joey, its definitely not realistic. Right now, we're weighing the options, and making sure this isn't really about him just feeling bad in the afternoons; but I think a little freshening up might be in order.

Sunday, June 28, 2009

Celebration Day in Mom's Hometown







They had a great time, but got tired and finally melted. I think Joey could have stayed on that jumping thing all afternoon.

Saturday, June 27, 2009

Random Thought

As we progress through summer and prepare for Andy to go into kindergarden (already???) and Joey into second grade, I being to wonder about schools and systems and how kids are expected to learn. I've been carefully "reminded" how much more "serious" second grade will be, as we near that all-important SOL year of Third Grade.

Joey's kindergarden was just wonderful. He had wonderfully talented teachers, and really bounded forward in development and learning. This past year we made strides, but nothing like kindergarden. Its a amazing what a little support and a loving, caring environment can do, an active and engaging environment.

Why can't all the rest of the grades be like kindergarden?

Why can they be active, making information hands-on and providing context and relevancy? Teach the math, then get the kids to "play store" in "centers" (maybe even have a real class shop as they get older!) Why sit behind a desk all day? They'll have time for that when they are grown and working. Get them up, get them pretending to be caterpillars, get them thinking about history and what it was like to live in the past (and appreciate our progress forward!), get them doing things outside the box!

How much more fun would everybody have at school if the abstract things were then immediately put to use?

I bet there are schools like that. I'll be happy to hear all about them in the comments. Too many kids spend too much time sitting at desks not understanding why what they are supposed to be learning is in any way important to them.

Thursday, June 25, 2009

More Sign, More Speech

My kids go through "periods" with TV shows. For a few weeks, they will only watch Pinky Dinky Doo and Magic School Bus. Then those are set aside, and we will only watch Little Bear or Caillou. A few weeks later, any besides http://pbskids.org/zoboo/, Max and Ruby, or Oswald is instantly nixxed. Some movies get put into the rotation (we've been watching a lot of Toy Story II lately). I'm kind of that way about music, where I want a song over and over for a few days, then won't want it for a while.

The last couple of days, Signing Time has returned to the rotation. This is great, because whenever we have more sign, we get more speech. This time, Joey has been proudly showing me his signs, and the boys are singing some of the songs. Andy was all excited to see Rachel signing "candy" again. Joey has been chattier, even after school.

More chat is always a good thing. Even if it devolves into chanting, its all processing and language, and that means we're prepping for a leap forward. It also suggests that his ESY program is going well; when Joey is depressed, he is not interested in moving forward and learning things. So once again, we send thanks to Alex, Leah, Rachel, and Hopkins. Looking forward to good days ahead!

Wednesday, June 24, 2009

Common Sense Prevails in the Supreme Court

That's right: if the school denies you special education, and you prove independently that your kid needs special education support and thus put your kid in a private school so s/he can have an appropriate education, you can be reimbursed by the school for the tuition.

Go ahead and go read about it. It's fabulous. Then come back.

Are you back? Good.

Now, I am not a legal analyst, but this looks like good news to me. What do I think it means? I think it means:

All students, not just students with special needs according to a district's definition of "disability", have a right to a Free and Appropriate Public Education.

Students with disabilities who are struggling with academic and life function skills (such as social skills), whether they meet a district's strict definition of a disability (which around here requires a 25% delay. 24%, and you're screwed) or not, still have the right to a Free and Appropriate Public Education.

Schools will want to be considering the quality of their in-house special ed services and making sure they have services available that are appropriate for the kids in their system, because that's usually cheaper than private school tuition.

Schools need to possibly reconsider their definition of "disability" and how they screen for kids (Child Find), to be sure kids who have disabilities which effect their ability to learn and function receive the support they need to have a Free and Appropriate Public Education.


Why is this such good news for us? Because it fills in some of cracks too many kids fall through, and that we are scared stiff Andy might fall through (well, kids like Andy, but who don't have active parents like us making sure he doesn't fall through anything, even if I have to homeschool him myself, by God). Those borderline cases where districts deny service, but the kids are floundering and need support.

This kind of ruling also stitches up a loophole of schools getting around providing service by simply claiming a child is ineligible for service, through such means as failing to do appropriate screening (intentionally or not), having overly restrictive definitions of disability, or having issues with categorizing a child (such as Virginia's change in the "developmental delay" category, from max age 8 to max age 6... where do they think those two years' worth of kids are going to be categorized?). It seems the thought was if a child was deemed ineligible by the district, that was it. Well, no, it isn't it- if I can prove my child needs support, even if your screening process kicks him out of the system, my child still has his or her right to a Free and Appropriate Public Education, which still needs to be considered and addressed.

And that, folks, is a huge victory or the rights of children in this country, and their right to an education, as stated in the Universal Declaration of Human Rights (and for us, Article VIII of teh Constitution of Virginia).

New To Autism? Read this

Please, please, please, go over to Squidalicious and read this review of Jenny McCarthy's book if you are even thinking about reading it. And check out the really nice bibliography at the bottom. Seriously, folks, get some real information. Pop biomed is not only inappropriate, it can be dangerous.

I mean, I love Ray Bradbury and Ursula LeGuinn, but I'm not about to base any physics articles on The Martian Chronicles or The Left Hand of Darkness.

Don't get caught in negativity and pop-culture abilism. Get real information from real scientists, doctors, and trained specialists. That minefield of people is quite enough to try to navigate without the likes of celebrities obscuring the way.

Tuesday, June 23, 2009

Overheard at our house

“Look, Joey, I’m home for 5 o’clock!”

“No, it isn’t five o’clock. It is four fifty-five. So you have to go away until five o’clock.”

Ouch.

Sunday, June 21, 2009

Because it is true.


New design for the shop. Come by and check it out, and let me know if there is a product you want that I don't have it pasted onto.

Friday, June 19, 2009

Is it Friday already?

We've been having quite a week. Andy has had camp, and gotten to ride horses, cook, swim, and make new friends. Joey has been learning about the solar system and helping at Grandma's office. We got the baby stuff to Ms. Macy. Ups down, all arounds. Joey is packing for a sleepover at Grandma's. I will tell you all about it when I get a few minutes.


Edit: And to cap it off, I got stung by a wasp. Twice. On the face. I think I need to drink more.

Tuesday, June 16, 2009

Saying Goodbye to the Little One Who Never Was

When I went to pick up Joey a couple Tuesdays ago from school, his para was coming out of the school with a beautiful surprise: her absolutely beautiful grandchild. And the news that she was going to be taking custody of this gorgeous little girl, and needed things like a crib and a highchair and... well, baby stuff.

My basement and attic are stuffed to the gills with baby stuff. My guys were well-loved, well-cared for, and fully outfitted. Heck, I have three cribs. Three. See, not only were they fully outfitted, they were fully outfitted in two homes, because when Joey was very little and we thought I was headed back to work, he spent a lot of time at Grandma's while I did the Visiting Professor thing. And then Joey wasn't quite out of his crib with Andy came. My wonderful cousin also gave me a lot of things from her own twins, and those things often came in twos. We have a lot of baby stuff.

I kept most of it because I always thought there would be a third. When Andy was revealed as a boy, it was just part of the plan- that whole "try for a girl" thing (what? Have I never heard of "My Three Sons"?). Well, really, just to have that third baby, that new little one, another round of fresh baby head and powder and tiny little clothes and strollers. (No, I didn't forget about diapers and spit up and crying and potty training and being up at all hours of the night. But it was all worth it.) And that baby was going to be a girl, I just knew it. (Of course, I "just knew it" with Andy, too. Nevermind.) I saved the few girl things we got at Joey's baby showers. I have a small box somewhere in the attic with Holly Hobbie plaques to put on her wall, to "girl it up" a little. I have some mermaid fabrics to make her a quilt and maybe a bumper.

And she's not coming.

I sit now in a sea of baby equipment, sorting through bins of baby clothes. I have a small sack of things I just can't get rid of yet. I know I am missing another box of clothes somewhere, there are too many outfits I haven't seen. I have a huge bin of things to take to Ms. Macy- sheets, towels, clothes, cloth diapers (which make great burp clothes), books, toys. I have a bunch of equipment in the van to take. So I say goodbye to these things, and to the little one who never came, and never was. Perhaps it is an easy thing to be in love with a person who never existed, because they can be anything you wanted them to be. They can be all the smiles and firsts and little soft heads, without the diapers and the sleeplessness and the spit. Yet it is stillhard to say goodbye, when you never really got to say hello.

Sunday, June 14, 2009

Beware the Melting Ice Cream

The saga continues: it is Melty Day, and the trigger for today is ice cream.

Ice cream melts if you don't eat it quickly, especially if it is 80 degrees outside and you are in a sunny car. When it melts, and you have it on a cone, it drips. Those drips might get on your hand. And if you still fail to lick the ice cream, it starts to melt faster, and get drippier.

Hence, Mom in all her glory and stupidity bought the boys ice cream cones today. In 80 degree weather. In a sunny car. With no dish.

In the end, I had a child screaming in frustration and panic with pink ice cream from his hair, down his entire face and front, and into his lap. I managed to get him cleaned up, and with a small dish of ice cream in stead of a cone.

The whole reason from my point of view that we were getting the ice cream is because when Joey's tummy hurts, he's been wanting ice cream; the cold makes it feel better. He's bee very off-kilter today, and finally mentioned his tummy was "burning." So I got him ice cream. Unfortunately, when the tummy is uncomfy, we are on hair trigger.

We have a sonogram on June 30. Maybe we can get some answers then. But I don't think I'll hold my breath.

Friday, June 12, 2009

Last Day of School

Well, here we are, at the end of another school year. Andy is having a water party today; Monday he starts at summer camp, and will go to Hazelwild five days per week. Joey has next week off. I am making big plans for doing a bunch of space stuff with him. We'll see how that goes.

After today, Joey leaves the first grade, and starts with the second grade. This is unusual; school years in Virginia technically run September-September, so he should be a first grader for three more months. We are putting him in with second graders for the first leg of summer school so he won't get bored and will get used to the new level of expected work. I hope that goes well. He met the teacher already, but I haven't. But what else do we expect from our Excellence in Reading and Excellence in Math boy?

So this is my last breath for a week. I expect to be having a lot of fun with Joey next week, a rare treat, no matter what we end up actually doing. I think I need to repair their pool and make sure I'm ready to go with summer... here at last!

Wednesday, June 10, 2009

Wordless Wednesday: So Proud





Yes, those are headphones. He's been having trouble with noise lately. Excellence in Reading and Excellence in Math! That's My boy!

Tuesday, June 09, 2009

I sometimes have whole months like this...

Sunday, June 07, 2009

Time

Joey has a very interesting relationship with time. In one facet, he is utterly fascinated with it. Clocks are talismans for him, totems if you will. A room without a clock can be disorienting to him. He has been telling time since he was very small, both digital and analog. He will gladly tell you if your clock is digital or analog. And if the time on it is correct or not.

In some ways, this is very understandable. Joey loves numbers. Number and clocks are predictable; the cycles of the day mostly do not change. The ebb and flow of daylight is slow enough that it doesn't put him off, except for the spring forward and fall back of time changes. Six o'clock is six o'clock every day, and it is time to eat. Analog clocks have the added bonus of moving hands that move in circles, spinning about the clock face at regular paces.

Because of his fascination with clocks, he also is a stickler for schedules. When we first realized he had a team of 15 teachers and paras at school to deal with, we were concerned he would get anxious with all the changes. The reality is that as long as Joey know where he is supposed to be when, he's good to go. He get anxious when 1:20 arrives, time to go to math, and something puts off going to math.

He has also developed an odd habit of constantly telling everyone the time. When he was very little, and someone asked him a question, he would respond with a color. "What day is it?" "Red." "Where is your coat?" "Blue." "What is the capital of Sardinia?" "Yellow." "What is the average air-speed velocity of an unladen swallow?" "Green." Now, he tells you the time. "Joey, what happened in the story we just read?" "It's 10:42!" He also announces the time at (apparent) random (though I suspect he has reasons for barking out the time at that moment that we just don't understand yet). You can be going along in a lesson or conversation, and suddenly Joey will burst out, "Look! It's three o'clock!"

So powerful is this connection with time, I talked the tooth fairy into giving him a watch. He straps it on each morning, happy to have his little time-totem close at hand. I thought about getting him a pocket-watch instead of a wrist-watch, but I was worried about it getting lost.

Which brings us to the other facet. As much as Joey loves time, the concept of "past" is very difficult for him. This abstraction of time is something he struggles with, far more than kids normally do at his age. The symptoms of this lack of understanding are not all expected. Yes, he has a very difficult time with history and placing figures and events on timelines, or understanding these people are no longer walking around. However, it also means he has trouble with tense use (what is "past tense" to a child with no grasp of "past"?), trouble recalling events of the day, trouble connecting consequences with actions.

We have been working on this by showing him lots of movies and books of himself in the past. Showing him baby pictures, old video clips, clothes he used to wear. Our next step is to increase exposure to pictures of me, JoeyAndyDad, and Grandma in the past, when we were children, etc. If he can grasp that Mommy was once a little girl, we can start working back from there.

The idea of a past-less existence is one of the more difficult things in trying to understand Joey and his views of the world, at least for me. I suppose as an art historian, the idea of having no history is very strange. I know many cultures did and don't have an idea of historicity, the past is unimportant, the future is no significant, because the now is eternal; but that is not my own culture. We live in a world where Barbie dolls are kept "mint in the box" to be collector's items, instead of given to kids to play with and be destroyed by use. Nostalgia is a marketing tool.

With his close affinity to time, we hope we can use it as a tool to understand "past." Then we can move into the idea of "Once upon a time"... well, maybe I'm getting ahead of myself.

Friday, June 05, 2009

Andy's Show

Patiently waiting for the cue to go on stage.

Mom had to help get the star warmed up.

Then the sticks came out- and Andy was all about the Stick Song!

Then Andy got rockin' an rollin', and did fine. If I am always going to be that distracting to him, how will I ever be able to see him perform at school again?

Thursday, June 04, 2009

Kindergarden preparedness

Andy had his concert tonight, singing with his class. It was a little rougher than anticipated. The noise was getting on the nerves of several of the other kids.. so you can imagine the state poor Andy was in. I stood with him for the first few songs, coaxing him from the bleachers to his spot on the stage.

Mommy won't be there to coax him in three months. Mommy won't be there to hug him and comfort him when the cafeteria gets overwhelming. Mommy won't be there to get him to his feet and into his place.

I wont be there.

None of the other kids needed to be coaxed, hugged, and have Mom beside them to get them going. And once he got going? He was great. Perhaps not perfect. He didn't seem to know the words the way the other kids did. He wanted to run around more than the other kids did. Getting him to stay in his spot between songs? Oh, right.

How do you explain this problem to people? How do I get the school personnel to understand? Do I really have to slap him with a diagnosis to get them to listen to what i am saying? am I not saying the right things, in the right way? Does it take a label to get people to really look at anecdote and think about evidence?

What do I do if Andy isn't ready for kindergarden?

Quick update

We saw the gastroenterologist, took some blood, took some pictures, and he'll call me next week. In the meantime, Joey is on Kiddie Zantac to try to get his stomach more comfy. He's really out of sorts. He hit his aide today. I hope once he is more comfy, these bursts of inappropriate behavior will cease. But I suppose we'll just wait and see.

Tuesday, June 02, 2009

Circles

Oh dear, is it Tuesday already? The semester has begun again, the boys are going in circles, we have an appointment with the gastroenterologist tomorrow, but the paperwork didn't get here and I have no word on having Joey's test pics to take with me (which may make it a wasted trip to Charlottesville), I'm running about like a chicken without a head, and... is it Tuesday already? I thought of four or five really good posts, didn't write any of them down, and where's my head again? Oh, there it is. Anyway...

Saturday, May 30, 2009

Yet Again



Yes, folks, we have yet another victim of the Blue Bunny. Joey has asked the tooth fairy to bring him a truck. So I am off to the toy store, since all my reserve stuff is cars, not trucks.


Edit: I got him a watch and a matchbox truck, and I'm still under five bucks. Because I rock.

Friday, May 29, 2009

How I Got on the Radar

How did I miss this? I'm famous! But now, I'm also apparently on the radar. I said a lot more to the nice lady who interviewed me, but this looks like the heart of it.

Edit: Hey, look, the quote is all over the place, like here and here. I'm now better known for autism than for South Asian art history.

Is that a good thing?

Thursday, May 28, 2009

Rainbow Days

Rainbows have become associated with autism, mostly because of the term "autism spectrum disorders." The wide variety of children's abilities and needs "over the spectrum" is represented by the range of colors, blending one through another. However, I like the rainbow for another reason. I was brought up with the story of the Flood, and God's Promise.

the details of the story are unimportant. It is the idea of God's Promise: hope, life, and love. that is what is important, especially when you are in the thick of things. The rainbow reminds you, even at the edge of a storm, that there is sunshine ahead, that the sun is there behind the clouds, that no storm lasts forever.

That is good to remember in the midst of a hurricane.

When you find yourself in the midst of stormy days, it is good to remember and think about the Rainbow Days. We've been in the midst of a storm here. Joey has been having a lot of frustration and discomfort. Andy has been bouncing around like a pinball. I've been having a lot of bad days, especially the confusion about the fall schedule and what classes I may or may not be teaching; and when I am having a bad day, I can Guarantee You that Joey will be having one, too. These boys are very tuned in to my moods, so when my mood fails, everything goes to pieces.

That is when we think about the Rainbow Days. Days when the boys get to go play in the park, and have fun running about being boys. Days when Joey uses a lot of words and draws lots of puppets to cut out and play with. Days when we have pool parties, days when everyone is up for a nature walk, days when we make cookies. When things are clicking along, and everyone is making progress, and life is sunny. Looking through the storm to that sunshine, you can see the rainbow.

Not every day will be stormy. That is God's Promise.

Wednesday, May 27, 2009

Screaming Mimis

It has been a rough few days here. Joey is not feeling tippy-top, and his schedule has been thrown to the four winds. Monday was a holiday, and yesterday was a field trip. His aide said he did great on the trip, but he was a screaming mass of child at speech therapy. Today should be a "normal" day, but we'll see.

My work is all screwed up. I usually teach online, but the new person isn't getting much training or mentoring about the system or the class structures. She keeps offering me "classes" that don't exist, or seeming to conflate live with online sections. Consequently, I have no idea what is going on, or what I am teaching, and don't have my fall BlackBoard shells, and it's almost June! Oh, and did I mention I have to redesign the classes because we are going to be using a new textbook?

Ok, this morning's job: find a gastroenterologist for Joey. Yay.

Sunday, May 24, 2009

Twelve Years



Happy Anniversary.

Friday, May 22, 2009

Life With Joey and Andy: What I Have Learned So Far

One of the great joys of having children are all the things you learn from them. They can teach you a lot about dealing with life, people, and reality; they bring you a breath of youth and new eyes.

1. People do things for a reason. No matter what you think of another's actions and words, none of it comes ex nihilo. That kid tantruming in the store aisle? That's not random. Is the child tired, hungry, bored, overwhelmed? That adult tantruming in the store aisle? That's not random, either...

2. Don't judge people without knowing those reasons. Overreaction, or inappropriate reaction, makes everything worse. Even the Witching Hour has a reason- tired, overwhelmed kids excited about the day and seeing each other easily turns to bickering, whining, and hitting. Distract and Engage works far better than Yell Until your Throat Is Sore, and is far less traumatizing for everyone involved. Assuming someone is "just spoiled" or "being unreasonable" leads to trouble. This screaming is reasonable to the child; it is our job as a parent to sleuth out the reason and work on the cause, rather than trying to just treat the symptoms.

3. Let them be in control sometimes. This one is very hard on me, much harder than I was expecting. If you don't let kids have control, they don't learn how to do for themselves. Yes, it is faster and easier for me to make the peanut butter sandwich, zip the jacket, and water the flowers. However, it is important for Joey and Andy to learn to make their own lunch, zip their own clothes, and care for our garden and world. Assuming competence includes allowing them to practice and demonstrate that competence. Oh, and if you let a child have control of a hose, they will spray you. Just saying.

4. There is a whole person in that package. My folks used to say this about babies all the time: "There's a whole person in that tiny little package!" But it is true. Your children are not you. They are their own people. Its one of those lessons you have to learn on your own, no one can tell you (no matter how many times they tell you). These boys are two very different people. As I told the school folks on registration night, Andy isn't Joey, or even Joey's twin; he's a compliment. Joey is laid-back, Andy is a firecracker. Raised in the same house by the same parents. Wow.

Yeah, there's lots more. But it's been a rough week. So take one more lesson: Life is short. Squish your kids often.

Thursday, May 21, 2009

Happy Birthday, Andy!!!

Five years ago today:





Wednesday, May 20, 2009

Wordless Wednesday: Brother Break


Monday, May 18, 2009

Ups, Downs, All Arounds

We had our yearly check=up today, Andy needed to be up to date for his school health forms for kindergarten, and Joey is looking round again. We left with a fist full of paper, four shots, and lots of recommendations, along with instructions for more appointments.

We are getting an upper GI done on Joey. We are looking into whether his stomach is emptying at an appropriate and consistent rate. We are also interested in sensory issues related to feeling full- does he feel fullness in a timely manner, or does he have some kind of delay?

Andy is headed to the psychiatrist. We are screening for hyperactivity as well as pinning a recognized label on the sensory issues he's having (sensory integration dysfunction isn't in the diagnostic manual yet). Our doctor also wants some more medical eyes on the situation, and documentation for the school. The results of my meeting with the principal haven't been exactly comforting. She also felt we needed to emphasize the need for small group situations and minimizing noise to avoid overstimulation.

So there we have it. They are both pretty healthy, and in the 95% for height. Wow.

Sunday, May 17, 2009

Sunday Vignette

We've been having trouble with Joey and his seatbelt. He doesn't like it, and is always unbuckling it. He knows I get upset when he does this, which I think only enhances the charm.

We finally reached the top of our star charts today! Off to Chuck E. Cheese we went! JoeyAndyDad and I are both feeling crappy, but CEC involves sitting mostly in one place and having children appear at regular intervals to claim coins. We were really proud of those boys- they were good enough to get the CEC, they were perfect in the CEC... and then we rode out to tell Grandma all about it.

Two tired boys in the car. Yes indeedy, what were we thinking. We had several rousing rounds of the latest soundification (which is clearer than usual: "If we eat or drink on the bed, we might get the bed all dirty!") We rounded the corner for home, and JoeyAndyDad glanced into the rearview mirror.

"Joey! You're unbuckled!"
"Shhh!" came the anxious reply, "Don't tell!"
After a single heartbeat, JoeyAndyDad shoots back, "Don't tell? Who am I gonna tell? I'm just your father!"




(By the way, this post is with Joey's approval. He is reading it as I type, and giggling hysterically!)

Saturday, May 16, 2009

In the garden

We've been playing outside and enjoying teh nice weather when we can. Uncle Lou made us a great game to play, and we've been having at it!

Yay, sensory overload of outside! the sky is high and blue, the roses are bright and smell great, the grass is cool and green!

Time for a freezy-pop.


I put out the bubble-machine to make things even more exciting!

Joey showing off his new sandals. He decided his feet were hot in shoes. I don't blame him a bit.

Be sure to come in my garden gate.

Thursday, May 14, 2009

The Stars Go Up, The Stars Go Down

We have started a new motifvational reinforcer system here. The old system was based on 1-2-3 Magic, where they had three shots, then the reward was removed. We were working for stickers, and at teh end of the month if we had enough stickers, we got to go to Chuck E. Cheese. We haven't been in two months. Not working any more.

For the new system, they have to earn ten gold stars over the course of the day to get their sticker. Whenever they have earned ten stars, they get a sticker. However, in this system, they can also lose stars, so getting to the top of the star chart to get that sticker is tougher than it looks. Good behavior gets rewarded, poor behavior has a consequence. Or is it just a punishment? I suppose we'll soon see.

No one got a sticker today. The net result was one star a peice. Yikes. It's been a long week.

***EDIT: After a few days of this system, we're realizing that if the guys make it to the top once, they are going to CEC. This is a lot harder than expected.

Tuesday, May 12, 2009

A Bump in the Road

Ah, yes, you know it is going to be a long afternoon when you arrive to pick up your son, and your usually cheerful aide comes around the corner and gives you The Look. It isn't a frown, really, but it definitely is not a smile, and you know its bad when you see it. Joey bopped around the corner, asking for sandals. His feet are too hot in shoes. This shoe-less thing is something both my boys are experiencing right now-neither want socks or shoes. For Joey, this is very bad, because without socks, his shoes become a military-grade chemical weapon (something he shares with my brother and father). I was hoping that was what The Look was for. I was disappointed.

Joey is back to spitting. This is a huge, huge issue, because spitting is so completely and utterly unacceptable. He's been spitting on the floor and smearing it around, which is bad enough; but spitting in his aide's face is a quick ticket to Ms. T. So we have come back to The Look.

"Don't you have something else to tell your Mom, Joey?" Ms. Macy prompted him sternly.

"I need sandals," he evaded.

"No, Joey. What is the other thing you have to tell Mom?"

He plopped onto the bench. "I went to Ms. T today at 11:35." Time is one of Joey's passions. However, this pronouncement heralded a long, long, long afternoon. Whatever the spitting is about, it means Joey is feeling out-of-sorts. It probably doesn't help that his visit to Ms. T became a bit of a theme to the afternoon. Even Ms. Nikki had to talk about it in speech.

So when I asked him to leave the car seat where it was in the back seat, the world came to a well and proper end. By the time we got home, he was so out of sorts, I had to send him up to his room to calm down. Unfortunately, he didn't; he got more upset, and so I set about making sure he was at least comfortable. Changed clothes, removed shoes, adjusted room temperature and fan speed, found favorite books, picked up items that he had thrown about the room. He didn't want to talk to me, but he spent another ten minutes up there, between raging and talking to himself.

Thank goodness for Dad. A new face, and we can at least get calmer and talk things over. IN talking about what happened today, Joey and JoeyAndyDad also talked about Ms. Macy, and all she does for Joey; helping him through his day, and especially letting him go out into other classes and see all his many friends; and by spitting at her, he made her feel bad. That seemed to really strike a chord with Joey; both that he made Macy feel bad, and that she does so much to help him (especially that she lets him go to other classrooms. Joey really does love having lots of other kids to interact with). He has made her a card and now says he's going to apologize to her tomorrow. And I think this time, it will be more than a kid being told to apologize; this time, it will be Joey telling Ms. Macy how he feels about it. He's sorry, and doesn't want to make her feel bad.

Ah, the Theory of Mind be damned.

Monday, May 11, 2009

Joey: Mythbuster

Myth 5: All autistic people take everything very literally. Consequently, they have trouble with imagination.
I have been recently introduced to two very interesting new characters. The first is a small white bear named Gyp, who likes to drive trucks. Today, Gyp was trying to go to Mystery Island. We went to the park, and at our park there is a rock outcrop, and Joey decided that was Mystery island. He spent the afternoon with Gyp in a truck trying to race to Mystery Island (running back and forth between the playground and the outcropping).
The other we met just this week: Gravy Dillider. I have our first Gravy Dillider story for you, as soon as I get the illustration scanned in to share. No imagination? Um....

Myth 4: Autistic people don't talk. If they talk, they they have Asperger's Syndrome.
Asperger's Syndrome is an ASD. In other words, people with Asperger's Syndrome are autistic. However, it is more than just a distinction of language use. A person with a diagnosis of "classic autism" doesn't suddenly become "Asperger's Syndrome" if they start to talk. In fact, Joey had some language when he received his diagnosis. In fact, one of the hallmarks of Asperger's is normal language development- and one cannot turn the clock back and say Joey has had "normal language development" of any kind, even as his language skills emerge and we start playing catch-up. There is such a thing as a verbal autistic person.

Myth 3: Autistic people do not want contact with other people, they prefer to be alone, or they are anti-social.
I seriously doubt autistic people are any more likely to dislike being around people than anyone else. They may have more trouble expressing themselves in a manner that invites social connection by non-autistics, they may have issues with social skills and maintaining conversation, but that's not the same as not wanting to be around people. (Just like not being able to speak doesn't mean you have nothing to say).
Joey is extremely social, and loves other people. He likes have other kids around, he likes playing with other kids, and he likes knowing lots of people. Joey loves everyone.

Myth 2: Autistic people are savants- what they lack in communication and social skills, they make up for in wonderful gifts.
The idea that autistic people are all like Rainmain remains strong in the popular imagination. I get asked a lot what Joey's "special gift" is. Joey has strengths and weaknesses, like other children. His weaknesses happen to be more visible than other people's, and get in the way of his ability to function and communicate. His strengths help him overcome his weaknesses, and give him talents to enjoy and share- just like everyone else. The older Andy gets, the more I realize how true this is- both of my boys have strengths and weaknesses. Sometimes Joey's strengths are also more noticeable, because his weaknesses are so noticeable, and the contrast becomes striking, like a Caravaggio in a world full of Raphaels. As yet, Joey has not shown himself to be particularly a savant, but he is a very smart and very talented person, and I'm definitely keen to discover what other talents await to unfold.

Myth 1: Autistic people have no sense of humor. (Often this is connected to a lack of social awareness).
Yes Joey has difficulty with jokes. It isn't because he doesn't enjoy them; he has trouble with the subtleties of language required to tell one. However, Joey loves being silly and funny and jokes that aren't language-heavy. Well, perhaps even that is a myth. One of the teachers at school discovered I was Joey's mom and launched into a wonderful story: She encountered Joey in the hall. He's usually such a sunny, happy kid, but that day he was grumpy and making a terrible face (one of his Pinky Dinky Doo frowns, which are quite dramatic-looking). She asked, "Joey! Where's your smile?" He replied, in his grumpiest voice, "Not here!"
She met him later that day. He looked up, saw her, smiled like a Cheshire Cat... and pointed at the smile with both hands, to let her know his smile was back.

Myth busted.

Sunday, May 10, 2009

Happy Mommy's Day!

Joey has invented a creature/character to tell "made-up stories" with : Gravey Dillider. So far, Gravy Dillider is a light purple bear who likes to swim in purple water in a pond, he likes to splash in the purple water. He is a main character in today's story (though we haven't heard the story yet!) so stay tuned... we may have The Adventures of Gravy Dillider!

I can't think of a better Mommy's Day gift from my son.

Saturday, May 09, 2009

Happy Blogiversary to me

Three years ago, semesters were closing, IEPs were looming, we were coming to the close of one age and entering another: kindergarten. Speech was a new thing, something to celebrated with every syllable; answering questions was something to blog about. Andy had just moved into his Big Boy Bed. Joey's default mode of communicating any kind of frustration was to scream loudly in my face, the closer the better.

We were already three school years into our "new" life of being diagnosed; of interventions, therapies, IEPs, and and accommodations. We had plowed through the fear, and emerged on the other side with the realization that Joey was still Joey. He hadn't changed. We had. Why had we been afraid? Because so much was unknown, and people who were supposed to be helping us were actively blocking us, fighting us, making it difficult to get Joey help, for us to get help. We wanted to help others get through the fear, fortify themselves with information, and share our experience. Don't other people get tired of reinventing the wheel all the time?

What we discovered after a while was a network of other folks, and we have soaked up your experiences and knowledge to help us help Joey and Andy. Today, Joey can ask questions and initiate conversation. He reads and writes and lets us know what he needs. Andy is about to start kindergarten. Both boys are toilet trained, screaming is not the primary form of communication, and we are saying goodbye to old friends like Oobi and Blue's Clues... my boys are growing up!

And to you guys: thank you.

I may not be a big, wide-read, famous blog, but I think we are achieving our purpose: a comfy corner to take a breath, shed the fear (and the exhaustion), and know we are all here having our favorite beverage of choice on the comfy couches. We're pleased and honored to have you here. And today- have some cake and ice cream, too.

Friday, May 08, 2009

Update soon

We are through our IEP for Joey for next year. Joyfully, it was a smooth meeting, and things look good. More later when everything is processed and wine is consumed.

Wednesday, May 06, 2009

What is "Tongue-Thrust" in Spanish?

In Andy's preschool, they have Spanish class every Wednesday. I think it is useful to learn new languages, especially since I have a difficult time with it and the world is full of people who do not speak English. Unfortunately, I failed to consider the issues my own child might have with learning a different language.

To be honest, Andy has very little trouble with language, so I didn't think much about it at all. It is the speech that is the trouble- articulation. Why wouldn't I think, if he has trouble articulating in English, that he wouldn't have trouble articulating in Spanish?

Lately, he has been very upset about going to school on Wednesdays, because he doesn't want to do Spanish or Music, his two Wednesday specials. So I have doing a lot of trying to pull out of him why he doesn't like Spanish or Music. And this morning, I got some answers. Apparently his little friend thinks singing is "yucky" and Andy is upset about that, because he likes music, but he doesn't like his friend saying that the songs are yucky. And then there was Spanish.

"Worth er yucky."
"The Spanish words? You don't like the Spanish words?"
"No."
"Why don't you like the Spanish words? What words have you learned?"
{Tangle of sounds that included, I think, "Spanish", "pretend", "words", "don't like", "yucky."}
"Spanish isn't pretend. It is a real language. We speak English. Not everyone speaks English. People in other places speak different languages. Some speak Spanish; people in Spain and Mexico speak Spanish. Some people speak French, or German, or Hindi... and Mommy learned a language called Sanskrit! People spoke it a long time ago."
{pause, then something that I think included something about sounding funny.}
"Are you having trouble saying the Spanish words?"
"Yeth."
"They don't sound right?"
"Yeth." {Something that included the name of his friend.}
"Does {Andy's Friend} say the words? Can he say the words?"
"Yeth."
"And you have trouble saying them?"
"YETH!"

Oh, dear. So we talked a little about how it isn't his fault that he has trouble saying the words. And I told his teacher that not being able to say the words is frustrating him, and I suspect someone was making fun of him not being able to say them properly- or he perceived they were making fun of him. Perhaps the Spanish teacher needs a little birdie to remind her he has an articulation issue?

Tuesday, May 05, 2009

End of another semester

Well, here it comes. If you want the snark, you need to go to another blog. Here, its just exasperation.

I'm an adjunct. Just as my career was about to kick in, I had life happen, so here I am. And I can tell you, it gets very frustrating this time of year. At the end of spring, you find out your fall schedule, and try to wrap up another year of academic fringes. Students start to cuss you out, especially online (hint: don't start snarking me on Rate My Professors until AFTER the grades are turned in. I can kinda tell who you are by what you complain about.)

Funny, but the vocally negative students are the ones you wanted to smack upside the head most of the semester. Who continues to read a book after the professor finishes roll call and steps forward to start the lecture? Who goes three weeks into a semester without either buying the textbook or locating it in the library, and thinks this is a legit excuse to have deadlines extended? What is the point of being a good teacher if people are going to complain that you actually expect them to do work, and do it by the due date. Do these kids really think their future employers are going to accept unproofread work, or late work? Talk about the fast track to no where- or more likely, the unemployment line.

And hey, our new department head seemed really happy with the student reports about my teaching, so much that she mentioned it at a faculty meeting... but it looks like I'll have fewer classes in the fall. How does that work?

Someday, I will get a real job. That day is coming. I can feel it. I was kinda hoping it would be at one of these local colleges, actually, because I grew up here. This is home, and I want to really be adding to it. But if this is the way it is going to be, maybe a change in career is in order. Adjuncts are a dime a dozen anyhow.

Sunday, May 03, 2009

IEP Flashback

Yes, IEP season is once again upon us. Ours is Friday. So if there is no- or a lot of blogging this week, that's why.

IEP meetings are one of those facts of life with a special needs child. Here's some of the useful (I hope) advice I have given before:

The Crazy Season
Powerpoint Thinking
And for a little comic relief, For Stimey.

I'll share thoughts as I move towards this year's IEP, and continue to think about the meeting with the principal about Andy.

Happy Birthday to my MOMMY!!!!



Happy Birthday, Mommy!