Wordless Wednesday: Playing in the Park

Two Big Chickens in the Afternoon

In an attempt to get the boys to relax, and give me a minute to just enjoy watching them being themselves while taking a big breath, I wandered out to Grandma's house (that would be my mom's) with boys. Actually, it was a bit of a hectic morning, unexpectedly; my classes were all up in the air again, and I had to go straighten it out. I also had Andy's stuff to straighten out. Things are clicking along on all fronts again. (Yay!) So, breathing. It's a Good Thing.

Mom took Andy with her, and I went to get Joey off the bus. Another surprise- one of Joey's beloved (and practically new) crocs got broken at school. Joey doesn't do broken. He perseverates on it to anxiety meltdown. Just what I really didn't want. So we popped into a shop that fortunately had a pair in his size on sale. Disaster averted.

We then scooped up some Happy Meals (the boys love teenie beanies, and its the last day), and off to Grandma's we toodled, to slide on her big blow-up water slide and Sit. Down.

Blowing up the big slide is always an adventure. It is too heavy for us to move around, so once it is set up, there it stays. I pull the motor through a window (it can't stay out because- get this- it can't get wet.) Then I hook everything up, and turn on the switch. As it inflates, I chase the spiders off, and rescue several with my famous Spider Rescue Stick. (the only spiders I believe in killing around here are black widows. I don't like them in my house, but spiders eat other bugs like biting flies and roaches). Anyway, as I am rescuing a particularly large spider, Joey is saying, "snake! I see a snake!"

(How many of you just found yourself clinging to the ceiling?)

Grandma and I took a few minutes to see it ourselves, but there it was- I had practically stepped on it putting up the pool. Now with all the noise and bother of the search, it was poised for self-defense. A small, brown, diamond-mottled snake, with a swollen head... hearts stopped. Praise of Joey commenced. But I was now trapped in the pool with a long stick and a measure of distance as my only defense. Yes, folks, Joey had just saved us pain, agony, and possibly his and his brother's lives.

It was a copperhead.

We got the boys back to the porch, and I managed to get the pool turned off. But now we had a copperhead to deal with. When I was young, we didn't see many copperheads around my house, because there was plenty of space for them elsewhere and we nurtured the company of large black ratsnakes, who eat copperhead hatchlings, and black kingsnakes, who eat copperheads. With all the clearing around here (why do people buy wooded lots, then cut down all the trees???), the copperheads are being driven this way, and the old kingsnake that used to hang out around the garden hasn't been seen in a while. I hadn't seen a live copperhead in quite some time. I wasn't enjoying it now. Especially one eyeing me and my stick that look of "jab me with that thing again, you idiot, and I'm going to show you exactly how long I am!"

Sorry, herpatologists out there, but to me, copperheads are the same category as black widow spiders. They are beautiful. And the must DIE.

But as mom as I stared at this little snake, an he glared back at us, we were at a loss. I've never killed a snake. Its not like a little spider that you toss a shoe at. If I get it wrong, I could be in big trouble. We found a little grasscutter blade tool thingy, but the handle was only four feet long. And it was looking right at me. With that look. You could almost hear it say, "Go ahead, idiot. Make. My. Day."

And mom was reinforcing the fact that it really, really needed to join the Choir Invisible. Maybe even pine for fjords. She was right. As I said before. DIE. DIE. DIE.

And there it was. To get a good swing in, I'd probably have to chop off part of the pool, and it's position under a bench attached to the garden wall meant I would be at a very odd angle.

"Mom," I said, "we can't do this."

In other words... bokbokbokbokbok! I'm a chicken. No, wait, we're both chickens.

Yes, the snake was allowed to live. And the boys were not allowed to play in the pool. And we have our handy blade tool thingy close to hand, waiting for Round Two: Death of the Snake.

Thing that make you go "Hmmm...."

Well, there's nothing quite like thinking everything is moving along and then realizing you let your guard down and just got sucker-punched. Yes, indeed. That email that comes with that every popular line, "We scheduled your meeting on [date you could have told them weeks ago you wouldn't be in town for if anyone had bothered to call you]. I assume you got a letter..."

Well, no, actually. I haven't gotten a letter, I had no idea the date was scheduled, and that is exactly two weeks from today, when did you think you were going to schedule those four evals you wanted to do before that meeting?

Yes, I've already been embarrassed by being lectured about special education by the doc, when I'm the chair of the frickin' parent special ed committee and had the child screened not once, but twice. Can't I see this child needs an IEP? Well, no. What do i know about "normal"? He just looks like Andy to me. And he can do things like hold a conversation and dress himself. It isn't obvious to me. I had no idea how much support he might need for school, thanks.

But now that it is clear these behaviors translate to needing support, I want that support in place. Like, yesterday. Especially since I'm already Not Happy about being the Third Time. This better be the charm, people.

I'm starting to wonder what these people are thinking. Remember me? I'm the one who shows up with the binder of my kids' paperwork in temporal order? The one with the powerpoints? The one chairing your frickin' committee? Did you really think I wouldn't notice that you haven't invited me to the eligibility meeting, that you haven't even done the evals for it?

Beware the claws. Momma Bear is getting out the war paint.

Different Skills, Different Paths

Last week I took Joey to watch our auto mechanic, Mr. Jeff, working on cars. Joey loves cars and trucks, and the trip was a success. It may not have looked like Joey was fascinated to most people, as he meandered around the lot peering into windows and talking about various things that wouldn't seem related to cars, I could tell he was happy. There were trucks. There were engines. There were tractors. Life was great. Maybe Joey will grow up to be an auto mechanic!

I know we have family and friends who would not approve. Too many people in this society think that a briefcase and corporate tie are marks of success. The decline in manufacturing and industry in this country has meant the worst financial straits in nearly a century. The excuse for getting rid of factory jobs is that people should go into information technology and other computer and service-sector employment, as if there was something dirty and bad about factory jobs. Let's face it. Not everyone is a computer whiz. In fact, it takes intelligence and good sense to be a good manufacturer, a good auto mechanic, a good construction worker.

I have two boys who need to be able to take their own paths, and we are working hard to prepare them for any path they may decide to take. It is likely that Andy will want something physical to do- park ranger? veterinarian? maybe a farmer? or construction? Joey may need something that doesn't require a lot of speaking. He loves cars and trucks- an auto mechanic seems like a great path to take, if he decides he's really interested.

There's more than one way to make a living. Thank goodness. It would be a boring world if everybody was a computer tech or a doctor. Also a hungry one with nothing to live in, sore feet from walking to work, and nothing to wear. Not that we don't need working computers an good health, but there are so many different paths to take. That's one reason we're all made so differently- so we all have our dreams to follow and things we can and want to do.

At the Park

We spent some time at the park today. Joey was very interested in two older girls- well, one was almost eight, and the other was probably no older than 12. The other kids were all little ones, the kind that Andy likes to take around by the hand and show things to. While Andy was indulging himself, Joey kept trying to engage these two young ladies. They clearly were at a complete loss for what to do. He tried several different approaches to engaging with them. First, he noted that the girls were tall, and he liked them. Then he tried to teach them some sign language, and the Signing Time theme song. Then he tried to include them in some of his own play, like asking if they wanted to make a mulch cake and sing Happy Birthday, or announcing he was an ice cream truck, and asking them to get in.

None of this worked. The girls retreated to a corner and were kinda staring at him as he satisfied himself by making a mulch cake (a pile of mulch that you then pretend to eat), then teaching some of the little ones how to sign "black cat." They were whispering, and I was close enough to catch "he's so weird."

And I put the body language, the eye track, and the words together, and realized they were talking about Joey.

"Oh, its OK," I burst in on their huddle from my place by the climbing tree. "He's just trying to play with you. He's autistic."

"I don't know what that is," the older girl replied, but there was a cue, a way she kept looking at him, and now at me- she wasn't dismissing him. She wanted to know; she had made the statement as a question, and was now awaiting an answer.

I have no idea how you explain autism to a 12-year-old girl. I did my best. I explained he had problems communicating and speaking, and so didn't know how to ask the girls to play, or how to include them in his games, and was doing the best he could. The younger girl intimated that she thought him weird as in scary, and I assured her he wasn't going to hurt her, he was just trying to say "Hi, I'm Joey, let's play!" the way he knew how. If they wanted to play with him, they would have to join his game, or explain what they wanted to play, and I would be happy to help. They were unsure, and decided they wanted to do "girl stuff".

But it was a telling conversation. Here was a child not that much older than Joey, but the differences between her social connections and communication and Joey's ability to play and communicate were startling. I am sure they thought he was somehow intellectually challenged, because his behavior and language was so unexpected and unpredictable. The fear was startling, too. I don't think of Joey as scary at all, especially at the park when he is in a decent mood, like he was today. The older girl's interest in him was also something I found notable; she didn't just reject him outright. She wanted to know more about him. I need better language, simpler terms for talking about Joey to his peers- direct but inclusive, language that makes it clear that Joey does things in his own way- so does everybody- and helps his peers find common ground, a point where they include him, and he includes them. How do you explain to a 12-year-old that if they can find a way to include Joey, he's a lovely person to know and play with, and would be thrilled to have friends and to be a friend? That "weird" is really just "different", and we're all different? How does one communicate such a idea in a child at the stage when being the same as their social peers is so important?

And what can we do to help Joey make those connections he so very much wants, clearly wants? What skills does he need to be able to engage his peers, and join their games? What is the disconnect that results in that label of "weird", which becomes the brick wall between Joey and people around him? What crucial social skills are missing? What makes Joey's attempt to engage so very different than how I jumped in on the conversation of these two girls? Why was my engage tactic successful, when his was not?

These are the questions we are now asking, in thinking about the road ahead, the plans for IEPs and programs and therapies. How much frustration can we mitigate, how many skill gaps can we fill, before Joey is 12 and feels that intense need to fit in somewhere, anywhere? What tools do I need to provide and teach as a safety net, if he finds that, like his mom, he fits in nowhere?

Wordless Wednesday: Cars and Things That Go Camp

Counter-productive

There is a magic word in this house, a word that can create a state of meltdown faster than any other. Just the idle breath of this word sends my children into spasms.

The word is "quickly."

This well-known casual prompt to keep young children from dillying and dallying brings on utter panic to Joey. The world is racing past, time goes into warp, and like the White Rabbit, we will now be Late!

It is 8:42am, and we need to leave the house at 8:45 to get Andy to camp. Joey discovers he has no pockets to stash his mini-clock.

"No pockets!" he complains, slapping the sides of his legs where pockets ought to be in any shorts sold for young boys. But Walmart begs to differ. "No pockets!" There is a glisten in his eyes, a strain in his voice- this will not do. I try to think fast, while trying to gather up the things Andy will need at camp and find my shoes, which have mysteriously walked away from the front hall.

"Well, run upstairs and change into another pair of shorts, then, quickly!" The last slips from my lips involuntarily. If I could have, I would have reached out and snatched the word back and jammed it down my own throat. But it is too late. It hangs in the air, as Joey lets out a screech and races up the stairs with screams of "Quickly! Quickly!"

8:44 am. I still hear the screams of "Quickly! Quickly!" upstairs as I manage to get Andy into his flip-flops and out the door.

"Come on, Joey," I call encouragingly, resulting in more frantic chanting of "Quickly! Quickly!" He appears at the top of the stairs, holding another pair of shorts, this one a pair of converted boxers- he is particularly fond of them, but they also have no pockets. "Quickly!" he squeals at me plaintively.

I avert the meltdown by coaxing him down the stairs and helping him into these new shorts, without mentioning they do no have pockets, nor does he have his clock. Fortunately, his watch is strapped tightly to his wrist. This would have taken a lot less time if I had just stopped and instead of using The Word, had gone upstairs to help him with his clothes.

Never has there ever been a more counter-productive word invented in human language. Irony at its best.

Ten Years

We love you, Pop. We miss you.

Seat Belts and Head Resters

OK, so among this summer's Issues, Joey has decided it is delightful fun to play with seat belts and take the head resters completely off. Nothing to get the heart leaping that to be entering a dangerous intersection, to realize your child has decided to unbuckle his seat belt and play with the head rester, which has two large spikes on the end of it when it is removed from its intended position (who designed that?) Every time we get in the car now, we start with a litany of rules:

1. Get in your seat and lock in.
2. Once you are locked in, you leave the seatbelt alone.
3. Do not play with or touch the head resters.
4. Do not touch any other seatbelts, either.
5. Stay in your seat, sitting upright, with your shoulderbelt properly over your chest and your lapbelt over your lap.
6. Do not duck from under the shoulderbelt to lean forward and remove the head rester.

And then we proceed to have constant reminders of these rules throughout the trip. The length of the trip does not matter. So now a typical fly on the window in my car hears something like this:

Internet! Internet! Internet!
Toppit, Doey!
Honey, don't play with the seat belts.
I put glue on Grandma! I put glue on Grandma!* (Wild cackling laughter)
Toppit, Doey!
Sweetie, put the headrest back, please.
Head rest ER.
Yes, dear, just put it back.
TOPPIT, DOEY! (smack)
We don't hit. That's a star.
AAAAAAAAAA!!!!!!!
Joey, sit up, please!
Boys have wieners and girls don't.
Joey, stop playing with the seatbelts. Lock in, please.
TOPPIT, DOEY!!!
Joey, put. the. head. rester. BACK.
It's after twelve o'clock. We are late for getting lunch.
TOPPIT DOEY!!!
Joey, PUT THE HEAD RESTER BACK!!!


Anybody know where I can get locks for headresters and seatbelt buckles? Because the addition to the general cacophony is not good.



*I have no idea why this phrase is funny, what it actually means, or why it has become so prevalent in the chants, other than the amusing alliteration and probably funny visualization. He has never actually put any glue on his grandma.

Wordless Wednesday: The Cyclone Experiment

Weather Camp: Rainbows

This week Joey has no ESY, so we are doing Weather Camp. Yesterday we got a little interrupted because we are looking for boards to replace our front porch (currently the original 1929 boards, and our isn't the only porch in town going bad fast) and got a line on some we thought would be affordable. Anyway, we did manage to take a picture of the clouds in the sky and watch a Magic School Bus on storms, but that was all.

So today we we worked on rainbows. We read the Magic School Bus book on rainbows, then I got out the prism. Joey was very excited about the prism, and is very proud that I let him actually have it, since it is glass and therefore a breakable. He's been making rainbows for me (or trying to) all day. The we put up some cards about different kinds of clouds. We had picked up our print of yesterday's sky, so we pinned it to the board under the matching card (cumulus). Joey was totally excited. There were no clouds when we took Andy to camp, but when we came out to pick him up, there were lots more big puffies out there, so we talked more about cumulus clouds. I'm hoping to do a book or poster on clouds on Friday. I managed to snap a cirrus cloud this evening, and maybe we'll get some thunderheads tomorrow (cumulonimbus clouds!) I doubt we'll get stratos clouds this week, but one can hope.

Tomorrow I'm hoping to work on storms, and do the famous Cyclone Experiment. I'll keep you posted.

Back from New Jersey

I woke up this morning to Joey saying, "Never leave this family again, Young Lady!"

So excuse me while I squish me some boys, and set up for Weather Camp. But I'm back!

IN New Jersey.

I'll be back Monday.

Wordless Wednesday: Berry Farm

It's Poetry

Watching him wander
The other children swirl around him
Swings slides playing games

He walks a steady line a steady trot
Around the timber edge of the playground

A hundred stories connecting together
He chatters the lines, word for word
He wants to swing to outer space

I broke the pencil at school
I broke it on purpose
Frankomank! Baby!
I broke thepencils at school
This is the sign for careful. Care-ful .
this is the sign for danger.
I broke the pencil on purpose
Frankomank! Can I have a freezie pop?
Andy! Andy! Come on the rides!
I want to swing to outer space
Outer space! Internet!
Me-ow. Me-ow. this is the sign for cat.

A constant burble-burble. A constant stream of talk
I remember the silence all too well.

I like your hair. Time to go home.
Welcome to school! Welcome to school!
It's three twenty-six
I have the bare foots. Do you like my foots?
It's dangerous at the park.
In-ter-esting. In-ter-est-ing.
I didn't earn the treasure box.
I'm suppose to listen, all the time at school.
All the time or sometimes?
Look at the time. I'm going to be late!
It's three thirty-five.

He comes and sits with me, pops his thumb in his mouth, leans his head on my shoulder.
"Mom?"
"Yes, My love?"
"I need you."

I need you, too, little man.

On To Phase II

So we have come through the child study portion of the SpEd process, and we now need evaluations. They want psych evals, social evals, educational evals. All the things I thought they would do the last two times I brought him to the system's attention. But that's water under the bridge now.

The next step is eligibility, and these evals are a part of that. The fear? That the popularity of dismissing ADHD will mean these evals will come out as not significant for eligibility. That his behavior will be labeled a discipline problem instead of a real issue to be addressed. We need help teaching him to cope and gain self control with extra challenge of the way his brain works. We're scared to death of being told "no" by the very people who are supposed to be helping.

After all, the last two times we did this, we were told he was just fine and didn't need any help.

When we went through this part of the process with Joey, the fear wasn't that we would be turned down. It was so obvious he needed service that the question wasn't "will he qualify?", but "how much will he qualify for?"

I spent a lot of this last meeting explaining that we need help, why we need help, and about being lectured by the psychiatrist about him not already being in the system. I think it was clear I was Unhappy, but did they move us on because there really is a problem, or because Momma Bear is roaring?

Why is there so much doubt and nerves? Well perhaps because after our last round of Child Find/Child Study, we were told he didn't need service. There was no asking for more evals, even though he spent the entire session in constant motion. What was the message to me as a mom? That the motion and behavior issues were my fault. After all, discipline is the job of the parent. It is my job to teach him to sit up straight at the table and follow instructions. It is my job to help him learn to listen to a story while sitting in a group. Just ask anyone on the street whose fault it is when a child is running around a restaurant, or talking loudly in a library, or when asked to do something, yells "No! I don't like you!" and hides in a corner instead of doing what he is told. Even when all the "usual tricks" you read of in magazines and see on SuperNanny fail (often spectacularly), the school just said he's fine, he's normal, this is just the way boys are. And if what the school says is true... well, it can't very well be the child's fault, he's just learning and being himself as best he can. And there must be a fault, because other kids don't do these things, and they are not acceptable behavior. That leaves... me.

In the meeting, the regular ed representative, a very kind lady and someone I feel is an excellent regular ed teacher, attempted to reassure me by explaining that kindergarten teachers do a lot of transitioning and many of the things my OT was recommending for Andy. We've been through kindergarten and seen the classes in action. We know the drill. Having to explain that we were talking about a matter of degrees- that these weren't suggestions for when Andy is in crisis, but things to do more consistently and more intensely in order to avoid a crisis. Once you are in the middle of an incident, it is too late. And we understand that ADHD is really a matter of degree. All boys have energy... but Andy has significantly more than you expect, and a quicker temper than you can anticipate without being very clear and consistent with everything. If you take him to the cafeteria without support, life will be explosive for the twenty minutes after you leave- not just wild. Explosive.

It's kind of like trying to explain the difference between a tantrum and a meltdown. You can get lost in semantics and forget there is a child here who needs support, more support than his peers seem to require, on a regular and consistent basis. Perhaps we are back to the questions of "why should I need a diagnosis?" and "Why can't kids just be taken as they are, and supported as they need, no matter their label?"

Perhaps I will muse more on that later.

Just wishin'

Just wishing they sold beer at the movie theater. I'd spend the day watching Harry Potter. Just sayin'.

You're Not Alone

One of the big reasons I blog is to give other folks a glimpse of life with an autistic child, to let them know that it is not something to be afraid of, and that there is someone else out here going through things you may be going through. There is a sense of support and security, a sense of comfort, in knowing you aren't the only one out here doing this, experiencing this, trying to help your child and your family.

I know I tend to keep the negatively neatly tamed here. Yes, we have bad days and weeks and months and they get blogged about, but the run-of-the-mill, every-day roller-coaster ride of having children, and especially special-needs children, I kind of leave out for the most part. It may seem our lives are all fun and roses and smiles. Like that last post about the beach? I left out the major double meltdown when clouds appeared on the horizon and I decided it was time to head home before rain hit. Why? Because personally, I find the fun more notable, and more worth remembering than the screaming that followed. Perhaps it is a leftover of being a mom- you keep the baby and forget the labor pains.

Some of my readers have commented to me what a lovely summer we are having. Yes, we are. And no, we aren't. Its been very much our usual roller-coaster. We are having some issues, some of them minor, some of them not so minor. Name-calling, biting, running, melting, hyperactivity, yes, they are still part of our lives.

So folks, you aren't alone.

If you’ve ever been frustrated with your child’s progress (or lack thereof) to the point of wanting to cry or scream (or actually crying or screaming), you’re not alone.

If you’ve ever been so afraid of a regression that you stayed up half the night trying to think of what to do for your child, you’re not alone.

If you’ve cried in public out of sheer stress of dealing with a melt down, you’re not alone.

If you’ve ever lost it in an IEP meeting, you’re not alone.

If you’ve ever prayed hard for a stiff drink while trying to get your melting-down child to a car that was clear across the parking lot, you’re not alone.

All those days and nights of stress, tears, tearing out your hair, worrying, studying, chasing children, and wishing your life was being spent somewhere else, and thought you were alone? You weren’t. I was right there with you.

I am still right here with you. I just want to put out that reminder that there are ups and downs all over, and the ups are every bit worth those downs. There is a reason God put wine upon this earth, and sometimes I need an extra glass, just like you.

If you're having one of those minutes, hours, days, weeks, summers... here's a hug for you. You aren't alone.

Colonial Beach

Normally I would wait for Wednesday to put up pics, but Blogger ate my last post, I'm working to get ready for Andy's Child Study, and the boys are just too darn cute.

Acceptability

One of the most annoying things that happens to us- fortunately far less often than it used to- is when people (complete strangers!) walk up to us in public places and recommend discipline for Joey. The behavior that people find unacceptable was most often that even as a larger child, he would often ride in the cart or walk around the cart. However, he does occasionally squeak or squeal in public when he has been denied an item or when being guided away from ordinary misbehavior, such as touching items on the shelves or begging for toys. Suggesting that I swat my child's bottom is simply and plainly Rude.

We now have our strategies in place for dealing with Rude People. My most common response now is to smile, thank them for their helpful advice, and walk away. If I am blocked at that point, I then note that Joey is autistic, and we are helping him learn to cope with public situations. This deals with the vast majority of Rude People. One thing I have not had to deal with is someone insisting that autism is the diagnosis-du-jour, a-la-Michael Savage. I think I would have to exert a great deal of energy to not slap someone who said something like that.

Fortunately, most the people we meet and strangers who approach us are mostly curious, helpful, considerate, gracious people who show much understanding and patience with us, and who can apparently read my bumper stickers or purse buttons (Yes! You can ask me about Autism!) The general push for awareness has had some effect.

With Andy's new diagnosis, I was expecting the ignorance of strangers- though honestly, I've only had a couple of encounters about Andy's behavior, as when it is just him and me, he's usually quiet. It is the ignorance of friends that has been startling.

After all, it is widespread in popular culture to consider ADHD to be a farce, a medical label for poor parenting rather than a real condition, somehow a conspiracy of bad parents to justify lack of discipline and medicate their kids into a stupor. Comments sections on parenting are full of this widespread attitude. The idea that kids are "overmedicated" for "rambunctiousness" even pops up in mainstream media. It is socially acceptable to deny ADHD and denigrate parents of children diagnosed with it.

However, I would think that if a friend of yours breaks the news that they have a child just diagnosed with the condition, upbraiding that friend just may not be the best way to show support and concern. Maybe that's just me. Starting an anti-ADHD diatribe and demanding second and third opinions may not be the best response to a friend who may already be upset and worried. I'm just saying. I can also assure you that it makes your friend very skittish to share the news with other people, and thus cut them off from needed support- especially when this is the reaction you get from not just one, but several "close" friends.

They may even turn to their blog and test the waters of their online friends, whom they consider more understanding of disability and conditions including ADHD.

Personally, I think the absolute best response I have gotten thus far was from Stimey, who (poor thing) got it full and immediate on the phone the day we got the verdict: "So... how do you feel about that?"

I am so fortunate to have you guys, folks like Farmwifetwo, Maddy, Niksmom, Club166, and Stimey who understand that a diagnosis is really about getting appropriate accommodations and services. Andy hasn't changed; we have a new perspective to consider what is best for him and how to help him learn important skills to get through life. Just like Joey didn't change when he was diagnosed as autistic. Andy is still going to be his energetic himself (I have no intention of medicating him unless it is proven absolutely necessary, just as we do not medicate Joey).

Yes, reminders of how to get through the process of getting Andy what he needs are appreciated; but lectures on ADHD as a "pseudo-condition" are really just annoying right now. I need real information. Lots of information. Accurate information. And I need it by the 15th, when our Child Study is scheduled.

Wordless Wednesday: Happy Fourth!

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.

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.

Proof that Signing Time rocks.

Seriously. Signing Time! rocks.

Thank you, Rachel, Leah, and Alex.