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.

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.

Wordless Wednesday: Out of This World

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.

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.