Dreams in a Box

So yesterday was good, we met with Simon's new school, and although I'm still sad he didn't make the cut for the normal preschool, we reviewed his speech testing scores and it was quite a pick-me-up to have him score at 2.5 to 3 year old level. Simon will be 4 in two months. A year ago he was testing between 9-20 months.

Maybe I've come a long way too. Scores that reflected that type of delay a year ago made me flip out. I would argue about the test, I would fight all this, I was fighting everything. I thought they were wrong, but I knew Simon wasn't quite right. So I was really in a bind.

So he's testing pretty good, but still does do poorly in a classroom setting, and the therapy preschool will help with that. BB is a good school, and they'll help me take a look at what's going on at JC (his regular school) by having a pro go in and observe, and we'll figure out how to get more out of it. BB also provides aids for the classroom. He'll also do speech therapy at BB. I'm the luckiest mom around to be in a big city (Chicago) and have a one-stop-shop for everything my son needs a few blocks from my house.

So today is a good day. Today I feel like my son is in good shape. He woke up yesterday, talking and making sense, hitting language fast balls out of the park . It reminds me where we were a year ago, with 100% of his language being scripted. I've become a convert to early intervention, it does seem like the earlier you get your kid intensive help, the more it pays off. My friend's gir, Is, seemed to be heading towards an Autism diagnosis, (a downgrade from PDD spectrum). Her mom had been getting her tons of services since the age of 3. But Is is really doing well in kindergarten, her head is lifted and she's looking around, she's jumping on me in the pool, squealing, answering questions.

It seems like for these kids, the main issue is that the world inside their heads is good, and the world outside their head is such chaos that they can't wait to get back inside their heads again. Once that "lift" happens, and they like the world, then the door opens. The can learn, things are enjoyable. I've seen a lot of kids make a lot of improvement. And I feel hope for the other kids. I was watching a kid through the video feel that looked pretty classicly autistic. He came out for a bathroom break, looked at the floorboard and said "broken".

I thought to myself. That kids can say at least one word. If he can say one word, he can say more. With enough words, he can talk.

A lot has happened in a year. I am grateful for all the help I have received and the good things that have happened in addition. I'm continually gratefull Simon's disabilities are as mild as they are. But I've also made some type of transition. I am drinking green tea, I have a cold, and thinking about Asha and how she taught me the Japanese Tea ceremony. Back then, I sat on the floor and tried to let go of the self. The Zen masters should try parenting in addition to meditation. I'm glad my goal was to let go of the ego, because in helping Simon I have let go of many many things I wanted to do. I had to let go of self-reliance, ambition, my goals. I keep my dreams in a box.

I measure my life not in just what I have accomplished, but by what I have sacrificed. We measure our success by our achievements, but the heroes among us are those who have sacrificed in order to help others, in order to do right. In that way I have done a good job. When we did the medical diagnostic last November, I pulled Simon out of daycare the next day and we never went back. I made a financial plan with my parents, I let go of work ambitions and outside projects and took care of my son in a way I never had before. I was a mother in a way I had never been before.

But still, at the end of the day, I wished I had done it sooner. I wish I wouldn't have rationalized all the signs. I wish I would have asked doctors rather than surf the Internet for answers. I wish I would have played with Simon more when he was a year old, and not just let him sit with his electonic toys.

Maybe all parents of quirky and spectrum kids wish these things.

Kathryn

Labels and Other Kids

The book "Quirky Kids" was a great book for me. For the first time, I was emotionally comfortable with a label for my kid. Asperger's. Technically, based on the DSMII (whatever it's called), he doesn't quite qualify.

But what the book illustrates is that kids in this category are famous for not fitting the mold of the category. Quirky kids are all over the board, Simon is a mismash of sensory issues, communication problems, etc. What's freaky about Asperger's is that you think you have the most excentric kid on the planet, obsessed with fans, memorizing books, good at computers, lousy eater. And then you meet another mom, and their kid is like my kid's doppelganger. My friend AK said her sons is obsessed with lightbulbs being screwed in. She said O (I'm not going to name names in this blog) will start a normal sentence and conveniently switch over to the topic of screwing in lightbulbs by the end of the sentence.

My son pretends he's a printer. A lazerjet printer or some such, and he'll find a cube of some kind and go back and forth and slowly release a piece of paper. If he can get the paper to come out of some kind of slot, that's ideal. It's fairly elaborate, and really looks like like a lazer printer with the lid off. But good lord, if you do something for hours on end, you do get quite skillful.

Simon can tell by looking at our ceiling fans if it's on high, medium or low.

Which reminds me of another friend of a quirky kid, same age as Simon, and his sthick is doors. So we're at some picnic and Simon is doing a safety inspection of the grounds and her son is working the doors. They were big, heavy, industrial doors, and he was only 2.5 at the time and he would heist open the huge door and dart in before the door slammed shut, and then repeat from the other side. And then repeat the cycle.

I said, "Wow. That's a heavy door, are you worried he'll get hurt?"
"Well, no" she said, "I mean, he is really, really good at doors."

K

I See It Too

I got that name from a moment last winter. We were in the courtyard of a building and it was evening and the snow was falling and it made the area amazingly silent. Simon froze in his tracks when he saw a fan through the window in one of the lofts. The loft looked warm and the fan spun slowly. The snow was slowly falling. It was beautiful, hypnotizing. We sat in the snow and watched the fan go around and around.

"I see it too," I told him.

Card Carrying Member

I'm not going to try to start at the beginning. I wouldn't be quite sure where the beginning starts. Instead, I'll start by saying that my son flunked out of preschool this week. I'm exaggerating. However, we did an three part evalutation for the typical development preschool and he didn't make the cut. So instead he will go two days a week to their equivalent of special ed.

I really thought we had it this time.

I always think we have it.

I'm starting this blog because I felt like Simon and I were in this special needs world as tourists, we were just passing through. Let the blogs be written by the mother's of children with real problems, I thought.

But my kid didn't make the cut for preschool today and it's one clear reality- I'm in the club. I dropped of binder full of documents for his new school, reporst and evaluations. Including, but not limited to: an IEP, speech pathologists (4), occupational therapists (2), special ed staff, his medical diagnostic, neurodevelopmental pediatrician, developmental therapist, all the way back to the early intervention screening where he first got dinged.

My child has some issues. And they're not going away.

So I will try to write this when I have a minute. And when you live this life, you only have a minute here and there. I do not know anything, and I will aim not to give advice. But I've meet tons of parent's in waiting rooms, and I've been blessed with aquaintences that became friends due in part by the bond we shared as parents who have children on the autistic spectrum.

For outsiders (and this is not really written for outsiders) I will try to explain it this way. I think for other types of learning disabilities, the parents to some degree have the diagnosis handed to them. Down Syndrome is a chromosonal disease. With love and hard work, the child can live to their fullest potential. But Autism is much less clear. For parents of children on the autistic spectrum we have the blessing and curse of hope. Some kids have these issues and they go away completely. Some children will never live independently, some kids end up just fine. Some kids make massive improvement, some kids stay the same, and some quirky kids become adults that win the Nobel prize. The only thing we can do it work like dogs, as early in our child's life, and hope that tips the scales.

And work we do. And spend money we do. And hope like hell we do.

Always,
Kathryn

First Post

Never let what's wrong with your child
make you forget about what's right with your child.