16 Months Later

I realize now that I was going to write an entry saying goodbye to this blog thread.

Becuase the bottom line is that Simon's pretty much fine. He's eccentric, but he's gifted and funny and the problems have largely ironed themselves out. He's got Lily as his friend, a true friend, but as for hooking up with kids at the playground, he's got a ways to go.

But a funny story happened that I feel like plopping in here.

In RDI you're always supposed to put emotional things and excitement into experiences. So whenever we have errands in front of us, I always make it like it's going to be the thrill of a lifetime. So the other day I told Simon about some exciting errands and I believed I described it as an adventure.

And he looks down at his cereal, extremely seriously, and says in the funniest, most pissed off voice, "I'm sick of you telling me it's going to be fun. It's not going to be fun, it's going to be boring. Going to the grocery store is boring! It's not fun!"

I bust out laughing. "You're right, Simon. You got me. It's true, errands are boring." He respected my honesty, and was a good sport about runninig the boring errands anyway.

K

Post-Bad Patch

So it's typical of kids with these kinds of issues, and it's happened before, but Simon just worked through a bad patch. He slid into it and for a few days was really overloaded and out of it. He was unfocused and hard to talk to. It seemed to lift after four or five days, but then the next week wasn't all that great either.

Now, he's back. I really feel like he's actually back. He's pooping on the toilet, can talk about the calendar and the weather. He's learning and talking about new things, etc.

What's interesting about having a child with these issues, and why I'm writing a blog about/for parents of kids who are "on the spectrum" (a term I hate) is that my ideas about the right thing to do for my child really vary from month to month.

When the bad patch started to happen, I was pretty determined to work him through it, try to snap him out of it, like an athlete working through an injury. Not only did it not work, and not only was it frustrating for me and stressful for Simon, it made me realize that there's different approaches at different times. I finally got to the point where I would "shadow" him, and always be in the same room. He would do his thing, and I would bring a book with me, but at least we were in the same room. There would be moments here and there where he would say something and I could chime in, and we could have a little connection. We could still have some fun and laugh and have some nice times. I could still make him feel loved.

The other thing I learned is that I need to stop blaming myself. I've just been aching about the fact that I put Simon in daycare, part time, for over a year. I've been blaming myself and work for Simon being isolated and withdrawing. The day care was a bad move, and it didn't help things, and I was in denial that it wasn't working. But if this issue was as simple as a childcare choice, it would be easy to correct.

Simon now does (including therapy school) about 7 hours of therapy a week. I work with him at home and give him a lot of focused attention. But he'll still have bad patches. He has neurological issues. Not parenting issues or bonding issues, but hard-wired neurological issues. And some of this we just have to keep our fingers crossed on, do all the therapies, do the right things at home, and then just hope for the best. If this was my fault, I could have fixed it by now. Simon's been out of day care, of any kind, for over a year.

On a different note, we're doing the RDI drum work. I just think RDI is so on the right track. I try to get Simon to drum to my beat, and it's a lot of work, but he's starting to get it. We do 1-2-3 HIT, 1-2-3 HIT. He can sort of do it, but only if there's a huge motivator, like we'll use the siphon on the fishtank if he does the "drum exercise". So he'll put up with it for about 3 minutes. But it does get him to look at me and follow my cues.

Spring is coming in three days. I've been training him on the seasons since fall and he's getting pretty good. I think he gets some of the underlying ideas and can recite the longest monolog on the subject. If you didn't know he's memorized it, you'd think he's a genius. He's also spending a lot of his free time trying to teach himself how to read. He's learned to write numbers without any help and is interested in clocks and telling time. Today Amy taught him about clockwise and counter clockwise and he was pretty into that.

Printers are out, whirlpools that form when he's draining the sink are in. He pretended the kitchen was flooding, and he was putting a pretend drain on the kitchen floor. I pretended I was swimming in the water and getting sucked down the drain.

He liked that.
It's nice to have him back.

K

When Your X is Fragile

So today was supposed to be a normal day.

Just Simon's yearly checkup. Simon almost never gets really sick, so it's been a whole year. He's still in the 95% for height, 90% for weight. He did good in the appointment.

The the doctor and I talked about Dan and I having a baby, and she brought up the Fragile X Chromosome testing again. We blew it off when the other doctor mentioned it, figuring we are fine because we'll be swapping out biological fathers, and Simon seems like a chip off his Dad's block, for good and for bad.

But the doctor said Fragile X would be carried by me. And the test isn't a shot in the dark like the Down's test. If they test your baby for it, your baby probably has it. Although the baby probably wouldn't be more severe than Simon.

When I talked to Dan about it, almost in tears, he said, "we could have another Simon. That would be OK."

He's a great guy.

So anyway, they are going to test Simon. If he's negative for fragile X, it's case closed. But if not.... I think Dan and I will still look to conceive. In.... 70 some days. One more thing to be stressed out about. There are some folk kits you can do to try to tip the scales and make a girl, which would be one way to avoid the fragile X problem. Girls don't really get fragile X, being XX they seem to (metaphorically) borrow what's missing from the fragile X from their extra X.

But it hurt the day. I think Simon's IQ is too high for Fragile X, which is at highest an average IQ. That's what the neuro developmental ped said. Our regular doc said he didn't have the look. But with Fragile X, there are lots of exceptions, so everyone wants to make sure. We'll just have to see what the test shows.

Simon and I played all evening, until late at night. He can blow his train whistle now. And we played with his blocks with letters, having me spell words, like "sink" and "poo" and" light", "gramma" and "drain". He realized that every word could be spelled and he was very excited. It was a Helen Keller moment.

Simon did great at his birthday party, there were probably 16 people there, but it was very peaceful and sweet. Simon was well prepped, we had drawn a schedule a few days before. And everyone, Simon included, loved how structured the party was. We had a free play, then a singing lady, (who Simon knows and loves from school), then cake, then the pinata, then pin the tail on the donkey, then everyone went home.

Simon is 4. He's an amazing kid. He was such a tough guy getting his shots today. He is not afraid. It's me who's afraid.

K

Not Today

Simon did so good this month. But then today I got so frustrated. I try so hard to get Simon exposed to other children, to try to get him to play, hoping for those glimmers where he interacts and takes an interest in his peers.

On Wednesdays, after school, we duck into the gym and the two other boys run around. Today I had to admit defeat that the idea of ducking into the gym for 5 minutes just won't work. He can't just "duck into" a place he likes and then leave after a couple minutes, then quickly throw on his coat and go to the car.

Today there was the frustration and dragging and me yelling at Simon in frustration once we got into the car, then Simon crying, then him getting the giggles on the way home while I remained frustrated.

It's just this moment, this mom I don't know well with the child in the gym. I try not to talk about Simon's problems to every Tom, Dick and Harry. I try to pass Simon off as normal for as long as I can. But there alway comes a time where I have to explain that we can't do what they can do. From now on, they have to go ahead without me. I'll meet them outside, meet them at the next place, see them Friday, etc., but we can't go along with the group. We can't follow their pace.

Not today.

Bowling, Disneyland and Sigmund Freud

So a lot of new stuff since I last wrote. I wanted to write earlier about going to Disney World. We had a great time, Simon did great.

I definately do a lot of challenging things with Simon, and he's really good about going out and experiencing new things. When I was a single mom, I would get restless and Simon and I would go out, sometimes at 8 at night. Go to a coffee shop or bookstore. Just to get some air. I remember once I asked Simon what he wanted to do. He didn't talk much back then, he was maybe 3, but he said "ride in the car". It was maybe 10 at night, but we just hopped in the car and went up and down Lake Shore Drive.

So when we're all together now, the three of us as a family, Simon is generally good with everything. We're all so happy to be together, and Dan holds one hand, I hold the other and Simon just walks on air. This holiday break Dan's had from school has been great for Simon. We're really been able to work on Simon for many hours a day. I'll make dinner and Dan will play with him, and Dan will do the dishes and I'll play with Simon. Really not a lot of downtime. He gets breaks, and we give him some time to pretend he's a robot in a printer, but not for too much more than 20 minutes at a time, less than a handful of times a day. And more often than not, he pops out of his room after a few minutes, tired of the printer.

But we started slow at Disney World, and two days would have been plenty. We also committed by the second day that we wouldn't feel like we had to get the most out of our money by making it too long a day. If we only stayed a few hours, so be it. But again, Simon was really good. He got the idea that you have to wait in line to go on a ride.

At first he completely melted down and I think Dan had a moment where he thought the trip would be a wash, but I knew Simon just needed time.

The trip really make us schedule and calendar addicts. We flew into Atlanta to see Dan's folks for a couple days, then drove to Disney World. We kept telling Simon that we were flying on an airplane and going to Disney World. So I didn't want him to have a heart attack when we got off the plane and just went to a big house. So I made these elaborate calendars counting down to the trip, but pictures of his friends for playdates and school and the like, and then an airplane and pictures of his new gramma and grandpa. Then a car. Then the castle of the magic kingdom. Whenever Simon had a minute, he'd say, "let's look at our calendar".

It's a great communication tool. He pointed to a blank square of the calendar after the trip and in a panic cried "Put a picture there!"

"We go home. On that day we go home. Go to our house with the remote control fans. We see Gramma. You go to school. Everything goes back to normal."

He calmed down immediately.

Now we have monthly calendars and update it all the time.

Today we went bowling. At moments, Simon was more interested in the machine that brings the bowling balls back to you than the game itself. He's also still totally lost on the concept that it's a game. Like he's good at Candy Land. He takes his turn, he moves to the right square, but he doesn't get that if you get to the top first, you win.

In the end, I feel like Simon had a great month. I feel like he's living a good life. Having a father and a real family is doing us all a world of good. I still believe that beyond therapies, there is a psychological element. Does he feel safe? How do you balance sensory issues with feeling like you're in a safe place, with people who love and trust you, for the purpose of having fun. I think if we stay on this joyus track, this loving track, we'll come out alright. If the great fear is that he won't be able to love and connect to people, then love, somehow, some way, has got to be a part of the answer.

k

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.