La-Z-Ed-U-Ther-Ap-Y

I admit it. I've been a bad mother lately, and I'm having more mommy guilt than usual over the fact that Simon and I haven't managed to finish a homework packet in 2 weeks. I've been told that I'm allowed to "adapt" them, to omit what Simon can't yet do and simplify where needed, but I'm pretty sure we should be handing in something.

Yet, between Simon's stepped-up therapy and my stepped-up work schedule, it has been just a little too much for us both. Simon is pretty tired after school, and a couple evenings a week he has extra therapy sessions outside the home. On nights he is off, we work on left-handed skills by wearing his new cast. After just a little while he's frustrated and "done" with working altogether. I know I should cheerfully push through this, but I've been lacking my usual stamina (since I'm kinda "done," too), and I can't decide if it makes me a worse parent to push, or to pull back.

Either way I am sure I'm doing something wrong.

To compensate, I'm trying to combine things. Tonight was an excellent example. First, we did our casting session. Since Simon is working on identifying money in school we set out some coins and, after identifying the coin he used lefty to put it into the piggy bank (pincer grasps, supination and math!).

For our second session we worked on language and social skills. I brought out a pint of Ben and Jerry's and we practiced asking nicely to take turns with the spoon....hey, wait, that counts as OT too! Lazy mother... or genius!

Okay, fine. Tomorrow we will finish our homework. For tonight, I need more froyo because Simon ate most of it. Please pass the spoon.

Echo Bridge

Despite a thorough scrubbing, my stairs are still covered with sticky glitter. Earlier this weekend, a small boy tried to roll a snow globe down them. I don't think that it worked out quite the way he thought it would... and so, Simon learned the hard way that glass doesn't bounce.

The crash was pretty spectacular, and I think he knew right away he'd done something wrong. I immediately swooped in to save him from any shards, and after I'd checked him over (he was fine), I sat him down on a chair while I went to clean up the mess.

A few moments later (and a lot sparklier), I retrieved Simon from where I'd planted him. He'd stayed put in the chair and was crying pretty hard. I hugged him in my lap and told him he was okay. We took a few deep breaths together, and as soon as he'd recovered himself he began to tearfully recite a bit from one of his favorite Winnie the Pooh stories; falling back into his "normal" echolalic behavior.

As I held him, I realized that he was reciting from the episode about Rabbit's vegetable garden -- Tigger had bounced all over it and ruined Rabbit's rutabagas. Simon was repeating Tigger's apology to Rabbit, over and over again.

"I'm really sorry, Rabbit.... It's okay Tigger, it was an accident.... Thank you, Rabbit..."

Then, gradually, it turned into... "Simon is sorry.... It's okay Simon, it was an accident..... Thank you, Rabbit."

I realized that Simon was trying to apologize to me. He was connecting Tigger's mistake to his own, and Rabbit's reaction to mine. He was using the "social story" the episode provided to find the right words to tell me how he felt. Suddenly, the echolalia wasn't just repetition, it was an actual echo of his own meaning, his real intention.

I've imagined before that Simon's communication disability is like a vast body of water, making him into an island I can't quite reach. Although I'm still looking for a ship to navigate across it, in the meantime, perhaps I've found a bridge.

Included

Simon's classmates made him this poster when he was in the hospital this October.

I just got back from spending the morning at Simon's school. We had a scheduled IEP meeting this morning to discuss assessment results (one of many meetings this year, since we are in an "evaluation year"). We met with most of Simon's team -- The IEP coordinator, the inclusion teacher, the special education teacher, the speech language therapist, the occupational therapist, the physical therapist, the guidance counselor, and the school nurse. Missing, but planning to be at our next meeting in 2 weeks were the physical education teacher, the music therapist, the adaptive technology specialist, and the school psychologist. 12 people (not including Brian and I). It was a crowded room, and I was pretty worried that I wouldn't have enough of the cookies I'd baked to go around.

Today's concerns about pastry portions are a far cry from my feelings a few years ago, at our very first IEP meeting to discuss assessments and make recommendations. Then, I only knew one person in the room and I was very intimidated -- fearful that I would say something wrong that would negatively impact Simon's plan, that I wouldn't understand what was going on and would be cut out of the decision making, or that I would sign off on something that proved to be a bad decision and I would be stuck with the consequences.

Most of all, I felt alone.

Being the parent of a special needs kid can be a very isolating experience. Despite their best efforts, most of the people you are close to can't relate to what you are going through, and many of the specialists you turn to for help have a myopic view of your situation and your child. You often feel that no one sees the whole picture; who you are, who your child is, and you struggle to find the words and ways to explain something that seems complex and overwhelming even from the inside. As your child grows, your worries about isolation grow, too. Your child's safety and quality of life come into question; "How will they be okay when you aren't there? Will they be able to make friends? Will other adults see how amazing a person they are? Will they be able to get the care they need when they can't speak for themselves?"

I still worry about Simon. But, over the past three years, when it comes to his education, some important things have changed. At today's meeting, I was surrounded by a team of specialists that all know me, and know Simon even better. They've seen him on his best days, and his worst. They know his strengths and they know where he needs help. They were open to each other's ideas and they were receptive to mine.

I've also gained confidence in my role as advocate and Simon expert. I'm always asking questions, troubleshooting, and putting forward ideas, and I have found that -- far from being excluded -- this is welcome. Even when I disagree with someone, the team encourages me to be involved and gives Brian and I a lot of credit for being a key part of Simon's success. We've been told that they wish that more parents would do the same.

Realizing how far I've personally come was a great gift today. However, the best part of today was listening to Simon's team talk about him. They said they found him amazing, that they were proud of him, that they were concerned about him, and that they had hopes for him. More than once they called him "our Simon." They told funny stories about him (like when he pulled the fire alarm), and shared sweet moments (like when he read them his first book and made his preschool teacher cry).

After the meeting I hung around to watch Simon on the playground and at yoga time. He was surrounded by other kindergarteners that don't just tolerate him, nor do they just accept him in the pack. The other kids were constantly looking out for him -- helping him wash his hands after using the bathroom, helping him play and seek out interaction, helping him follow the rules and pay attention. Though I believe that kids are intrinsically good, I know that these children have been taught, through constant modeling and instruction from the adults, how to interact with Simon and the other special needs kids in the school. Simon's inclusion teacher and aid are particularly good at this, and the result is a community in which everyone helps one another. Sometimes, like at yoga time today, older kids with special needs help younger ones. Everyone is needed, important, included.

And I came to realize that Simon isn't just MY child. He belongs to them, too. His classmates, his teachers, his therapists. He belongs to our friends and family that have contributed to the seizure dog fund. To the people that cheer for his accomplishments when I crow about them on facebook. To you, dear reader. Simon belongs to everyone that cares about him and helps to keep him safe.

I've never been so happy to share.

So the mermaid says to the frog...

"Do you hop?" And the frog, being agreeable, demonstrates. "hop, hop, hop!"
Good job!" says the mermaid. "Let's do it again!" And the frog, ever accommodating, complies.

For about the last six months, Simon has been using his toys to reenact scenes from favorite TV shows. This was pretty exciting in and of itself -- he was talking, a LOT (I'll take language in any form!), thoroughly entertaining himself, and lately he's added dramatic vocal inflection. The most exciting part, however, was that it  seemed like he was practicing -- getting ready to try playful interaction; to create a 2-sided dialogue of his own.

Over the weekend, I noticed that Simon was playing with toys in a slightly different way. He was talking ABOUT them. Not reciting, not repeating. He was also more specific about what he wanted to play with. When I gave him his pirate captain, he told me he wanted the pirate's friends, too.

Wow, I thought -- that's different. Simon is becoming aware of friendship -- and he likes it! How incredibly amazing, wonderful, miraculous...!!!  I found a few more crew members and Simon sang some pirate songs and I looked on feeling more optimistic than ever. I've been avidly eavesdropping on his playtime utterances ever since, looking for more glimmers of spontaneous social awareness.

My rapt attention was rewarded tonight -- frogs and mermaids have never been more eloquent. There were just a few lines, but they were all Simon's own.

Questioning Angels

I think I heard the angles sing today... Actually, what I heard was better. Simon asked me a question!

I put on my jacket to go to the store, and (like it was no big deal at all), Simon looked at me, tilted his head slightly to the side, and asked; "Where are you going?"

Practically struck dumb with surprise, it took me a minute to answer (while blinking rapidly and thinking I should pinch myself, my dreams have been pretty vivid lately).

I replied, slowly (as though I were the one speaking in a foreign language); "To the store. Do you want to come?"

Simon gave me an apraising look before answering with a simple, "No."

I desperately wanted to keep it going, so I turned to his favorite subject -- food. "Do you want me to bring you some lunch?"

A smile. "Okay. Pizza!"

I imagine this is a conversation Mom's have with their preschoolers every single day. And, if you didn't know us, this exchange would likely seem mundane (at best). Question...answer... basic communication... a couple sentences. Hardly worth trumpeting.

But -- !!!!

Questions! Answers! Reciprocal communication! Complete Sentences!!!!!!!!!!!!

Why did I never learn to play the trumpet? Surely a long, loud, triumphant peel of resonant brass sound would relieve this pressure -- I'm so full of hope, I could burst.