Finale

Last night, I was practicing violin with my 8 year old (neurotypical) son. On the final chord, Sharkboy, who was playing with his sister in the other room, let out a scream (long and whistling-pete-like) and IT WAS ACTUALLY PERFECTLY IN TUNE! It was glorious (and he was fine - it's usually something like he dropped a lego).

Spring Break

Spring Break - 9 days of no school, no schedule. Attempted to have Sharkboy spend a few days with his Grandma and Grandpa in a nearby town. No go. I gave him a 24 hour heads-up and he was excited. Grandma said that within two minutes of me driving away, he started crying and just completely fell apart. They made the call, grabbed his suitcase, and chased me down the freeway.

I'm a bit disappointed because in the past he has stayed with our relatives for a few days by himself. I feel like we're going backwards. Grandma said, "He was capable of doing it a year ago. He may be capable of doing it next year. Today, he just can't do it."

I thought Sharkboy might regret his decision. He had really been looking forward to hanging out with his cousin. Funny thing - he never said one word about it. His (neurotypical) cousin cried when she found out he wasn't staying.

From my anonymous blog, I can tell you: I was looking forward to the break. It would have been a good 72 hours with no sharkboy meltdowns, miscommunications, struggles, blow-ups. This may sound dramatic, but living with Sharkboy has given me a touch of PTSD. It's like living in tornado country and I was really looking forward to a few days in a milder climate.

Support Group

This last weekend, we met some other Aspergers families at a city park. I looked forward to being around other people similar to us. It was really nice talking to some of the parents and discovering that they had experienced some of the same things I had.

For instance, I still have resentment (I know, I have to get over it) towards the speech therapists that my son saw. At the time, he was four and had no diagnosis (didn't know he needed one). Speech therapy with him was fruitless, I felt. But I doubted myself too. Eventually, we quit. My son had doors in his mind that were clearly locked and the therapist did not have the right keys. Very frusterating. I discovered that two of the other parents had the same experience.

How affirming - to know that you're not crazy and difficult. We're definitely going back to this group. Besides, I need to pick their brains on their experiences with diet change/DAN doctors/naturopathic medicine.

"He looks fine to me"

I have one regret, one thing I should have done differently. Everytime someone said, "He looks fine to me," I should have gotten myself a large Dairy Queen Blizzard. AND when a family member said, "Well, I never have a problem with him," I should have gotten the Blizzard with the onion rings.

Getting Ready for School

Shark Boy is often difficult in the morning. Transitions are not in easy, in general. If he is smart enough to lay in bed for awhile, I try to go in and rub his back. Of course, the other two are asking me what's for breakfast and I'm barking orders at them. They all have to be dressed before breakfast. On good days, he will get dressed all by himself and come downstairs without a word. Sometimes, we have to physically dress him. It's strange - it's not like he's physically incapable of dressing himself. He's 7! It's just that his brain and body become uncoordinated and completely unfocused.

This morning, he was okay until I changed the breakfast plan. I asked him to eat the scrambled eggs and sausage breakfast before having any cereal. Once, he'd eaten a lot of it and it was getting later, I told him I had changed my mind and he wouldn't be having any KIX. He screamed and climbed under the kitchen table. I just let him howl because I had to get ready to take the kids to school. Fortunately, Daddy came to redirect him upstairs. Once up there though, he couldn't focus to do any of his jobs (put the books on the bookshelf, change your shirt, make your bed). At times like this, he requires one-on-one assistance. That would be great if I didn't have to take care of myself and two other children. I got myself ready while supervising the other two and then I turned my attention to him.

He was so floppy that Daddy had to hold him standing so I could change his shirt and carry him in to get his teeth brushed. Daddy held him and I brushed. Good thing he could spit of his own free will. I started acting a little goofy with the tooth-brushing, trying to get a smile. It worked.

I guided him down the stairs and out the door to school. When he's like this, every little thing distracts him. I held his hands so that he wouldn't reach out for things that we passed on the way. He's complaint.

I was happy to bring him to school. He holds it together at school. He doesn't fall down on the floor, he doesn't scream, he doesn't flop around. He doesn't want people to know he's different (pretty normal). I'm thankful that he's happy there, he's learning, they treat him well. I'm happy that he has a place where he can take a break from the rollercoaster.

Why Sharkboy?

Where did the name come from? The movie about "Sharkboy and Lavagirl." It just caught on. I was talking to him about how there are different sides to him. "Sharkboy" is when he's intense, either excited or filled with rage. He talks like a monster truck revving its engine. His movements are quick and aggressive, intimidating. "Floppy Boy" is when he's..well, floppy. The fancy word is hypotonia. It's like all of the intertia went out of his body. Movement is limited to dragging himself across the floor. Standing up is impossible. His words become slurred like a stroke victim.

Whatever is going on inside of his brain, no one (except God) knows. Clearly, there is constant changing. I picture a water faucet. It's either dripping or gushing. The moments when he's balanced are the best. That's when he becomes a typical boy.

Siblings

He has an older brother and a younger sister, both neurotypical, which is just right. God obviously knew what we needed. Brother is his guide, his rock, his course-corrector. Sister is the laughter, the joy that he so badly needs. She woos him with her preschooler gibberish, rolling around, cuddling, reciprocating his leaning quests for proprioceptive input.

Once in a while, I am sad for them. I sense the strain that it places on them. Our family life often revolves around Him. I know that's not how it should be, but that's how it has to be. If he had cancer or another illness, we would do the same.

There will be long-term benefits for them. Empathy, understanding, gentleness, acceptance, endurance.

I am proud of how they treat him. I'm thankful for the influence that they are exerting. They can encourage him and motivate him in ways that I cannot. God knew just what he needed.