She's Back

Haven't written for awhile. I like to write, have been journaling since I got hormones, but sometimes I take breaks - when living the life seems like enough work, let alone reviewing it.

But life has settled down. After our summer of camping, leading VBS, birthdays, my missions trip to Costa Rica, my husband's missions trip to Africa, and a family vacation to eastern Oregon, school started.

So Sharkboy is in 2nd grade now and doing fantastic. A little more maturity and a daily dose of Prozac have brought us miles from where we were 4 years ago. We still struggle on a daily basis, but he seems more stable and happier. I no longer want to end it all. That's progress, right?

Just got back from a trip to Haiti (Sharkboy actually stayed with friends!) and I've got my head focused on Christmas now. Christmas is a good season for Aspies with lots of excitement and stimulation. Sharkboy didn't just write a Christmas list for Santa - he drew a chart with illustrations and all. Classic.

I can swim with a shark

Took Sharkboy and his brother to see the movie "Oceans" in the theater. Towards the end, they showed footage of a man swimming with a shark. The narrator was saying how we are discovering that sometimes the things we think are impossible are not. He said that sometimes we find a smile behind the most gruesome face. And it did inspire awe, watching a human traveling right alongside that awesome, frightening creature.

I cried, silently. My boys couldn't tell. But I knew God was giving me a visual of what is happening with me and my son. I am swimming alongside of him and I am not afraid. We are together and everyone is alright.

You see, it is but for the grace of God that my son is not destructive or violent. Autism is a disease of extremes and my son is sometimes passive, but more often volatile. Even when he gets excited at times, it is a jagged, tense excitement. He is definitely the shark.

I think back when he was little, those haunting years when a mother knows something is terribly wrong but assumes it is her. All those episodes that I expected him to be something he could not. Looking back, I expected him to be a dolphin. I got angry at him. I got frustrated. Of course, a shark can never be a dolphin.

Isn't is ridiculous that my own pediatrician said she was reluctant to mention the possibility of autism? She didn't want to freak me out or mislead me. How could she not see that I needed the truth?

Once it sunk into my mind and heart that he was a shark, not a dolphin, then I could learn. I have learned how to swim with sharks - when to pull back, when to come close, when to shut up. I have found some peace in facing the unpredictable. Best of all, I have learned that I can swim without fear.

He is Visual

I am finally catching on to one truth about Shark Boy. He is visual. I tell him often that I love him, I show him all the time that I love him, and YET he believes that I love him when I look happy. He tells me that when I look like I am mad, I hate him. Actually, when he is stressed out, any look of slight frustration tells him that I hate him. It is freakishly black and white for him.

Often when I'm tired and acting like it (Hey, I'm not a robot), he asks me, "[Do] you hate me, Momma?" "No, honey. I always love you. I never hate you."

Showing some hope for progress, he'll sometimes tell me, "Oh yeah, I remember. I think you're tired. [Are] you just tired, Momma?" "Yes, honey, I'm just tired."

Needless to say, those acting classes in college are paying off. I'm getting really good at my (fake) happy look.

Birthday Party Success

Good day...Sharkboy attended a classmate's birthday party. Best part was that he did it without me. I hung around for a minute to make sure all was well. He was wanting to cling to me a little and I knew I had to get out of there if he was going to be successful. It helped my peace of mind that the birthday Mom works in special ed at their school.

So I got out of there and it worked!!! Such an ordinary thing for neurotypical kids, but not for Sharkboy. This was a day to remember. (:

Feels like a Bad Dream

Monday evening was bad.
Tuesday evening was bad.
Wednesday evening was the worst.

Sharkboy is adjusting back to school after spring break.He holds himself together during school and then, about an hour after he comes home from school, it starts. Something goes wrong and he can't cope. He's whining, then he's crying, then he's stimming (repetitive behaviors). I'm trying to distract him, calm him down, reason with him. I try ignoring him. His brother and sister try to play with him and pull him out of it.

But now he's stuck. Whatever it was that went wrong has become larger than life. He's wailing, wailing, wailing. He can't stop himself. He's frantic, spitting out 7 year old profanity ("Stupid! Stupid! Stupid!") All communication becomes incoherent.

On Wednesday (the worst night), he even progresses to punching the walls, the nightstand. He is completely out of control and I grab his arms to restrain him. I'm screaming now, "What are you doing? Stop it! Just stop it!"

He throws himself on his bed, wailing like a wild dog. I rush out of the room, knowing I have lost control. I pace in the other room, trying to get a grip.

Daddy pulls up in the driveway. I call out to him, "Hurry, need you in the psych ward...ASAP!" He saves the day, but in my heart, nothing feels saved. Everything feels horrible and ruined.

This morning I helped out in Sharkboy's class. I smile at the kids, reviewing their spelling words. I love helping and I'm good with kids. But I keep remembering last night. How can I reconcile who we were last night with this sweet picture of the 1st grader and his doting Mommy helper? It feels like a bad dream.

Tonight is going well.
He's doing good...so far...we're doing good.
Tonight.

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.

My Son has Aspergers

I don't remember the precise moment that I discovered that my son has Aspergers. It was a gradual discovery. I was watching "America's Next Top Model" and there was a girl named Heather who had Aspergers. I hardly knew anything about the disorder but I had a sense of the familiar as I watched her awkward and yet beautiful movements. A friend let me borrow a book about Aspergers. It led me to the Tony Attwood everything-you-need-to-know-about Aspergers textbook. It was a heavy book and I consumed every word, determined to be as objective as I could.

Life with our son (4 years old) in our home was a constant battle of wild moods - endless crying, screaming, and more. There was a time, unfortunately, when I wondered if my son was the enemy. Soon after that, I decided that I must be the enemy. Finally, I was emerging on a new idea. He had something wrong with him - Aspergers Syndrome.

Having a name changed everything. You can't war against an unknown enemy. Now I could learn its strategies, its weaknesses and strengths, and it had a face. Understand me here - My enemy's face is NOT the face of my son. My enemy is a neurological disorder that doctors can't even agree on, have no definitive test for, and have no cure for. Even their attempts at treatment are shots in the dark.

My son is 7 years old now. He is currently healthy and happy most (not all) of the time. This blog is written by me, not him. He is uncomfortable with attention and would not want his picture on this site. As much as I would love to show him off, I am going to respect him and not show his face. I thought long and hard about writing this, not wanting to infringe on his privacy. This blog will be my story. Hopefully, he will have his own someday.