10.13.2008

Let Me Tell You About My Beautiful Boy

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Leelo at Camp Coastaldweller

Let me tell you how wonderful he is, how funny.

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He likes to pretend to fly on a broom, because that's what Kiki the Witch does.

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(I hope he doesn't try jumping off of anything higher than our couch.)

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He can sit through an entire preschooler pony birthday party doing activities, as long as one of us is with him to keep the verbal prompts coming.

Visual Icons in the Car

He has adjusted to our use of icons and a visual schedule throughout the house and in the car, though he was initially quite pissed off that I was using them because, while he knows he can "argue" with and disobey me, he can't argue with icons. They are simply The Law.

He has been asking to sleep with me at night. When I say no, he turns to his sister and says, "Sleep with Izzy?" who is more than happy to comply for the few minutes until he gets irritated and kicks her out of bed.

He was so thrilled that I found his old CD of classic kids' songs that he sat in front of the computer for twenty minutes, listening to the songs and clapping out their rhythm.

He has become a Crocs convert. He likes his Crocs so much that he wears them inside the house, willingly. He can put them back on in seconds, without his hands.

He can pick up anything with his feet, while strapped into his carseat. Anything. It's really amusing. Less so when the objects are french fries he has dropped, but his prehensile moves still rule.

He has been doing a really great job of running for the toilet when he needs to go, and holding his business overnight. I am allowing myself to suppose that he might outgrow his night-time pullups within a couple of years.

He occasionally tries to imitate the Dancey Dances on Yo Gabba Gabba.

He maintains his cool in his classroom, even though the majority of his classmates are screamers. I attribute this to his lengthy visual schedule and fantastic teacher/aides.

He asks for lots of kisses and gives lots of hugs. And lately he has decided that snuggling with me on the couch is part of his TV-watching routine. Love it.

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Let me tell you how exhausting he is, how worrisome.

His social worker came to visit on Wednesday, to see if we really did need respite hours and if the regional center would pay for camp. I think she was going to give us what we asked for anyhow, but after Leelo ambushed her twice, and hit her, hard, she signed all the papers very quickly. (She was unfazed and has likely seen worse, but I am still mortified.)

He ran up and hit a random lady in the grocery story on Saturday. She, also, seemed unfazed but I almost lost it. If my brother hadn't been there to whisk Leelo out of the store and into the car, I would have crumpled. Even so I was emotionally woozy for the rest of the day.

He seems to be phasing out of squeezing and pinching and scratching. My arms no longer look like I have scabies, track marks, or an abusive boyfriend.

He is still targeting his baby sister any chance he gets, and finds it amusing. She now screams any time he comes into the same room. Which he loves. I think this is the non-conversational autistic brother's version of bullying, of torturing his siblings, but it is not safe. The constant vigilance is very very wearing. We are spending far too much time in the car (with the girls' seats pushed as far forward from Leelo's as possible), as when I max out that is the only way I can watch them all safely.

He now thinks it's funny to climb the bannister and along the outside rails of our stairs/upstairs. He hasn't yet been fast enough to hang over the area where there's a twelve-foot drop. Again, constant vigilance.

He has decided that he likes to sleep *inside* his duvet cover, with his comforter. Since he doesn't quite get buttons, he just ripped off all the buttons and/or ripped open the button holes, for access.

He still can't tolerate a drop of liquid on his clothes. A few days ago, while I was driving him and Mali back from a drive-through dinner as we needed something to do while Iz was at soccer practice and I did not have the energy to risk taking the two littler ones on an excursion, he managed to strip himself completely -- jacket, shirt, pants, and underwear -- while strapped into a five-point harness carseat.

His bus drivers call him "Houdini." I have asked the school aides to make sure that his harness is on as tightly as possible. I don't know how many write-ups a kid can get before they kick him off the bus, but Leelo's already had three.

He seems to enjoy yesterday's tour of Camp Coastaldweller, the camp he'll be going to in November. Except that there's a pool in the middle of the camp. A very visible chainlink-fenced pool. Which Leelo really wanted to swim in, and kept asking about. I didn't see anyone else's kids headbutting their parents throughout the orientation, but the camp staff assured me that they've seen everything, can deal with anything.

He was approved for a 150-minute, two-part evaluation for meds and aggression by the behavioral psychologist at our local medical group. That will happen in mid-November. I wish we never even had to consider this. I am grateful to everyone who has sent me information and stories of their own experiences. I have to believe what a friend who went to the recent Morgan Center conference told me, which is that there were autistic adults there who testified that, until they started taking medication, they couldn't even begin to process the world around them. All they could do was lash out and react against it. Meds showed them the way.

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I am glad that Leelo continues to bring so much joy to our family. But there is a lot of terror, anxiety, and exhaustion as well. We can't keep going like this for much longer. At least we have some plans.

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19 comments:

  1. Awwww! Hon. I so totally get it. The love and the exhaustion. If transportation is on his IEP they can NOT kick him off the bus. I can't believe they write him up, what is that supposed to do? (Sorry, that irritated the heck out of me)
    Hoping for some answers. You know the new med we are trying on Little Man is changing our lives, for the better. I am kind of in shock over it, really. Best of luck, you know I care.

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  2. I'm really glad to see your incorporation of the visual schedule. I applaud this, since I'm guessing it felt like "ONE MORE THING" at the time, but one that however onerous really has the chance to make things better in the end.

    I'm sorry to hear about the psych evaluation, but, again, the strength you show us all as you move forward is so evident, I know you will find a way to cope with this too. You are not alone, just at the camp counselors said. Even as it sometimes feels that way.

    xo,

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  3. Yes, the strength you show us is amazing. I hope the psych eval (as hard as it may be to think about) will lead to some new answers. Hang in there. And no, you are not alone. Not by a long shot.

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  4. Claire4:02 PM

    Happy Birthday and thanks for your blog.

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  5. Melissa10:39 PM

    From one mom of autistic sons to another mom of an autistic son, I so totally can understand what you are feeling and going through.
    Love and kisses to you~

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  6. You're such a strong person, Squid. I love how you keep the optimism in every post.

    I'm glad you decided to think about meds. I fought it for a long time, but when I finally did give in, things got a lot better for us. Not perfect, obviously... But better for everyone concerned.

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  7. Our son has Cerebral Palsy. Some of the global effects of this shadow a number of other diagnosis out there in the world; one of which is ASD. We too have the ambushing of the younger sibling who either flintches, screams or just doesn't react when he does stuff...luckily that has decreased. The hypervigilance needed to watch him is amazingly exhausting. It's something that I don't believe others truly understand unless they're around ALL the time to see.

    Part of what you're expressing reminds me of us a year ago. We ended up spending 1 1/2 hours in our son's neurologist's office nearly sobbing about how we couldn't take it anymore. What he told us changed everything. He said, he has seen this tear families apart and the best thing we could ever give him was us, together as a positive, supportive family. He recommended Risperdal, which we were leary of prior to meeting with him, but he is on now.

    Our son isn't 'perfect' nor will he ever be, however, we no longer have the overwhelming dispair in our hearts when we are worn down from the days activities. He is calmer, nicer, has organized himself enough to be able to communicate which may have been part of the problem. (His speech continues to increase at an amazing rate since we started it. I believe it has helped his ability to figure out what he wants to say and increased the processing time to get it to his mouth and out).

    I'm not saying meds is the cure-all, but it can help. It could offer hope. It could offer change. Sorry for the long comment. Hang in there.

    ~Mia

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  8. 10 years ago I would have balked at the idea of giving a kid an atypical antipyschotic, but that was before a dedade of parenting autism. Risperdal has not been a miracle for us, but it has helped enormously and L seems much happier since he began to take it 3years ago. Best wishes for Leelo!

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  9. This thought popped into my head, reading this entry. He is still after Mali, but doesn't like water on his clothes. What about Mali having a small plastic spritzer bottle of water and wetting him if he goes for her? Would it stop him or infuriate him?

    Forgive me if that is an inane suggestion.

    Your family rocks.

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  10. What a dollface of a little guy! Yes, ups and downs. But the ups are so worth everything. Sending hugs for you and your family!

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  11. Yesterday's comment got ate.
    I'm glad he's got an assessment coming up, and there's help on the horizon.

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  12. Every child has differences and problems. Some kids' are just more visible than others'. You sound like a warm and patient mom. Sending you a huge hug for finding the ways to make things work for Leelo and looking for ways to improve upon them...

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  13. @robin. Heh heh. Leelo actually likes being sprayed with water, and likes spraying water from a bottle or a hose even better. If I gave Mali a squirt bottle he would probably knock her down and steal it!

    I am enjoying reading everyone's stories. You all have my thanks.

    I know meds could really help. I know. My good friend Ep keeps telling me that I would not have any qualms about giving Leelo insulin if he had diabetes, and that I should think of his brain's neurological imbalances to be similar. Nature has fucked up his chemistry, it is up to us to correct it.

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  14. ..and I can to be writing. "...neurological imbalances AS similar"

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  15. *whew* taking a breath with you! Leelo and my son have some of those awesome and worrysome qualities in common. I'm especially with you on the drop of water on clothing causes instant insanity.

    For the record- my son is on meds. It was heartwrenching to make that decision, but HE is a happier, less anxious kid. You can see it in his face.

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  16. Hi! It seems like us parents of special kids are all going through a crazy time right now. I know what you mean about not being able to go like this for much longer. I've told my other half that if this is how it is always, I will not live to be an old woman. Anyway, about the meds...you've got to do what is right for your child, and the good news is that if it's not working, you can stop. We actually just started using GABA, a natural supplement to calm the brain, and so far it seems to be helping a tiny bit. But I know that one day I also may have to resort to prescribed meds. I don't want to, but I will if I have to. Good luck with everything.

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  17. Anonymous3:51 PM

    Delurking to say that you are an amazing mom. A-MA-ZING.

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  18. You and Seymour are the most mindful parents, always making your children wellbeing a priority. I know that you'll will explore the issue of drugs with caution and while keeping open mind. I will keep my fingers crossed that you'll find good options, whatever they might be.

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  19. My GA is also very skilled with her feet. She can also pick anything with them. Thank God the days of constant vigilance are over. Our kid is 10 now, and doing great. I know you think you cannot keep going for much longer, but it's amazing how much we cannot handle without knowing. You will see thinks will get better.

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Respectful disagreement encouraged.

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