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basking in the glory of summer August 4, 2010

Posted by caizooka in autism, autism parenting.
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After a very busy June that entailed much fun…a vacation, a couple of birthdays, and lots of other activities, it is now life back to normal. Oliver had an amazing time with our babysitter when we were gone. I think that it was good for him to get used to something/someone different for a short time. The first whole week since getting back from vacation was blissful for all of us. Oliver got so much attention from my family in town, too. He laughed, he smiled, he talked and talked and talked. He was a beacon of light and wonder. Everyone marveled at him and he basked in the glory of the attention.

Oliver has been getting along really well with his brothers. It is so sweet how he embodies a certain character when he is ‘big brother’. He takes on a certain tone and demeanor when he is trying to teach Emil something. This past week they got new squirt bottles to play with. Yes, their horribly mean mom refuses to buy them anything that resembles a gun… Oliver very happily taught Emil how to successfully utilize a spray bottle. How to fill it. How to point it at someone. How to shoot at Julian and his friends. He talks with the sincerity of someone who has been empowered to pass on the very delicate secret of ‘how to use a squirt bottle’ to the next generation. Very, very serious. Emil listens with conviction and responds accordingly. “okay, Oliver”. It is music to this mom’s ears.

Oliver has also been attending an adventure camp of which has been organized by some very gifted ABA teachers. Wow, they have really made Olivers’ summer soar. They meet at local parks and have a very organized schedule and curriculum. Oliver has made some really nice friends through this camp. Some of whom appear to be cut from a similar cloth as he. It is fascinating to see how different, yet how similar autism affects children. Each child in this camp is autistic, but each so different and so entirely unique. It was a great experience to see my son speak in his own language fluently amongst his peers. He flourished in the company of friends who belong to and communicate in his own world. He seemed to be empowered by this group. I will definitely continue some of these relationships with the other families.

wondering how much my right arm would fetch on eBay February 4, 2010

Posted by caizooka in autism parenting.
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In putting tax info together, I came across some startlingly realistic numbers. I’m trying to figure out what autism is going to cost financially. What therapies have the highest rate of success? Which therapies are bogus? Which ones are right for O? So many questions and so few answers. He definitely needs ABA therapy. A lot of it. He currently goes 2x/week. I’m finding in research that it recommended that 40 hours/week is necessary to achieve any real results.  Hmm…40 hrs/week at $85/hour. That is $13,600/month. $163,200/year. I could probably find a teachers assistant that wouldn’t have such an hourly rate. Next, we’re finding that a lot of O’s tantrums are most likely caused by his sensory processing disorders. He will need that therapy at least 1/week. That is approximately $140/hour. $560/month. $6720/year. Then there is the gluten free/casein free diet which is not inexpensive. There are the supplements, the regular doctor visits. For other families out there that are encountering this, I wonder how they are coping. How you prioritize what is necessary vs. what is not. I guess that it entirely depends upon each child’s individual needs.

I’m not complaining here. I know that we’re going to find the very best solution possible for O and for our family. I am beginning to think that there are many different kinds and causes of autism. And therefore different coping strategies, different therapies, different cures. Some are better detected earlier, some not. Some manifest themselves in very complex, different ways. Is there a cure? I don’t know. I want to believe that I’m trying my hardest to do everything possible to give O the best space for him to grow in. Seeing him when he is having a tantrum is so painful. I can only imagine the pain that he is in when he is feeling all of the sensory overloads. I am truly afraid to say that I believe that there is a cure because I don’t want to put pressure on him, on me, on our family, for him to be cured of autism. I will love every ounce of him either way.

On a different parenting note…the parent of a 13 year old boy…it seems like girls are entering the picture. These sweet 7th grade girls who were at the 7th grade boys basketball game last night. So entirely adorable in their school color outfits from head to toe. Their cheers for the team. Their contagious enthusiasm. After the big win, they went over to congratulate the boys by hugging them.  Ooooohhhh. Never seen anything as awkward in my life as these boys when these spunky, precious girls came up and hugged them! I was half chuckling at their reactions to the girls, half embarrassed for the boys because it is so far out of their realm, and honestly, thinking a little bit of, ‘hey…hands off my son!’ Never felt that before. That’s just the beginning, isn’t it?!

Pure Joy January 12, 2010

Posted by caizooka in autism parenting.
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Tuesdays mornings are just about me and O hanging out. We usually go out and share time doing a one-on-one activity. Today we just took it easy and hung around the house. For those of you who know O, you know how inherently funny he is. He has an amazing imagination and a great sense of humor. Sometimes. When the stars are aligned just so, spending time with O is pure joy. Earlier this morning he was so impulsive. His hugs were too hard. Sounds weird, I know. He wants to hug kindly but then hurts you by hugging too hard. His impulse control sensors are off. It’s a challenge to hug someone when you don’t know if they’re going to hug you back or hurt you. I gave him some space to play on his own this morning and let him come to me. Then we just played. He told me that his dog, who was a boy, is now a girl. His/her name is Puff and she just had a baby. I asked him what Puff’s baby’s name is and he grinned and said, ‘Puff. Puff’s baby girl’s name is Puff.’ What a nut. We started laughing and laughing together about it. It was a brilliant moment. A year ago I would have never, ever thought that he would be able to answer a question without repeating that question to the person asking. He showed zero imagination beyond reenacting lines from movies, word for word. Indeed, most of his vocabulary/words now are still borrowed. But some of it has morphed into his own words. I am seeing more of him lately in his words and it is rewarding.

Working with O’s ABA therapist has been very insightful. She has a great sense of O. I talked to her about O’s behavior issues that we are trying to tackle. She recommended something called the ABCs. It’s a functional behavioral assessment. Tracking the Antecedent, the Behavior, then the Consequence of each behavior. An A-B-C Chart. It’s a way of tracking his behaviors to try and figure out the triggers for the behaviors. I’m looking forward to this process. I did something similar when I started having migraines years ago. I didn’t know what was causing the migraines so I started tracking everything whenever I had a migraine. What I ate, the weather, the barometer reading, mood, etc, etc. It was an extremely effective tool for learning what set the migraines off.  I would love to know what sets O off. At this point it just looks so random.