Tuesday, April 13, 2010

Jack, an update

I wanted to give an update of where we are with Jack and his treatment. First of all, I've finished The Autism Book by Dr. Sears, and I strongly do recommend it, especially if you are new to the autism game. There is *so* much information out there on treatments and therapies, both mainstream and alternative, and it is really overwhelming to even know what to try and how to get started. The thing I like most about this book is that he gives a step-by-step approach for how to tackle autism and what interventions hold the most promise and how exactly to get each started...very specific advice, which I appreciate!

So, Jack has started OT...just barely. He actually just had his third session yesterday. He likes going, which makes it that much easier...but I'm not surprised about that. Kain always loved going to therapy. An occupational therapist will work on life skills with him...everything from dressing and eating and other self-care routines to helping his motor skill delays. She will also help us with his sensory integration issues. Autistic kids have difficulty dealing with stimulation, difficulty filtering what is going on around them, and this can lead to many of their odd little behaviors...everything from hand-flapping to picky eating. One of the first skills they are working on is handwashing. I know that sounds simple, but no, Jack can't wash his hands independently. Now, Jack can do a *lot* independently, don't get me wrong. But life skills...next to nothing. These kids don't have the social skills to be motivated to imitate mom/dad/siblings and learn how to do things like this on their own. Like for Tess, she already is very interested in everything we do and imitates me all the time. Maria's mantra as a preschooler was "I do it mineself!" Jack has never been like that. He can unlock any door, climb into any cabinet, work every button on every appliance and electronic equipment in the house, beat me at any Wii game, and play songs on the piano, but he has no interest in learning how to dress himself or brush his own teeth or put on his shoes. So, they are starting with hand-washing. She has made a chart for him with all the steps involved in washing his hands, and he's practicing with her, and in a session or two she will be sending this home with us to continue working with him at home. It seems so odd to have to work so hard to learn something so simple, doesn't it? But that's where he is.

He hasn't started speech yet. We had to wait for our copy of the reports from the Children's Hospital first, and get a referral from his PCP. Those are all in,,,I'm waiting to get the phone call saying he's scheduled. If I wasn't going to have a baby any day now, I would have called to nag somebody by now, but since we are sitting in baby limbo I can't see a reason to push to get it started right this instant, you know? I'll call and bug someone once the baby is born though.

As far as the alternative treatments to try...the most promising intervention looks to be the casein free/gluten free diet. We are going to take him off casein first, as recommended in the book...first, because it's much easier to go casein free, and second, the effects of going casein free, if you get any, are supposed to show more quickly and dramatically than going gluten free. I dreaded the changes. Jack is extremely picky and only lives on a handful of foods...all of which contain gluten and casein. He basically lives on milk, string cheese, peanut butter sandwiches, crackers, grapes, apples, and bananas. He'll eat some junkier things like pizza, hot dogs, chicken nuggets, and chocolate too. No vegetables. No meat, unless you consider hot dogs and chicken nuggets to be meat :). No juice even. Pushing him to try other foods makes him gag and sometimes even vomit. So, I needed to do this gradually. We started by finding a milk substitute, because he drinks a *lot* of milk, Soy milk is not recommended as a substitute because many kids develop a sensitivity to that as well. So, I bought some rice milk and started gradually substituting, starting with one part rice milk to 3 parts cow's milk. To my surprise, he really liked the rice milk after all, and now he is on all rice milk. I stopped buying the string cheese. And we've used up our old vitamins for him that contained casein, so I'll be ordering some new CF/GF ones this weekend. I would say that this has gotten rid of the vast majority of the casein he eats. That's about it for now, and about all I can handle until the baby comes. Once he arrives I will get serious about reading labels and weeding out the rest of the casein.

Is it helping? Oh, I'm not sure yet. It does seem to be, but I can't be sure yet that it's not a "seeing what I want to see" kind of thing. He's still autistic. :) None of these is really supposed to bring about a miracle cure. I would say the biggest change I've noticed is that he seems happier and more...present. Just more here on our planet, less withdrawn. He talks to us more, he shares more with me verbally, if still in his own quirky odd speech. He also seems to be sleeping better. Last week he even slept one night in his own bed all night long! So, we'll see. After we completely get rid of the casein for a few weeks, we will do a "challenge" of offering it again and see what happens.

So, that's where we are. Thanks for reading along. I'd really like to keep records of what we are doing this way to look back on someday.


Caroline said...

Thank you for sharing your journey Melanie. Our 3yo son was just diagnosed a couple of weeks ago.

A good book I've found is Playing , laughing and learning with children on the autism spectrum.

God bless you!

Maureen said...

I love how Jack is looking at the camera in your Easter picture. It was one of the first things I noticed since you made the comment of how difficult this is to do.

Karen said...

Hi Melanie! I came across your blog via the Blogged site. Our son has autism as well and yes, it is a journey! What you describe is soooo familiar. He wouldn't eat meat until he was about three years old and it was only 'softer' meats (sausage, ham, chicken nugget type stuff). Turns out its yet another sensory challenge for our kidlets.

We went gf/cf over two years ago and while it can be challenging and expensive, we have discovered that it is SO SO worth it for us!! We try to keep soy out of his diet for the most part (I've discovered soy lecithin is in everything, so that one has been more challenging!). He doesn't eat refined sugar at all (and obviously no high fructose corn syrup), no msg, nitrites, nitrates, and as preservative, dye, and chemical free as we can get. We also eat as organic as possible.

If you haven't discovered it yet, Tinkyada pasta is fantastic (I have NO affiliation with the company, just a Mom who made her family happy with a great brown rice pasta substitute. :>) and I was just introduced to daiya gf/cf cheese alternative....its great and is actually like cheese! (Rice cheese slices are just not a good substitute in my opinion....my son would eat it, but not the rest of the fam and its always nice when you can cook one meal that everyone will eat and enjoy!)

Okay..........this comment is turning into a book! If you have any questions, feel free to email me (my email is in my blogger profile). Best of luck to you and your family! :>

mel said...

Thanks Maureen! Yes, in the one below, in our Easter post, he wasn't, but Tess was smiling nicely. I took all these pictures of the kids, and in each one at least one child was making a weird face or not looking at the camera, lol. I went with the one of Jack smiling nicely because it's such a rarity!