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On a good note, Tyler was great this weekend! We started teaching him letter signs this weekend and he really really likes it! He asked me to do it repeatedly and the first time I showed him, he was engaged with me for 4 rounds. Also, I sang wheels on the bus to him and I was sitting on the bed and he was just standing on the floor. When I got to the doors open and shut, he signed it all on his own the first time through without prompting. Yeah. Also, Ben got a Thomas the tank engine laptop game last Christmas. There are many activities you can choose in the game. One of them is to find capital or small letters. Tyler was doing this all weekend long. It would say, find the capital letter "a" and Tyler would push A. First I would repeat the question and then I stopped to see if he could follow the computers instructions and he could! He also got a lot of joy out of me and the computer praising him. I love that he's reinforced with social praise, he did not used to be this way.
On another note, we are considering taking him off some of his supplements. We had added about 6 or so in the last 8 weeks and have not seen any improvements in that time. We'll take him off and see if there is any regression, if there is, then we know they were benefiting him, if there is not, we'll most likely leave him off for a while. We fully plan to keep him on the digestive enzymes, multi vitamin, B12 shots (which we've increased to every other day) and melatonin as it helps offset the insomnia that can occur with the B12, but the other stuff we may fade out for a while. It's a costly and it add significant stress trying to get it all in to him every day and sneaking it in food that we don't feel is necessary if it's not benefiting him at all.
Which brings me to another note. I signed up for google news alerts that sends me an email a couple of times a day with articles that have the word autism and recovery in the story. I got two interesting ones over the weekend, one was a blog from a mother. Read it if you have time.
http://mickiesprogress.blogspot.com/2008/11/autism-treatments-come-with-hefty-price.html
This is unfortunately so true and one that I said I would never let stand in the way of our goals for Tyler but I realize sometimes that I have no choice. If I had an opportunity to do everything I wanted for Tyler, our picture would be quite different. We'd still have Tyler in preschool as I really believe in the group activities, structured environment, based on verbal behavior teachings. We'd also have a private speech therapist working with him at least 3 times a week, we'd hire a private ABA consultant to work with Tyler in the late afternoon before dinner and we'd do music therapy, HBOT (oxygen treatments), etc. on the weekends with the help of our live in au pair who is has experience with children with autism and wants to get a degree in this type of work. I would do and give every supplement as instructed by the DAN Protocol as long as it's not hurting Tyler, we'd have all of Tyler's food sent to us to make sure he's getting the proper amount of calories, fat, etc. I'd not work so that I could spend the most time with the boys as possible and make sure they both get the love and education that they need. Our basement would be finished and be set up in an environment that promotes social interaction and both fine and gross motor skills. If I had my way, that's what I'd do. I don't want money to stand in the way of his possible recovery and I believe we've made very smart decisions based upon what Tyler needs and what we can swing financially. But I wonder what if.. what if.. I could do everything my heart desired for Tyler, would that be enough? I'll just never know cause we certainly will never have enough to do all those things. I can tell you that there are times I seriously consider moving us to a state where insurance covers treatments (ours doesn't even cover speech until he's 5, no OT, no ABA) where maybe Steve could get a job making just a little more money and I could stay home and make sure everyone had what they needed adn drive Tyler from appt to appt. But for now I feel like we are doing as much as we are financially able to do so we'll see how the next year goes. Which brings me to the next news article.
WPVI-TV Philadelphia Study shows families' financial strain from autism Sunday, November 30, 2008 4:19 PM By LINDSEY TANNER AP Medical Writer CHICAGO (AP) - November 30, 2008 (WPVI) -- More than half a million U.S.children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show. Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found."This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan,a researcher with the government's Maternal and Child Health Bureau.The results are from a nationally representative 2005-06 survey of nearly40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness,requiring more extensive than usual medical care.A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study author said.The study appears in December's Pediatrics, being released Monday.Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected familiesface.Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son. She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said. Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois. Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids. She is divorced - another common casualty, she said, of the challenges of caring for autistic kids.
