050708 Update

Tyler and I both mastered more goals last week so we have some new goals established. I do not have them with me but I'll hopefully share them with you tomorrow. We received some good feedback as to our successes but also were told in a nice way that we both need to work harder. Florida State reviewed our parent fidelity tapes (Tyler and I are taped weekly) and also the clinician fidelity tapes (Carrie is also taped weekly) and they want us to push Tyler harder. We need to do less and make Tyler do more, i.e. when we play parade, Tyler, although engaged, has chosen recently to not actually go around the circle. We've begun to kind of gently force him to go around at least 1/2 turn at a time. We also need to continue to up the ante and find ways to keep Tyler just a little frustrated but while maintaining regulation. I'll be honest, this feedback added to the mommy guilt I already feel. Although Carrie and the study have been a true blessing for the family, I look forward to the fall when we hopefully have more people involved in Tyler's therapy. I'm being pulled in so many different directions during the week that I"m finding it nearly impossible to ever "up the ante" and push Tyler harder. We do work on our routines and you can really implement strategies that we've learned in all of Tyler's day, however, pushing him with everything else going on is hard. For example.... when taking the boy s for a walk in the stroller, I'll stop, to try to get a requeste for Tyler to gesture "go" or make some sort of vocal sound to indicate go. This requires a long pause on my part.. When I do this with Ben in the stroller, Ben immediately, says "go", stuck, etc. adn then doesn't understand why I'm not going. Then I explain we are waiting for Tyler to say go. I explained my concerns to Carrie and how I feel I'm not doing enough for Tyler and she said this is common complaint with parents of a child with autism, especially when there is more than one child involved and both parents work, etc. There are times I see Tyler doing or working in a way that I should stop him or redirect him and I can' t because Ben is needing my attention at that time or I'm cooking dinner, laundry, etc. It's a struggle because most parents are free to do chores, etc. when their kids are playing happily, but even if Tyler is happy doing something, it may not be an appropriate way to play and as much as possible I should be helping him.



We still have plans in the works for bringing on a behavioral analyst in the fall. I'm waiting to receive her paperwork in the mail and am waiting to hear back from HR on the benefit side of things. I have a few possible tricks up my sleeve in terms of way to get funding and to find a way to afford all of it. This is the reason the rally was so important. I can't imagine how much money a family would need to make to afford $2500 a week for just one type of therapy but it's ridiculous that we even have to consider paying it out of pocket. We are hoping beyond hope that the bills will get passed (first they ahve to be brought to a vote, which has not happend) and we can get at least this portion of his therapy covered. The biomedical stuff is not covered and can also be hundreds of dollars a month. For example, the urine test we did on Tyler last night is $130.00. THe first one came back inconclusive and we are still waiting for a refund on that one. HIs b12 is $100 a month and we've just purchased what is the beginning of the other vitamins for him which is where the costs can add up. Oh, and we spend $200.00 a month in just rice milk and formula to make sure the skinny minnies are getting as much nutrients as possible. Yes, the formula is casein free. We are lucky in that the OT and Speech are both offerred through the school district so we dno't have to pay for any of that :)

Please don't feel sorry for us, I'm writing this so you can see how important those health bills are and if you can find a way to make sure your representatives can push these bills through it would be greatly appreciated!!!! If you knew the success stories we know or saw for your own eyes some of hte kids who have recovered, you'd be astonished. http://www.dailytribune.com/stories/010708/loc_autism.shtml This article is about Justin Harlan who is the son of STephanie Harlan who is the director at the Judson Center. They both spoke at the rally. Justin has also spoke on the floor at the capital. He's only 11! He is amazing, a true success story. Not all kids have this much success, in fact, few do. We are not ignorant, we know the chances for a full recovery (i.e. no longer fit autism diagnosis) are slim, but when there is a chance, no matter how small, how can we deny Tyler that chance. I can't and I won't. So again, I'll apologize for our lack of involvement in the next few years with family and friends. We may not have extra money for presents at Christmas, or remember to buy birthday cards or be able to attend family functions. Our neighbors are probably tired of looking at our overgrown/weed ridden lawn, but all of that just seems so insignificant in the big picture. So please do what you can to support those bills. It's the biggest thing you can do to help our family.