4/28/08

I apologize for the delay in updating the website. So much has been happening that I was hoping to have everything resolved to give one big update.

Session Update: Sessions are going well. Tyler never eats well at the clinic on Fridays. We spent hte last 15 minutes of the session getting tyler to take "just one bite" and eventually he did. We didn't force the issue but we also wouldn't play with him or do any of his requests until he took a bite. We didn't say no when he asked us to play we just said "one bite".. we prevailed, yeah! Following through with demands, as long as they are reasonable and supports are provided, will really help Tyler behaviorialy in the long wrong. There was also an autism awareness training at the fire departmetn Friday morning. It was the first time I sat in on training and it went very well. I had avoided the others for fear that someone may say or do something that would upset me, but everyone was on their best behavior. All shifts have now been training in autism awareness.

Carrie also came to our house Friday night for a make up session and to see the difference between when she sees just me and Tyler during snack time at my house vs. when the whole family is sitting down to eat dinner. The daycare provider and her daughter also attended. If I could sum it all up in one word it would be "chaos". Ben was acting up since there were new people in the room. He didn't want to eat or listen to mom. Tyler hadn't ate well all day and took about 10 mintues to chew just one piece of meat and then the boys were competing for attention from the daycare provider and at times me. So all and all it was nuts, but on the other hand, very good for Carrie to see how different it is when it's not just me and Tyler and when I'm trying to eat too. The meeting also gave us an opportunity, i.e. Carrie, Dad, Mom, Daycare provider, to all collaborate on Tyler's progress and rules, etc. We are all rarely together, in fact, this may be the first time we all were together to talk so that was fantastic.

School District Updates: We are switching speech pathologists. I've had some growing concerns over the services Tyler is receicing from the school district. After much discussion with one of the leaders at the school district, a decision was made to change speech pathologists. I'm supposed to get confirmation of the change today. Hopefullly then I can set up a meeting with the new person and move forward with Tyler meeting them and discuss our goals, etc. and get moving. The plan is to have speech and occupational therapy to continue at daycare. The past pathologist was wonderful and really pushed Tyler to eat when he was 13 months old and refusing most every food. We just feel that at this point it would be best for TYler to see a different pathologist; someone that fits the personality that he seems to learn the best from. HE's done so well with the study. The school district leader is also very supportive of them following the lead of U of M since TYler's made such progress. The Occupational Therapist will remain the same and is supportive of slowing things down a bit to give Tyler the best opportunity to learn. If you want more details about any of this, just let me know. It's too much to type.

Biomedical Updates: We are still doing the B12 shots and the GFCF diet. Tyler was a little out of sorts on Saturday and we suspect he may have somehow had some gluten in his system. Wouldn't be hard if ben dropped a cracker or something but we'll never know for sure, he's much better now. We had to re-order a urine tester kit because the last one was inconclusive due it being too diluted. THat test alone is $130.00 and not covered by insurance. None of his biomedical care is covered by insurance and even if the autism insurance bills pass, it still will not because that type of therapy is not included in the bills. Baby steps though.. the other type of therapy that would be covered would be amazing. Which brings me to my next update.

ABA Therapy: As I stated before, we lose Carrie sometime in July (boo hoo, tears falling) and want to pick up where we left off with therapy. We are currently researching ABA therapists in the area and are obtaining information. Once we have more information, I'll let you know. We are hoping we can somehow find a way to have insurance cover this but the chances are slim. I'm looking into what type of procedure code the therapists use for billing, etc. and working with our HR department to see what can be done. We want Tyler to have about 25 hours a week of this type of therapy which woul dbe around $2500 a week or $10,000/month, obviously we do not have that. If all else fails, we'll try to have someone train us a few hours a month to work with Tyler and then we'll provide as much as we can for him and possibly hire students to assist. Our philosophy is "never give up" so we'll do whatever necessary to get him what he needs with the least amount of impact/stress to our family but we won't give up regardless of the cost. If you went to the rally, you'd know why. There are vigilant parents up there who have children who recovered who were literally shouting, "Don't give up Parents" "fight with all the fight that you have" and that's what we plan to do. We saw for our own eyes receovered children, it gives so much hope. Even though it's few and far between the children that actually recover to the point of no longer having an autism diagnosis, we are hoping Tyler can be one of those kids. We'll love him the same no matter what but we also don't ever want to look back and question whether or not we did enough.

Walk: I have no idea what autism speaks didn't announce the date/location of the walk as they had intended to do on Friday. THe date they gave me at the rally was October 12th. As sooon as they confirm that date/location I'll send out hte info. Please join us to support autism speaks, they've been so helpful to our family.

Family Fun: we took the boys to kelly inflatables this weekend and they had so much fun! As soon as we download the picturse, I'll make sure to post one. I was so proud of the boys. They climbed one of hte ladders adn went down this huge slide all by themselves. It takes a lot of gross motor coorination to do all that, especially since hte ladder was bouncy and there were other kids there.