Saturday, January 31, 2009

A Yo-Yo of Emotions

With the start of a new year Felt and I decided to change our health insurance company to a self funded plan. House bill 1919 was approved last year in Texas so that all children on the Autism Spectrum could receive speech therapy, occupational therapy, physical therapy and even applied behavioral analysis (ABA) at unlimited rate as long as you have a self funded policy. The disadvantage to doing this is that we now have an HMO. ARG! So, we have to see a PCP-primary care physician before going to any specialist and Andrew's great Pediatrican that we just found 6 months ago does not take our new insurance. It feels like we are starting all over again with looking for a doctor, one that won't hound us about vaccinations because we have chosen to no longer vaccinate him, and one that will be willing to learn about Rett Syndrome. This is not fun because I have to get someone in the next week so that we can keep our appointments at the Rett Clinic at Texas children's in February.

However, one good thing about the change in insurance is that now Andrew can get 2 hours of ABA every weekday for a year!! I can not tell you how excited we are about this. I know it will be alot for him and for us to get used to but I know that it definitely made a difference when we did this with the Early Childhood Intervention. And he we still have the same therapists that he did from before.

As for school- it seems like they are just babysitting him. I hate that! I don't get any info on what they worked on, did during the day, etc. Every day the teacher brings the kids out and tells each parent "he did good today." What? A good day to you might be a bad day to me. What is a good day, really? I was also informed this week that his aide was pulled to another room and that there will be a sub or someone else to cover until we have our next ARD in mid February. Yes, another meeting to discuss whether or not he needs an aide. I thought this was over but I guess the battle on this has just begun since the district has a hiring freeze and wants to reevaluate every 30 days . I really want someone who can be consistent with him. I think we have some ammo for the meeting in that all of his goals on the progress report stated no progress. Really, no progress? I know Andrew is a lot lower functioning than some of the other children in the class but I also know he can make progress and was making progress before he started school.

The changes in aides has also carried over to home. The person that was hired to be his attendant at home never showed up this week and he had a different person watching him everyday. I usually go to work after they arrive but it took me a lot longer this week- explaining Rett Syndrome to each person, talking about his diet, schedule, dislikes, likes, and trying to warm up and trust this person with my precious angel. It was hard. I hope things get better with this situation too, and I guess it's tough knowing that we will always have these problems.
Andrew has to be so confused and I am so thankful that Rebecca, his teacher from Early Childhood Intervention, watches him on Fridays. The moment we get to her house he is smiling. Yesterday one of her daughters asked if she could marry him. Too cute!

One more yea thing- The agency that I work for has decided to pay for Vital Stim therapy Certification for me. YEA!!!!!!!!!! I am super excited as I have wanted to do this for a long time, but it costs a lot of money. I get to travel to Dallas next month and take the 2 day course, take a test and then become certified so that I can help children with dysphagia. I know this therapy works and we got to see first hand with Andrew. I just wish it would have worked longer for him than 6 months.

Ok-enough for now we are off to have a fish fry from the 30 pounds of fish that Felt caught in the gulf a couple of weeks ago. Too bad I don't eat fish!

1 comment:

Karlie Grace said...

Big Woohoo for being able to get VitalStim certified! Huge difference for us but beginning to wonder if its effects are weakening? Is it possible to do repeat visits? I hate to hear about the school issues. Silly of them to keep reevaluating him for an aide. Have you requested a more detailed exhange about his daily school activities? Wishing you the best of luck finding a new doctor! I'm sure gettin all your ducks in a row for insurance is a pain but the unlimited rate therapies will be awesome! Lol at the little ladies man getting a proposal. He sure is a cutie!