OK- so I haven't gotten around to posting pics yet. I'm kinda slow. Last week was hard for us. After the aptmt with the neurologist we went and saw the DAN doctor. What a waste of time!! She told us she has a waiting list and that she couldn't help us. She recommended the diet (glutein and cassein free). Some of the research we have read says that it helps to regain a child's attention and their level of awareness. Andrew has been on it for several days. He has been really irritable and cried a lot. It reminds me of someone going on the South Beach diet or Atkins diet and the pain they first experience. He is now getting occupational therapy, which I am not to sure about. Why am I so skeptical of people trying to help us? I just don't understand why they think that the Greenspan theory, or Floor time model, works. It's a child centered approach where they follow the childs lead in therapy. Whatever he does the engage in the same activities. Sounds great but I did this in grad school with autistic kiddos and it didn't do much for them. Let's face it- the whole world doesn't revolve around Andrew and we don't need to start acting like it. I'm looking into ABA (applied behavioral Analysis), the research is much better with this and discrete trial training than the Floor Time Model. I don't know, it's all pretty overwhelming. I make calls, leave messages, check the mail, and wait for people to respond so that we can get him into the right programs and therapy. The other night we noticed that he seemed to drift off more to his own world and we couldn't get his attention. Sometimes we feel like we are losing the real him, and it's heartbreaking. I really feel like this is a disease and not a disorder almost like Alzheimers. It just takes over their whole body. I am hopeful because he is still so young but it is very hard when you see constant regression. We will always fight for Andrew and we want nothing but the best for him. Please keep him in your prayers.
Andrew went to daycare today. I'm not sure how things went but when I picked him up the other kids were all acting like big people and trying to help Andrew play with toys. It was kinda cute and they are all precious. I know there will be a day when the kids at school won't be this sweet, but for now it is cute. His teacher said that he did not take a nap. Yikes!!! Let's hope he can transition better tommorrow.
My first day was ok. The staff at my school are great. They are all very family oriented and I am really starting to love the SA culture here- everyone hugging to greet each other. The best part of my job- I get to leave at 3:00- YEA!!! That has never been the case at any of the 6 schools I have worked at. I'm just not sure that I will make it at 7:30 every morning. Let's hope the slow paced culture of SA will generalize to morning time at school. Right?
Tonight has been crazy at our house. It all started when I was watching Super Nanny and I heard a noise coming from the laundry room. The dog ran to the door and it sounded like an animal. Felt went into the garage and found a racoon. UUGHH! Gross! He said he tried to get it leave, but since we have so much crap in the garage it wondered around in our stuff. He placed our trashcans in the drive hoping to get it to leave but I'm not sure that worked. This would be the time when we need a gun, but we still live in the city limits. I am so grossed out by this that I would rather not go in the garage or laundry room for a year or more. Am I crazy?
Rett Syndrome. One year Post Surgery
9 months ago