Last week Andrew's class had a field trip to the zoo. I wondered if it would be chaotic like it had been the week before. Nope! He had so much fun and the weather was in the 70's with a little drizzle off and on. He loved the birds and the fish. I would point things out to him and suprisingly he would look in that direction about 10 seconds later. He smiled a lot and didn't do a lot of wrining his hands. I have got to take him back, it was soo much fun for him. I really enjoyed talking to other parents there about Rett Syndrome and their children's diagnoses. It was nice to have people around who understood frustrations, disappointments and who could enjoy Drew-Drew. And the best part was that there was hardly anyone at the zoo that day.
We have 2 more ARD meetings scheduled with the school. They are offering summer services because he did show regression this year. I am turning that down because it means a different school 30 minutes across town, with a different teacher, and only a couple of weeks. I would rather work with him at home and take him to SeaWorld, Zoo, children's musuem, etc. Not only that but now he has OT, PT, Speech and his 2 hours of ABA everyday. That's a lot for a little boy. We also have an annual ARD meeting before school lets out to change goals and talk about some concerns I have. I expressed the concern that he doesn't have a voice in class and although they tell me they use augmentative communication, I am not seeing any or hearing about it.
Next week we have our home study with the adoption agency. Our caseworker is suppossed to be here for most of the day. I am a little nervous about how it will go- our needy great dane Lucy rubbing her face on people, Maddie our dalmation waiting for you to drop some of Andrew's food, Andrew throwing a tantrum over Elmo dvd's, work calling my cell phone several times a day, AAHHH! Let's hope we pass!
Today is the big FIESTA party at Andrew's school where Kindergarten has a parade with their
FIESTA floats. Every child makes their own float and dresses up and plays mariachi music as they go through the halls. It's a San Antonio tradition and FIESTA lasts for several weeks with parties and daily parades downtown. I was sad to find out that Andrew's class doesn't get to participate. I really need to start talking to them more about inclusion.
Every afternoon several of the kiddos on the street ring our doorbell to ask if Andrew can come play or 'is he with his nurse?" It's really sweet. We both go out and sometimes with the attendant here and play duck, duck, goose and watch them as they play in the cul-de-sac. One little boy, a 2nd grader asked when Andrew is going to learn to talk. What do you say to that? I told him that Andrew is a very special little boy and that he may never talk but we love him anyway and that's why we help him so much. He was so cute to Andrew and says hi to him every morning as they pass in the hall at school. I wish I would have had a better response to his question, like 'he talks with his eyes.' Oh well. Another little boy sat always asks if he can pull him in the wagon. It is too cute to see him pull Andrew around the street. I need to get a picture. Kids are so great, they just want to help and really love on him. I am so glad that we have the opportunity to show them that Andrew can play too. Just not sure their parents would appreciate them inviting themselves into the house, playing with our crazy dogs, and asking for drinks. I do love this though!
Rett Syndrome. One year Post Surgery
9 months ago