Yesterday, Akila had an appt afterschool with our Developmental Pediatrician. He is very nice, and I think he is probably pretty good at what he does, but I get the feeling in my stomach deep down that he does not have much of an understanding of FASD.
I had to make this appointment months ago and I purposefully made it in the afternoon so he could see her when her meds had worn off. Her behavior was not super bad or anything, but she was definitely bouncing off the walls. About halfway through the visit when he and I were talking, he told me that at this pre-adolescence stage that Akila is in, is when they usually see kids growing out of the "hyper" part of ADHD, but "obviously Akila has not hit this stage yet", he said. I looked at him kind of puzzled, and asked if even with her FASD being the primary condition (and ADHD and other things being the secondary ones), if she would be expected to outgrow the "hyper" part. He didn't think that should be a factor.
What? Are you kidding me? From everything I have read and from all the trainings and conferences I have attended, I have only learned how much more difficult it is going to get. I know this can sound to the "FASD in-experienced" parent or person like a pessimistic outlook, but it is realistic and necessary in our life to know what to expect. Things are getting more difficult and will continue to.
I told him about how much more violent she is getting both physically and verbally, and his response was that she is getting bigger. I do know that there is no magic answer or solution to our challenges with Akila, but I was hoping for a little more than that. In the middle of our appt., Akila started to perseverate on the fact that she was hungry, and boy did she ever perseverate. She started to try to dig through my purse, and found an Airhead, which is like taffy or something like that. She ate that. I'm sure he was impressed. Dr., I don't know why she is so hyper???
When the appt. was over and we were heading out of the exam room, she remembered her issue with hunger, and started getting very loud about it. I told her that after we got the other 3 kids out of the Sibling Playroom (Children's has a free child care basically for siblings while you have an appt or a child in the hospital-it is the best ever!), we would get something to eat. She didn't like this, and pushed me and was getting very loud. We were in the elevator and she was demanding food immediately. I said go ahead and eat this hand railing then, because I have nothing to eat. I asked her if she would like me to rip up the carpet in the elevator for her to eat, as I had nothing she could eat. She gave me some funny looks, and actually stopped focusing on her hunger- for 30 seconds.
The whole way walking through the building to the Sibling Playroom, she was going nuts on the food thing, very loudly. We walked into the playroom, she saw a doll house and wanted to play with it for awhile. I said what about getting some food for her hunger issue, and she said, "I was just playing. I'm not really hungry." Aaarrrggghh.
Then the fun began of trying to get her out of the Playroom. I let her play for 10 minutes, but the other kids were getting hungry. I guess I should have been more organized and brought them a snack to eat from school to the clinic, but I had come straight off of the lake on my friend Juli's boat (I know, you feel really bad for me now). I figure I have all fall and winter to try to clean my house, and only a few days this fall that are nice enough to be on the boat with her with no kids. It is so peaceful. Once again, we worked almost the entire time. She should really write that boat off, we work more on it than anywhere else it seems like.
I finally got her out of the Sibling Playroom by telling her that Hibeam (our 4 month old puppy-who weighs over 30 lbs already), had been home alone all day and we needed to get home to him. Otherwise, I think we would have had quite the brawl to get her out of there. I was glad she did not have pockets on yesterday, or she would have for sure tried to steal these little people that went in the doll house she was playing with.
I have a meeting tomorrow morning with her new teacher and the full-time aide who is working with her to fill them in on Akila and her issues. I have to get prepared for that later today. I am so glad to have my kids at a school that has been so open to Akila and working with us as a team. What a blessing.
Which is more difficult?
14 hours ago