I sent a note to Rachel’s teacher about her IEP but I haven’t heard anything back yet. I hate no news. She did bring home a sweet story about a monster that I’m going to put in her keepsake box. She’ll get a kick out of that when she is older. Oh, and she wrote a letter to my mom and mailed it to her. I forgot to call my mom and let her know it was coming so it was a total surprise. She told me that after she read it she was bawling like a baby. She is going to write her a letter back.
I got a news article from Matthew’s p.e. teacher about autism. The school is insistent he has autism. But he doesn’t. I think that I saw a breakdown a long time ago about FXS kids and it stated that 1/3 have autism, 1/3 have autism like tendencies, and 1/3 show no signs of autism. I put Matt in the 1/3 that have the tendencies. He is such a sweetheart and likes snuggle and cuddle from time to time. He does bite his hand and stem a lot. I found this article today about the differences between FXS and autism: http://www.nature.com/neuro/journal/v9/n10/pdf/nn1765.pdf. It’s got a lot of scientific language but it’s really good. I think I’m going to share it with the teacher and paraprofessionals that work with Matt.
Kevin and I got his birthday presents today. We got him 3 new summer outfits and a pair of pj pants. All but one outfit is spiderman. We also got him a spiderman tv tray about a month back. Tomorrow we are getting him Charlottes Web with Dakota Fanning to finish him up. We watched it last night and he was pretty into it. When Templeton busted the rotten egg he held his nose and starting saying, “Puke, puke.” Puke is one of his favorite words. I don’t know why.
Well, yesterday my husband and I went to see a doctor for some problems that he is having and got told that he has spondylosis. I found a site on it here: http://www.spineuniverse.com/displayarticle.php/article1440.html. It doesn’t sound much fun but manageable. He also has restless leg syndrome. He is taking Requip for that. And he is taking Lyrica for pain. I’m sure no one thinks at 34 that this kind of stuff can happen to them. It’s so unfair.
One of my school friends is moving back to town in about a month. Isn’t it funny how everyone leaves their hometowns in their 20′s just to move back in their 30′s? I have another school friend moving back at the end of summer too. Anyhow, she has a daughter who will be in kindergarten in the fall and she was talking about getting her tested for the gifted program. I gotta say that after dealing with FXS for 10 years you’d think that I’ve dealt with all the grief of not getting the child I had anticipated. But I still get a little sad to hear of the things that Matt and Rachel don’t get a chance to have. Thank God, I have a fantastic husband who helps me to see a brighter light. We started talking about how blessed Matt really is because he just doesn’t know. When 9/11 happened the world around all Americans changed. But not for Matt. I really envy him for that at times. X