Sometimes I get into these periods when I just want to forget (as much as possible) about Fragile X. I just want to be a normal (as much as possible) mom and do normal things with my normal family. I have been deleting almost all of my FX related e-mails. I have kept a few because the subject perked my interest but I haven’t read them. I have been deleting almost all of my SPEDPAC e-mails too. I am a very good ostrich when I want to be!
So many really cool things have been going on here but I got so behind on posting that I couldn’t figure out where to start and then I felt overwhelmed and paralyzed so I just didn’t. It is too totally rational!
Anyway, during the radio silence we here at Chez Monkey have been a grand time. We’ve been working on projects around the house in preparation for our Thanksgiving feast. My dining room turned office/playroom turned office/playroom/dining room is back to being just a dining room!
Thanksgiving here is done in 3 Acts. Act 1 is Thanksgiving Day which takes place at our home with just our little family. Act 2 is the Saturday following Thanksgiving which takes place at my parents house and included 23 people this year…and some were missing! Act 3 is the following weekend at our house once again but this time with Duhdee’s family. Even though we chose to do a non-traditional ham in Act 1, I am still heartily sick of turkey. This is very unfortunate since we have approximately a metric ton of turkey left from Act 3 and it is still in the process of being turned into turkey pot pies so my house still smells like turkey. Ugh.
Monkey had school pictures taken this year. The last two years we’ve told them to let him participate if he wants but please don’t torture him. The child hates having professional pictures done so badly that we’ve NEVER done it sucessfully! This year I expected the same. I gave them money for a package of individual portraits and money for a class picture and told his teacher to use her judgement. The kid actually let them take his picture! He is sort of smiling but not looking directly at the camera. I consider it a huge win since under normal circumstances he is on the floor doing his limp noodle impression.
What else? The talking. OMG the talking. We have still not told him to stop talking but only just barely. It is still hard for other people to understand him at times but his words are getting clearer and clearer. He has the “Umma, Umma, Mama, Mama, Mom, Mom, Mom” thing down PAT. His inflections are much better, we can tell when he’s asking questions now vs. making statements. He is a little repeater now. This morning on our way to class he was goofing off and I said to him “You are a fruitcake!” Not only did he agree with me (he also agrees that he is handsome, goofy and a smarty) but he repeated the word!
His sleeping still sucks. He is fine going to sleep but he wakes up in the middle of the night 3 to 4 times a week. Sometimes he goes right back to sleep but most times he does not for long periods of time. We have tried all of the advice given to us at the last FX clinic appointment and it’s helped marginally but not nearly enough. Great Grampy told me this weekend that when Monkey wakes up during the night it wakes him up too. We really need to figure something out. We asked his teacher to make note of the days when he is really tired. We can see the effect it’s having on him at school. When he’s well-rested he is much more vocal and calm…when he’s not he’s a ball of frenetic energy. His teacher thinks he’s just trying to stay awake by constantly moving. I’m not sure what is next…we’re going to have to go for another appointment…with the changes to my health insurance we’ll have to pay this one out of totally pocket. Bugger.
I think that’s enough for now, don’t you? I still want to write about cutting our own Christmas tree in the near future though 🙂