Monkey boy and I are home today. He melted down during our team meeting this morning with his therapists so I decided to just stay home with him. He’s had a very busy and upside down week so I think he deserves it.
Life with Fragile X Syndrome
Pardon me while I vent my frustration.
We’re getting jerked around by Cambridge Public Schools. They’ve only set up 2 of the 6 evaluations we need to have done by mid-March, NONE are completed. They’re not returning my calls. I’m unimpressed with their process. I’m unimpressed by the fact that we’ve had to hire an advocate (which is NOT cheap) because it was pretty clear they were not going to play nice.
Everyone says we need to try to get along but they’re not trying to get along with us. They told us how they’re going to proceed and it doesn’t seem to matter that their process is illegal and it doesn’t seem to matter what we think. Bah. They suck.
He peed on the potty!
I’m ready to get this potty training thing in high gear. He sat on and successfully peed in his potty tonight before his bath. He tells us when he needs a diaper change, he goes off for privacy when he need to go #2. Does he sound ready to you guys?
BOOM!
So said Monkey boy tonight as we were reading a story. I read the line “with a mighty BOOM and a billow of smoke…” and he jumped right in with a “BOOM!” of his own. He and I played a silly game of saying BOOM! to each other and giggling. He’s too much fun!
Oh, and he and I played in his little play tent/hut thing tonight. He’s never been a big fan of it but he started playing in a tunnel with one of his therapists recently so I brought it out to see if he’d enjoy it. We had a really good time peeking at each other through the windows. At one point he went walking toward it signing “house.” I certainly hadn’t called it that but he was right.
Time flies when you’re trying to get some sleep!
We’ve decided to tackle Monkey’s sleep issues. For the last few months we’ve been really struggling here. He will go to bed and then sit in his crib (sometimes crying, sometimes not) for HOURS each night. He just cannot fall asleep. Some nights he’ll be in there wide awake for 3 or 4 hours. It’s so sad. We kept doing what we’d always done, hoping it was a phase but it wasn’t. Read more
He speaks!
Tonight we were on our family walk and we told Monkey “Look, there’s the moon!” and pointed to it. He said “moon” clear as day 5 or 6 times and when we asked where it was he pointed RIGHT at it. So cute!
So sweet….
Tonight, while I was dressing Monkey after his bath, I stood him up on his changing table and told him “You are soooo cute!” and he responded by putting one hand on each of my cheeks and smiling at me. What a charmer.
A little anecdote from Monkey’s therapy session today
About 20 minutes before Monkey’s therapist was supposed to leave today he walked over and picked up her coat and handed it to her. He then waved bye-bye. She told him it wasn’t time yet and engaged him in another game. When she then sat down to write her note he grabbed Duhdee’s hand and began pulling him toward his room. It was nap time!
How is that for clearly stating his wants? “OK, leave now, I’m going to bed.”
The nail fell off…
and Duhdee cannot FIND it. Ewwww!