Life with Fragile X Syndrome

Last night we had dinner out.  Monkey filled up on bread while we were waiting for our dinners so he only ate a little bit before he announced he was all done.  Since Duhdee and I had just started eating I told him he had to stay sitting and wait.  First, he tried this sentence “All done, wash hands, wash hair*.” When that sentence was met with “Not yet, we’re still eating.  You have to sit and wait.” He signed “Home.  Walk.  Trains.”  LOL  that is our after dinner routine.  We take the dogs for a walk and hopefully catch a glimpse of a commuter train as it goes through Belmont.We’ll have to try to get a picture of Monkey’s latest chore.  He’s been assigned the task of walking Copper on the nightly walk.  Since Copper is not great on a leash and more than a little unpredictable in his reactions to other animals we meet, I hold a second lead and keep him under control.  Monkey thinks it’s just awesome though and demands his leash as soon as his feet hit the sidewalk each night.

*I have no idea why he wanted to wash his hair, he’s been asking for that after meals for a few days now. 

Yes, I just showered and the day is almost over. Got a problem with that??

Anyway, Duhdee just interrupted my shower to tell me that Monkey was in the living room saying “Ma Ma” and signing shower, lol. I do wish he’d CALL me Mama but the fact that he can is enough. For now, lol.

We are so pleased with how well Monkey has handled the transition. The second night in his new bed Umma had to employ a Super Nanny technique. After I put him down he proceeded to get up and come out of his room 5 or 6 times. The first time I told him it was bedtime and took him straight back to bed. The rest of the times I didn’t speak at all, I just took him straight back to bed. Within 10 minutes he got it and even though he was still awake he stayed in his bed until he fell asleep! The last two nights have been more like the first night. He’s going to bed and staying there willingly until he falls asleep.

Last night I had a work dinner and when I got home I walked the dogs. Apparently we were too noisy because Duhdee heard Monkey in his room. He was waiting for him to come out but he never did. After I got back and was ready for bed I went in to check on him and found him on the floor next to his bed with his sippy cup of water.   I put him back in bed (cup and all) and he barely reacted.

He wandered in our bedroom dragging his blanky around 5 and signed for us to get up.  I don’t think so little man!  I tried getting him back to bed…it lasted for a few minutes and then Duhdee took over.  Duhdee managed to get him back to sleep twice by 6 AM and then gave up.  After being up for a little while and dumping toys everywhere Monkey went back to his room and leaned against the bed.  Duhdee put him back in and he was still asleep when I left at 8:30.  With consistency maybe this won’t be so hard?

He went right to sleep, no getting up, no fighting the change. So cool.  Now let’s see if he sleeps through the night!

MONKEY! It was so cool!

After I got home last night Monkey ran out to the kitchen and pointed to the top of the fridge. We keep the junk food up there, lol. I asked him what he wanted and this conversation followed…

Monkey: “MMMMMMmmmm!”

Umma: “You want M&M’s?”

Monkey dances excitedly while I get the bag.

Umma: “Do you want blue or orange?”

Monkey: “Oooo, doh doh doh.”

Umma: “Do you want a blue M&M or an orange one, use your words.” (I thought he was trying to say orange again, he said it last week for his therapist.)

Monkey: “Bowl.”

Umma: “Did you say BLUUUE?”

Monkey, running to the cupboard, “No. Bowl!” and he grabbed a bowl.

LOL, he didn’t want one he wanted a bowl of them. He got a small handful as a reward. Little punk, I’m so proud.

Well, he is trying his hardest. Last night we went for a walk and when we got home we decided to relax in the yard for a while. For the past week I’ve been trying to get Monkey to roll around on the ground but he hasn’t been that interested in it, even when I did it…. But when Umma rolls on the ground and says “roll, roll, roll, roll….” it’s the best thing ever!!! He thought it was so great that he made up his own sign for roll and he even said the word…. within an hour he was saying “roll, roll, roll” in his raspy voice and both Umma and I were rolling towards and away from him as fast as we could. Little guy was cracking up as we were doing this and he was having an absolute ball! So looks like when he’s really motivated he can use his words.

Monkey has also warmed up to C. quite well. He’s actually pretty comfortable with all of his new providers; I’m so amazed at how quickly he’s taken to all of them. The past couple of weeks we’ve been trying to work on getting Monkey to know his colors, so on Tuesday I showed C. the signs for Red, Yellow, Green, Blue and Orange. Monkey knew how to say red and could do blue and green when he wanted. She has a toy with those colored gears that spin and she’s been making him use the signs to get the gears. He’s really starting to get his colors down!

We just got back from our visit with the PT and he really enjoys playing on the Gross Motor Room at the school. Today he sat on a scooter and scooted around on it a bit, he also went though their tunnel which is quite impressive as it’s not like any of the other tunnels he’s gone though before. It’s a dark shade of red and it a solid material, most of the ones he’s gone though have had mesh so he could peek out if he wanted. But he still went though it a couple of times, with the motivation of his blanket being tossed though it.

The PT was also impressed at how in tune I was with Monkey’s needs and being able to provide him with the deep pressure when he started to get hyper-aroused. Near the end of the session, when I was helping him to calm down with the “Monkey Burrito” and some deep pressure, she said that I’d make a great therapist…that’s like the 10th professional that’s said that.  She also said that I probably think it’s just natural to be in tune with him and to be able to calm him down as quickly as I can, but most parents are unable to do that. I have been tossing the idea of becoming an OT…. it’s just…. I don’t wanna have to go back to school to do it. LMAO.