Life with Fragile X Syndrome

Hey folks, we’ve had a really busy stretch here so I haven’t been able to really think about what to post. I guess a roundup post is in order!

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We got up early, left the house at 11 and headed to the Aquarium. The trip was as fun as the destination for him. He loves riding the bus and the train.

He loved the seals and penguins. He loved looking at all the fish and crabs. He love standing at the top of the tank and looking down at the turtles and the rest of the reef dwellers. I can’t think of any part of it he didn’t enjoy. He mostly walked, though we did have the stroller with us. He’d wander a little bit but never too far. He would hold my hand when it got really crowded but pretty much was just intent on all those FISH!

He broke out a couple new signs, “starfish” and “bubbles.” We met another little boy who knew some signs (his mom had taught him sign language before he learned to talk) and he said and signed “I love you” to Monkey and Monkey boy TRIED TO REPEAT IT! In spoken words. He was close, I understood him…and I almost passed out. He won’t repeat it though, lol.

At the end of our long day we were sitting at Harvard Square waiting on a bus and I handed him a small container of Cheerios. He dropped it and said “Uh OH!” He’s getting there!

Yesterday B. and L. came for an EI visit and it was a really good visit. Monkey was soo happy and social during the entire visit. We’ve even started a sensory diet for him which involves using a small brush on him to help determine when he needs sensory input and to help redirect into more stimulating activities. After L. used the brush on Monkey twice he  instantly grabbed it from her and tried using it on himself. When he couldn’t get the right motion he handed it back to us to do some more. We’ve been doing it since yesterday and he’s been doing great.  He really seems to enjoy it and it seems to relax him quite a bit.

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Just before bed Monkey was watching an episode of The Backyardigans and I was practicing my knitting. I was concentrating so I didn’t see him go get my umbrella out of my bag and when he put it on my lap I just set it aside without giving it a thought. He wasn’t having that though, he picked it up again and put it in my hands (on top of my knitting.) This is the conversation that ensued:

“It’s an umbrella. Why do I need an umbrella?”

Monkey points to the window and makes the sign for rain.

“Yes, it’s raining outside. Why do I need an umbrella?”

He signs bye, bye!

He’s simply brilliant, eh? He wanted to go for a walk, lol.

Every time the folks at EI visit they leave a report of the visit, this story from today is too cute not to share.

“Met Monkey at home with his dad. He seemed tired and dad thought he might be getting sick. Monkey hadn’t taken a nap yet today and he started to cry and lay down when we were trying to play. We decided to take a break and watch a Signing Time video. We practiced the signs for different zoo animals. When they started to make the sign for crocodile, Monkey went over to get his book of animals. He started to flip through the pages to find the picture of the crocodile, when he found it, he pointed and made the sign. Later when the video was demonstrating the sign for monkey, I asked “Where’s the monkey?” and Monkey found the picture and pointed.”

Pretty smart cookie, isn’t he?

Amazing day so far! This morning Monkey joined me on my commute because Duhdee had jury duty and Monkey needed to go to daycare. I was a little stressed out, none of us slept very well last night, but it went super once we managed to wake Monkey up, lol. He so did not want to get out of bed today! I had to wake him up 3 times, the last time I picked him up and put him on the couch so he couldn’t keep rolling over and pulling the blanket back over his head. Sheesh, just like his dad!

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We had a couple of good days. On Saturday, Duhdee, Monkey and I went to visit Duhdee’s friend C. We got to meet C’s dogs and Monkey showed off his superior puppy greeting skills (hand out, palm up) and even left Duhdee and I to explore the house a bit. I thought Monkey would have at least a small meltdown being in a new place but he did fantastic. He even gave C a high five when we left. Read more →

I took my hair clip out of my hair and laid it on the table.  Monkey grabbed it and put it in his mouth and then put his hands up to his hair and pretended he was putting his hair up.

 He did it just like I do, lol.  So CUTE!  He is such a sponge.