Life with Fragile X Syndrome

I just found this article by Tracy & Mouse.  It will be going to the OT.

Stop the Stuffing by Mouse & Tracy

We have been struggling with this since Monkey began feeding himself.  He’s now almost 6 and it is still a daily battle. At school, he often eats lunch in the company of his OT who has been trying to address this.  At home, he eats under our supervision every night. 

We have to remind him with every bite to not overstuff. Sometimes we have to physically restrain him from stuffing yet another bite in.  If he doesn’t overstuff with food he’ll try to fill his mouth with whatever he’s drinking.  It’s messy and it’s gross, honestly.  We need to figure out a way to get this under control because it is going to alienate peers.

Come on FX experts…what works?

I think I’ve mentioned before that Monkey’s great Grampy lives downstairs.  He has lived downstairs all of Monkey’s life.  Every day of his life he has had access to Grampy and, for some strange reason we could never figure out, he was afraid of him.  Not screaming-crying-running away afraid but he would hide behind Duhdee or I whenever we saw him.  He would point at airplanes (real and imagined) in the sky to get Grampy to stop talking to him or looking at him.

It was frustrating because Grampy loves Monkey, he loved the idea of having one of his great-grandchildren living here with him.  We’ve explained Fragile X to Grampy and he’s read some of the books we have so he understands the root of it but it hasn’t stopped it from hurting him.  Over Christmas we saw a shift in Monkey’s attitude…one of my very favorite pictures ever is a picture of Grampy, Monkey and Munchkin watching a movie on Monkey’s DVD player.  It was the first time Monkey ever willing sat next to and even touched Grampy.  Gah, it still makes me tear up.

A couple weeks ago, Grampy had to spend some time in the hospital.  He has COPD and a lingering cold left him unable to breath comfortably.  He’s doing well now but it scared him.  It scared us.  Since Grampy has been home he’s needed a lot of help and Duhdee has been a peach.  He’s doing errands, driving Grampy around and even helping Grampy buy items over the internet.  This means that Duhdee has spent a lot of time trotting up and down the stairs to Grampy’s house and Monkey was just forced, at least at first, to tag along.  After a week or so he began protesting less when we needed him to go downstairs, he even started agreeing…”Sure!”

Yesterday, something amazing happened.  Grampy’s new furniture was delivered just before I needed to leave for work, we asked Monkey if he wanted to go down to see it and he said no, which is pretty much his go-to answer to everything these days. After all the furniture was in Monkey and I went downstairs to get Duhdee since I needed a ride to the train station.  Grampy was in a back room, at first, and when he came out Monkey said “Grampy!  Hi Grampy!  Hewwo!” happy as a clam.  Grampy was carrying a seriously “retro” lamp and Monkey took one look at it and said “Cool, Grampy!”  Ha!

Later, Duhdee and Monkey went to Trader Joe’s and Monkey was given a balloon.  He picked a blue one and brought it home.  As soon as they got home Monkey started saying “Grampy!  Grampy!  Grampy!”  Duhdee, smarty pants that he is, took advantage and asked Monkey if he wanted to go see Grampy.  “Sure!” and he marched down the stairs and into Grampy’s house with the balloon to show it off.  Just before bed they went down for another visit and Monkey let Grampy hug him!

Then, this morning, when we woke up we could hear Monkey playing with one of his toys and saying “Grampy” over and over and over.  (It’s so cute, I need to record it. ) We told him he could go visit after his shower and as soon as he was done he started with the Grampy chant again.  They had a nice visit this AM before Grampy and Duhdee set off for an appointment.  As the truck was pulling away, Monkey was in the window saying…”Bye Grampy!”

I’m not sure what has changed in Monkey’s head…but I like it.

This morning, for the very first time, I heard Monkey make up a rhyme completely out of the blue!  This is a very exciting step for him on his journey to literacy.  My desire for him to read and enjoy books is so strong.  The fear that he won’t ever be able to is one I struggle with a lot more than I expected so this warmed my heart like you wouldn’t believe.

Would you like to know what his first rhyme was???

He said, “Knock, smock.”

LMAO, and no, he didn’t actually do it.  He didn’t even try, lucky for him.

A couple days ago Monkey walked in on me while I was changing.  We are working on the whole concept of knocking on a door and waiting for permission to enter but so far we’ve only gotten as far as knocking on the door…mostly before he opens it but sometimes it’s still done while he’s opening it.  Anyway.

He walked in.  My back was facing the door so he saw my back and me fastening a certain undergarment.  Interesting.  He’d apparently not ever seen such a thing before and it left him a bit puzzled.  I looked over my shoulder and asked him to go out and close the door behind him and saw a very puzzled look on his face.  He stood for a moment longer and then said (complete with head cocked at a slight angle) ” ‘Mock?”

Ahahahaha *choke*  “No, it’s not a smock buddy.  Please go out and close the door.”   Hahahaha.  Very good generalizing skills though….both garments, both fasten in the back.  I don’t think I am going to teach him the proper term though, not yet.  The last thing I need is him asking for help with his bra before he plays at the water table at school.

Oh my goodness.  Monkey has suddenly become obsessed with letters!  He marches around the house spouting off various letters.  He identifies letters he sees around the house.  One of his favorite activities is telling us who each letter represents, example…A = “Audrey, Annie!”,  R=”Ryan!”, etc.  It’s crazy cool. 

Last night, Duhdee and Monkey sat on the floor of his room for nearly a half hour spelling out the names of his classmates on his Magna Doodle.  What is really super cool is that Monkey can orally spell the names of quite a few of them all by himself he just needs someone else to write the letters.  He’s still having a lot of trouble with the strength in his fingers so holding a pencil and making letters is really hard.

I’m thinking we need to add another accommodation to his IEP, I think he needs to learn keyboarding.  I don’t want to give up on writing but I think he would make super strides with letter recognition/identification, reading and communication in general if we formally introduced the idea of using a keyboard.  Has anyone else added this accommodation to your child’s IEP?  How do you phrase it and when did you add it?

it appears that a new integrated kindergarten classroom is not off the table.  There is one classroom included in the proposed budget for next year…one…for the entire city.  There will be 5 6 slots for kids on IEPs and they are intending to fill only 4 5 of them so that there will be space available if a child needs to drop back from a mainstreamed classroom.  Currently, Monkey is slated for one of the slots!   *squee!*

Since the budget still needs to get through the school committee I think I need to write some e-mails of support…