Erik Quinn: The Heart of a Family: Hypergraphia

Friday, August 04, 2006

Hypergraphia

Thanks for your thoughts, prayers, and e-mails regarding Erik's therapy this week. He walked from the car all the way to his classroom for the first time Thursday (we had to stop and pay homage to the short, yellow bus, of course). A girl in the hallway cheered him on as he walked up the ramp but eventually ran out of patience with our snail's pace, so she took his other hand, and all three of us inched up the hallway and into the classroom. I told Brian that things have changed dramatically for me since I entered that classroom for the first time. I recently tried to explain to Bev, our early intervention specialist, why going there is upsetting to me, but I had trouble expressing my thoughts in words. First of all, that building houses a horrible memory for me. It is the place where our fears were confirmed that Erik was severely developmentally delayed before we even knew about WS. Of course, I now see the facility as a place full of kind people who care about my son and want to treat what he has in order to help him achieve independence. We will use this facility for probably three more years, and it will be a big part of our lives in that time. I am incredibly thankful for the opportunity to use it. However, I will never forget that awful day of testing. One of the therapists said to us that day, "I hope what we say to you today won't be completely devastating to you." That was the exact moment I realized our lives were going to change forever. It is not the sort of place I find cheerful or uplifting at all.

Now that I have been in and out of that building a few times, I have grown to adore the kids there, even though I am not a real kid person to begin with. Maybe once I get attached to a child, I love them more intensely because of that. There is one little boy who did a lot of ear-splitting screeching at the beginning of our first session there. Like all of the other kids, I have seen him improve greatly over the past few weeks. Unfortunately, Thursday was an off day for him, and he was screaming and enthusiastically hucking toys (my reflexes are pretty quick, and I successfully avoided getting smacked in the side of the head more than once), which, for lack of a better term, freaked Erik out this week. Erik is in a small group of kids who comes weekly instead of monthly, so there are different kids there every week. This group was much more noisy than usual, and Erik went into shut down mode. I hate that. I left him there to pick up work at the medical center, and when I came back, he was sort of slumped over in the sandbox outside. The therapist working with him said he had been unusually unresponsive and just didn't seem to be having a good day. When the kids went inside for snack time and closing circle, I was provided with some instructions on exercises to do with Erik's face to help improve his muscle tone. Because his tone is mildly compromised, his mouth doesn't close all of the time, resulting in a lot of drooling. I was also given a Nuk brush, which was something I had never seen before. I couldn't decide if it looked like it came from a dentist's office or an adult bookstore. It is a spiky, cylindrical rubber brush to stimulate Erik's mouth and get him to chomp down more aggressively. I tried the exercises yesterday but found it only made Erik gag. He has a couple of very sensitive spots in his mouth when I brush his teeth, and I think I hit one of them, which triggered the gag response every time I tried to continue, no matter where I placed the brush. I decided that I would try again but would stop for the time being. I consulted the instruction sheet and saw that it listed other things I can do, such as providing foods that are more difficult to chew, including raisins and gummy bears, and having him blow bubbles. After making him gag, I decided blowing bubbles would be a good thing for us to do, but he wasn't interested in blowing them much after the last exercise (he wasn't certain what I was going to do next and protected his face like Mike Tyson in the middle of a fight).

I called Aspen for the first time yesterday. She is in our group of WS moms and lives in New Mexico. You might be familiar with her comments on this blog. She has been in Washington, DC helping her sister move there this week. Lisa, another wonderful and generous WS mom in Maryland, met Aspen for the first time there and has been helping them with the move. When I called Aspen yesterday, she and Lisa were standing in the National Cathedral on a sightseeing trip. Talk about an echo! I told her that I understood flying buttresses wreaked havoc on cell phone reception, and she called me back once they got to the car. It would be wonderful to get her son Daven and Erik together with a big box full of toys with wheels, as they share the same obsession. I wanted so much to be in the car with both of them on their adventure, but it was very good to talk to her and hear Lisa in the background. It is amazing how you can love someone you have never met.

My WSA DVDs arrived yesterday. We won't watch them right away, as we are headed to Brian's parents' house for a family picnic today. I hope to get some good pictures this weekend of Erik being the life of the party (hopefully). Ciao.

3 Comments:

Blogger Kerry said...

Thanks for the tips on the Nuk brush. I will check it out with her next week.

I hate to see when your child is not having a good day, and it must have been hard for you to see Erik not having fun. You just want to jump in and make everything all right.

I would love to jump in on that trip too! It's so funny to have these links with people you've never met. Ah... the wonderful world of the internet!

10:15 PM  
Blogger Teresa & Shawn said...

I am sorry that Erik had an off day at therapy. Makes your heart ache for your child to see them like that. Just remember all the success Erik has had lately. He is allowed to have an off day, too! I love your stories of the "trouble" he gets into. Clare is very slowly entering that phase, and I never thought I would be so happy to see that!

I am so jealous that Lisa and Aspen got to meet! Someday we will all meet!

12:23 PM  
Blogger Lisa R said...

I guess we all have good days and bad days even kid :) Just wish they could keep there bad days to the ones where nothing is going on.
I hope I get to meet you someday too, it would be so fun :)

6:10 AM  

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