Different Part 1

Getting fitted for new elbow splints
Getting fitted for new elbow splints

On Monday, while getting dressed, Aleck asked me to do this thing he likes where I puff my cheeks out and then smash them with my hands ala John Belushi in Animal House.  After watching me do it he went to reach up to his face to do it himself and started to scream.  He can’t come close to reaching his face when he’s lying down and the frustration got the better of him as he started to cry.  I looked at those tears and knew it was time to start talking about this.  For months my mom has been saying that he has to know something is different about him, especially since he’s been in preschool surrounded by able bodied kids his own age.  After all, he’s a very observant little boy, who was quick to point out on Monday morning that Daddy was complaining about how warm and steamy it was in the bathroom.  We don’t talk about complaining in our house so we were both pretty shocked that not only did he say it, he used it correctly in this context. Truly nothing gets by him.  I guess I’m only surprised that we haven’t talked about this earlier.

A few months ago, as I was putting him to bed, Aleck started asking me about my body and how my body moves, body part by body part.  He started with my mouth, then my nose, went onto my legs, asked about my ears, and finished with the elbows.  At that moment I knew he sensed something was up but I was waiting for him to open the door.  So on Monday morning I opened it myself watching his little face turn red with frustration.  I simply said, “Aleck, do you want to talk about it?”  To which he responded, “Yes, let’s talk about it, please mommy.”  But where do you begin this conversation at 7am on a Monday morning when I’m heading to an office and he’s heading out the door for preschool and we still have an entire morning of routines to get through in order to get to our required Monday morning destinations?

I guess you start simply, at the beginning, and I explained how he got stuck in a funny position in mommy’s tummy when he was a baby.  And because of that he has trouble moving parts of his body like his knees and his elbows.  To this he proudly exclaimed, “But Mommy, I can bend my knees, see,” and displayed the barely 90 degree knee flexion he can get with a huge smile on his face. I asked him if he noticed he was different from the other kids at preschool and he said, “Yeah, I’m different.”  Then with a huge smile on my face I bent down and kissed him all over his adorable little face.  He didn’t look sad, but he said it with a heavy sigh.  After that we talked a bit about the new elbow splints he recently got, the ones he’s now wearing during his sippy cups of milk at home, and how they are supposed to help him bend his elbows so that it’ll be easier for him to get his hands to his face.  I also explained that if these don’t work we’ll probably try serial casting in the fall.  This prompted a big protest on his part.  He didn’t want them with his “cereal”! I explained the different words and he settled into my lap for his sippy, letting me strap on his elbow splints without any protesting or complaining.

Thanks Sharon!
Taken at the Mother’s Day brunch at JCYS. Photo © Sharon Jackson

8 Replies to “Different Part 1”

  1. You guys HAVE to come to an AMCSI Conference! Then Aleck can see other kiddos who look just like him!!!! It truly is an amazing experience year after year. I’d be happy to bring Jake over to see Aleck again…anytime!!!

  2. I just started reading your blog yesterday, Craig told me about it.
    How moving and touching these stories are. I love your writing style .
    Aleck is really blessed to have you and Craig for parents.
    Thanks for using the photo you two look so great together.

  3. Thanks Sharon. It’s been quite the labor of love. I am so happy to have a current picture of me and Aleck. Almost impossible in my world if it wasn’t for you.

  4. Hey Betsy,
    I think we are going to wait one more year for the conference. We just need to get on our feet financially before we can commit to that, plus we’re now starting to save up for a trip to Philly since it’s time we sought out some second opinions. Sending much love to you and the family. I hope you can get Jake the jaw surgery he needs!!!

  5. I am so glad to hear you are starting the conversation early. One of former clients still have not told their son he has autism and he is 11. He must know he is different, but all he can do is wonder why. You guys rule!

  6. Thanks Heather. We just knew he knew and wanted to start the process. We are so scared of watching that sparkle in his eyes go out and hopefully if he can embrace it all early on he’ll outshine us all.

What do you think?