Friday, February 8, 2013

Ho, Ho, Ho and Misteltoe


(Back when Jake was first diagnosed with an Autistic Spectrum Disorder I needed to write but I wasn't ready to share.  So I wrote a number of blog entries for that day in the future when I would be ready.  I'm going to start with this one.  It was from the first time I had to acknowledge my son's autism).

The title has nothing to do with this actual entry.  Rather that is a line from the Charlie Brown movie that was playing in the back of the car today.  Jake loves Charlie Brown . . . he went through such a Charlie Brown phase that he called everyone “Sir” (a la Marcy) and went around constantly asking people “where’s the pumpkin pie, where’s the mashed potatoes “ . . . caused a lot of confusion to those who weren’t in the know.
Today was Ainsley’s 5th birthday and we celebrated it Pinehurst style with a to-do at the bowling alley.  Ever since I mentioned that this was how we would party on A’s big day Jake has asked me if he would be invited.  He was so excited, so looking forward to it.  And in typical style once the party arrived he was a mess.  Today was the first time I actually used the word autism to describe my son – and it hurt so badly I wanted to curl up in a ball and sob despite the fact that I was putting candles on a cake in preparation to serenade my sweet little girl.  I didn’t use the word flippantly – I used it because Jake was being, well, Jake and I didn’t know what to do with him.  He didn’t want to bowl, he sulked around and hid from the other kids, he started to cry and then to whine that he just wanted to go home – begging me to just let him go home.  My dad tried to pull him aside to talk to him and he ran from my dad.  In short, I didn’t know what to do for or with Jake and I was in the midst of trying to be a hostess to our guests and mom to the guest of honor . . .
I was so grateful my parents were here.  My dad finally was able to get Jake to go to the arcade with him where they played games for a bit.  But as luck would have it  we started Jake back on his Ritalin today (after giving him a break over the Christmas holiday) and so he had no appetite.   The popcorn, soda and cake held no appeal for him.  My mom looked over at me, bewildered as I felt, and asked if this (meaning his behavior, not lack of appetite) was because of the medicine.  I looked back at her and matter-of-factly said “no, this is because of the autism” and then we both began to cry.  I barely pulled it together as the candles were glowing and the wax began to run and pool on the cake’s shining buttercream frosting and sang out as heartily as I could “Happy birthday to you, happy birthday to you, happy birthday dear Ainsley, happy birthday to you”. 

4 comments:

Red said...

I so wish that we lived closer so that I could have walked with you more side by side during this time.

Desire Osmam said...

This day is burned into my brain with a very other defining times.

Megan said...

We stopped entertaining for a long time because "Caroline's" behavior was so unpredicaable. Now we can actually have people over. I threw a baby shower once when she was really not doing well and I was SO stressed out and didn't do that again for a long, long time.

Allie said...

My heart hurts reading this post. I love you and Jake very much. Hugs.