Tuesday, September 2, 2014

My Head Not Work Right

There are not a lot of days where I feel like I have it all completely together, I'm beginning to think there is a reason.  Each time I have one of these days, something happens, something catches me off guard and crushes me.  Today was no exception.

It all started out really well, I was even up early enough for a long shower before my day started.  The kids had great days at school, I had a great day at work, the roast & potatoes that simmered all day in the crock pot were cooked to perfection for supper, dishes were loaded in the dishwasher, homework was done and I got Allison to cheer-leading practice on time. I was feeling rather confident and proud of myself after returning home from Allison's practice. Allison settled in to her room to practice her flute and Parker and I settled onto the couch to watch the Cubs game. "I've got this, I can totally rock this single mom thing" I thought to myself as Parker turned on his iPad to keep tabs on the scores of all the games being played tonight while watching his team "spank the Brewers".

While the sounds of Allison's flute filtered up the stairs from her room below I was drifting off in my mind about how nice it was to just sit for awhile, especially with Parker by my side on the couch (we usually sit in different places) Parker leaned over and nudged me, "Mom...?"

"Yeah buddy, what's up?"
"I can't find it"
"You can't find what?"
"I can't remember"

"Sometimes I can't remember things too" I reassured him.  "Sometimes I just forget"  He was frantically looking through his iPad.  "I can't find it."  He repeated.  "It's ok, sweetheart, do you know who is pitching tonight?"  Redirection is most often my saving grace but he wasn't interested.  He handed me his iPad, "Find it, please" he requested with great big blue tearful eyes.  "Absolutely, I will try. Hmmmm... I wonder how Tom (the cat on his iPad) is doing?"  Parker, "NO, NOT Tom. That's NOT IT".

He was clearly frustrated.  I went back to reassuring and redirecting.... "Sometimes I forget things.  Sometimes I just can't remember. That is frustrating.  Right now I can't remember who is pitching for the Cubs tonight.  I will look at the score instead.  Oh look, they are winning, Go Cubs!!"

In the moment of silence that followed, I thought I had won. Yet, I had not.  As he fumbled to find words I stuck with my redirection hopes, "Do you know who is pitching tonight?  Is it Felix?"  Complete and utter backfire.  Frustration filled his face, he grabbed his iPad from me and as he started flipping through it said," That is NOT IT. NOT baseball.  I can't find it.  Starts with ... "P"..."  I quickly jumped in with every possible app related "P" word I could think of, his frustration grew... "No W" he said and before I could say "Ok, let me look" he sadly says "No, I don't know. I can't remember."

"Let's try a big breath, ready?  Breeeeaaaattthhhhheeeee and blow it out"  as he did it with me, my confidence returned.  "I could use a hug" I said hoping he would continue to do as I did.  Too soon.  (hanging head, I knew it too) Too soon.  He slammed his iPad back onto my lap.  His frustration was taking over.

"I can't remember" he said, so frustrated the tears began to well in those big blue eyes again.  My heart sank for him.  I said, "Let's think together!  We can do this, we will get it!"  That's when it happened.  The son I had waited 10 years to have a conversation with, 10 years to really talk... 5 years later at 15 said those words that confirmed what I had wondered all along...

"I can't. My head not work right."

As I fought back my now welling tears I said, "You're head works great! Sometimes we just forget!"

"Stupid head." he said, "Stupid head not work right. I not remember. Stu..."

"Your head is very smart" I said cutting him off.  "Very smart, Parker.  Your head is very smart. YOU are very smart.  It's ok to forget.  Smart people forget all the time."

I was completely caught off guard by his words, my heart was simply broken.  Broken for him. Broken that I know he realizes how hard things are for him compared to others. Heartbroken that he feels this way. Heartbroken that I passed the gene to him that has left his "head broken" and I can't do anything to fix it for him.  It was a defining moment where time stood still.  A moment quickly broken by his frustration.

In the blink of an eye and honestly faster than I could even attempt to describe his frustration won. He grabbed my arm and as he pulled it close he leaned forward mouth wide open and started to bite down.  "Oh no you don't" I told him as I began to pull my arm away. "I CAN'T REMEMBER. HEAD NOT WORK RIGHT" he screamed at me as I pulled my arm away, luckily he let go barely leaving a mark, other days I have not been as lucky. It was a sign he still had some control.

I stood up, iPad in hand and followed through with the punishment we have for biting even though I knew the consequences could be hard on us both.  "No biting, iPad time out." I said while walking to the kitchen to put it in it's timeout place.  He followed, clearly angry, still stuck on not being able to remember.  As I put the iPad down I turned to him unsure of his next move. "I could use a hug" I quietly told him wanting to keep control of the situation. "No hugs" he replied with tears streaming down his face.  "Ok" I respectfully said in a quiet voice, "no hugs".

As I walked away, from the corner of my eye, I saw him raise his hands to his face. His body tensed up as he began to hit his hands to his face.  Frustration had won.  I braced myself knowing he would likely come full force at me with a swinging fist and calmly said to him, "Breathe in" as I took a big breath "blow it out" and exhaled determined not to let the aggression within him win.  Standing in place he dropped his hands, his body still clearly very tense I stepped forward closer to him and said, "I really need a hug, can you please give me a hug?"  As he began to step forward towards me I was unsure what to expect, I tried to relax my tense body so he wouldn't feel my uncertainty as I waited to see if he would actually hug me or not.  I knew the chances of him biting my shoulder, pulling my hair or wrapping his arms around me and hitting my back were just as equal as the chances he would hug me.  It was a flip of the coin I had to take a chance on.

As he leaned in with open arms I held my breath waiting to see what side of the coin would land when I heard his shaky voice say "I can't remember... I not remember... my head not work right." as tears began to fall down his face and he gripped me with the amazing hugs he gives I knew we were going to be ok.  No meltdown this time, just love.

At first I said nothing.  I couldn't.  My heart hurt entirely too much.  I simply hugged him and cried with him.

He broke the silence saying "Stupid head."  I stepped back from him, looked at him and said, "Hey now. Enough of that. That is not true. You are the smartest boy I know.  It's ok to forget.  You can forget and still have a smart head.  It's ok.  I promise.  It's ok.  YOU are so smart."  I rubbed the hair on his head resting my hand on his cheek that was wet from his tears and said, "I mean it.  You're head does work. It works good. You have the most perfect head ever."  then leaned in and kissed his cheek momentarily forgetting that is not allowed.  He quickly wiped away my kiss from his cheek reminding me he hates kisses before leaning close to wipe his face and now snotty nose on my shoulder.

"I needed to wash this shirt anyway" I told him with a grin.  His smile returned.  Our cycle was broken.  He was ready to move on.

As we returned to the couch to watch the Cubs game and he began to fill me in on who was pitching, I could hear the sounds of Allison's flute fill the room again from where she was practicing downstairs.  My mind drifted off as he continued to cheer for his team, this time with a question answered.

"Does Parker realize he is different?"

Yes.  He does.  He knows his head does not work like everyone else's.  A tear slowly made it's way down my face as I realized the bubble I have tried so hard to keep him in has been popped.  I had hoped and prayed he would never realize how much more he struggles than his typical peers.  That his laughter would always win over friends and he would be seen for who he is in his heart, not for what he's unable to express. While I believe many of his friends do see this, I also know the word "stupid" didn't come from home.  "Stupid head" came pieced together from somewhere, my hope as I lay down my head tonight is that it came from TV and not something he's heard or been called.

My mind focused back on the incredible sounds of the flute coming from Allison's room, calming for a pause in time before wondering... does she realize it too?





*For those new to my blog, Parker and Allison were both born with a genetic condition called Fragile X Syndrome as a result from a gene mutation that I unknowingly carried and  passed to them.  Please take time to learn more about Fragile X Syndrome, the leading cause of inherited mental impairment and the leading known genetic cause of Autism at www.fragilex.org 


2 comments:

  1. My heart hurts so much right now for you and your children. I, too, have a son and a daughter (both now in their 20s) with Fragile X Syndrome.

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