Messy Layer Cake

Recently, I posted about my experience when E was initially diagnosed and how that felt for me. A lot of time has passed since then and I thought we were finally in a place where we were getting a handle on things. Of course, the minute I let myself get comfortable something new comes into play.

When E was very small, he cried a lot. At two he would stand on his head in the crib, walking and dropping to floor, then came the body stiffening, at three he started to walk and his right leg would just stop functioning. The neurologist initially thought it was just a motor function that affected mostly girls and only 1% of boys. Then he developed this neck twitch with mouth wide open. Watching these evolving movements is hard. In my gut, I knew there was still more I needed to know in order to help him. Back we went to the Pediatric Neurologist to find out more. After an EKG and some questionnaires we had our answer, Tourette Syndrome a.k.a. Tic Disorder. In this moment my thoughts went silent, my heart wept, I felt my nerves tremble while my body felt stoic, motionless.  The doctor said “Mrs. Jimenez?” And I was back, with a multitude of questions for her.

This was his missing piece, this was the part why we couldn’t understand what was happening to him. Why we always felt he couldn’t control certain things even when we kept telling him things like “What’s wrong with your throat? Why are you making that sound?” Or “stop slamming your body like that! Don’t do that it’s annoying.” Then my husband and I felt this tremendous amount of guilt for being so hard on him. For pushing ABA on him when it was clearly having an adverse reaction to his Tourette’s. That telling him repeatedly to stop was counterproductive likely only stressing him out more escalating situations.  I knew we needed a new game plan but how could I get it. E is a very complicated little boy and this just added to things.

Often, I have described E to people as a fabulously, smart, loving little boy who has a lot going on. He is a messy layer cake and in between all the sweet layers are cake batters that just went wrong. The sweetness can mask some of the distasteful layers. Now when I present his medical, I start off with E is a beautiful little boy who has Autism Spectrum Disorder, Sensory Processing Disorder with Tourette Syndrome (Motor tics) and Hyperactivity.

Since his new diagnosis, I once again have gone down the rabbit hole in search of as much information as I could find. How could I help him live with this, potentially, all his life? What things does E need in place in order to be successful in life? I called for an IEP meeting to inform the school of his additional diagnosis, make sure they understood that the behaviors were likely related to the Tourette’s and sought the school districts assistance in protecting my son while requesting help from them. I was surprised to learn that the district did not have a Cognitive Behavior Intervention Therapist for Tic Disorder considering the Center for Disease Control and Prevention (CDC) 1 in 162 school-aged children have Tourette Syndrome. According to the Tourette Association of America more that 10,800 South Carolina children have Tourette Syndrome or a similar tic disorder.that Tourette’s occurs in 1 in 160 school aged children and is 3-4 times more common in boys than in girls.  Since the school may not have the resources to hire an independent consultant, I have to push for education of the existing staff.  I have to rely on outside private care and strong support from the school to make a plan that can help E succeed, overcome and thrive.

My son is a lot of things but the best parts of him make all we go through worth it. The love he shows us daily is worth us putting up with a lifetime of tics. So we dust our shoulders off and wipe away a few tears. It may gets messy, it may even get worse before it gets better but we will ensure that he gets the help he needs.

We are blessed for sure!

With love and dedication anything is possible!