The month of May represents Apraxia Awareness month, it also coincides with the month my son was diagnosed 5 years ago. Some days that feels like a lifetime ago, some it feels like yesterday. I have always tried to be very honest about my struggles coping with my sons diagnosis’s and those that have since followed – dyspraxia, sensory processing disorder (SPD), dyslexia, dysgraphia, dyscalculia and ADHD. Even writing that overwhelms me, you’d think I would be better at absorbing all of it. I refer to Apraxia as my onion. We pull back the layers, they burn, it hurts, I cry but we keep going and peeling them away. Apraxia managed to do something that very few things have, that is paralyze me with fear and emotion. I will never forget my desperation and subsequent anxiety. Generally speaking, I am a “fixer” or an actions person but I couldn’t and still cannot fix this for my son. I can only provide him with the best team and support to help him and continue to encourage him each step of the way.
Read more: My Secret to Surving an Apraxia Diagnosis: A Parents Perspective
Lately, it feels as if the world is closing in around me. Things seem to be coming in all directions and every time I come up for air I am pushed back under. I do not even talk about most things anymore because it’s simply too much to process. I sit alone with my thoughts waiting for someone to see ME. The real me, the sensitive me, the vulnerable me, the incredibly misunderstood – me. I tend to keep everything inside to the point of becoming physically ill as soon as I try to relax. It is not intentional, or conscious, or healthy, I know.
I recently attended my 4th Apraxia Kids Conference (Formerly CASANA) this year and it was obvious to me that somethings have become clearer. I realized that apraxia isn’t something my son “has” it is now part of who I am as well. To be his best advocate; I live it, I breath it, it has redefined my priorities and shaped my life in a way I would have never imagined possible. It has forced me to look at those around me and make some tough choices, it has opened my eyes wider than I ever knew possible.
Read more: The Passing of The Torch: Apraxia Conference 2018
People often ask me to describe what I’ve learned as the parent of a child with apraxia. It isn’t always easy to put into words. In fact, lately I have been struggling on this journey—and it is a journey, with highs so high you’ll remember them forever and lows so low you’ll curse the word apraxia and the first person who ever uttered it to you. When our son was first diagnosed, everything I heard, everything I read scared me to death. Now I have a bit more perspective and experience. Here are some of the things I’ve learned:
I used to wonder which came first—my anxiety or the glaringly obvious fact that my son has special needs. After some reflection, it seems that I have always had anxiety. It manifested itself throughout a rather difficult childhood, but I learned to manage it. In retrospect, I have used my anxiety to “fix” things. Life could not make me anxious if my type A personality took over and solved things before they became an issue.
Read more: The Struggle Within: Juggling Anxiety and Special Needs Parenting
I have a secret … On the surface I am a wife, a mother of two, and a full-time professional in a fairly high-stress career. I am a college graduate; a home-owning, tax-paying citizen. I do all the “typical” mom things—shuttle kids to and fro, cook dinner, pay bills, clean the house—really exciting stuff, right? Then there are the not-so-typical things. I have been a mom since I gave birth to my first child at age 19. Having my daughter when I was still young made me grow up quickly. My second child, a son who is now age 5, has global apraxia and sensory processing disorder. I spend a good amount of time researching therapies, organizing our local apraxia walk, trying to build a support system for families, and even maintaining a website to help fellow special needs families. My day-to-day life can be overwhelming; having a child with special needs can make you feel as if you are always carrying the weight of the world on your shoulders. There are doctor’s appointments, local and out-of-state therapies, Individualized Education Program meetings, and learning strategies implemented at home. However, I am type A in almost all aspects of my life. I try to give 100 percent to anything I do and refuse to do anything half-assed. Unfortunately, I tend to forget about myself while taking care of everyone else. That frequently leaves me feeling burnt out. So my secret…? I am an addict.
Read more: Confessions of a Music Loving Special Needs Momma
Every day—Literally. Every. Single. Day—starts at 1000 mph and does not stop. A dear friend of mine once referred to our son, Ryder, as “WAO” wide ass open (side note – we live in the South), because he does not stop or slow down. The only time he stops is when he takes a few brief moments to eat. He runs almost everywhere he goes, requires fairly constant supervision and has a very poor sense of fear. Ryder isn’t just an overly active boy. The reality is that, Ryder has SPD (sensory processing disorder).
Read more: The Family Struggle: Global Apraxia and Sensory Processing
It is critical, in my opinion, to setup a strong, consistent team for your child. Regardless if they receive public or private services (or both) and if they attend one type of therapy or several. Everyone should be in communication and speaking with one another in order to provide the best therapy and minimize any gaps in your child’s development. It is important that each therapist and parent / caregiver fulfill their role to achieve measureable result. I will talk more about how to know when to “break up” with your SLP or OT below.
Read more: Forming your child’s TEAM – the recipe for success!
I travel fairly regularly and my son goes just about everywhere I do. I have learned several things along the way that help make everyone’s day (especially mine) significantly better!
First, contact TSA Passenger Support according to their website. "TSA Cares is a helpline that provides travelers with disabilities, medical conditions and other special circumstances additional assistance during the security screening process. Call 72 hours prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.”
Our story began like many others. After an uneventful pregnancy and a relatively easy labor, I gave birth to a healthy 8 lb. 9 oz. boy on May 20, 2011. Our sweet Ryder progressed as all the charts said he should, met all the milestones, gained weight and height toward the top of the charts, and started walking at nine months. At around ten months, he began to say “cat” very clearly; since we have two cats, it was a natural first word for him. We were always complimented on what a quiet baby he was. In hindsight, we realized that he was very quiet, never really cooing or babbling as a baby. When Ryder was 14 months old, we moved from Boulder, Colorado to Jacksonville, Florida.
Read more: At a Loss for Words: Helping Our Son Find His Voice
To the family just starting out with an apraxia diagnosis … breathe. I know it’s hard, because I’ve been there. Try not to let your thoughts and fears consume you; remember that your child is still your child, despite the diagnosis. Many people are unaware of apraxia, which is a neurological motor planning disorder. A child with apraxia knows exactly what he wants to say, but the breakdown between the brain and the mouth prevents him from doing so. It can be very frustrating for the children and families of those struggling with this rare speech disorder.
