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Ryder and I awareness 2

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:

Trying to control anxiety BLOG TITLE

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.

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.

Let me start by saying I do not expect to live by different rules because my family was dealt a different hand. I do not expect nor want to be coddled because my day may seem a little bit harder than others. With that being said, when someone says they will be somewhere, help with something, support an awareness event - I expect just that.

Even though people may not recognize it, special needs parents are burnt out.

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).

My 5 year old son struggles with apraxia, globally, meaning it affects the sequencing and motor planning of everything he does. From speaking to running, reading and writing, Ryder has to work harder than most of his peers, even with several hours of therapy a week. The smallest skill that the average person takes for granted, such as throwing a ball or writing his name, requires tremendous thought, planning and sequencing in order to execute the individual components of the task.
 
“Childhood apraxia of speech (CAS) is a neurological speech disorder in which children have difficulty planning and programing complex movement sequences underlying speech production.” (CASANA “What is CAS?”)  Individuals with apraxia receive a diagnosis which may rate their deficits from mild to severe based upon the intensity of the difficulties exhibited in the areas of planning, production, and intelligibility of speech or lack thereof. Global apraxia is a term used to describe difficulty in planning the movement of the limbs of the body when a child also has verbal apraxia.
 
I am admittedly a research-aholic. Upon learning Ryder has global apraxia, I began my quest to develop a breadth and depth of understanding of the impact this would likely have on him. During one of my countless, late nights of googling sessions I thought, there must be an adult out there who has overcome apraxia. I happened upon Gage Golightly, a young adult with global apraxia. She is an incredibly accomplished actress, which is a remarkable career choice, given her diagnosis.
 

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.

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.

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.