By Michelle Leigh
To the family just starting out with an apraxia diagnosis … breathe. I know it’s hard, I’ve been there. Try not to let your thoughts and fears consume you, try to remember that your child is still your child, just like before this label. Apraxia is a neurological motor planning disorder. A child knows exactly what they want to say but the breakdown between the brain and mouth prevents them from doing so.
Yes, the road is hard, but try to remember we all have different struggles in life and this is theirs. You are their guide and leader. You have officially been thrown into a position that no parenting book prepares you for and to which no one you know can relate.
I know, it’s overwhelming. Unfortunately I must prepare you, you will hear more ignorant, infuriating comments than I can even begin to list. Yet 99 percent of the people you know or will encounter have no idea what a day in your life looks or feels like. Try to be patient and know that through ignorance can come awareness.
Know that it’s okay to cry, it’s okay to be angry, exhausted, frustrated and display any other combination of emotions. It has been two years since our son Ryder’s diagnosis and there are days I want to scream and stomp my feet, but Ryder needs me to be on top of my game, even when I don’t feel that I have the strength. So, after my occasional pity party I pull it back together. He deserves that.
Last summer I attended the CASANA conference in San Antonio, Texas in hopes of educating myself on apraxia and to connect with other people whose children are on a similar path as Ryder. My husband insisted that I take a class entitled “Your Oxygen Mask First,” so I did. The speaker began by saying, “Think of your life like a plane. You must put on your oxygen mask first. If you do not take care of yourself, you will not be able to take care of your child.” The moral of the story — you will drain yourself and run out of oxygen. It hit me like a ton of bricks. I didn’t realize how drained I was – mentally, emotionally, physically.
After the CASANA conference, I returned to Jacksonville knowing I needed a break. I had never left my son before; we do not have babysitters and he comes along everywhere I go. I perused the concert calendars and immediately booked a flight and took off to Colorado to see one of my favorite bands at Red Rocks. Financially it was not an easy decision, but mentally, it had to be done. I spent about three days decompressing while surrounded with people that provided me strength when I had none. Do not make the same mistake as I made. Don’t wait until you are burned out. Breathe. Find your source of strength.
This is a long evolving road that requires the best of you. Some people find strength in a supportive friend or an online support group (Apraxia Jax on Facebook) and some turn to their faith. Your world is not ending, only changing.
As alone as you may feel, try to think globally on the next sleepless night. “Apraxia-Kids – Every Child Deserves A Voice” on Facebook is my second family. At 11 p.m. or 3 a.m. someone is there who understands exactly what you and I are going through.
Personally, I find strength in trying to make a difference for all of our children, so I started a walk for children with apraxia. All of the money raised benefits CASANA, the only national nonprofit dedicated to giving every child a voice.
The second annual First Coast Walk for Apraxia will take place on Nov. 19 at The Bolles School on San Jose Boulevard and registration begins at 8:30 a.m. Visit our walk page, http://casana.apraxia-kids.org/jacksonvillewalk or email me at firstname.lastname@example.org for more information.
Visit www.apraxiamommabear.com to learn more about apraxia or to follow our journey.
Photo courtesy Michelle Leigh
Ryder, “being Ryder.”