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To the Family Just Starting Out With an Apraxia Diagnosis

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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 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 speech disorder.

As your children’s guide and leader, you’ve been thrown into a position for which no parenting book prepares you and to which no one you know can relate. Information and therapy names, appointments, and evaluations are now barraging you faster than you can digest relevant information. I know. It feels overwhelming.

Unfortunately, you will be subjected to ignorant, infuriating, hurtful comments, yet most people are too oblivious to realize how they have made you feel. Sometimes those comments will come from family, sometimes from friends, and sometimes from complete strangers. Although 99% of the people you encounter have no idea what a day in your life looks or feels like, most won’t hesitate to voice their opinions. Try to be patient and know that awareness can emerge from ignorance. Help others understand — not just for your child but also for every child. We’re all in this together.

It’s OK to cry or to be angry, exhausted, and frustrated. It has been almost two years since our son Ryder’s diagnosis, yet some days I want to scream, stomp my feet, and yell, “It is not fair!” No, it’s not fair, but Ryder needs me to be on top of my game, even when I don’t feel I have the strength. So after my occasional pity party, I pull it together again. He deserves that. I return to my frequent talks with his SLP, OT and ESE. I rally his team to do their best, and I do mine. Remember that children with apraxia need you to be strong, to fight, to advocate. For our children to succeed, we all have to work together.

I find confidence and strength in gaining knowledge and trying to make a difference in Ryder’s world. So I read and study every available article — and that’s how I found CASANA. For the first time, I felt someone understood how I was feeling and offered a wealth of information to help me anticipate the road ahead. Last summer I attended the CASANA conference in San Antonio, Texas, hoping to educate myself about apraxia and connect with the hundreds of others whose children are on a path similar to Ryder’s. Looking over the class options with me, my husband said, “No matter what, I want you to take this class, ‘Your Oxygen Mask First.’” I wasn’t thrilled by the idea, and I wanted to take another course scheduled at the same time, but he told me I needed it. It felt selfish attending a conference to learn about ways of helping my son but instead listening to someone talk about me — but I grudgingly selected the class.

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 is if you don’t take care of yourself, you will drain yourself and run out of oxygen. It hit me like a ton of bricks. I hadn’t realized how drained I was mentally, emotionally, and physically. I had nothing left. I was almost in tears listening to this woman tell me I had to put myself first. I couldn’t remember the last time I had slept through the night, gone a day without spending hours looking for information online, attended a yoga class (there are probably cobwebs on my mat, and Lord knows my yoga pants are for grocery shopping at this point), or had coffee with friends. Those days seemed so far gone, like another lifetime. I had spent every day consumed with worry, fear, anxiety, and guilt about something I could not control. Was I neglecting the needs of my daughter or my husband? Was I making the best choice about Ryder’s therapy? His school?

I constantly feel guilty spending any money on myself or on things that are not necessities. The guilt is palpable. It stays in my throat and in my head, controlling everything I do. I’d previously had no idea how hard the ebb and flow of apraxia would be for my family and me. After the CASANA conference, I returned to Jacksonville and told my husband, “I must do something for myself. I officially need a break, a minute to breathe.” I had never previously left Ryder. We rarely go out, we do not have babysitters, and he comes along everywhere I go. We all have different experiences that truly soothe our souls. For me, it’s live music. So I perused the concert calendars, and then I booked a flight to Colorado to see one of my favorite bands at Red Rocks. Financially it was not an easy decision, but mentally, I had to do it.

In Colorado I spent three days decompressing while surrounded with people who gave me strength when I had none. I allowed myself to be vulnerable, stay up late with my friends, and talk honestly. We are fortunate to have a few true friends who are always there for us, who love our children as we do, and whose presence lightens our mental load and helps us recharge. I needed them so much more than I realized, and I’m so thankful my husband recognized what I was unable to see.

Do not make the same mistake I made. Don’t wait until you are burned out. Instead, reach out, ask for help, and take some time to do what you love. Breathe. Find your source of strength. You will need it. This long, evolving road will require the best of you. Some people find strength in a supportive friend or an online support group, and some turn to their faith. There is no right or wrong answer, but know you need support. Sadly, you will lose a few friends and maybe some family members in the process. But you will gain support and bond with people who will share your path and know your fears. They will understand why you sometimes avoid social situations. Take comfort in knowing your child will be OK. With frequent speech therapy, he can make huge gains. Your world is not ending; it’s only changing. As alone as you may feel, try to think globally on the next sleepless night, whether facing your fears before an IEP, feeling anxiety about the future, or feeling exhausted from fighting the insurance company.

Apraxia-Kids—Every Child Deserves A Voice on Facebook is my second family. At 11 p.m. or 3 a.m., someone who understands exactly what you and I are going through is available. I want your child to succeed as much as I want this for our son. Sometimes it really does take a village to raise a child. Personally, I find strength in trying to make a difference for all our children. To help our community and our family, I started a walk for children with apraxia. I have gained great strength from speaking with other parents, helping families navigate our convoluted system, and watching my son make friends. All the money we raise from the walk benefits CASANA, the only national nonprofit dedicated to giving every child a voice. It is used to provide iPads as communication devices for children with apraxia, speech therapy grants, parent and speech pathology education, as well as research, since there is currently no known cause for most cases of apraxia.

Follow this journey on Apraxia Momma Bear.

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Thinkstock photo by Katarzyna Bialasiewicz

Originally published: November 17, 2016
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