Our Journey with Apraxia: What I Have Learned

 

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:

 
1. There will be setbacks. Your child will “lose” words … words that you worked on for months, if not years, to gain. It is unbelievably defeating. However, please know that it is okay. Those words will come back. It may take a little while, but they will. Also, as they develop language, many children will go through dysfluency, which sounds similar to stuttering. It is incredibly frustrating for the child and heartbreaking for the parent. This was the source of my dawning comprehension that things wouldn’t always move in an upward direction.
2. Patience is important. As frustrated as you may become with your child’s progress, therapists, the school system, and your family, try to remember to have patience. Your child needs you to be patient and determined. It can be very difficult, but I have found it to be absolutely necessary. Patience will give you clarity and the ability to address each situation in such a way that you will hopefully have a more positive outcome.
3. Don’t get stuck on a therapist. It would be a perfect world if the very first therapist you went to was amazing, determined, connected with your child, and you adored him or her. However, if apraxia teaches you nothing else, it will show you that the world is not perfect. Therapists aren’t there to be your or your child’s friends. They are there to help your child speak. Do not lose sight of that. Progress is critical. If you are not seeing or hearing it in a reasonable amount of time (e.g., several months), move on.
4. Endurance is also critical. This isn’t a sprint; it is a marathon. Apraxia, unfortunately, isn’t going anywhere. It is here for the long haul. Your child’s needs and progress will develop and change, but apraxia is always looming. For us, it rears its head when our son is sick or hurt and he can no longer tell us what is wrong. You will be reminded how difficult it was for your child to master those first words when you watch him or her struggle with reading, writing, or math as his or her peers sail by. Just as your child fought for the words, he or she will fight for these skills as well. Help your child fight and set the pace for the marathon ahead.
5. Longevity is to be expected. I wish I had started explaining apraxia better to others early on, but back then I did not fully understand the world into which we were entering. I would love it if people in my son’s day-to-day life grasped the fight ahead. Your child will most likely always need support for apraxia, and hopefully he or she won’t always have to fight for it. Others need to understand that it’s a lifelong diagnosis, not an easy fix.
6. Speech is not a cure. Now that my son speaks, most people believe apraxia is a non-issue. They are blind to how many hundreds, if not thousands, of hours he has spent in therapy—how many hours he still spends in therapy, something that won’t be changing for the foreseeable future. If anything, we will only be adding new types of therapists to help with academic challenges. Speech does not “fix” our children, and their apraxia needs don’t end with its emergence.
7. Your support system may not be who you imagined. I think it is natural to believe that your family will be just as invested in your child’s progress as you are. We may tell ourselves that our friends’ hearts are breaking with ours as we digest this new part of our life. Well, sometimes they aren’t … at least not for the vast number of parents that I hear from. I do know some people who have great support close to home, but for the majority of us that is just not the case.
Most of us will have people that appear out of nowhere to offer support. They may be acquaintances, people you reconnect with from your past because they can relate, members of an online support group (which I highly recommend joining), or parents of your child’s friends. Whoever they are, those individuals seem to always be celebrating your child’s successes and feeling your pain on those not-so-great days. Hold on to those people. Tell them how much you and your child appreciate them. They are critical pieces of the puzzle that is your child’s life—and yours, too.
8. Your child’s therapists will become like family. Your child’s therapists, specialists, tutors, and anyone else he or she ends up needing may become closer to you then some of your family and friends. Our son will be 6 years old in a couple of weeks. He is having his first real birthday party with friends. The very first person he asked to invite: Mrs. Rachel. She was one of his first speech-language pathologists, and they worked together for years. They have a bond like nothing I have ever experienced. He adores her, and she adores him right back. I think he knows how important she was for him on this journey. Their connection is strong and genuine. He loves and is close with his two occupational therapists as well, but there is just something about the wonderful Mrs. Rachel. Don’t be surprised by the strong and enduring relationships your child develops with some of the people with whom he or she works.
9. Celebrate the successes more than you grieve the setbacks. It is human nature to think about what is going wrong or what you feel has been taken away. However, try not to dwell on these things too often or for too long. It is a vicious cycle. We all have low times, and that’s okay. The grief will ebb and flow, and that’s normal. Instead, try to focus on the progress, the relationships your child has formed. Reflect on how your journey began and on what you have accomplished since then.
I have videos of my son that I can watch, and they serve as an instant reminder of what the beginning of his journey looked and felt like. I also keep a three-ring binder with every evaluation and IEP in date order. I find it soothing to be able to go back and read all of his evaluations and compare them to today. It reminds me that we are headed in the right direction. It might not always be as quickly as I would like, but we are still making progress and achieving goals.
10. Every child deserves a voice. Recently I was reminded about everything I have mentioned above all in one simple act. Pretty incredible, right? I woke up to find that my son had randomly pulled my CASANA (Childhood Apraxia of Speech Association of North America, www.apraxia-kids.org) magnet off of the refrigerator. He had traced it and wrote, to the best of his ability, “Every Child Deserves a Voice.” I asked him if he knew what that said or what it meant. He said no. I explained that we bought that magnet at the apraxia conference in Texas, and I read it to him. His response: “But Momma, every child DOES deserve a voice.” Of course I was teary-eyed and took to Facebook to share my joy. I received several messages to tell him “Good work!” and “I am proud of you!” There were also messages to me saying that I am a good mom and to keep fighting. As silly as all that may seem to some people, it was everything to me. Those friends “showed up” and supported my child; they supported me. These simple messages reminded me of the marathon we are undertaking and gave me the extra strength that I desperately needed. Your child DOES deserve a voice, and you will help him or her find it as best as you can and by any means possible.

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Despite knowing all of these things, I have still been feeling anxious and overwhelmed by my son’s impending transition to first grade. He is scared … terrified really. He says they have tests, new teachers, not as much recess, and he won’t have anyone to help him because his friends might not be there. Parents of “typical” children get to say all of the “normal” things to comfort their children, and that is usually the end of the conversation. For parents of children with disabilities, we are just as terrified as they are and struggle to find the right words to comfort and reassure them. The closer we get to the end of the school year, the more my son has been talking about it and expressing his fears. I am scared of what the future holds.
 
What I am trying to keep in mind is that this is part of our apraxia journey. It is the next road we have ahead of us, and we will tackle it just as we have all of the others. I tell you this so that you understand that the obstacles and the therapies will change, but your grit and determination will help pave the road for your child’s apraxia journey. Do not forget to LIVE life, try not to let it live you.