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.
In April of 2014, the diagnoses began coming in for my son. They were inevitable. He was just shy of 3 years old and basically nonverbal. He fell constantly and was always moving; he truly could not sit still. First came apraxia, then sensory processing, and then global apraxia. It blew my anxiety to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find the answer; I had to fix this. All three of these diagnoses are rare individually, so trying to find solid answers and professionals who could treat all three with the overlap proved to be extremely difficult and still is. I lived every day with a tightness in my chest, always exhausted, completely lost, and totally overwhelmed. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible.
After several months, I began to understand the terminology and thought I had gained some solid ground against my anxiety. Our son was making progress in intensive therapy, but with that came the overwhelming realization that we are in this for the long haul. None of these are disabilities that are easy to correct or that have a defined long-term prognosis. I needed to come to terms with the fact that we will have therapists more involved in our lives than most of our family and friends. Having a child with invisible disabilities while fighting an invisible internal battle with the outside world is exhausting. This was our new normal, even if I had no idea what to do with it.
As the anxiety within me grew, I struggled to control the constant barrage of “what ifs.” What if he doesn’t have friends? What if he never develops intelligible speech? What if he gets lost or hurt and can’t tell anyone? The list goes on and on. I began living at a 9.5 out of 10 on the “maxed-out” scale in life. The slightest thing could push me into full-blown panic mode. My hands frequently shook, my chest felt as if an elephant were standing on it, and my heart hurt for my child who I knew had a very long road ahead of him. I realized how desperately I needed a break, but I never felt allowed. It seemed selfish, as if I wouldn’t be focusing on what I should, and I was terrified at the idea of leaving him. How do you comfortably leave a nonverbal child? It became very difficult to know where one fear stopped and the next began. I lived in a constant state of “waiting for the other shoe to drop” and could feel the emotional spiral. I personally know many special needs parents who struggle with anxiety; many doctors now compare this type of anxiety to post-traumatic stress disorder due to its relentless and traumatic nature.
Since I have had to come to terms with the fact that I am not able to fix my son’s struggles, I work tirelessly to fix the world in which he lives. I became an apraxia walk coordinator, an advocate, and someone who provides all-around support for families such as mine. I find strength and peace in helping others, especially children, while building awareness. Coincidently, I have spoken with numerous other walk coordinators, advocates, and nonprofit founders who also struggle with anxiety in the exact same way. Working to make the journey a little easier for those coming up behind us seems to be therapeutic. I certainly do not feel as alone on this journey anymore. Turning my anxiety into action has allowed me to breathe a little easier and to feel as if I have a bit of control in my generally out-of-control world. Still, I must constantly remind myself that not only do I periodically need a break, but I deserve a break. I must attempt to maintain balance in my life and keep my anxiety under control, not just for me but for my family as well.
Being a parent of an individual with special needs requires the absolute best of you every single day. It’s imperative for you to be in top shape both mentally and emotionally. I typically must be reminded of this — to go to yoga, go to a concert, read a book, take a minute for myself. It is hard, but I am working on it, I am aware of it, and I hope to one day fully control it. Until then I must depend on those closest to me to support me and even push me to take time out and recharge.
If you are struggling, try building that support by having people in your life who truly understand what you are going through. I encourage you to find support groups on Facebook, to find parents “walking your walk.” That is where I find most of my comfort and no judgement. I suppose this will be as close to “fixing it” as I ever come, but I will never stop trying. As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies.
Apraxia Awareness Day is May 14th, with an awareness event being held May 13th, 12-3 p.m. at We Rock The Spectrum — all are welcome to attend! The 3rd annual North Florida Walk for Apraxia will be November 4th.
About the Author
Michelle Leigh is proud to be a fierce advocate for the causes in which she believes. Since 2014, she has made it her lifelong mission to educate people on apraxia, with which her second child was born. She wants his voice and that of every other child living with apraxia to be heard. Leigh lives in Jacksonville Beach with her husband and two children.
It was your article about your son that was responsible for showing me the light years ago. I knew there was something not right about my 2 yr old and the doctors always shrugged me off. Everything you wrote hit home. I read it to my husband and we just knew. I remember that night both my husband and I just sat in bed grieving. We were terrified of what it meant for him. I had the exact same fears you did and no matter what I did I couldn’t shake it from my mind. It was all I thought about. I googled for hours, days, weeks. After about a year the constant worry slowly went away but I had to force myself not to think about it. I would focus on one day at a time. And take the small victories as huge! We just got released from speech therapy (private) this past week and it took 3 years but he has come so far. People with typically developing kids will just never understand the struggle our kids have when it comes to something so simple (to others) as talking. It’s heartbreaking.