April 29, 2017 | By Lori J. McClure - Assistant Director
Faith not FearAs a parent with a child diagnosed on the spectrum I have often wondered…” WHY?”. I do not think I will ever have the answer that will soothe my soul, but I can say there have been significant impacts because of this journey. The impact I have the most intimate knowledge of is the evolution of myself.
I remember my son being around 12 months old and I was in the corner of my bedroom on the floor sobbing, pleading with God to just let my son talk. My pleads were fueled by fear. The fear of not knowing what was making my son different from other one-year-olds. The fear that I was right and the doctors were wrong. (I had brought my son to his pediatrician because my motherly instinct told me something wasn’t typical, and the doctors reassured me that he was fine. They said boys develop later than girls and I was being overly cautious.) My gut told me they were wrong. The fear that my son, the pride of my heart was not going to be all that I had hoped and dreamed. The fear my heart was going to be eternally broken. The fear that I was not in control of his future and fate and nothing could change that fact.
It has been almost two decades since that moment on the bedroom floor. There are so many stories I could tell of triumphs and victories and yes, there are also many stories of pain and despair. However, of all the many lessons I have learned, here are a few I would like to share.
First, never lose hope. I need to remind myself of this every day. I knew myself so well I even went and had a reminder inked on my arm, so that when I started to lose hope I have a visual representation of the understanding that things do not always happen in our timing, but all things blossom and become beautiful in time.
Second, never back down. My son is finishing a chapter and beginning a new one in a few months. In this new place, I can either resign to the system and just let him be carried along or I can ramp up and dig deep for the next push, challenge and opportunity to advocate. I’ll be honest, I’m exhausted. Although I have had a tribe around me to support and encourage, I am tired. However, I believe greater is He who is in me. My source of strength comes from my faith and the promises I hold on to be true. I will continue to run this race believing all that I need will come before I even ask. My son and his future is worth every step I push myself to take.
Finally, never isolate. In the beginning, I was so scared to let my son out in the arena of life. I needed to be that “Mama Bear” or as one of his teachers referred to me as the “Mother Tigress”. I circled him everywhere he went. It wasn’t until I let go, ok, let go a little, that he was able to start experiencing life more fully. I had to start believing in the goodness of humankind and trust there are people out there who would accept and value my son for who he is. It was proven. Are there vicious and ignorant people out there? Yes. And are there people out there who will look at your child only with pity and bring them in as charity? Yes. However, there are people who will be inclusive of your child because they like your child, they value your child and they just see your child as one of them. That’s the good stuff. The stuff that makes your heart swell from gratitude and appreciation of what is right in the world, life changing moments for you and your child.
One more note on never isolating, that includes, never isolating yourself. It was too easy to become saturated in my own emotions and vulnerability that I began to build walls. I began to pull away from my own relationships and only engaged in tasks. I had to change that. I needed to be the very best for both of my children and to accomplish that I needed people in my life; friends who would just let me be me. Would they completely understand my journey? No. But I don’t completely understand theirs either, so we are equal.
We all have our own journeys. There is not one duplicate, which is the same with Autism and all disabilities. For every diagnosis, there are different symptoms, manifestations and treatments. However, the one universal need, whether disabled or not is acceptance and inclusion. I had to stop fearing the worst. I had to let go of fearing failure. I had open opportunities to see there are good, kind and loving people in this world. I learned we can all learn from each other, support one another and build a world where everyone can be the very best person they can be whether disabilities are a factor or not. Autism awareness/action month is over, but the needs are not. Let us not lose sight of the daily opportunities we have to help create greatness in and through each other.