Life is filled with obstacles. Everyday, people face roadblocks. We all go through trials and tribulations. Some experience soaring highs whiles others go through extreme lows.
The emotional and mental roller coaster of raising a child on the spectrum is not for the weak. We’re human beings that are automatically thrown in the boxing ring. We have to fight for the rights of our children. Our opponents come from various groups. They can include doctors, therapists, school administration, insurance companies, society, and even family members.
I’ve gone up against all groups mentioned and then some. I’ve had no choice but to advocate for my son. Some seen him as just a case or diagnosis. Others, genuinely didn’t have his best interest at heart. Very few took the time to understand my son and his needs.
I struggled with what to do and what not to do. There was trial and error. I basked in the success and worried about the failed attempts.
Many times, when my son would have a meltdown, I tried to stop them. I knew spectators were judging my parenting skills. During family gatherings, it wasn’t any better. I received many unwarranted suggestion on several occasions.
The falling out on the floor, stomping of the ground, or throwing things (all while screaming and shouting) was hard to handle. I tried ignoring them or attempted to remove him from the situation along with other techniques. Sometimes it worked. Most times, it didn’t.
I learned how to listen to him with more than my ears. Now, I know that may sound crazy but I’ll explain. Babies cannot speak. We listen to their cries but we’re also observing them to pick up on their physical responses. I learned to use a similar method for meltdowns.
One day, Preston had a severe meltdown while at home. I was watching TV and he was playing nearby. It appeared out of nowhere. I was caught off guard. I felt frozen. Thinking…thinking…thinking. I could not respond to him in that moment but I closely observed him. Why was he screaming? What was wrong? That’s when I heard anxiety and frustration in his voice. Then, our eyes locked. What was he trying to tell me? Suddenly, I sensed he wanted to feel love and security. He wanted my attention. I wrapped him in my arms and he began to calm down. Minutes later, he was able to verbally communicate to me what was bothering him.
Learning his various ways of communication helped me advocate for my son in ways I never thought I could. In turn, it helped get him services that were beneficial to his well being. He’s overcome so many odds and, for that, I’m extremely proud of him. He doesn’t see the obstacles. He’s simply learning how to navigate through life. I cast his worries onto me. My goal is make the mountains into boulders, if not pebbles.
Preston has taught me about overcoming the odds by facing your fears. Years ago, my brother told me he envisioned me going across high school and college campuses speaking about autism. I told him he was crazy. I used to have panic attacks when public speaking. Well, I now have to retract my statement.
While at Eastern Michigan University, I took a Human Diversity/Social Justice class taught by a brilliant professor. This professor is an extraordinary woman who’s done a tremendous amount of work for social justice. I met someone that would change the course of my life. She was a guest speaker. Patricia is a vibrant, hilarious, and strong woman who doesn’t let obstacles stop her from enjoying life. Also, she has a beautiful eye for photography. I connected with her and I came out of my shell in that moment. Now, my advocacy for my son laid the foundation but her presence and her story inspired me to do more.
Now, I’ve been invited to speak in the same class about our life with autism. I almost declined due to fear. My son has inadvertently taught me to face challenges head on. Yes, I still get nervous but it’s becoming more comfortable to do. My current challenge is how transparent can I be. I respect my son’s right to privacy. I don’t want to discuss anything he doesn’t want to share. In fairness, I’m speaking about his life. He’s right by my side at every engagement. He loves it! He likes the attention but I’m almost certain he enjoys leaving early from school as well.
I’m eternally grateful for the experience to share our story; the good, the bad, and the between. If not for the unexpected chance to spread autism awareness, I would not be as motivated to do more in the autism community. We are working something that we hope will be a benefit to those on the autism spectrum.
This journey has taught me the real simplicity of life. Be thankful for everyday. You can’t have the good without the bad. How else would you relish in the happy moments?Enjoy special moments with loved ones and grow through the hard times.
Preston and I have become closer than ever. Together, we’ve tackled challenges. We’re ready for whatever lies ahead. We’re a team and we always say “Teamwork makes the dream work”. To us, family is paramount.