Yesterday Andre turned 15. It hasn’t been the easiest journey getting him there.
Autism sucks. The endless meltdowns, constant push backs and never-ending trips to the schools. Countless hours of driving back and forth for therapy: hippo, occupational, psychotherapy just to name a few. The still unresolved issues of cleaning up after himself and throwing wrappers wherever they land. And the inability to consider other people’s interests and emotional needs instead of his constant “ME, ME, ME” thinking can leave me discouraged and exhausted.
Putting Andre on numerous drugs to control tics, anxiety, and severe ADHD wasn’t on my radar. I hate using these medications the combination of which can cause side effects that go bump in the night. And the cost, even with insurance, is astronomical. But managing him is easier with them than without and he doesn’t like how he feels naked and exposed when he forgets to take his meds.
Having two boys with autism has put our marriage under stress and considering divorce. Disagreements over how to approach IEPs, how to get Andre to comply, where we should be putting out money in our never ending quest to get the boys the skills they need to navigate life. Being totally exhausted hasn’t done wonders for our time together, especially in the bedroom.
I have been at my best and at my absolute worst because of autism. I have fought harder than I ever imagined I could trying to get services. I have loved fiercer than I ever thought I knew how. I did mundane tasks repeatedly in hopes that Andre would “get it.” I have also yelled louder, gotten angrier than I ever thought I was capable, and said a few words I desperately wish I could take back. Autism has at times brought out the Jekyll and Hyde in me and taught me things about myself I desperately wish I did not know. And PTSD-like symptoms still linger when I hear prolonged screaming.
But to his credit. Andre works harder than any one I know just to survive in the world. He fights anxiety, he has severe insomnia, bright lights bother him while loud noises used to do him in. Socially, he lives in a very isolated place. He wants friends but doesn’t know how to act so that people want to spend blocks of time with him.He is very close to beginning work on his Eagle Scout, he has saved the life of a elderly woman, and he carries amazing grades in school. He loves band, once memorized a 200 page book word for word, and he can name every dinosaur known to man including where they lived and during what period.
Recently, I asked Andre if he could take a pill so he would no longer have autism if he would do it. He replied, “No, because this is who I am and I like me.”
And even though this autism journey with Andre and Paul is not the one I signed up for (think European Cruise vs Survivor in the Outback); I also know that my boys are becoming young men who are an asset to the community and our family. They will make their way in life. It may not be the life I envisioned but both boys can and will make a life that they are happy with and can be proud of.
Yes, autism sucks but for some kids with this disorder there is a light at the end of the rainbow and in this past year its brightness has intensified and let us see the light where darkness once roamed. Autism sucks but it does not rule us.
Happy Birthday, Andre. You are deeply and dearly loved. I hope others will learn to accept and love you too.