If someone asked me to tell about my journey as an autism parent, I could. I could tell about the steps we took; the doctors we visited; the therapies we tried; the diets and medicines that did or did not work. These are all essential parts of the story for every parent of an autistic child. The most difficult part of the autism parenting journey to tell is the emotional struggle: the hard conversations with family members that don’t understand the diagnosis; the stressful IEP meetings that feel like administrators are focused more on the struggles your child faces rather than their amazing strengths; watching your child struggle with social situations. The pain, the struggles, and fears of parenting a child with autism can break your heart at times, but it can also be amazingly rewarding.
The autism parenting journey is different for everyone. When Hunter was first diagnosed, I remember desperately wanting advice. I wanted someone to help me figure out the first steps to take, but no one seemed to have the answers. There did not seem to be any answers to the questions, so I decided to do the only thing left to do…write our own story.
I decided that Hunter’s story was not going to be about Asperger’s syndrome. Hunter is not Asperger’s. He is a boy who has Asperger’s and because of that, some things are a little more difficult for him. We all have things that challenge us. For him, Asperger’s just presented challenges that he would need to face and some he would need to overcome in order to function in life.
Through the years when Hunter would go through difficult situations, he would often say that he couldn’t do something because he had Asperger’s. My response was that everyone has challenges and this was his, so we needed figure out a way to deal with the situation. He hated these conversations. The obstacles were hard. He wanted to give in and give up so many times. He wanted me to hug him and agree that it was too hard and he shouldn’t have to deal with this. I didn’t. I felt this would be the wrong way to have a happy ending to his story.
Many times I have felt that I must be royally screwing it all up! I thought many times that God had severely overestimated my capabilities on this one. I wasn’t cut out for this. I didn’t have the answers for my son. I had not helped him write his story in a way to make him successful. The teenage years have been especially filled with doubt and met with the most resistance. Our relationship has been through the lowest of lows and lots and lots of tears. My little boy who once struggled with tying his shoes and sudden outbursts has now turned into a 15 year-old boy who is 6’5″ with much different circumstances to tackle. Now we are trying to navigate social situations, like understanding friendships and girlfriends.
Then something remarkable happened the other day. He came home from school. He looked down at me and said, “Mom, thanks!”
I shockingly looked up at him and said, “For what sweetie?”
The next words out of his mouth are words I will never forget, “Thanks for not letting me use my Asperger’s as an excuse for not trying. Thanks for telling me that it was just an obstacle I had to overcome. I get it now.”
The truth is that every day he has new obstacles, but he is learning that he has the capabilities to overcome them. We work through each one as they come. He is now a freshman in high school and the concerns are much different. At that moment, I came to the realization, that though I have made many mistakes along this journey, I had gotten this one right.
For all of you out there who are struggling, let me give you some humble words of advice. Sometimes when you are in the middle of it all, it can be difficult to see the light at the end of the tunnel. It can be so hard to believe that it will all work out, and that in the end, the story for your child will have a happy ending. It can seem like the struggles are too much and you will never see the fruits of your labors, but the truth is, you will. You just have to believe in your child and believe that, in the end, your story will be as beautiful and unique as they are.
Rachelle Wade is originally from Indiana. She attended Ball State University and University of Evansville where she studied Advertising in Journalism and Marketing. She has been married for 17 years to her husband Jeff. She has 2 sons. Her oldest son is 15 and was diagnosed with Asperger’s at the age of 5 1/2. Her youngest son is 10 and has been diagnosed with Dyslexia. Her family moved to Texas in 2012. In March of 2013, Rachelle began writing a blog called Sassy Aspie Mom. The blog focuses on her daily life, being a wife, Mom of 2 boys and raising a child on the Autism spectrum.
This article was featured in Issue 45 – Protecting Your Child with Autism