I could hear my son counting in the other room as he washed his hands and tapped his foot on the ground, every number pierced my heart – when your kids are hurting, and you can’t help them it’s worse than when you are hurting. I would do anything to take away the pain both mental and physical that he experienced through his obsessive-compulsive disorders (OCD’s) but they were just part of our lives.
Many diagnoses came in staggered, and we did what we could to manage them, with autism finally wrapping them all up in what you could say was a nice bow. That may seem strange to some, but when we finally received that diagnosis, it was a present it was the light we needed to move forward.
From the time my son was born, I knew he was different – I could barely put him down. Not much would calm him, so I learned to find the few things that would work, and that was mostly holding him. For years he wanted to be wherever I was. We lived in a 2-story house with a basement and attic and even if I was in the basement doing laundry- he was with me, he even slept next to us.
“Expert” after expert told us that “no, sorry” we can’t pinpoint exactly what is going on with him- no it’s not this and it’s not that, but let’s start with this diagnosis and see what happens. Then why does he have issues in social situations? Why is he so sensitive to certain clothes? Why does no punishment work? Do you know how many different positive reinforcement things we tried? Why do certain noises drive him crazy, yet he can make noise that doesn’t affect him? Why does he line stuff up? And it has to be just right for him or a meltdown ensues.
All we wanted to do was to help him and eventually, through trial and error, we figured out what worked and what didn’t.
We were determined to advocate for him wherever and whenever we needed to, and advocating allowed him extra help in school until we eventually received the diagnosis that enabled him to receive all the support he needed. Some think an autism diagnosis is an ending but for us, it was the beginning – it allowed us to research more and understand more. It allowed him to be provided with the help he needed in school, and the time for him to process. His intelligence was amazing but without the tools he needed to show what he knew he was frustrated. Imagine knowing the answer but being unable to express that knowledge through writing down answers or not being given the time to process your thoughts. Instead, he figured disrupting the class was the only answer for him.
An autistic person’s brain processes differently; it’s not bad it’s different. We are all unique and sometimes we need alternative tools to express our differences.
We are so proud of our son. He is now able to self-advocate, expressing what he needs. We taught him how to advocate for himself and express his needs because we are not always with him. He is in college now and we speak often about how he has been able to use his self-actualization tools to ensure he has what he needs.
He’s following his dreams and doing what he loves, he’s a man who cares deeply for others, and he’s sharing his unique talents with the world. He’s a person that anyone would be lucky to call a friend.
Know that you are not alone. If someone in your life has received an autism diagnosis know that others have been in your position, know that it means you now have what you need to support them, and never stop advocating for yourself and for those you love.
by: Jeannette Paxia
