My thoughts get the best of me.
At any given moment of any day, my thoughts are consumed by what needs to be done around the house, grocery lists, work, family, and friends. I would say that is just a small fraction of what my mind really thinks about. What my mind is really thinking about all the time is something that affects more than three million people in the United States. That is 1/68.
What I think about more than anything is autism.
You see, I’m the mom to a beautiful, almost six year old boy named Oakley. To describe Oakley, would be to write a book. He is so many things. He is smart and extremely funny. He has a love for life and a perspective people can learn from. He teaches his dad and I so much about life and has made us better people.
Oakley is autistic. He was diagnosed in 2015, two months before his third birthday.
This means that for Oakley, social interactions are difficult and communication is difficult. Autism affects the way Oakley eats, sleeps, and plays. His sensories are heightened making sounds louder than they are, smells stronger, and lights brighter- which is not comfortable to him. It is because of autism, he has had to have speech, occupation, hydro, and food therapy since the age of two and a half.
Now here is where autism consumes my thoughts.
I was scrolling through Facebook one day and I came across a quote a parent of a NT child posted. This quote did not offend me. In fact, I agree with it. But autism has a funny way of taking what I agree with and changing it’s meaning. It simply changes because while this NT parent and I want the same things for our children and may share the same dreams, it changes because our children are not the same.
What one dream means to her, that same dream means something different to me. And that’s okay.
The quote read:
“Enjoy the chaos for one day the house will be empty and you’ll miss all of this.”
The quote referred to life with kids being busy, but that one day kids will grow up and move out and then there won’t be anymore chaos and busy lives full of sports practice and school events, leaving a parent missing what once was when the kids were kids.
Again, I agree with the quote. Shamefully, I admit that for a second I forgot about autism.
For a second.
Then over the course of the next few hours, all I could think about was that damn quote.
You see, as a parent of a child with special needs, there’s a lot of worry and what ifs. There’s a lot of unknown to what the future will hold. More than anything, we fear the day our we are no longer living to care and look out for our loved ones.
All I could think about after reading that quote is; Will there be day my son won’t live at home?
He is only near six years old right now. Since the time Oakley was diagnosed, he has made tremendous progress and strides in therapy, at home, and at school. With age come new challenges, but right now, I honestly do not know the answer to that question.
Do I have hope? Loads of it.
Do I believe that one day he can live on his own, marry, have kids, even? Absolutely. I believe it, I hope for it, I pray it will happen. What mother doesn’t want their child to find the love of their life and have kids of their own?
Life with autism, though, will always keep certain thoughts in the back of my head. One is that there will always be the possibility that he may never leave home and live on his own. He might not ever get married or have kids. There is always a chance, my son will need assistance in his life, for the rest of his life. That he will always need someone to help lookout and care for him. Even if he can move out and live independently.
I think that is why I’m so passionate about early intervention and spreading awareness about autism. One day my six year old is going to be an adult. Being an adult, doesn’t mean autism goes away. He will need supports and he will need his father and I.
The words are true.
“Cherish your kids while they are kids.”
“You’re going to miss the chaos one day.”
While I firmly believe in these words and do cherish my son’s childhood and I do believe he will have a successful future, I just can not say that my son is going to move out, go to college, get married, and have kids. I can not say that my house will be an empty nest one day.
Because it might not.
Then again, maybe it will be.