You would be surprised.
Almost every conversation I have and almost every comment made at me is in some way shape or form is about autism.
And that’s perfectly okay.
I want people to ask me about autism.
I want people to acknowledge autism.
I WANT to talk about autism.
I want others to understand how autism affects my son, his life, and our life as a family. After all, our life is pretty much autism 24/7. Every aspect of our day is based around schedules and routines. So, if you didn’t or don’t ask me about autism, chances are, our relationships have been severed.
When I first started writing about our life with autism, I knew I would be signing up for many things such as these conversations and comments and I’ve had a plethora of supportive and meaningful conversations that I otherwise wouldn’t have had if it wasn’t for being open about our life.
But, I didn’t realize that with my son’s milestones, would come comments from people who aren’t happy for him or for my family.
Some people truly envy that my son is verbal, sleeps through the night, and is making major strides in many areas of his life. If I had to put myself in their shoes, I probably would be envious, too, if my child didn’t talk, sleep through the night, or wasn’t making any progress. I can sympathize because I have been there. So to these people who have made me feel as though they aren’t happy for my family, know that it’s okay and I forgive you. Nothing can take away the joy of the progress that my child has worked extremely hard for.
Would you believe it if I told you that some of the comments I get are ones like these? Maybe some of you have received some form of these words below:
“He/She is higher functioning, so it makes sense you can have a conversation with him/her.”
“Are you sure he is still autistic?”
“He doesn’t seem or look autistic.”
Sometimes I get a, “Well he’s/she’s really smart” … Possibly indicating that he wouldn’t be smart if he were autistic? But he is autistic so since he is, he should be… unintelligent?
Like what does that even mean?
I know some people mean well, but at the same token, I just don’t understand some of the logic behind these comments.
Autism is a spectrum. It has a bright side and a dark side and it affects each individual differently and uniquely.
Lately, my family has been on cloud nine. Truly, it’s an epiphany bursting through all of my worries and fears. Don’t get me wrong, I still have plenty of worries and fears, but after about seven years of constant anxiety, I for once feel more peace than I do worry.
The present and the future have never been brighter than they are right now.
Oakley is succeeding in school, has graduated outpatient therapy, and recently has started taking the bus to and from school. In October, he is going to be playing on a local youth basketball team.
He is climbing mountains, breaking down walls, and blowing us all away as he is doing it. The most important thing in all of this is that he is HAPPY! I’ve never been more sure of that, than I am now and that is a GREAT feeling.
Oakley is communicating, sleeping through most nights of the week, and gaining a lot of independence now that he has started Kindergarten. Independence that he wants and that he has expressed wanting to his dad and I. Even to his teacher.
He loves school, loves being at home, and loves his family and friends.
Some of the people behind comments like the ones you read earlier, might be thinking…
Well, your kid is verbal, he is succeeding, and accomplishing all these milestones, good for you.
But let me just say…
There was a time my son wasn’t verbal.
There was a time when he would only eat three kinds of food. Fries, pizza, and hot dogs.
There was a time he was aggressive and I would have to do safety holds to keep him safe.
There have been many times he has bolted from his dad and I. Still does to this day.
There have been many days his anxiety has taken over and we didn’t leave the house.
There was a time we were at therapy three times a week, driving 80 some miles round trip for speech, occupational, and hydro therapy. Now, Oakley only sees his psychologist weekly to one time every two weeks depending on his Doctor’s schedule.
There was a time we didn’t sleep. And even though we sleep more than we use to, we still have nights where Oakley wakes up in the middle of the night wide awake. There are still nights my husband and I can’t sleep, because of trauma we’ve gone through when Oakley had two seizures when he was two years old. Seizures we have no answer to other than they were febrile.
There was a time he wasn’t potty trained.
As for food, we are still working hard on that. With his psychologist and at home. We’ve compiled a blend between Sub-sequential Oral therapy, visuals, predictability, and incentives to work with Oakley and are seeing some amazing progress. For the first time in his life, Oakley is eating carrots!
So you see, there was a time we weren’t on cloud nine.
There was a time we were stuck climbing a steep mountain.
And now, we are here. Resting in a meadow, taking in the views, and relishing in the calm.
My son has worked HARD to get this point. He deserves this calm.
Autism is not easy by any means. I know this calm might soon fade and we will soon be back to the drawing board on how to tackle the next obstacle, but you know what? That’s okay, because in these last five years, I’ve learned a thing or two and one of them is strength.
I never knew I had so much of it.
And when all you want is to keep seeing your child happy, strength comes in full force and there is no stopping it.
Oakley’s happiness is my drive. This cloud we are on, is my drive.
Love will see us through.
Hope will always remain.
And it will all be okay.
Please be happy for us…
More importantly, be happy for Oakley.
After all, he has done all the work.