I try not to do this, although I’m not sure why. Writing from the heart is always more gripping than trying to be detached. But it can also lead to … mistakes … vulnerabilities …
As I think I’ve mentioned before, our son is autistic. I know that’s a word that most people are familiar with nowadays, but when our son was diagnosed, it was a new thing. Now days they diagnose kids when they are babies or toddlers. In our son’s day, he was 9 years old.
Because our son happens to be gifted AND autistic, diagnoses was complicated.
For 9 years, we were just the parents who couldn’t control our child … or we must have done something to abuse him … or we must be neglecting him … or we weren’t disciplining him enough … and the list goes on. Everyone had their opinion. Everyone thought they knew what was best for us to do. We had advice coming out our ears.
And none of it helped. And most of it hurt.
We knew something wasn’t right with our son when he was about 2 1/2. But when we brought up our concerns, we were written off as being first time parents, among other things. We were told we just didn’t “know” what children were like or supposed to be like and that everything was fine.
But I knew he wasn’t fine.
My beautiful curly haired little boy who had spoken his first words before 12 months of age, who was using complete sentences on his first birthday, who knew ten colors and could say the alphabet at 18 months had quit talking. He sat in the middle of the floor tossing a balloon up in the air over and over and over and watching it fall to the floor or drawing page after page after page of faces or “scenes” for hours on end. He couldn’t walk up and down stairs. He couldn’t catch a ball. He couldn’t see anything if it wasn’t on a blank background. He couldn’t peddle a trike. And he gagged if he ate certain foods.
Night times were terror for all of us. He rarely slept, and when he did he would wake up screaming bloody murder and be inconsolable for hours after.
It was hard. It was mind numbingly heart breaking to watch our child go through this. And it was harder still knowing there was no one who could help us.
Every time we approached the subject of something being wrong with a doctor, the doctor would look at one aspect of the situation and decide it wasn’t really a problem. One doctor, one thing. Another doctor, a different thing. No one ever looked at the whole picture. No one ever asked all the questions.
At least not until our son was almost 9 years old.
That’s when we took him to see a new pediatrician. She was good. She was beyond good, we would find out later. She asked all the questions. She looked at the whole picture. She took in our whole son and his whole life …
And it was like magic. Finally someone was seeing what we had been seeing for all those years.
Getting diagnosed was hardly a magic cure though. We knew what was wrong, sort of. The multitudinous processes involved in the autistic mind are complicated to say the least. One child may experience issues with one thing while another child doesn’t have that problem at all. So defining the exact parameters that need to be dealt with is daunting …
And then, just because we could deal with some of the things, didn’t mean our insurance company would pay for any of the treatment. We were on our own.
We were poor. We still are. I had to give up my full time job to stay home with our son and while I’ve worked part time for the past twelve years and my husband has worked full time plus, we still don’t make ends meet let alone have enough to pay for extra therapy … for him or for us.
If my son had cancer, there would be funds to help pay for his needs. Cancer treatment can be a long battle.
Autism is an even longer battle, fought one day at a time for the rest of his life.
I remember the day it dawned on me what my son was facing. I was waiting in line to vote, which we do at a church. On the bulletin board in their hallway was a flyer about a fund that had been set up for the family of a child who had cancer. I thought, wow, I’m glad I don’t have to go through having a child with a long term illness as a parent. That would be so hard to face.
And then it hit me … I was one of those parents.
For the last 12 years we’ve faced this on our own. It’s brought us closer at times and nearly torn us apart at others. In our small town there are no support groups for it. No other parents to call for help and assurance or reprieve even for a date night. We used to sit at the kitchen island and eat a nice meal we fixed at home while trying to keep him engaged in a movie in the other room eating a pizza. That was as close as we got to having a date.
All the “reports” say that kids “grow out of it” over time. But the reality is, they don’t. They learn to cope, they learn to compensate, they learn to adjust everything they do to fit into a world that has no tolerance for anyone or anything that is different. And then the world still doesn’t accept them.
I won’t lie. It’s hard. It’s beyond hard some days.
It’s scrape-yourself-off-the-floor, fill-yourself-with-caffeine, and hope you make it to the end of the day.
It’s taking those few precious moments while your child is engaged and curling up in a ball on your bed and crying your eyes out so they won’t know or see.
It’s making a game out of going to store every single time so that you don’t lose your mind when they pull everything off the shelves and the store clerks are going mad and everyone is looking at you like you’re the worst parent of all times.
It’s explaining, yet again, why they can’t have ravioli for every meal.
It’s meeting the gaze of the old people sitting in front of you in church glaring over their shoulders.
It’s wondering what “social media” is and dreaming of the day you might get time to engage in it like the rest of the world.
It’s sitting with a box of pictures of your family when you were young and wondering how life might have been different.
It’s feeling guilty that you somehow caused it all.
And feeling more guilty that you couldn’t stop it or fix it.
And feeling even more guilty because you want it to stop.
Because I love my son more than life itself. He is so incredibly precious and smart and lovely and caring and thoughtful and …
I would do anything to make his life better, easier, happier.
But I just don’t know what that is …