What Autism is to me.
When my son was born I visualized all the things he would accomplish. I saw the wonderful person he would become.
When he got to be around one and a half, I noticed some little things, like his obsession with the ceiling fans, how he didn’t look at me when I said his name, how he would rather line up his Legos than build with them, and I ignored it, hoping I was wrong. When he was two, I was looking through some old books and found one on toddlers and looked up Autism in the back. What I read fit my son almost perfectly. I finally had to face it, so I made an appointment with his pediatrician to find out.
His Dr told me that while Marcus had to see a behaviorist to be officially diagnosed, he was 100% certain my son had autism. I’ve since got him the official diagnosis and he’s been receiving treatment through a program called Birth to Three and he’s been making some wonderful strides.
Financially it’s been frustrating because my husband’s insurance refused to cover any therapy with out a diagnosis, and when we got it, they refused to cover it because they don’t cover Autism. Right now we are fortunate because the Birth to three program takes state medical, which he qualified for, and we were able to get sliding scale for his speech. but once he turns three, the therapy falls on the school district. While I have confidence in the programs they have in place at the school he will be attending, I worry because should he need something more, it can cost us on average $150 per therapy session and he would need something once or twice a week. Without speech, occupational or behavioral therapy, he would not improve at all. Many families are suffering because they have more severe cases and don’t have access to many programs or are put on such a long waiting list, that they don’t know what to do in the meantime. Many families can end up foreclosing on homes to pay for therapy for their autistic child. We’re talking a minimum of $40,000 a year in medical bills for one child. Can you imagine the cost if you have multiple children diagnosed in one family? It brings families to their knees.
Then there is the stress of knowing you can’t take your eyes off them for a second. I have to watch my son constantly.
If he goes in his room to play, he eats the paint off his windowsill. If he’s in the living room, he’s throwing his toys at the mirrored doors on the wall. We have the kitchen chairs stored in our bedroom because he likes to climb them to get to things we’ve put up high.
We have the kitchen completely blocked off because he finds ways to climb onto the counters with the knife block, burners, and a window with only one lock on the bottom.
He knows how to open the sliding glass door so we have a baby gate wedge on the other side so it won’t open. He knows how to turn the knob of a door so we have to use the top latch as well as the deadbolt, because he can reach the deadbolt now.
If we are at a friend’s or family member’s house, we can’t relax because we are constantly chasing him to keep him from destroying their property or escaping out the door.
He sleeps erratically and my husband and I take turns getting up with him most nights. There have been some nights that he only wakes up once or twice, and others where I don’t get any sleep because he wakes up every 45 min to an hour. We are in a constant state of exhaustion and sleep deprivation.
He makes eye contact with me when he want’s my attention or is playing with me, but doesn’t do so for most other people and definitely not with other children. Thanks to his playgroup, he is finally starting to interact with other children even if it’s just to hand them a toy and walk away.
He is almost three and thanks to early intervention, is finally starting to learn words rather than his own language. He has is favorite cartoon memorized, even though he doesn’t know how to use the words outside of the script.
Another thing people don’t talk about is the reaction from other people. My family has been very supportive, but I have walked away from people I used to consider friends because they have told me that my son is not welcome to church events because he’s too much of a handful and that I should nip his tantrums in the bud. I have quit my church because of so called family friendly events that were not friendly to my family. It is painful and devastating, but here’s the good news, I can honestly say that the friends I have now after all that, are truly my friends.
Now I know this all sounds hard and trying but I can tell you that because of all this, when I see my son look me in the eye and say two words together like “more juice”, when I see him use a roller on play-dough, or when I see him use a fork for the first time, I cry with joy, because he accomplished something that he couldn’t do before. These seemingly simple things, he found challenging. And if he can overcome those challenges, if he can learn even a little at a time. Then there is hope for him, there is always hope as long as there is therapy.
We are currently trying to get a bill passed, Shayan’s Law SB 5059, that will force private insurance to cover the treatment of Autism and take some of the pressure off of public schools and state run programs, which will save the taxpayers thousands of dollars. Please keep your eyes out for that and vote yes.
In the meantime remember that it’s not rare anymore and cannot be ignored. One in 110 are affected and the numbers are continually climbing. Please reach out and help the families affected with Autism.
