On September 6, 2006, my son Isaac came roaring into the world.
He had jaundice from the start and had to use a special “Bili-Blanket” that was strapped to him which made snuggling a little more difficult. He didn’t nurse, despite lots of time, effort, and tears on my part. Finally I just had to pump my milk and give it to him in a bottle.
When he was three weeks old, I became extremely sick and was rushed to the emergency room. Three days later I went in for emergency surgery. I was so heavily medicated during this time that I was no longer able to produce breast milk. I couldn’t hold Isaac very well, though I did insist that he be put in the bed next to me whenever possible. But I couldn’t do much with him, and when he was hungry or needed to burp or have his diaper changed, I had to give him to someone else. That lasted for several weeks all together. I can’t tell you how much guilt this causes my soul now. If only I’d held him more, if only I’d found a way to nurse him, if only I hadn’t needed so much medicine.
As the months went on, Isaac was always sick. Every time I took Isaac to the doctor, they discovered ear infections. He was in and out of doctors’ offices and hospitals for digestive and respiratory issues. I began to see that my baby was living in constant pain.
At 10 months old, we brought Isaac swimming with the family at our neighborhood pool. That was the last time I ever saw my baby act like a “normal” baby. Soon after that, everyone in the house got sick—relentless vomiting and diarrhea. Isaac took it to the next level, when the vomiting and diarrhea caused him to become severely dehydrated, to the point where his mind and body simply shut down. I went to get him out of his crib one day, wondering why he’d slept in so late, and found that he wasn’t actually asleep. He was completely still, lifeless, but his hollow little eyes were open. When he cried, it sounded like a tiny kitten. He produced no tears.
I raced him to the doctor who did some blood tests and then raced him to the hospital where he stayed for a couple of days.
Again, despite the pain and misery of his condition, Isaac still managed to smile. In fact, he smiled all the time— it was all he ever did! Pretty soon, I realized that Isaac had shut down mentally.
Nine months ago, Isaac went to a happy place and he’s never come back.
I threw a grand birthday party for Isaac’s first birthday, but I didn’t have any idea what to get him as a present. He had absolutely no interest in, or even tolerance for, toys. I realized I didn’t actually know anything about him. He had one blanket that he sorta played with, but otherwise, he had no interest in anything at all.
At his one-year check-up, the doctor found yet another ear infection. When I told her that he wasn’t speaking at all yet, she suggested we get tubes put in his ears so that the fluid could drain and prevent future infections, and also improve his hearing so that he could begin speaking.
The surgery was done and it went very well. However, while we didn’t have to deal with any more ear infections, Isaac never did start speaking, nor did he act like he could hear me when I spoke to him. His hearing was tested and proven to be just fine. It’s not that his ears don’t work, it’s that his brain can’t make any sense of the noises that he hears.
Still, it was hard to get anyone to give a crap. “Maybe he’s just a little delayed,” is what everyone would say. No walking, no talking, no emotional range, no attempts at communication through gestures, no interest in toys, no awareness of my existence. This wasn’t a little bit delayed. This was a serious problem.
At 15 months, I took him to a new doctor. The doctor did a more thorough evaluation and learned that Isaac did, in fact, display autistic tendencies. He sent us to specialists and therapists. One of them failed us horrifically. I won’t take the time to go into all the trouble this doctor with the Children with Special Health Care Needs has caused us, but rest assured that she has been a huge impediment to our son’s progress. The other, an early intervention program through the school district, has been helpful, providing therapy and evaluations. But their funding and resources are so limited that all we get from them is one in-home appointment every month and three therapy playgroups every month. Obviously, this barely begins to scratch the surface of his needs.
I recently read that one in 70 little boys in Utah is autistic. That’s an epidemic, my friends. And what exactly has the state of Utah done about it? Well… they’ve buried their heads in the sand and chosen to ignore it entirely. There are basically no resources, no funding (we have to pay for the early intervention program– most states offer it for free), nothing but brick walls to bang our heads against.
Along with that, my husband works for THE major hospital system/health insurance company in Utah. You would think that we couldn’t be in a better place for good health care. But his company, like the state we live in, has decided to sweep autism under the rug and refuses to pay for any treatment or services of ANY kind. Isaac can’t even see a mental health specialist here until he’s three years old.
If my child had cancer, every door would be opened to him. But he doesn’t have cancer. He has autism. And all the doors have been slammed in his face.
Apparently, this bubble that I live in (and MUCH of the rest of this country, not to mention the rest of the world) has decided to ignore this horrific epidemic. Thousands—millions!—of mothers just like me are waging a war and receiving no results, as little by little the system bankrupts us financially and emotionally, while our children continue to suffer and be completely misunderstood.
Today is World Autism Awareness Day. It’s a hard day for someone like me—it means that the news is full of tear-jerking stories, descriptions of what life with autism is like, stories about mothers who suffocate their autistic children because they just can’t deal with it anymore. Statistics are given, such as, “80% of married couples with autistic children are divorced within ten years of the child’s diagnosis.” I can barely turn on the TV without alternating between wanting to scream and throw something at the stupid screen, or bursting into tears wondering how on earth we’re going to keep our heads above water while we deal with a lifetime of this.
And yet… thank goodness for World Autism Awareness Day. Sooner or later, we’re going to be impossible to ignore. Sooner or later, enough laws will be passed and enough insurance companies will be sued. Sooner or later, someone will give a damn.
I’m praying for sooner.
