The First Time I Share About Our Autism Experience

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Now that Autism Awareness Month is over, I wonder just how much more aware people are of the condition. I have a feeling those who bothered to read posts and watch videos were mostly those who were already aware and probably dealing with it in some capacity. Those who shared a witty slogan or two were likely happy to leave their contribution at that. Did you wear or decorate with blue? Yeah, that was supposed to mean something.

I don’t know that I’m ready to write about autism. I don’t know that I have anything sensible, let alone helpful, to say. When it comes to my son’s condition, I still have no answers, no Eureka moments that other families dealing with ASD (Autism Spectrum Disorder) have been blessed with.

You can say that I’m still floundering. It’s not even being back to square one. At square one, I thought the solution was definitive. The developmental pediatrician had made her diagnosis and subsequent prescription, so I expected to see significant results in time. That was very naïve of me. Autism does a magnificent job at confounding the most logical and learned minds. Is it neurology, nutrition, genetics…? I don’t know. Nobody actually knows. Experts, non-experts, and people with barely a nodding acquaintance with the subject all have their theories, but autism remains an enigma. I’m still not comfortable with that. I don’t think I ever will be.

But it’s my reality and I’m learning how to cope. I still alternate between acceptance and anger. And guilt. There are people who are great at playing victims, and then there are people like me, who would claim responsibility for causing the decline of modern civilization. My natural inclination is to spend an unhealthy amount of time blaming myself for the ills of my personal world.  These days, my son’s autism is almost always at the top of that list. At the end of the day, however, no matter my frame of mind, I have no choice but to take things a day at a time.

My second child was diagnosed to be on the spectrum two years ago. He had just turned three. He’s a handsome boy with a charming cleft chin and a gorgeous gaze that snared you whenever he deigned to bless you with eye contact, which was a rare treat indeed.

It just seemed like he was too cool for us, something that didn’t fit with toddler behavior. He didn’t want to listen to you. He didn’t respond to his name. Nonetheless, he didn’t walk on tiptoes. He didn’t exhibit any propensity for stimming. His verbal communication was minimal, but there were enough bursts of language to make us hope that it couldn’t possibly be.

Still, there were very clear delays in speech and social interaction, so my husband and I decided to take him to a developmental pediatrician. No blood was drawn. No lab test was conducted. There was a checklist though. My husband and I were interviewed, and then, finally, the doctor assessed our boy through play. An hour or so later, we had a diagnosis: he exhibited developmental progress of a 1.5-year-old and manifested autistic behavior.

When I finally had that official confirmation, I spent a whole lot of time in denial and in ignorance. I thought we could beat autism. We would therapy the heck out of our boy so he’d get caught up in areas wherein he exhibited delay. I would make it my main mission in life and would not rest until my son was developmentally caught-up.

Them’s fighting words. The fervor, however, fizzled as my plate teetered with all my other responsibilities. I was working, nursing an infant, homeschooling, doing what I could so the house didn’t completely fall apart… The solid effort I imagined putting in to power through the challenge I had such a laughably simplistic view of never materialized.

It wasn’t just my pitiful effort to the initial intent to railroad autism out of our lives; it was autism itself. There’s a name for it, but, oh wow, what an unknown entity it remains. The more you try to understand, the more you see that you can’t really fully know. That spectrum is a jumble of overlapping variables. The compartments are but an illusion. Expectations are not encouraged.

Still, we had to do something. We followed expert instruction and sent our boy to occupational and speech therapy twice a week for over a year. Unfortunately, results were minimal. While it’s true that we sucked at supplementing therapy at home, I just felt in my gut that this wasn’t the right approach for helping our son.

He had some good therapists, usually the older and more experienced ones, and he had some who were unsatisfactory. For instance, one was always rushing through the session and ending it with 10 to 15 minutes more to spare. That was obviously a great way to not give us value for our money, so I requested a different therapist after I’d noted the pattern.

Another therapist frequently gave negative feedback on my boy’s performance. When I got to observe a session with him, I noticed that he spent a lot of time on massage that was supposed to calm my son down. That showed itself to be a problem. First, I’m not comfortable paying occupational therapy fees for sessions that were half-massage. Second, he was using a product that I hadn’t approved of. My son has very sensitive skin and many products, even the hypoallergenic baby variety, make him itch. Third, all that massage made my boy sleepy. No wonder he was cranky and reluctant to perform.

This same therapist also asked me about play, and I replied that my son was really taken with straws. That gave him a pause, and with a look of concerned censure, he informed me that that was not developmentally appropriate. At that time, all I could do was shoot him a confused WTH look. “Duuuuuuuude, are you aware that you’re dealing with kids who were sent to you precisely because of their developmental delays?” In retrospect, there were other red flags I’d caught from that conversation. He just didn’t seem to know much about autism, so we decided that one wasn’t getting our hard-earned money either.

And then there was the front desk clerk. There was a time when I picked up my son a couple of minutes late. Unfortunately, this was during the time of the therapist who liked to cut her sessions short, so it’s possible that my son had already been waiting 10 or more minutes. I was amazed to see my boy sitting quietly beside her. That’s pretty much unheard of. He’s not one to sit still without something truly fascinating engaging his attention, and even then, he’d still feel the urge to move around. As we walked to the car, I noticed that my son was upset – not meltdown-upset, but more timid-upset, something also quite unheard of. The alarm bells began clanging in my head. I didn’t know how to find out if she’d bullied my child in any way to make him stay put, but I resolved to keep my eye on her and to never be late ever again.

After more than a year in, we didn’t see any marked difference in our child. His therapists would eagerly report his progress, saying now he could do or say this or that, and I’d have to pop their excited bubble and say that he could already do those things even before. I don’t mean to deprive them of any credit at all because there were some new things he did learn, but in my mind, I’m wondering if they could be attributed more to natural progression than anything else.

In the end, we decided to pull him out from the center and regroup. It was temporary at that time, but now I’m pretty sure we’re not going to use that place again. While in therapy hiatus, I’m researching all I can and trying out different approaches that speak to me. ABA, which was what the center practiced, didn’t feel right to me. If it were a medical treatment, I’d call it invasive. I’m always one for a more holistic and gentler approach. In autism, Son-Rise seems to fit that bill. The program’s crazy expensive, but I plan to order the starter kit. If it brings forth signs of the miracle I’ve been praying for, then we’ll try to raise funds for the intensive program, which includes staying in Massachusetts for a short period of time.

Besides therapy options, I’m also looking into diets we could try. GFCF (gluten-free, casein-free) seems to be easier than the Feingold one. All those natural salicylate restrictions threw me, but I might give it a whirl if others don’t make any difference. I’ll probably begin with the easiest diet and hopefully it will already work wonders so I don’t have to try anything else.

For now, this is my contribution to the autism awareness cause. Some contribution. It’s purely anecdotal.  It’s rough and random. Any comfort or enlightenment derived from it is unintentional. I don’t want to pretend any wisdom on my part. I don’t want to pretend to have already come to terms with my son’s autism. I still want it gone.

I know the “right” attitude to have, but if I’m not feeling it, I’m not going to pretend otherwise. Does this mean that I’m not fully loving my son because I want his autism gone? No. He is loved and cherished no matter what, but it’s because I love him so much that I don’t want him to suffer through the challenges the condition brings. If your child had a disorder, wouldn’t you just rather he didn’t have it, whatever it might be? It’s not about being realistic, but about your heart’s desire. After all, I believe in a God who makes all things possible, so I’m not going to put a limit on what I can hope for. In the meantime, we do what we can to make the best of our situation.

Through it all, I pray. Despite the emotional and mental roller coaster ride, I find rest in the fact that nobody loves my child as much as the Lord does. Autism is just another symptom of this fallen world, but I trust God’s love for us to be perfect despite our imperfections. His hand is on our family. I don’t know what to expect from our journey with autism, but I know to expect goodness, faithfulness, and wonderful works from God.

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