How Our Family Is Fumbling Through The Autism Spectrum

I’m an autism mom. My son was diagnosed at the age of 2. By then it wasn’t a surprise. There was no denial or shock when it happened. I already knew. We eased into the diagnosis, so to speak. There were the monthly checkups, then the quarterly. Also the ASQ questionnaires (boy, do I despise those) and a pediatrician who saw many of the signs.

Looking back, there were a few early warning signs. Through his infancy, I noticed a lack of eye contact; when I held him, he would look at the picture on the wall behind me or at the ceiling fan. Still, at the time, it was nothing I was overly concerned about.

At six months, we hit a roadblock. It seemed my son had an aversion to (of all things)…FOOD. We tried everything to get him to eat. We tried all kinds of food. We tried singing and dancing, TV on and TV Off, in his high chair or on the floor. Hoping he may pick something up we set out for him, we tried free-range eating. Force feeding was a BIG NO NO. Even making him just touch the food was murder. There was crying, pleading, and lastly just losing it. We had an estimated 5% success rate when it came to feeding him. I will never know why he chose to eat that 5% of the time with no fight and no screaming. I couldn’t figure it out. I couldn’t fix it. This was my first child. I was failing. They were supposed to WANT to eat, right?!

The stress, worry, and depression were mentally debilitating for me. Eventually, I reached a point of acceptance; I had no choice, I couldn’t continue on the path I was on. I no longer lost my cool at feeding times; I accepted the fact that this was a situation I could not control. Hope wasn’t lost, we continued to try, but my expectations were set to the wind. Letting go of “this is how this is supposed to work” and striving to achieve “normal” was freeing for me. It allowed me to be a better and stronger mother.

By his 12-month checkup, the ASQ questionnaire was brutal: “Does your baby imitate sounds? Does your baby say simple words such as Mama and Dada? Follow simple commands?” The “no” answers in some areas began to far outweigh the “yes.” It was crystal clear that something wasn’t right. That was the day our pediatrician uttered the words “possible autism.” I cried, of course. It was unfamiliar and unexpected territory. I was worried for my son’s future. I feared I wouldn’t be able to help him. But the signs were pointing that way. We began early intervention. In our hometown, that involved a speech therapist and occupational therapist coming to visit for one hour each, one time a month.

We began the hunt for private therapy options. Those options were lacking to say the least, the handful of available providers all had waiting lists a mile long. Eventually I found a clinic one hour north of us. We drove there once a week for occupational therapy (OT) appointments until openings became available closer to home.

One week after my son’s second birthday, he was officially diagnosed with autism. I had my “why?” I now had direction and more resources (however slight) at my disposal to be able to get my son the therapy he needed. I didn’t see it as something to be ashamed of and hide. Why would I want to? What purpose would that serve? No, I was not ashamed, I was driven.

I began trying to learn anything and everything I could about ASD. I ordered books, manuals even (although sometimes I question my sanity in regards to this). I looked for community support. The few options I found at the time were disappointing. I needed mothers in similar situations. I needed mothers in similar situations. I needed to talk to someone who wouldn’t look at me like I had three heads when I described what we were going through. I needed someone who understood.

I joined a few autism support mom groups on social media. These groups were…..interesting. I was looking for positivity and support, a way to not feel so alone in this. These groups felt more like battlegrounds with sparse sprinkles of kindness interspersed. The unyielding aggressive nature in which “advice” was hurled around was oppressive. In spite of all this, I did learn a few things. It was a way for me to see the diversity of children with autism. I saw the spectrum in all its imperfection. I saw its beauty, ugliness, and everything in between. I knew I was not alone. Unfortunately, the negativity within these groups became draining and I disconnected from all of them. Only, now I knew I was not alone.

As time progressed, social outings became more stressful. Having never been a social person to begin with, my anxiety in these situations increased three fold. I would have to calmly explain to people who insisted my son was ignoring them that no, he is not, in fact, ignoring you. Yes, he can hear. Yes, we have had his hearing checked. Twice. I would have to plaster a smile on and listen to well-intentioned advice. It was exhausting. Still, there were those willing to listen. Those who tried to understand and help in any way they could and for those few, I am forever grateful.

I began to realize that too few people know what autism really is. Too many believed that they understood autism after they met one autistic child. No. The spectrum is vast. There is no set of all-encompassing characteristics definitive of autism. It can’t be defined it in a sentence or two. I see those definitions as clinical, cold, and superficial; they are microbial specks in autism land. You can’t put it in a box (in fact the thought of even trying is laughable). You have to live it, see it, swim in it, to even begin to understand it.

At a glance, my child appears to be like any other toddler. He is always smiling and his laugh is contagious. He is smart, sweet, and affectionate. He loves trains, cars, helicopters, and all things that go. He loves being outside. He fake cries when he doesn’t get his way. He thinks he is the boss. And he is so much more.

Enter: autism. He loves spinning: pinwheels, ceiling fans (don’t even think about skipping the fan department at the home improvement store), and physically spinning. He has only word: “bye” (insert strong southern accent), yet, he always manages to get his point across. He has slept through the night approximately 15 times since he came into this world. And still, he wakes up smiling and giggling every morning. He feels, sees, hears, and tastes so much differently than any neurotypical child does.

Then there is our “dark side” of the spectrum: all things feeding. We have a kitchen cabinet that spews sippy cups almost every time you open it. All but one induces gagging and occasionally even vomiting from the texture of the spout. His diet consists of cheese puffs, veggie straws, yogurt melts, and a few other similarly textured foods. Even these he eats in tiny amounts. A full nutrition toddler formula sustains him. Most foods in their natural form and even those that are not are offensive to him. If it’s wet or squishy, you can throw in the towel. In his world, they are wrong; his senses cannot tolerate them. After almost two years of feeding-based occupational therapy, we have progressed to touching more and more foods. It is slow and frustrating. But it is also progress.

My son cannot survive off of toddler formula for the rest of his life. Will he ever eat? If he doesn’t, what will we do? The questions are endless. The stress and fear for his health and future are endless. Yet, I choose to have hope. To remain patient and to do everything in my power to help him progress to where he needs to be. It’s all I have. I cross the hard roads as they come. Its all I can do.

Autism affects all aspects of life. My story is mild compared to many I have heard, but the strife and sometimes heartbreak are still there. There are mothers in tears because she can’t calm her child. I see the feelings of defeat when it gets to be unbearable for some.

Our situations are endless. We have to fight for the services our children need. Maybe they aren’t available or they aren’t affordable. Some even have to fight significant others in that are in denial that those services are even needed (fortunately, my husband has been wonderful through it all). Working full time and trying to schedule the therapy appointments, doctors’ appointments, and swimming lessons is like doing a balancing act in the rapids. Some have to fight the schools to do what is right for their children and provide services the child needs to succeed. We fight doctors. We make hard decisions about whether to have that surgery, or do that test, or take that medication.

We fight for our children. It seems the fight is endless, but still, we fight. We never lose hope. Never stop trying. Our children are our hearts, our light. We are there to keep that light burning bright.