Autism – The Daily Challenge

April is Autism Awareness Month. I know this. I’m a wife. I’m an author. I’m the mom of sons. I’m the mom of a child with autism. An autistic child, if you will, for he was born on the spectrum as much as he was born with brown hair with a tendency to curl and the nose that marks him as part of my genetic line.

i love a child with autismAs the parent of a child on the Autism Spectrum, I am of course “aware” of autism on an hourly basis, day after day, and will be for the rest of my life. Just as the phrase “If you’ve seen one child with autism…you’ve seen ONE child with autism,” is true, so it is also true for those of us who parent autistic children. We have many commonalities – so many! It is why, when I meet people who have children on the spectrum, I want to know if they have a support system. If they know other parents of kids on the spectrum. There is nothing like being able to talk to someone who walks your path, or one similar to your own, to help you through challenging times.

But our paths don’t always start at the same places, and we each walk at our own pace, and that’s a good thing.

For me, finding out my son was autistic was a relief. Because as his mom, I knew there was something that wasn’t normative. Something that required attention, but I didn’t know what it was. My son didn’t have a period of normal development before exhibiting signs that he was autistic. There wasn’t a time when he called me, “Mama” as an infant or anything. No time when my face brought him especial joy. No time when he gazed intently into my eyes in that way babies do when they’re getting to know you. This was not part of our shared experience. For us, our bond was built on singing with the letter “L” as a primary sound. We danced for hours in the middle of the night, waltzing in a moonlit kitchen. I stayed up with him, hour after hour, for years while we lived through his sleeping problems. I became adept at finding new ways to count sheep in rhyme and song.

autism not-a-diseaseSo knowing that there was a name for this was a relief to me. Because a “label” means there are things one can do. People who have been where I was (and am) and have suggestions for how to interpret the world for my son and interpret him to the world.

I know that for many, the label of Autistic is a frightening thing. But for this mom? It was a blessing. It gave a name to the challenges I face all the time. It meant that I could be proactive, rather than reactive, more often. It meant that I could focus on positives and rejoice.

Some days, I face the challenges with the knowledge that I am as well-prepared for the day as I can be. That I have done all I can to guide my son into as much independence as he can achieve while seeing to it that he is bolstered as needed. My goal: to show him how to be a contributing member of society insofar as his dreams and abilities enable him. Some days, I think I am meeting this responsibility with honor and grace and intelligence.

Other days…not so much. I zig when I should have zagged. I treat as “normal” something that should have been heeded as “not normal”. I slack off.  I fail the challenge of the moment in some respect.

I’m human. I’m a parent. I am not perfect. I have learned to forgive myself.

My son will always have autism. I don’t want him to be anyone other than who he is. His challenge is to face each day, knowing it will be hard. Because it is. My challenge is to help him be strong enough, capable enough to meet his day. Sometimes, he needs me to be a warm blanket when it was a hard day. Sometimes, he needs a cheerleader to assure him that his imagination produces great ideas. Sometimes, he needs Iron Mom, who can stand firm against his outbursts of anger and resentment while getting him to see the need for growth and change – someone who is more stubborn than he is. Someone who is not hurt when he says hurtful things.

He’s a child. He’s not perfect. I forgive him everything.

So yes, it is Autism Awareness Month. And being aware of autism has enriched my life immeasurably. I take greater joy in smaller happenings. I relish the challenge of interpreting what I thought I knew into a new frame of reference. I look forward to seeing my son grow from where he is now to where he’ll be by, say, NEXT April. He’s an amazing person with a fantastic headspace.

I have great kids. 🙂 The challenge is to be the best mom I can be for each of them. And it’s a challenge I face daily, just like every other parent I know.