The Never-Ending Cycle of Adjustments

Often I think life is so unfair. Why did my child get autism and virtually no one else I know has a child with it?

My son was diagnosed with autism at 2 years 10 months, right before he was about to age out of First Steps, Kentucky’s early intervention system.

At the time, I was pregnant with my second son and scared to death my baby would be diagnosed eventually with autism as well.

I was one of the “lucky” ones, though, I guess, because he was identified early and was able to receive early intervention.

My close friend with a son the same age had him evaluated for physical therapy because of his delay in walking and he also qualified for speech therapy. I thought I should look into this speech thing since my son wasn’t speaking any more than hers and he was 2 months older.

Thank goodness I did!

The day the woman came to my house to observe my son, she was in shock at how wild my 18 month old boy was. I’m a teacher, having worked with children for over 10 years at the time, I didn’t see anything wrong with him. I just figured this was the norm for little boys.

Apparently, I was very wrong.

My son qualified for almost every service that First Steps offered: speech, OT, PT, behavior therapy and social skills groups.

I seriously had no idea that this was even a thing before entering into the world of early intervention.

Over the next 18 months my son had weekly sessions with several therapists. These people came into my home as strangers and left as close friends, almost family. They were my lifeline since I had no one else that experienced what I was going through with my young child.

I yearned for their advice, help and assurance that my sweet little boy would one day be okay.

Finally the day came where I was approached to have him evaluated by a psychologist. He wasn’t making enough growth through therapy.

No one would straight out say what I know they were all thinking, the A word. Autism. All the signs were there, speech delay, toe walking, sensory issues, fixations and little to no eye contact.

I’ll never forget sitting in my living room, 6 months pregnant, watching my young child get assessed for autism.

I wanted to answer everything for him and make excuses as to why he wasn’t doing something asked in the assessment. “He’s just tired, I saw him do that yesterday.”

It took over 2 weeks to get the results, but I knew. “Your son has autism.”

The psychologist tried to soften the blow, telling me that this would open up a whole world of options for him. He can continue to get the help he needs.

Those words, “Your son has autism,” was all I heard over and over again.

That was almost ten years ago.

I remember asking if there were any support groups, no one really answered me. At the time there was really nothing, I was on my own lonely island of autism.

Over the years I have found a small community of autism moms and online support, but nothing was more isolating than those early years after the diagnosis. I was embarrassed to tell anyone, hoping I could just hide it a little longer, it was just so hard to accept, it still is…

My life these days are still a series of highs and lows depending on how my son is doing.

He still fixates on things and these fixations can last a long time and be very strong and disrupting to our lives. I live with my phone in my hand, constantly worried I’m going to get a call that my son is having a hard day. I get those calls every now and then and they are very stressful and upsetting.

Other times, I can celebrate all of my son’s successes.

He is mainstreamed full time in a high performing public school. He is doing well academically and plays violin in the school orchestra. He is studying for his Bar Mitzvah which will be in 18 months. He loves to learn about religion, history and has lately taken an interest in politics.

I love my son and absolutely adore him.

He can be very sweet and interesting, but he is also very challenging.

His perseverance is amazing. When he sets his mind on something, nothing gets in his way until he accomplishes it. But, if he refuses to do something, nothing will change that either.

Adolescence is quickly approaching and with that a whole new set of challenges are in store for any family, but this can mean extreme changes for children on the autism spectrum. I am just going to take everything day by day, I cannot even fathom what is awaiting me.

I’m still constantly adjusting, learning, worrying and accepting. Every milestone is a celebration and yet I grieve for what we are both missing out on and the kid that could’ve been.

Written by, Tara Schneider

I’m a mom of 2 boys, one with autism and one with ADHD. I’ve been a teacher for 21 years. When I retire I plan on working towards supporting families with special needs children so they feel the loneliness and isolation I encountered those first years after my son’s diagnosis.

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