The Special Path That We Have Walked

Nothing was ever easy with Parker.  He was a sensitive baby, even during pregnancy.  He would kick at the seatbelt, or when I leaned on a counter, because he didn’t like the pressure on my belly.  The hypersensitivity continued after birth as he didn’t want to be cuddled or held.  He was happiest lying alone in his crib.  Worst of all, he wouldn’t look into my eyes.  His older brother, Bryce, had looked deeply into my eyes from the moment he was born.  It was the foundation of our parent-child connection.  Little did I know, this aversion to eye contact would become a theme to the special path that we have walked.

Parker wasn’t looking to connect with his mother.

Within ten minutes of being born, Parker was vomiting. He didn’t stop for six months.  By the time he was four months old he was showing signs of delays and failure to thrive.  He was as beautiful as could be with a perfect head, and that head balanced delicately atop a toothpick of a body.  His body shunted any nutrients he could keep down to his brain, so while his head got bigger, the rest of his body starved.  

When Parker was nine months old his stomach was biopsied and he was found to be allergic to all proteins, mainly cow milk, goat milk, and breast milk.  My mother’s milk was toxic to my son’s body.  I stopped breast-feeding and found a formula that he could handle.  It wasn’t a perfect solution, but it allowed him to begin catching up.  Even at nine months he wasn’t sitting up on his own or crawling.  He cooed with the voice of a cigarette smoker, though, his esophagus excoriated because of all the vomiting.  His voice is still husky today.

Pretty Strange Days

Ryan is the only father Parker has ever known.  He was nine months old when they met, and we were married four months later.  We had another son within a year and named him Apollo.  He didn’t make eye contact either.

2010 was pretty strange days.  Parker was five and Apollo was three and neither were behaving like other children. Simple commands eluded them because their attention was on anything but the people trying to engage with them.  

As I sat at Children’s Autism Center, I was not at all surprised to learn that Parker had autism.  Two years later, what we already knew was confirmed as well:  Apollo had autism, also.  

This was highly abnormal, two boys with different fathers who shared the same chromosomal abnormalities.

So Your Children are Autistic. Now What?

There’s a weird thing that happens when you get an autism diagnosis.  Seattle is a front-runner in research for all kinds of things, including autism.  Nonetheless, here’s how the conversation went:

“Here’s your (gigantic) book of resources.  You should probably get involved with this support group.  Prepare that he will live with you forever.  Good luck.”

After Apollo’s autism diagnosis, the following dialogue was added:

“Your boys are unlike any others.  Would you be interested in having us study them?”

I appreciate that research has led to great advancements in medicine and autism, but we declined.  We had four children by this time, including a baby girl. Bryce, our oldest, was exhibiting extreme ADHD symptoms.  We simply couldn’t devote the time or bandwidth to a small portion of our children while trying to raise a family.  I declined all outside treatments and therapies.

Instead, I read everything I could get my hands on to learn how to support my family.  We began to focus on social skills, and we haven’t stopped.  Our diet changed to gluten and dairy free.  We did our best to keep a simple, consistent schedule.  

Honestly, none of it was a magic pill.

After further testing, it turned out that the other two children had similar chromosomal abnormalities as the boys. While not as severe, all four of our children had a genetic anomaly in common — a portion of mom’s material was duplicated on chromosome 15. This subtly completed the circle and foretold our purpose.  

The special needs would come to define us.

A Lonely Time

Things were very rough for about a decade.  It was embarrassing to take the entire brood out in public because everyone was out of control.  People have a hard time with loud, squirrely children so I just stopped taking them anywhere.  It didn’t help that they looked normal, so the grace that is given to special needs parents was absent.  We were simply bad parents doing a crappy job as far as anyone could tell.  It was humbling and humiliating.

It was also hard for Ryan and I to establish strong friendships with other parents, as our children were weird and difficult to understand.  They couldn’t listen to instructors, coaches, etc., which pretty much eliminated sports, music, dance, and the community that goes with the parenting lifestyle.  It was truly a lonely time. Having to explain to anyone why your kid is saying jerky things, or melting down in public, or still wetting themselves, or not making sense, or not following basic instruction, is torturous over time.

It was easier to just keep the madness to ourselves.

Mama, I Understand

In time it got better.  Ten years later we feel like we’re finally on the ball.  It has taken a lot of patience. Expectations had to be altered. This is hard for Ryan.  

Everyone is learning from this.

So Mama… if you are struggling with your little one(s) and you’re lonely because no one seems to understand what you are going through, I understand.  

If you feel like you are drowning, I understand.

If you’re worried that it will never get better, I understand.

It does get better.  

If I have learned anything, it is this:  The only person you can change is yourself.  These autistic kids are fine, beautiful as they are.  It is us that need to change.

I hope and pray that our experiences can help you on your way.  God bless, y’all.

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