Learning to Be More Open to What My Son on the Autism Spectrum Really Needs

Twelve years ago this month, I walked into our pediatrician’s office with my then-17-month-old son in tow, hoping for a prescription for reflux. I walked out shaking, crushed by our doctor’s callousness, and clutching four mis-stapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand and left the room.

He wasn’t our pediatrician much longer.

I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription, which would at least let me help him with his reflux. I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.

As they say on “Game of Thrones,” I knew nothing, Kim McCafferty.

The year was 2004, a time when Jenny McCarthy was talked about a lot in the autism community. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.

There were parents claiming the only positive outcome of this diagnosis could be a “cure.”

There were autistic advocates and parents of autistic children claiming an alternative neurology cannot and should not be “cured.”

There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk and should always be employed.

There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.

There were parents telling me not to vaccinate.

There were physicians telling me I’d better vaccinate.

There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.

There were teachers sharing with me that despite the push for it, mainstreaming might not be the most important goal regarding my son’s future education.

As I look over my list, I realize not all that much has changed in a dozen years.

I did my best by my son Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders and his adherence to having things a certain way (he would eventually receive a dual diagnosis of OCD and autism). My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.

Ultimately what I clung to to get through it all were my choices regarding Justin’s therapy, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.

I displayed my own rigid behavior regarding that information. According to studies I’d read, sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were delayed.

I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.

And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions, I might have done my son more harm than good.

After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!), I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son, he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then 22-month old might actually end up with a way to communicate his needs other than by mostly crying.

If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.

I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of 3 I wanted him to have opportunities to engage with neurotypical peers. I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.

OK, that last is still an important goal.

After four years in two different public school districts, it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience, gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school, where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight-week summer program.

I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind, I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.

And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”

But as with many things in life, I’m still a work in progress, and keeping an open mind is one goal I plan to keep.

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