It’s Hard to Live With a Person With Autism

At my son’s most recent educational support meeting, I went in armed with research on our rights, the legislation that entitles him to certain accommodations due to his Autism diagnosis, and literature explaining the obligations of the school district. I was ready to do battle.

I was expecting reluctance to accomodate my requests, simply because that’s what I’ve heard from so many others who have followed the same path. I had decided to go in and push for an IEP, or Individualized Education Plan, which is a legal step up from a Section 504 plan, to put it very simply.

Initially, I met with expected resistance from both teacher and principal, so I asked them why point-blank. After a little digging, it seemed that the issue was that there was simply no infrastructure for the IEP to actually make a difference. Even if my son received an IEP, they explained, all he would get was a few extra classes a week, in which he’d be pulled out of his current class and tutored.

Because he shows no academic roadblocks, this would essentially be pointless. It reminded me of my time spent in G.A.T.E. classrooms as a kid, which I viewed as simply a way to get the “Gifted and Talented” kids out of the mainstream classroom where they had already done their work and were becoming bored and disruptive. 

I shrugged and conceded that, no, I didn’t see much of a point in pushing forward if that was all that was available to him. It sounded like the district just didn’t have the infrastructure in place to give my son what he needed, and I had two options; go to war and trailblaze that infrastructure, or find it elsewhere. 

A part of me wants to do the trailblazing, to open up avenues for other mothers who might find themselves in that school district with kids who need some kind of undefinable support that can’t be measured by test scores and report cards. 

Maybe I’ve become jaded, or maybe I’ve just learned that I have to choose my battles, but that is not a road I want to go down right now. 

Right now, both I and my son deserve the path of least resistance. We deserve readily available support. So that’s not the path I’m choosing. 

What Real Empathy Feels Like

At the end of the absurdly short meeting (20 minutes for a biannual assessment of my son’s needs), the teacher and principal are hurried to return to their other obligations. Everything is always going too fast to be solved, to be properly dealt with, to be considered deeply and with care. 

It’s on the to the next test, next school event, next funding benchmark. 

But the school counselor was willing to stay behind and answer a few of my questions. I asked her what more there is I can possibly do to support my son.

I explained that he’s seeing three therapists multiple times a week, all out of pocket, and I’m still getting reports sent home almost every week about his behavior, along with getting punitive phone calls that fluster me while I’m at the office.

Was there something I was missing?

She asked, “Are you sure that you are getting enough support?”

Surprised, I reflected for a moment. And my answer was that, now that I thought about it, no. I wasn’t. 

I was so busy trying to “fix” my son’s behavior problems that I had forgotten to look at myself.

“It’s really hard to live with something with autism,” she continued. It felt like someone had given me permission to breath for the first time in a year. 

“Yes, it really, really is,” I replied. 

I love my son deeply, but it is exhausting to be around him every single day. He can have a very rigid way of doing things and can have meltdowns–or more recently, swearing fits–if things aren’t as expected. Although this is mostly because of a cognitive difference, sometimes it feels like living with a little tyrant.

The school counselor’s comment made me realize how guilty I had been feeling for feeling this way about my little boy. And her empathy made me feel like I was a million times lighter than before. 

Feeling Bad for Feeling Bad

I went home giving myself permission to recognize that living with an autistic child can be hard. It is emotionally taxing.

Suddenly it seemed okay that I always feel tired and reluctant to play at the end of my work day and long commute, that I get nervous that I might break a “rule” imposed in what might otherwise be a fun, relaxing game and cause a meltdown. It made sense. There wasn’t something wrong with me, and I wasn’t being a lazy or checked out parent.

I realized that feeling badly for being a bit reluctant to pour my energy into my son’s high needs doesn’t make me a bad parent. It also occurred to me that while negative feelings are totally natural, that feeling bad for feeling bad is suffering.

I accept that sometimes I wish my son was more chill, more calm, more laissez-faire. I also accept that sometimes I feel completely blessed that my son is so witty, so insightful, so over the top passionate, and so unique. 

Taking the good with the bad is a part of life, especially when your life involves parenting with unconditional love. Loving my son unconditionally doesn’t mean I have to feel good about it every second. It simply means I accept him for who he is, respect my own boundaries and energy levels, and let us both be. 

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