How Much Fight Do I Have to Have in Me?

I think this is one thing that special needs parents understand, and no one else does.

How much fight, as a parent, am I expected to have in me?

How much fight as a human being?

Every day there is a sadness inside me that mourns the life my son could have had if he weren’t autistic. Every day I look at him and marvel at how utterly perfect he is in every way.

Maybe I think he’s perfect because I’m his mother and it’s a biological thing.

Maybe he’s just perfect and I’m blessed that I got the chance to witness perfection in my lifetime.

But how much fight am I supposed to have in me, to get him to a place where he can become a functioning member of society where he will, one day, be able to take care of himself? Gain higher education, get a job, have his own place to live, go grocery shopping for himself. The little things in life that we all get to have and do, that he might not be able to on his own. Without help.

Everyone tells me that "of course he’ll be able to care for himself when he gets older," and I just want to punch them in the neck because Of Course that’s not a guaranteed outcome for him.

I fight every day.

To understand how he thinks.

To predict how he will act and/or react to literally every situation.

To figure out why he behaves the way he does, just so I can understand him a little better, help him learn a little more, make life a little easier for him to get through and understand.

Every moment I spend with him is a teachable moment.

Every. Single. Moment.

Every single thing I do with him is me teaching him something and hoping, in his own way, he’s absorbing the lesson.

I think this is one thing that special needs parents understand, and no one else does.

Strangers certainly don’t. And by strangers, I mean professionals, teachers, daycare workers, assorted administrators. They have no idea how hard I fight for my son, much harder than I’ve ever had to fight, even for myself.

Some get it. The good ones who have dedicated their lives and careers to learning how to work with special needs children. But these magical beings are too few and far between.

Every day I have to fight to teach him how to be a good person, a kind person, a person who can experience the world in a happy and safe way. Something as simple as acknowledging another human being can be hard for him. So I fight to figure out a way that he can do that in a manner that is comfortable for him, and won’t leave a kind stranger in the elevator confused as to why this seemingly happy 6-year-old won’t say “Hi” back to them when they’re just trying to be friendly.

Every day I have to fight for simple services that I’ve never had to beg for with my other son. Something as simple as a free after-school program, open to all, is not open to my son, because funding limits prevent the professionals from training to work with special needs children. So we get no care. No support. Not even a second thought. Nothing.

Why do I have to fight so hard for my son to just have a life, like everyone else?

Why do I have to attend meeting after meeting (after meeting), just to tell yet another person his story, so they can do what they are supposed to have been trained to do before we even came into the picture?

Why did the world turn me into a warrior for my son, when his short lifetime could have been perfectly normal, if the rest of the world could have just woken up, and listened to every other warrior mom who came before me?

Why do I have to fight so hard?

It’s not fair.

And I’m angry about it.

And I hate being angry all the damn time.

But here we are.

And so you get the warrior mom version of me, every time we meet. Because I have no choice.

Because you made me this way.

So enjoy.

And watch out.

Because I will fight for my son with every fiber of my being.

Even when I’m too tired to fight anymore.

You won’t win.

We will.

I will.

My son will.

Believe that.

Previously published at Preshus Me.




RELATED: What Is It Like To Have Autism?

Sleep deprived working mother of 2 boys (one on the Autism spectrum). A blogger since 2004, I’ve been chronicling my life through many changes, from career woman, to girlfriend, to wife to mother and beyond. Now living on a “my child is in daycare and all my money goes to paying fees” budget. Ask me how fun that is. It has been a long and winding road and blogging gives me a way to explore and share all the things that make me happy. It also gives me a way to record the little things in life because my memory isn’t what it used to be. Sleep deprivation is a bitch.