The Silent Worries Behind My Achievements As A Special Needs Parent

I talk a lot about being positive. To be honest, though, I’m not entirely sure what that means. I know that it’s about finding bright sides and silver linings with an upbeat attitude. In that sense, it is something I embrace.

People read my words, especially as it pertains to my son with autism, and remark about how much positivity he and I share. The truth is, I definitely had to work my way up to certain understandings. When Lucas was still a baby, struggling to reach all the milestones that the thick books said he should, I battled a silent, yet constant, inner fear. My head swirled with “what if”s for his life and concerns about the judgements passed by those around me for his lack of progress. Every confused stare from a family member left hanging on a high five and all the questions about whether “he has said anything yet” hit me hard and often.

What if it was my fault? Either through nature or nurture, maybe I’m the reason for his tougher lot in life. Maybe I caused, and still cause, his lack of speech myself. Family and friends, some well-meaning and some just awful human beings, posed those very questions to me at times. It made me hate myself to just think about it.

This stiff upper lip I display today developed with time. It came from watching him grow, learn, and find his place in the world. Language still hasn’t come and, there is still a long and probably unfinishable road ahead. However, certain things that were impossible for a baby Lucas to do started to become feasible with age. Whether it was sitting for a show or letting me cut his hair, my son was becoming his own person.

I pointed that out last night, when I took him and my daughter out to the ol’ California Pizza Kitchen. Despite hunger and a long wait, Lucas politely sat, without any iPad or electronic toy, for the duration of the meal. I pointed it out to his sister.

Do you see this? Remember when we couldn’t take him out to a restaurant like this because he would try to escape or scream out or fall asleep? Remember? Remember he fell asleep on the table at Friendly’s? Look. Look how good he is!

Less impressed than me, but impressed nonetheless, she nodded in agreement. He has a lot to be proud of and we have a lot to be proud of him for.

The happy train, while not running as often and strongly as some might assume, is still real around my head. Many days, Lucas is my favorite person to be around. For all the communication pitfalls we hit or messes he makes me clean, he is one of the easiest and cheerful companions I can have by my side. We share unspoken expressions that elicit laughter and his glowing smile for me, even when I’ve done nothing to earn it, makes me feel like the most special person in the world. It’s all good.

Actually, it’s mostly good. To be honest, there are definite down times and almost all of them are due to me. The love I have for my child is so massive that, while it is the cause of my pride, it’s also the anchor of worry that hangs around my neck.

Sometimes I vocalize them when we are alone. I’ll walk into the kitchen to find that he’s just gone into the fridge and stuck his hand into an uncooked platter of spinach artichoke dip waiting to be made for dinner. There are handprints all over the door, his pants, and face. I stand there and, to put it mildly, I’m deflated.

Lucas, what are you doing? That’s not food to eat now! It’s not even cooked! You don’t go into the fridge. No, no, no!

He’ll take his finger and wag it back and forth to show me that he understands “no”. Still, I know that if I were to leave the room in that moment, he’d dive headfirst back into the vat of mayo, cream cheese, and vegetables again. As I wipe him, I sadly start venting.

You’re getting big, buddy. Look at you. You’re going to be grown before you know it. Then what? People aren’t going to want to clean up after this stuff. Daddy doesn’t even want to, but I love you. So I do. You have to learn to control yourself. This is not good.

My mind keeps going. My mouth follows.

I’m not going to be here forever. I worry about you.

And now, I’m bummed out. Those moments where it is just him and me, I’m more honest with myself than at any other points of my day.

Negative? Positive? Neither. The problem with all of this is that nothing I’ve said is untrue. One day I will be gone. One day he will be grown. One day, if he doesn’t learn many basic life skills – ones I talk about in this blog and ones that I don’t – he will struggle to find someone to help him. It rips me apart inside just to think about it. I know others who deal with the chronic care of a special needs adult on some level. I know I am going to be one of them.

Yet, am I positive most times? Yes. Seeing the good in my son isn’t some sort of mental “positivity” trick. It’s real. It’s about noticing the great things that are happening and the successful progress he’s making. He didn’t sit at the table nicely three years ago. Today he does. That’s not positive. That’s a fact. It’s a parental observation that, if noticed, can fill you with pride.

That doesn’t erase the concerns that, as a special needs parent, live in my head every single day. They’re the fuel that pushes me forward to teach him everything I can. Without that sense of dread that dwells in the back of my brain on a regular basis, the desperate race I run to help him reach those accomplishments might not feel so dire. Those negative feelings of worry push my positive actions of parenting.

Sometimes it kills me inside to think about them, but they’re important. Without that knot in my stomach over his future, I might not be as present today to help him climb that ladder. Am I sure that these “negative” emotions make me a better parent?

I’m positive.