Being on this autism journey for a few years now, I’ve learned to guard my heart when it comes to those tough moments. Those moments where I am faced with the reality of what our lives are. For example, if I’m going to a place where there will be kids, I remind myself that I will see children, many much younger than my monkey, who most likely will be talking and doing things that my monkey is unable to do. Before these events, I will remind myself that I will see these things and to know that we are going to be okay. I get my shield ready.
But there are those times that I am not prepared, and it catches me off guard, and it feels as if daggers are sent thru my heart. If I’m at work and someone brought their kid to the office (it is pretty unusual to see children there), it’s unexpected. I don’t have time to process this thoroughly. I get caught off guard. In those moments, I can’t help but compare my child to theirs. I can’t help but wonder what my son would be like if he’d be able to talk, to carry a conversation. Would he be like my daughter that talks nonstop about her day? Or would he be more reserved, where I’d have to pull information from him? How would it feel to not depend on teachers to tell me how his days went? Or what he ate at school? How would it feel to have him ask me if he could go to a friend’s house to play? Or to take him to practice for a sports team he’s in?
I’ve talked about how these are daily inner struggles that I have. And I have learned to guard my heart, and to try to prepare myself for those tough moments. For example, I have realized one thing I need to do is to not look at my son’s report card. I know how he is doing. I know that seeing him being measured with kids his age is going to be tough. I know that he is not passing the check off list of counting to 50 or saying his ABCs or writing his name. These reports are worthless to me since he is not near the expectations of where he is expected to be. He has his own successes, ones that are not measured in a report card. Also, I’ve learned to stop looking at strangers’ facial expressions when my son makes noises in public. I’ve learned to be on constant guard and to try to avoid those hurtful pitfalls.
Except many times, these moments are unpredictable. And when they hit, I find myself in this hole of loneliness. Where the questions don’t stop of ‘Why’?
And many times, I have to take longer bathroom breaks to get back my composure at work. Sometimes if I’m in public, I am able to file these feelings away, knowing that it’s not the right time. We’ll deal with this later. And sometimes the later parts are at home in my shower, where no one can hear.
And the truth is the guilt is the hard part to process. The guilt of feeling this way. The guilt of feeling as if my child isn’t enough. The guilt of feeling that I don’t love my child thoroughly, or else I wouldn’t feel like this. The guilt of comparing children, the guilt of questioning why my son isn’t up to society’s standards.
The guilt of not being a better mom.
I know I am blessed. I see many other special needs moms & dads that do this on their own. I have read the statistics on special needs parents and the high divorce rate. I have a wonderful family, that loves my son. And I know that we are lucky. I know my son has resources that many don’t have. I know I should say thank you. So why do I fall into these holes of pity? Why is it that I keep riding this never-ending roller coaster of emotions?
I know its human nature to want what we don’t have. To want what others have. I’ve felt this before my son was born. Thinking that someone’s car is nice, or they have nice shoes. But this is different. This want is different. I have never felt a longing like this before. I have never felt this strong desire towards my son. The depths of want is so deep and strong that I can’t put into words. My words fall short of expressing my hurt.
I know this is part of the journey. I know that there are days that I will overcome it and there are days that I will lose.
And on those days that I feel that I am losing the battle, I will look deep in my soul to remind myself the beauty that my son is. And know that tomorrow is a different day with new beginnings.
The great lesson I have taken in this journey. That it is okay to cry. It is okay to hurt.
We will move forward. It may just take a little longer. But we will get there.
As long as I don’t stay stuck in the hole, as long as I come up for air, this is okay.
We are okay.
Photo source: Brave Girls Club