The Grief Is Real

October 6, 2019October 11, 2019 Joel Manzer

I don’t want to sound harsh. In fact, it’s taken many years to gather my thoughts on this subject as it can be a point of contention among many within the autism community.

Parenting a child with Autism is very challenging, and at moments full of struggle and grief. We hear it and we can see the mom’s cry on a youtube video and feel empathy for the struggle. We, as parents, get chastised for being the voice of our kids by those who are autistic because we may often not get things right.

We often get the stares of other parents and adults for having a child that doesn’t conform to societal norms, and acts out of sensory issues because that’s the only way that they can communicate. Sometimes those stares come with well meaning intentions on how to ‘fix’ my child… what resources could benefit him the most.

Now, I’m not looking for sympathy. Nor am I looking for any praise. I am not an inspiring person. I’m just a dad who struggles with his own role as a special needs parent. This struggle has been going on now for over 16 years.

Some of it is just being a dad. As all dad’s wonder if they ever do right by their own kids. After all, we may not admit it, but many of us dad’s would go around the world and back again to make our kids smile – even if it means we get no credit for it.

Other times the struggles present themselves because I don’t think I’ll ever know what my son’s passion is… what he desires to share with the world, as my own son’s ability to express himself forces me to reflect upon my own actions time and time again. I’ve had to learn, the hard way, that although my son doesn’t speak a lot of words, he does have a lot more to say with just the look on his face. In all honesty, I truly believe he got that trait from his mother… which makes me smile even more.

Sure, I rejoice at his laughter, his happiness, his joy. Of course I get excited when he sees me and gives me a big hug. I also recognize that he sees me when I’m hurt or sad and wants to put his hand on my shoulder to just mean, “I gotcha, dad, it’s cool.”

Autism does that for a parent. It forces us to think. It encourages us as parents to admit that we aren’t enough. And you know what, that should be ok. But let’s face it, we often feel that it’s never enough.

The sad truth is, grief is ever present in parenting a special needs child. And like the loss of a loved one, that grief comes in waves – often when normal things come about.

There are times when I sit alone on the front porch of my home, watching the neighborhood kids at play while my son is asleep for his afternoon nap. They play a simple game of hide and seek, and chase each other and laugh and play.

There are times when I see my nephew at a baseball game pitching his heart out, or my friends and their kids adventure off to see a movie or even just go to a grocery store. I often see these moments when scrolling through newsfeeds on Facebook or Instagram. I smile and appreciate their accomplishments or experiences. But knowing that many of those moments just won’t happen for me right now.

These normal everyday moments I take in, and have to accept the fact that my own son is brave to get on the bus daily to go to school, in a world that doesn’t understand him… and still thrives and pushes through his day as though it is HIS normal. He lives in his world, and we are just a part of it.

You see, as a parent, we struggle between worlds. The world we all live in on a daily basis as part of society…. and the world our kid shows us. A simpler, kinder, often more fulfilling world where things are more in order than we could ever make it.

Being a parent means being a bridge between these two worlds, and it’s not a road for the faint of heart. It’s not easy translating his actions and own way of communicating with everyone else… but we do it, because we want the world to see how amazing he truly is.

However, year after year the reminders of what could’ve been creep out of nowhere to say that ‘this isn’t you’ or ‘this never will be you’. These are reminders of those expectations as a parent that will forever be lost… or changed expectations because the road we live as special needs parents is much different than most other parents.

Battles with family and friends who don’t understand come and go, only to revisit and be served as reminders that this walk is often alone. Friends often distance themselves, and family may often not want to visit and would rather you visit with them… not understanding what that really means.

The explanation to the school system where we have to write the same documents year after year because, for whatever reason, they don’t read the file of the previous year and things haven’t changed in 12 weeks. Or the new neighbor you have to run out and meet looks at you strange because you need to make sure that if there is a kid that doesn’t speak well verbally who lives at your home and is acting different runs over to their house is probably yours… or if there is a meltdown occurring please not to worry, he’s going through a lot at the moment.

For those parents who have a partner in this journey, we are a lucky bunch. We have each other to tag team on daily issues, but often we relish in moments NOT always talking about autism or our kids. We want to have fun like anyone else. For those who are going through this, essentially alone, you have to do far more in communication with your family and community to create that safe environment for your kid than we do.

But these moments of grief strike us when we least expect it. Like at the end of the day, when all went well. No meltdowns, no sensory issues, no stimming, and he falls asleep taking a nap. While I’m on my front porch, watching the neighborhood kids play a simple game of hide and seek.

Now I want you to understand that grief isn’t a bad thing. In fact, it’s an entirely normal thing. Accepting that it’s real and that these moments come and go is also a good thing…. and is a healthy thing.

I’m sharing this thought with you because I know that as a parent of an autistic child, it was never shared with me. I’m also sharing this to help professionals and families who may have a relative who is autistic understand this part of parenting.

What can you do? Be present and listen, and feel free to ask us about other things beyond the subject of autism.

One more thing that I learned from my son…. Enjoy the moment and have some fun. It’s gonna be ok…