It’s hard to imagine what life was really like before Mason. I mean I remember it but it also seems like he has always been with me. 2 years ago I would’ve never imagined that we would be where we are. I never thought developmental delays or autism would be part of our story.
But it is.
January 9th was Mason’s actual birthday and its also the day that he had his 2 year old check up. It was at this check up that we had his first screening for Autism. I know a lot of people think that he already has it but we’ve never gotten a medical diagnosis for that. The only classification that he has had is a speech delay.
He failed this screening (meaning he likely has autism) and all the balls I’ve been trying to keep in the air seemed to really just shatter around me. I know that this diagnosis has always been in the back of our minds as a possibility but I honestly had gotten my hopes up that this wasn’t his reality. It was this hope that was holding me together. The speech delay felt conquerable, it felt like a mountain we could move. Autism just screams forever to me. No matter how much he improves, this is something that he will always have. This doesn’t end.
What do you do when you think you’re in a small battle but you’re really in a War? How do you continue to fight when you’re exhausted?
It’s exhausting to keep smiling for your friends as they discuss their typical child’s progression. It’s not that you don’t care or want to hear it, because you do but it just highlights the differences in your reality. Plus you don’t want people walking on eggshells around you either. And what about not feeling comfortable talking about the progress your child IS making because it seems like such a small thing. Let me tell you that it was gotdamn difficult to get Mason to drink through a straw or sit down at a table but he did it and I wanted to scream it from the mountains. The only problem is that there is no one around to hear it.
Living far from family and friends makes an already isolating diagnosis, solitary confinement. Sometimes you need someone near that can see through the mask of you saying that everything is ok. I think people underestimate the role that community plays in mental health. No one is suppose to live life alone, that’s literally in the bible. Theres comfort in looking in someones eyes and seeing your feelings mirrored. Think about when your kids are having a meltdown in Target and you lock eyes with that mom that you KNOW understands. Without saying a word you know that you can get through whatever you need to in that moment.
There’s been a dark cloud around that I couldn’t seem to shake bringing in this new decade. What I had to realize is that it’s grief. I needed time to grieve (again) the life that I thought we would have.
Funerals are for the living and its a way that we can process what we are feeling. Unfortunately, nobody has a funeral for a disappointment. Are you even really allowed to mourn an expectation? Where do you bury hope? It’s not even acceptable to say you wanted something different when dealing with children is it?
Not that you want a different child but you want a different experience for them. I know a large part of that is based in fear; fear of rejection, fear of your child being mistreated, etc.
I went home for the holidays and I spent more time explaining that Mason isn’t ignoring anyone when he doesn’t respond to his name being called than anything else. Or trying to explain to people that because he can play on a tablet doesn’t necessarily mean that he can follow simple directions. Black children aren’t given the grace that other children are and that honestly scares me. It’s exhausting to be on alert at all times in that manner. There seems to be no rest when your child doesn’t have a voice to advocate for himself. You don’t really get to let your guard down.
So what do you do?
You pick yourself up and keep going. This mountain is bigger and it might require different tools BUT IT HAS TO MOVE. There are no other options. I realize that I have to become the best version of myself so that I can fight for him. That means what I put into my body needs to change. I may need to add exercise to my regime. What you put into it is directly what you get out of it (that applies to damn near every thing).
Mason requires about 30-35 hours of therapy a week…
That’s equivalent to a full time job. So then you add 2 other children, a husband, and work to the mix. There aren’t enough hours in a day to do it all. But it all has to get done. We are in store for a lot of assessments and appointments to find out where or if he truly is on the spectrum.
The other thing that nobody talks about is the anxiety that comes with being the responsible party for your child’s development. What if you have an off day or week? What if another child takes priority? What if?
What if you do 20 hours but the key was in those last 10 hours you missed? How then do reconcile that you simply didn’t do enough?
I don’t have the answers to these questions…
I don’t know if there are really any answers. I do know that I need community and maybe you just have to be the change you want to see in the world. Maybe somewhere there is a mom with the same fears and tears that I have. If you know her then please send her my way.
In the meantime we are adjusting our sails for a much longer journey. We have no idea what’s ahead of us but no matter what we encounter…
We Are 2 Legit 2 Quit.