“You’re a strong girl. God picked you to be his mom for that reason.” I’ve heard this same thing from multiple people over the years since my son was first diagnosed with Autism. Truth be told, if that was really the case there are many days where I wonder why I was chosen because I feel anything but strong some days.
See some days Autism is hard. I mean, like, REALLY hard. I’ve been struggling more lately as he’s getting older. I think it can tend to hurt more now because when he was 4, 5, and 6 years old, his teen years seemed so far away. Now we’re here and it hurts like hell some days. The pandemic (and I’m talking the lock-down/quarantine days of Covid) was obviously awful for many reasons, but there happened to be one reason why I didn’t mind it so much and that was that others were doing exactly what we have always been doing which is staying home and not socializing much. It was comforting and helped with the feelings of isolation. For once in our lives, it was “cool” to social distance and our family was good at that. I’d joke and say “We have been in training for this for years!!! Neffs, It’s our time to shine!”. Humor has always been my biggest coping mechanism.
Except sometimes, the humor doesn’t come easy and wouldn’t do the trick if it had. During those times, I allow myself to just feel and sit with my feelings. I became really great at shoving feelings down in my earlier days, putting on the facade like all was okay and I’ve learned that won’t do anyone good. So I’m feeling it all and that’s where I’m at…and I’ve decided it’s completely acceptable.
When the world started opening again after Covid numbers started to improve, I was definitely ready to celebrate and see other faces and places other than those within our home. The warmer weather was showing up and so were those social media posts I dreaded. You know the ones I’m talking about….the ones that make you feel a tad bit of envy because everyone seems to be living this fabulous life besides you. Or maybe it’s just me? But I’m really doubting it. But these days what’s getting to me are the big milestones that come in those teenage years. Graduations, Proms, College tours, College acceptance and the big-move day are being posted again and while I will take those posts over political rants any day, when I see them these days I tend to think about my son and how all of this is suddenly feeling incredibly close and just around the corner for us. It didn’t feel like this when he was 6 years old. I felt more confident and like we had ages to go to get to High School. Instead, I just had my first conversation about applying for Guardianship and when to begin that process. The future is so unknown for him in regards to whether or not he will be able to receive a high school diploma or will we have to go another route because of how much he struggles with the MCAS. At 13 years old, I see boys riding bikes and walking to each other’s houses to hang out and I think about how our boy would probably be doing that at this age if it weren’t for Autism. Because he wants to do those things and asks me to do them but he’s not able to ride his bike or take a walk on his own without a parent near him because he still doesn’t know how to navigate in the world outside his home independently. He also doesn’t have friends to do that with. I think about invites we have to seriously consider only to turn down because we just know that it’s going to cause more anxiety for him…and us. I think about still needing a sitter to go out for an evening with my husband or the fact that travel is something that is so stressful that we need a vacation to recover. I do the comparison thing and I feel awful and filled with guilt for even imagining a world where Autism wasn’t part of it. Because Autism is a part of my boy and I adore him. I just hate that he struggles. I hate watching him struggle. But sometimes, I do wonder what the world would look like for him if he didn’t struggle to connect with peers and had more control over his thoughts and body. Some days I’m angry and I don’t know why he has to struggle and why my heart has to break over and over again.
And now that he is a teenager, I think back to all the years before. Could I have done more? What if he started Early Intervention sooner? Did he have too much screen time? What if I had not been in denial after his diagnosis? Why does that other child that was diagnosed at the same time seem to be progressing so much more? His Mom says he “lost” their diagnosis and is doing great (I had to refrain from punching her when she said that) so did that Mom do more for her son? And the questions go on and on….
And this could continue as long as I allowed it but I cannot live here. Although it’s important to feel, cry and pay these emotions their due, It does no good for me or my son to stay here. No, I don’t know what his future will hold and thinking of it does scare the hell out of me lately but I pray to God constantly to help me help my son with his goals and to not make me have to say, “No, I’m sorry but you’re not able to.”, to the things he wants to do. Instead, I pray for the strength to say, “I believe you can, but we’re just not there quite yet.” and not be making false promises. I pray that God gives me the tools and the patience to help him achieve those goals and all the things he hopes to do.
For instance, He wants to drive. He is counting down to the age of 16 and knows it’s only two and half years away that he technically could get his license. When he talks about it, I am quick to say as to prep him for that day, “It doesn’t have to be at 16. We have to work more on being safe with walking and biking first.” Just one of the many things that I don’t have to say to my neuro-typical daughter when she talks about the typical milestones as a teen.
I don’t feel like I feel very sure about much these days. All I know is that I love this son of mine SO much it hurts and there isn’t a thing in this world I wouldn’t do for him. I have to remind myself of where we have been and where we are now. I need to give myself permission to cry it out and remind myself that it doesn’t mean that I love my son any less. I need to remember that I am just a Mom trying to do her best. I need to remember that our journey is not going to look like that of another family. I also wonder if I ever will be completely cured of this bad case of Comparisonitis and if I will ever look at the future without so much fear again. And just as I wonder that, I hear this little voice inside me say, “I believe you can, but we’re just not there yet.”