Thoughts on Isolation

It's been about 7 or 8 years now that I have been living my life largely isolated. 

I noticed when Grayson was just a baby that he wasn't like the other kids his age. I panicked over the idea of taking him to a birthday party and wondered if I would be judged by the other moms for not doing a good enough job being a mom. Such a silly thing to worry about - I doubt anyone was thinking much about us but I felt like the differences in him were so very noticeable - how could someone NOT see that he and I were so different.

And then Easton came along, and I saw more delays in him. I remember seeing him playing with another little boy his age, and there were definitely big differences between the two. I had thought all along that surely he didn't have autism. And then I saw him with his friend. And then I knew. 

I witnessed it when my kids played with their cousins, or when someone would make a casual comment to me about how they couldn't believe our kids were the same age and acted so differently. Or when Grayson was treated cruelly by someone who thought he was just being a bad kid.

I knew. And because I knew I panicked. Things were hard enough with Mike being on shiftwork. And then Grayson started to become aggressive, and we got his autism diagnosis. Non-verbal. 

And then I retreated.

I think I tried up to that point, at least a little bit, to be social and to fit in with other people. But after we got that news, I moved on to self-preservation tactics. Survival. When Grayson tried to bite a peer of his at a play group, I knew it would be better for all involved if we just faded out of that scene.

And then Jovie came along, and we moved in with my parents while we built our house. Our house that until like this past year, no one had ever been invited inside of unless they were family or therapists - mostly because the property damage was so horrific - I was embarrassed. I am still embarrassed by the remnants of it still visible.

The boys were both diagnosed with migraines, and the symptoms of those began to wreak havoc on our family. They are still wreaking havoc. Grayson has had five since October, and Easton has had ten migraines this year. At night I can't sleep because I am constantly worried about who is going to be sick next. 

Over the past nearly five years of living here, I have been going through the motions. I have been battling behaviors, dealing with all the IEPS and ETRS and school stuff, all the therapies, all the doctors appointments - largely carrying that mental load myself. 

Many days I just want to be done with all of that and just be a mom. Or just have some semblance of peace for maybe a week where no one is sick, no one is throwing up, no one needs brought home early from school, where we have zero doctor's appointments - we haven't had one week of quiet since this summer.

I have been putting kids to bed by myself for years now and feeling so much jealousy for all those families who get to spend time together, who can both work outside the home to earn money (special needs life is expensive), who can go on vacation, who can eat dinner together, whose kids EAT, who can get their kids involved in sports and play dates and all that. Who have all the support and care that they would ever need and then some when it comes to taking care of their kids.

But this past year - 2022 - things started to change a little bit. I was able to get out a little bit more, and try hard to be involved in a few things outside of my home. It hasn't been easy.  It has taken me months to keep important appointments because I often have to cancel the things for myself that most people would make a priority. But I am not the priority. My kids are the priority. Mike is the priority. 

But when I have gotten the opportunity to do something outside of my home, it has been wonderful. 

But every single thing I do, I have to call in the calvary. 

I have to line up childcare - which is not unusual for most people - but I don't have a lot of help for Grayson. Easton and Jovie are usually no problem. But it takes a special person with special experience to help me with Grayson. My parents help me as they can. We have a wonderful provider who comes to help one afternoon/evening a week. But if neither of those supports are available, I am out of luck. I am staying home. 

Just this week a doctor told me that Grayson needs full-time behavioral therapy before he is a 200-lb grown man who could "beat the crap" out of me. 

So not just anyone can help me. Which worries me because...lately I have been seeing new opportunities come up - things I really want to do! - but I know I can't pursue them. I don't have anyone to care for Grayson.

I told Mike today that I am so very worried about slipping back into isolation like I used to be. I am a social person - for the most part - and these past few years of shouldering every single thing and very little time away to just breathe has been really difficult. I told him I could feel it coming, and it scares me.

One thing I am very glad for is my core group of friends who have been supportive of me. Who check in on me every week or even every day even though maybe I don't always answer right away. Who come to my house and sit with me in the mess and the stress and the many many times I have to leave our conversations to change Grayson. I am thankful for my neighbors who take good care of us. 

I know I am not the only special-needs mom battling isolation and stress and big decisions and huge worries about our kids. I know I am not the only mom who isn't a priority. Maybe this will strike a chord with someone - just so you know, you aren't alone.

I don't have a cute uplifting story or thought to wrap this post up with a bow. This is just how life is right now, and it will all be okay. It's been super hard, but I have made it through all of my hard days. Now on to do the next thing.