What it's Really Like Being a Special Needs Parent

I’ve been a special needs parent for almost a decade. And with time, it’s become who I am. It’s my reality and I just get on with it.

But sometimes, something happens and it reminds me that it’s not actually a walk in the park. It’s exhausting, frustrating and terrifying. And more importantly, it’s ok to admit that I don’t have everything together all the time.

When Things Go South

This post is not meant to be all doom and gloom. For the most part, we are fine. Since getting over the initial shock of the kids being diagnosed and starting on our homeschooling journey, we have managed to get into a good flow.

We have been incredibly lucky when it comes to the pandemic. I shudder to think what it could have been like if we had to send our kids to school with masks and other safety precautions.

But sometimes, things do get pretty hairy in the Jones household. Yesterday morning Oscar had a two-hour meltdown, triggered by not being able to buy a LEGO instruction PDF. So specific, I know!

When Oscar goes, he goes BIG! It all ended with us screaming at each other. There might also have been threats of divorce and Christmas being cancelled.

We were all pretty raw afterwards. And God only knows what the neighbours thought was happening!

Being a Special Needs Parent is Hard!

These explosions can really rattle me. In an effort to manage life, I tend to suppress a lot. It’s important for me to show that everything is hunky dory and that I have all my ducks in a row. But these incidents remind me that I have a huge weight on my shoulders.

There is rarely alone time for any of us and there is definitely ZERO alone time for us as a couple. The last time we had a night away was more that 3 years ago!

It’s a big responsibility to homeschool the kids and sometimes I doubt that we can do it. There is always a niggling fear that we aren’t doing enough. We try to ignore milestones and grades, but it’s hard not to wonder.

The meltdowns and anxiety can sometimes be so overwhelming. These little boys have incredibly strong emotions and it can be really hard for me to remain calm at times. And when I explode at them, I’m wracked with guilt.

It’s Hard but It’s Beautiful Too!

I don’t want to paint a depressing picture. My kids bring me so much joy and are incredible funny. Each win is so much more powerful and special. And we are so very close as a family. We are lucky to get to spend so much time together, and it’s really a privilege to get to see my children grow up.

I guess the point of this post is to say that being a special needs parent is hard. But it’s also beautiful. It’s ok to admit that things aren’t always perfect and that we aren’t always coping.

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