Today is World Autism Day. But to me if feels more like Groundhog Day (and yes, I know I’ve said that before). And honestly, seeing all the autism posts on social media hurts my heart.

A Little History

I started this blog years ago because autism was so overwhelming. There was so much to learn about medical treatments, and special education law, and interventions and therapies, and about a million other things. I learned the most from moms who had been through it and I wanted to contribute what I learned as well.

I started writing when Christopher needed dental surgery. I poured hours into researching the procedure and understanding medications, the sedation process, dental materials, and everything that would happen during the surgery. I kept wishing that everything was available in one place, in a way that was easy to read and understand. And so I wrote what I wished I had been able to find, what would have made the answers to my questions so much easier. And so this blog was born.

As I wrote more, I always tried to be as honest as possible. I wanted to share our successes in a way that offered hope and ideas, not in a way that made others feel inadequate. I wanted to share our struggles in a way that created a sense of understanding and not in a way that felt like I was trying to make others feel sorry for us. I wanted to share Christopher’s challenges in a way that would help others understand the real world of autism (not the one portrayed on TV) and not in a way that made it seem like I viewed him as “less than.” I wanted to show my love for him, and show his humanity, and show how hard kids with autism work every day.  I wanted so badly to share our truth in a way that might contribute to positive change.

But all of these years later, I’m not sure how much has changed.

And Then Came COVID

Until COVID, we were making slow but steady progress. Far from recovery, far from any type of normal, but finding our way nonetheless. We had a community. We had a great school. We had activities. We had a support system. Then COVID turned all that on its head and everything vanished, just like that. Two years later, and we are nowhere near back to where were before everything changed.

Some autism families handled lockdowns fine, being already used to a life of isolation. Some children with autism thrived in an online learning environment, feeling safe and secure at home. But many, including mine, did not. It seemed as considerations were made – for children, for the economy, for learning, for socialization – the disability community was as usual at the bottom of the list.

Do We Matter?

One mom on one of our community groups, after I mentioned that it was important to remember that some children were unable to wear masks, commented that that was just too bad for those children (yadda yadda yadda), but this was a matter of public health! and in that case she needed to put her children’s health first, special needs kids be damned. So much for in it together…

It just feels like our kids only matter if it is convenient, if it doesn’t require anything, and if it is at a time when it is cool to care. Is it cool to care about our kids right now? I really don’t know. I guess I’ll see how many blue lights are shining amidst the Ukrainian flags and We Believe signs.

I’m sorry if that seems cynical. I’m just unsure right now what I have to offer. At this time, I don’t have successes to share. And our struggles seem paltry next to (or at least lost in the sea of) the myriad struggles basically everyone everywhere is going through.

I still have hope. I will never give up on my child, and I will always keep trying. But over the years, my optimism and my energy sometimes fades. And I’m going to be brave enough to admit that more than anything right now I feel overwhelmed, exhausted, … and alone.

So, I write this post offering no magic beans or pearls of wisdom. But I’m reaching out in case you feel the same. If the blue lights are making you feel blue too, I’m here with you. You are not alone.