Riding the Waves of Being an Autism Mom

The other day I had the pleasure to sit down with my childhood bestie and talk Autism. 

I never would have dreamed that being Autism moms would be a common thread between us, but there we sat, spilling our fears, dreams, hopes, and realities of the every day.

She's started down the Autism path more recently than I.  It was when I was sitting with her and I heard myself talking that I realized I've been on this journey with an autism diagnosis for the past four years.

Four years.

In some aspects it seems like it's been much, much longer and in some aspects it seems like it's been a lot less time.

I mean, shouldn't I have this stuff down by pat by now? But I digress..

One of the things she asked me was about being a mom of an autistic child she said something like "do you find that some days you think it's not so bad, and other days you're crying and it's horrible. Some days I don't want to believe this is happening and other days it all seems doable and totally okay?"

Um, yes I totally feel that.  All of that.  And in that moment I can see a beach-like scene of all of us Autism moms.  Some are just getting to the water, others are way, way ahead.  And we're all wondering if the others are feeling the same things, going through the same things, fearing the same things, celebrating the same things.

And the answer is yes.  No matter where you are on the path into the water, we're all getting hit with the same waves. 

I associate these emotions and good days and bad days as waves.  Allow me to explain:

When I first became an autism mom I couldn't believe this was happening.  Everything seemed like it was turned upside down: the cleanliness of our house, the amount of doctor's appointments you find yourself going to, the behaviors, the medicines, the fact that everything is different. At first this is the toughest.  It's the first wave you get.  I liken it to just getting your feet wet and getting used to those first waves that are coming onto the shore. It's cold and you're thinking of just going back to the shore where it's dry and warm but you keep going because your feet are already wet and sandy.

At first they seem really brutal but you keep walking further into the water. And you find what was at your feet is small compared to what's now hitting you on your shins and knees.  This is when you've been with a diagnosis for a year or more. You are starting to get used to the idea of having an autistic child.  You try to own it with a sense of pride with license plates, awareness walks, books, and jewelry. Most days you can stand that you have an autistic child now but every once in a while like a pebble rolls over your foot, your remember that under current along your feet, and again you are sobbing that your child has to have autism.  The waves that feel really bad though now are the ones that contain things like self doubt: wondering how you may have caused your child to have autism, guilt: feeling bad about having not being so in love with idea of having a kid with autism.  Other emotions in this level of waves include your patience wearing thin, the reality that insurance is horrible on every level of trying to help a child with autism, and just how utterly exhausting caring for a child with special needs truly is. 

And you feel like you are going to get swept under the water with these waves but you really want to jump the waves so you keep walking into the water. The waves that hit you at your waist are easier to deal with because you dealt with the first two stages so you kind of knew what to expect.  Depression, guilt, denying your child has autism, accepting your child has autism, happiness with progress, frustration at sadness, you can feel it all ebb and flow along the surface and you also know what's going on below.  Some days the waves are calm and days are great, and you have barely any trouble.  Other days the waves are huge and gruesome: trying to wash you away with drowning strength, they can carry you under in a depression that is often a month long struggle.

But still you fight, you want to live, and eventually you come to the surface.  And again you find yourself with these waves that are always present, always multi-leveled actions and movements with no telling which one will affect you the most. 

Today I left an appointment with the Developmental Pediatrician.  We were talking about other diagnosis on top of Autism and Apraxia and ADD.  But I was able to hold my head high.  I felt like I was just dealing with gentle lapping waves that are up to my chin and remind me how close I am to going under but the gentle movement makes me feel calm and secure.  Perhaps tomorrow they'll swallow me whole and I'll drown in sorrow and resentment for a while.

But for now I'm in the water, I'm swimming my swim and I'm okay.  That's my victory for today.

So for those of you who are just starting on the path into the water, just keep walking into the waves.  It's going to be okay. I promise.  I'm out in the shark infested waters inviting you to jump the waves with me. We'll hold hands and laugh together through this journey...scary waves and all.