My nine year old son Mason is neurotypical, which is the politically correct way of saying he’s “normal” or not autistic. My 7-year-old daughter, Elliott, was recently diagnosed with Tourette Syndrome, which was enough to make me want to check myself in. Like seriously, I’m waving the white flag and really need to not have any more diagnoses handed down for a while. But that’s a different story for another day.
My Ellie girl is handling things like a pro, her school is giving us great support for her, and she’s definitely not on the autism spectrum.
My 5-year-old son, Cody, is severely autistic and non-verbal, which we found out when our 4th child Lainey was about 2 weeks old, and then just before Lainey’s second birthday, we found out that she’s on the autism spectrum too.
I could bore you with tales of woe, difficult IEP meetings, evaluations, therapists leaving and having to find replacements, our move from Georgia to Pennsylvania, etc, but I suspect if you’re reading this you’re probably well aware of how challenging life can be with kids in general, but especially with kids on the spectrum. So, I digress.
I came across a post from another autism mommy talking about her hardest day so far with autism, but when I reflected on that I struggled coming up with one specific day at first. There’ve been lots of hard times, tough outings, difficult discussions, and all that fun stuff, but coming up with one day wasn’t working for me. I do have a very pronounced feeling though of before and after, meaning before and after the kids were diagnosed.
I vividly remember feeling like the diagnosis was crucial. I knew in my heart that the little kids were autistic, and once that was confirmed I felt like I could move on with our lives and everything would be fine. We’d have our answer, we’d have a game plan, we’d have their therapy, and that would be the end.
I felt like it was a challenge I could take on and overcome. It sounds so silly to write that now. Unfortunately, it has become clear that the diagnosis is just the beginning of a life-long battle. It’s the first day of many to come where I’ll be filling out paperwork and questionnaires, calling providers, fighting with school systems, arguing over insurance coverage, sitting thru evaluations, coordinating services, scheduling therapy.
We can solve today’s problems, but I know tomorrow will probably bring on new ones.
I think the hardest day I’ve had so far was the day I realized that the hardest day is probably tomorrow, and the next day, and the next day.
There are wonderful things to come, and we have much to be thankful for, but autism is forever, and the day I really let that sink in was the hardest day for me. I remember crying to my husband one night about how it seems to never end, and he looked at me almost incredulously, like I was just figuring out something he’d known all along.
He said, “Stacy, this is always going to be hard. We’re never going to have the kind of life we had before.”
He was right, of course, and I think I knew it on some level, but that was heavy when I really wrapped my brain around it that night. Unfortunately, there is no end to this fight. Although they may change over time, there will always be battles to fight for these amazing kids of ours.
I don’t claim to know much of anything really, and honestly, most of the time I’m just a hot mess Mama trying to get thru the day. All I can tell you for sure is the fact that I have the four most amazing children on the planet. My two littles are moving beautifully thru life, despite living in a world that isn’t quite made for them. And don’t even get me started on my two older kids, one of whom is dealing with her own disability. They’ve hung in there thru some pretty tough times these past few years, and they amaze me every day.
There are hardships to come for sure, but these battles are so worth fighting. This little family we’ve made looks a little different than most, but we’re healthy, mostly happy, and there is good on the other side of autism.
I know my son Cody better than I’ve ever known anyone in my entire life, despite the fact that we’ve never spoken a word to one another. Well, of course, I talk to him all the time, but he never answers. One look from him tells me all I need to know about what he’s thinking, and that kind of bond is special.
My little Lainey is an absolute joy! To know her is to love her, and I can’t wait to see what she and all of my kids have in store for us. I won’t even bother trying to sugar coat this for you — autism is hard! It’s always going to be hard, but they’re worth it. All of it. Bring it on.
My favorite saying to describe our family is, we might not have it all together, but together we have it all.