It would be dishonest of me to say I don’t miss my old life. I do, but not most of it, just my friends. Ok, and maybe my waistline, being able to talk on the phone, sleeping in, using the bathroom by myself but, still, mostly my friends.
New Year’s Eve reminded me of that yet again as the photos of parties I wasn’t invited to were posted and the merriment of others pulled at my heart. As much as I want to be included still it’s just not possible at times. That’s why birthday and holiday cards are decorated with crayons.
It’s part of the grieving process when your child is diagnosed with special needs yet I’ve gone through three sets of diagnosis in the past year and a half. (Excuse me while I refill my drink.)
You see, we can’t stay for long at any social gathering before one or both of our kids will melt down or injure themselves. It’s improved gradually and they last a little longer than they used to but we’re typically the first to arrive and leave to avoid a crowd. Others want to be accomodating with murmurings of “it’s really okay” or “can I help…”. Yet it’s not okay, not for our kids or us. You try maintaining a conversation while chasing two small kids running in separate directions who are flexible, injury prone, fearless, inquisitive, mechanically inclined, and like to hide. Good luck.
It finally came to the point where we realized that our expectations had to change and not our kids’ behavior. Crowds are panic inducing for them, bright lights are painful, a room full of party-goers jostling and mingling is torture for them. They see my daughter merely as quiet and my son as hyper. I see the anxiety, I hold them after their done hitting and screaming at me and themselves, and I wipe away the tears of us both as I realize yet again that we can’t live the way we used to. “Used to” being before we became parents and the “we” became the four of us.
Social media is a poor replacement for a true friendship yet it’s the best I can offer these past six years. I knew that some of my friends would be upset but what you don’t quite comprehend amongst the chaos of discovering your entire family is autistic except for you is that the rest of the world might pass you by as you struggle to find a balance in the new one that’s revealed to you. I kept telling myself I would find my sea legs on my leaky boat but I’m still bobbing on the tide and occasionally getting sick over the side.
I’ve let my friends down so that I wouldn’t let my kids down. It wasn’t fair to anyone but it was the only way I knew how to face the challenges that kept coming my way. I was overwhelmed and dealt with my situation by immersing myself in learning as much as possible like I would with a project or new position in my past work life but I ended up drowning myself instead. This wasn’t a topic that could could ever be fully understood and no matter how much I committed myself to researching and reading I couldn’t find the elusive answers I hoped for. How to understand my kids. How to make our lives easier.
“Yeah, but you’ll be back to your old self, right?”
“It’s not like your whole world revolves around your kids…”
“My life is really busy too, you know…”
My old self is gone. My world does revolve around my kids whether, I want it to or not. Necessity requires it of me and, yes, I know that people have their own lives to lead as well. But, that’s the thing, I’ve accepted my situation yet I can’t seem to ever accurately explain to others what that situation is without that glazed look coming over them as they ponder how big my wooden cross is and does it come in different varnishes. (It’s teak by the way and it’s a limited edition.)
There’s only so many invitations extended to adults-only events that you decline before you’re no longer asked. Feelings get hurt and it’s hard to believe that we can’t find a sitter or that our kids still co-sleep (it is and they do). On a good night in our house, the adults get to sleep four hours in a row undisturbed and we’re all up by 5am because that’s when Owen begins talking for the day. It ends later that night when the melatonin kicks in. We explain all of this, people express sympathy or want to give solutions once the incredulity passes.
They don’t get it, it being that cumbersome title “parent to special needs kids”; because, after all, it’s not a title you seek out or prepare for. It’s not something you find in people’s life plans or the nonexistent manual for parenting. It wasn’t in mine and I can’t expect it to be something my friends will easily understand when I still struggle with it myself. I just hope that they know I miss them and that deep down I remember my old self but I’ve had to change to be able to be the self my kids need me to be.