I was trying to write a post about things not to say to a special needs parent, realizing it was based off of things said to me. I haven’t finished it because it was turning into one of those ugly therapy moments where you get it all out, but now you’re depressed and want to shove a cookie in your face.
In thinking about it more, I wonder – is this a phenomenon that happens to those still looking for a diagnosis? Is this one of those “fun” unique things that happens to only us?
Like being told we’re lucky our child doesn’t have autism?
Like being told to stop complaining so much about my child, she’ll be fine, but it’s rude to complain about our piddly problems in front of So and So, whose child has real issues?
Like being told “Well I could have told you she didn’t have that! You were worrying for nothing!”
Like being told “You shouldn’t shortchange your child, you should be striving for independence!”
Like being told “It can’t be that bad! She’s so happy!”
It’s like, somehow, not having a label people can relate to, it opens up the door for all sorts of weird criticism.
“I could have told you…”
“It’s not that bad…”
All things I heard more than once the first three years of dealing with Maura’s issues. So much “helpful” advice – no wonder I ended up in therapy. There I was, dealing with one of the most stressful things you can deal with in life (plus a house move!) and I was being doubted.
I get it. It’s human to wonder these things. Even I’ve wondered once in a while, “Gee, maybe that person is just seeing things that aren’t there.”
But the difference is, I keep my big yap shut. Because telling a worried mother to not whine so much, there are others with bigger issues – well, that just doesn’t help things. Especially when doctors don’t know.
The thing is, these people didn’t see what I was truly dealing with. I kept a lot of it to myself. I still do. If you met me on the street today, you wouldn’t realize I was a big ball of anxiety ready to hurl itself into a vat of chocolate. No, I’m really damned good at keeping a presentable front. I smile my way through problems, cracking jokes about our situation, with my smiling child in tow. Because I also know when I do let some things loose, it comes out in an incoherent heap of babble which is hard to take seriously. And yet, it’s the most serious I’m being.
A friend of mine just had a child diagnosed with an issue after several months of trying to figure out what was going on. She admitted to me she felt bad about saying they “finally” know, knowing that their journey has been a few months, while I’m at 9 years of not knowing. Me? I’m thrilled they know what’s going on, that it’s manageable, that they can move forward.
But it made me wonder…how different would our lives have been if Maura was born differently?
People new to us ask if Maura was born this way. They’re usually fall-out-of-their-chair shocked to hear that no one noticed anything for the first 15 months. For fifteen months, I had a normal child. Or I was told that. When she was six months, worry started creeping in. At 13 months, they noticed she had “some” low muscle tone. But nothing screamed “Holy crap, there is something wrong with this kid!”. Even after that, for a couple more years, we still heard “Well, she could catch up by…”
I’ve seen others go through the process of diagnosis, or read about the beginnings of their journey. There was always “And then we joined this group” and “Therapists coming to the house” and “by two months, he was receiving therapy”.
And we got jack all.
We had the generic “delay” label, which got my non-walking, non-talking, non-pincer grasping 16 month old 30 minutes of PT and 30 minutes of OT per week. At 20 months, after doing all the evaluations, they realized that she was really far behind in speech, so added 30 minutes of that as well. And then, while everyone else got home visits, I got the crappy 8:30 am Monday morning slot b/c Maura needed “so much” that it was the only time they could fit me in.
Hindsight has made me realized we were shafted. Not on purpose. We were just dealing with a “delay”, not something “serious” like autism or a syndrome. I didn’t know any better, and there wasn’t a support group I could join to help me navigate through all this. No one called my child disabled – not a doctor, not a therapist. No one went there. Instead, I got backlashed – She’ll be fine. She doesn’t have a real issue like So and So’s child. You’re making too much of it. She’ll catch up. Time and time again, I was undermined by people doubting that what I was going through was, in fact, a pretty big freaking deal. And they were vocal about it.
Funny enough, when Maura was diagnosed with epilepsy, people started taking things seriously.
Funny how a label can make a difference.
This is why people call hindsight a bitch. The first four years of Maura’s life, I worried, and people patted my head and told me it would be okay. It wasn’t okay. I wasn’t okay. They told me about those who had it worse, until one day, I was the one who had it worse. They were certain that my good attitude and Maura’s happy personae somehow negated any seriousness to our situation. It didn’t.
I spent three years in a haze of doubt and uncertainty. While I tried to figure out what my daughter needed, I was being told there was nothing wrong, that what was wrong wasn’t a big deal, that I shouldn’t complain, that I should just buck up like a good cupcake.
Would they have said that if that first test for Down’s Syndrome came back positive?
I doubt it.
Instead, after two weeks of worrying, when I revealed that we had Maura tested, I got “Well I could have told you that!” the “DUH!” was implied. It was my first “Geez, you’re making too much out of it, she’s FINE!”
To be honest – I wanted her to be fine. I wanted that more than anything in the world.
But I already knew it wasn’t fine. My blinders were off, thank God. Because if I had listened to everyone else, it would have been even longer before Maura got into therapies.
I knew in my heart when Maura was six months that something wasn’t quite right, but wasn’t ready to admit it, and was willing to embrace the idea of the “late bloomer” with her. Looking back now, at pictures and videos, I see all she couldn’t do, how she really couldn’t sit up well, even at a year old, how that time when we thought she might have had a seizure and were told was a delayed startle reflex (at like age two) – that was probably a seizure. I was told one day that I was the expert on my child, and the next, told I was blowing things out of proportion.
That she’d be fine.
And then people caught up. It only took a grand mal seizure on horseback and a diagnosis of epilepsy to get everyone on board.
It took a label people could understand and embrace.
How different would our lives have been if we had a label early on? If I didn’t have to spend so much energy defending my daughter’s special needs to people? If I could have stated “Yes, my daughter has special needs!” early on. If I had a disability group to show support? If I didn’t feel like a fraud at times with my happy toddler who *might* catch up in the world of special needs families? Or in the world in general? It took me years to be able to call Maura special needs, to use the term disabled with her – not because I was in denial over her issues – but because no one else seemed to believe it. No one else considered it, no one else accepted it. I had people shaming me when I did try to put my child in that category. We weren’t as deserving of it as others.
It’s a wonder I didn’t crack under all the pressure sooner.
Nine years after that first “there’s something not right here” mention, I’m in a different space. Literally and figuratively. I’ve gone from being doubted to being called a bit of an expert. Now I’m the one telling people Maura will be fine – though my definition of “fine” has changed. I’ve learned to share better what we’ve been through, if only to help those who are in a boat similar to the one we found ourselves in nine years ago.
But I’ve learned it’s all an evolving process, this journey we’re on. I spend so much time just taking it day by day, getting through this week or that appointment, losing two days to anxiety and sleeplessness when Maura does get sick, that one day, I stop and look back and go “Wow.”
Which is why I’m here, today, talking about how we were treated 7, 8, 9 years ago.
Hindsight. She’s a right bitch she is.