I blog about my family’s life with special needs. But it doesn’t make me an expert. You may know a woman who’s daughter has Down syndrome, or a dad whose son has autism, but that doesn’t mean they understand what life is like with a child who is tube-fed, or who uses a wheel chair. You don’t expect someone who has cancer to understand what it’s like to have schizophrenia, or a person born without legs to understand what it’s like to be born deaf. Yet somehow, as soon as you say your child has special needs, there are those who assume you know everything about all kinds of special needs.
It doesn’t work like that.
We’re not medical experts. We’re not therapists or special educators. Well, most of us aren’t, and it’s usually a fluke if you are. Myself personally, I had no desire to be either a teacher or a nurse. I didn’t want to work with kids or be a doctor. I didn’t really know anyone with disabilities growing up.
Honestly, I don’t know where kids like my own went to school, but they didn’t go to the local one. There was one girl a bit older than me at our church, who had Down syndrome—she was lovely and bright and always had a smile on her face, as did her parents. Honestly, I think I was the oddest kid I knew, what with my psoriasis-coated arms and legs and massive speech impediment (which today I can diagnose as a phonological disorder paired with an articulation disorder).
I didn’t grow up with the idea that someday I’d have a child with disabilities. I never prepared for that by getting a degree in nursing or occupational therapy. Nothing in my obnoxiously healthy family ever gave us that idea that this was an possibility. I was just a mom having another baby. The baby who was going to be our last, so that when she went off to college, we’d be in our late 40s and still able to go travel the world.
Needless to say, that plan has changed.
I was just a mom who knew what it was like to have babies who were overachievers, who crawled early, walked early, talked early. I didn’t know what normal development looked like, so my daughter Maura’s late development was chalked up to being a late bloomer and not something to be worried over.
I was just a mom who had to learn about blood draws and geneticists and therapies. Just a mom who was thrown into the world of special needs with no guidebook except that stupid “Welcome to Holland” essay that did nothing but piss me off.
I was just a mom who spent hours at night scouring the internet for some clue as to what was causing my child’s problems, making lists to take to doctors, scared of both getting an answer and not getting an answer.
I was just a mom thrown into the world of special education, who had to learn the ropes as they were being set on fire, trying to decide which hill to die on, meeting amazing people along the way who, unlike me, did choose these particular professions that helped my child.
I was still a mom to three other children who needed me, who had their own things to overcome.
I am an expert on my daughter Maura. I am an expert on our own issues. I know a lot more than the average Joe about constipation and seizures, about milestones and delays and genetic tests. I should get a friggin’ honorary speech therapy degree for all the time I spent in it for myself and my kids.
I still don’t know what it’s like to have a child with mobility issues or severe autism. I still don’t think I’m capable of being a teacher or therapist. I still have no desire to be a nurse.
What I do know is all of the peripheral knowledge of special needs, because having Maura has opened up my world to more of these issues in the way of friends and their lives, because I’ve gotten to know other parents and their kids. These moms have questions and hurdles of their own, and they still have dishwashers that need unloading and Halloween costumes to come up with and morning fights over clothing.
There are dads who juggle the normal and the extraordinary on a daily basis, taking it all in as their own normal. There are moms who have said to me, “I don’t know what it must be like, not to have a diagnosis.” There are moms who are always open to talking about poop or tween attitudes or the struggle to find flattering jeans that aren’t mom jeans. There are dads who sing along to My Little Pony and Frozen.
This is because we’re still parents. We’re experts on our own journey, but we’re still just parents.
I’m an expert on Maura, but I’m not an expert on all special needs. I’m still just a mom. I know a bit more than the next person, and you could too by just listening, by learning.