Don’t get me wrong, I think I’m a pretty good dad. But aside from that, I don’t think I’m special. I struggled with this notion of what it means to be a "special parent."
Ultimately, I realized that the whole “special kids only come to special parents” line is garbage. It means nothing and serves no purpose—other than to fill in the awkward silence when someone breaks the news that their child received a disability-related diagnosis. It doesn’t do much.
But I will say this: My son is 5, and I think I’ve become a special parent on a lot of levels. I think I had to. I wasn’t at all prepared when my son was diagnosed. But I think I am now.
It's strange that the ways I’ve become special aren’t necessarily what the “special kids only come to special parents” folks had in mind. Here’s a quick breakdown:
Selfishness gets a bad rap. I’m not saying that over the top selfishness is a good thing. But I think there’s a healthy level of selfishness that everyone needs to find. I’m selfish with my family’s time. I’m selfish about who we hang out with. I want my children to be around people who will appreciate them for who they are, and not how they might seem at first glance. Every single decision I make is out of selfish pursuit. Is this the right thing for my family? Will this benefit my family? And if the answer is no, then I don’t do it. Isn’t that the technical definition of selfishness?
I’m selfish in IEP meetings, too. I fight for what I think my son needs. I push in ways that I wouldn’t push otherwise. Because selfishly, I want the school to perform better for all children with disabilities.
I’ve learned to be selfish with my own time too and create opportunities for me to recharge however I see fit. I encourage my wife to be selfish with her time too and take care of herself independent of the rest of us.
I’m more confrontational.
Before my son was born, I didn’t particularly enjoy conflict. I don’t think I was afraid of it, but I didn’t go out of my way to engage in it. The one thing I’ve learned about being a parent of a child with disabilities is that conflict is part of advocacy. Advocacy, often, is telling others what you need them to do when they don’t think they need to do it. I’ve had these types of conversations with doctors, teachers, principals, administrators and heck, even family members. Confrontation is part of our daily life and I’m fine with that.
I believe this with every fiber of my soul: My son is normal. Our normal is different than everyone else’s normal. But in our house, disability is part of the norm. Medication is part of the norm. Spasticity related vomiting is part of the norm. Feeding my son in a high chair, getting him ready every morning is all part of the norm. I am 100% stubborn in the fact that all three of my kids have disabilities. My middle son’s needs just happen to be a little more intense.
So yeah, I think I have become a special parent. Just not quite in the way that many thought I would.
Family Support offers lots of information for parents and families.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.