Confessions of a Special Needs Dad: Advocating for Our Disabled Children
I'm so grateful for the amazing response from so many of you after my column last week discussing some of my experiences with two of my four children who were born with disabilities. If you missed that column, give it a read. I plan on writing a series of these "mini-memoirs" reflecting on my experiences with my oldest child (now 21) with Cerebal Palsy and my youngest child (now 14), who is on the autism spectrum.
I'm calling these reflections "Confessions of a Special Needs Dad" because our society has embraced the "special needs" label as a catch-all description of any child who doesn't necessarily fit into the typical "cookie-cutter" parenting or educational mold found in most parenting columns or books.
But, it's not really a sufficient description, is it? I mean, when I really think about it, all of my kids have their own special needs at one point or another. Right? Don't we all? I know I have special needs, and so does my wife. And I need to learn and understand what each of my kids' special needs might be and keep them in mind when communicating, instructing, and parenting them.
We have embraced "special needs" as a replacement for what we are really talking about: Disability. "Special needs" makes us feel better because we think it makes our kids feel better. But, our kids know they are disabled. And we shouldn't be afraid of acknowledging that. By forcing this euphemism with the noble intention of being positive and upbeat about a very challenging situation (which I respect and appreciate), we must not try to fool ourselves or our kids.
They are disabled. That doesn't mean they are less worthy or in some way inferior. It just means that they are going to have a much tougher time getting through life. It's our job as parents to acknowledge that, be real about it, and then work with our kids to find all the ways to help ease those difficulties. That includes working on our society for better inclusion, acceptance, and accessibility.
That's right. When you are a parent of a disabled kid, you join the ranks of advocates for disabled people in our country. Whether you know it or not. Very early on in the process, you realize that you will be spending way too much time advocating for your child's rights; their right to services doled out by bureaucrats that too often appear bored and uninterested in ensuring that your child receives everything your state or insurance company has set up to help their development.
You realize that if you don't speak up and fight for your kid's rights, literally no one else will. And, as you're advocating for your disabled kid, you find yourself joining forces with parents just like you, fighting the same fight for their kids. We become warrior parents. As you fight for your kid, you are fighting for all the disabled kids out there. You're an advocate. You're an activist. You start seeing how inaccessible our society is, even these many decades after the Americans with Disabilities Act was signed into law.
You don't see it until you are forced to look for it.
You are changed. You are changed for the better. If you aren't going to fight for your kid, what kind of parent are you, right? You join the fight. You never planned for it, but you are now an accidental activist. Embrace it.
As a political conservative, I realized this fight fit me like a glove.
Half of your time in this fight is a fight with your state government and your local school officials. You learn very early on how ineffective and incompetent these government-funded agencies are. It's one thing to see waste and inefficiency at the DMV when you're waiting to renew your drivers' license, it's another when you are getting the run-around about therapies and educational opportunities for your child, especially as precious days, weeks and months of their early developmental opportunities are slipping away and you're stuck behind the wall of red tape imposed by government officials who literally don't know what they're doing... and don't seem to care.
The other half of your time is fighting against a society that consciously or subconsciously is rapidly regressing to a terrifying intolerance of disabled people.
We are experiencing a crisis in Western Civilization with regard to individuals born with Downs Syndrome. Recently, a Washington Post columnist openly discussed her hypothetical desire to kill an unborn child in her womb if she had discovered they would be born with Downs Syndrome.
I have had two children; I was old enough, when I became pregnant, that it made sense to do the testing for Down syndrome. Back then, it was amniocentesis, performed after 15 weeks; now, chorionic villus sampling can provide a conclusive determination as early as nine weeks. I can say without hesitation that, tragic as it would have felt and ghastly as a second-trimester abortion would have been, I would have terminated those pregnancies had the testing come back positive. I would have grieved the loss and moved on.
The column was celebrated and praised for its "courage" and "honesty." Nowhere in this praise was the term "eugenics" ever uttered.
Western European countries are slowly moving toward societies that eliminate individuals with Downs Syndrome before they are born. Iceland has pretty much reached that point, and this is often met with admiration... as if it were an accomplishment rather than the "cleansing" that it is, under the clinical and subversively immoral guise of "prenatal screening."
What child is next? If we develop a prenatal test for autism, would children like my son EJ (pictured above) be eliminated before birth because Washington Post liberals determine that it's just "too hard" to raise them?
If we could pre-screen for amyotrophic lateral sclerosis, would Stephen Hawking be killed before birth? Would our society have been better off if he had? If a conservative can't become a passionate activist against this kind of mindset, I don't quite know what makes them a conservative.
We conservatives spend a lot of time arguing about ineffective, incompetent, big government bureaucracies and we spend a lot of time fighting for the dignity of every human life, born and unborn. The fight for disabled individuals, their rights, their acceptance, and accessibility for them in our society is a conservative fight.
Join us.
You'll be surprised who you become and how you change and how your focus shifts when you are raising a disabled child in your own home.
Every parent is an advocate for their child. And when that child is disabled, that parent inadvertently becomes an advocate for all disabled people. And that's a great thing. Because we must all recognize our society's faults and do what we can to fix them.
Our country is not perfect. Neither are our kids. Let's fix the former so that the latter have a better future. It's literally the least we can do.
Join the conversation as a VIP Member