If you live in the world of disabilities you’ve probably uttered one of the following phrases:
God does not give people with special needs to special people. I am not special.
You just do what you have to do .
You would do the same thing.
We are just a typical family.
…or any variation of the sort. How do I know? Because in my moments of humility while navigating I have said the same words. I’ve always felt like I’m reading the cliff notes to keep up with the ever changing world of Down syndrome and therefore unable to deem myself “special.”
Well, I’m here to call us out on all of our mild mannered modesty because I’ve realized that we are special damn it and we deserve that title.
No, Not everyone can do it. Not everyone is able to raise a child with a disability. Not everyone will. Some torn souls will make the heart wrenching decision to put their child up for adoption. And some of you reading this may be one of the special souls who chose to adopt. These are the stories that warm us…..But, let’s be honest. There are entire countries attempting to prenatally diagnose disabilities and eradicate them. So, the fact that you show up everyday is not ordinary or what anyone would do. You are as unique as the lovely human you are raising.
My son has Down syndrome. I was once told that it was the “Cadillac of disabilities” and I was told by his pediatrician when he was just a week old that “out of all the heart breaking disabilities , his is also heart warming.” My point is this. Down syndrome isn’t easy. In my life there is elopement, language delay, communication barriers ,safety issues, social anxiety and many, many respiratory infections. And while I believe I deserve a pat on the back for not losing my shit on the daily, I do also recognize that in the world of disabilities there are more difficult roads to travel in not so comfortable vehicles. Regardless, we all deserve those prayers, worry free nights out, compensation and celebration of how damn special we are!
….Especially the incredible people who: clean and operate g -tubes, give shots, live in the hospital, fight for services, know their child is going to die, own a wheel chair accessible car, restrain their child when they are violent, never hear their child speak. The “parents” who are stared at, the ones who’s doctors begged them to abort and the ones who disobeyed doctors orders to not resuscitate.
When you are thrust into the world of disabilities you see the gamete. I’ve seen so much goodness from caregivers. To all of you: Please do not fool yourself into believing your work is typical, ordinary or otherwise. It is heroic to sacrifice for others …even if you made them. It is Godlike. It is other worldly. It is special. You are different. You’re child is different. We are not the same. I am tired of wearing that mixed up martyr mask. We exaggerate the downplay with an “aw shucks” and a “not little ol me.”
Let me be your voice of empowerment parents. You are doing something big while you navigate how to care for your child with special needs. You are showing love and empathy and most certainly have become a kinder person in this world. You advocate and celebrate and educate. You are changing the very definition of special needs just by being you. You are changing peoples minds and hearts. You are doing so much more than just showing up. Do not shyly and humbly deny yourself the compliments you so grandly deserve.
Instead, do what you would tell your child to do…..”Hold your head high and be proud of your special difference!!!!”
I love you.
From a fellow special needs parent