Little do they realize that our child is exactly what lights up the dark corners of our life. But there is a dark side to special needs parenting.
One that people don’t often realize when they think about what our lives must be like. It’s really all the outside challenges that we face while caring for our child.
It’s the fight with school systems because they refuse to follow IEP’s or acknowledge or wishes, desires and hopes for our child.
It comes in the form of having to fight for government services, which most of the general public falsely assume covers all the financial care and overall needs for children with disabilities.
An abundance of emails and telephone calls to follow up on your child’s affairs ranging from making appointments to following up with agencies designed to assist you through the special needs journey.
Finding new therapists when the ones you leave resign and move on to bigger and better things.
The financial stress of never knowing how you’ll fund out of pocket medical, therapy and equipment costs that insurance denies.
It is having to invite countless people into your home to help your child when you’d just love to be normal and cuddle in your pajamas on a snow day.
The utter exhaustion because you realize that you can’t just be a parent, but that you must also juggle the title of being your child’s personal secretary and advocate.
Searching for opportunities that otherwise wouldn’t exist or just land in your child’s lap, hunting for foundations, grants, and seeking donations through endless fundraising.
The feeling that you’re alone. Quite alone in most of this.
That people may offer words of comfort, but that no one is going to reach out and embrace you in a real life hug and say I’m here to help you.
It is the realization that you can’t even go to Target without the world staring at your child and looking at you either with tremendous pity, relief your child is not theirs, or disgust that you have the courage to take your disabled child out in public.
It’s the lack of kindness and consideration when you desperately need a disabled accessible parking spot with eight-feet of clearance to unload your child with his ramp, but can’t find one because an able-bodied person with no parking permit has decided they are more of a priority that day.
These dark things can add up, and they feel sometimes like they are smothering you while you’re working so hard at being the very best parent to your child with special needs. They can make you question your own worth, and sometimes make you feel like you are failing. Failing to help your child in all ways possible.
We must remember what it is all for – our child.
And keep marching towards that beautiful guiding light on the special needs journey.
That light is worth all the dark corners that we endure.
“To be a star you must shine your own light follow your own path and don’t worry about the darkness for that is when the stars shine brightest.” unknown