For The “Extra Needs” Parents

o all the parents out there of kids with extra needs:
You might be feeling defeated today.
The exhaustion and anxiety have set in. You feel like Sisyphus with his rock. You got so far with getting your child what he or she needs and deserves, and then something went wrong.  It could have been any number of things; A meltdown. A bad trip to the doctor.  A denial of benefits. A call from school, or a cruel comment from people who should know better. It’s taken it’s toll, and all you want to do is run, scream, or disappear.
That’s okay.
You need to remember something; there was no instruction manual included when your child was born. That was even before the doctor appointments and diagnoses. Since then, everyday has felt like a battle.
That’s because it is.
We’re raising special children in a world that wasn’t designed for them. A world that craves simplicity and often abhors those it sees as “difficult” or “strange”.  A world that for the most part refuses to recognize the wonder of our children and how much they have to offer it.
Most people don’t want to have to deal with anything or anyone “different” that may threaten the comfort of their own bubble. It’s the very mindset that make life so hard for our kids, one we fight to eradicate everyday.
Problem is, we’re not superheroes. We’re not inexhaustible. We’re not infallible. We can’t take care of everything with the wave of a hand. We screw up. We get sad, disappointed, and angry when we do. Angry at the world and even our own kids when we can’t keep up with them or understand what they’re trying to tell us they need. When we forget the most important truth there is: it’s never as hard on us as it is on our children.
Then we turn that anger and disappointment inward.
Guess what? That’s natural. Every parent at one point or another gets overwhelmed, feels like they’re failing their kids somehow, and gets frustrated.  For some reason, though, we tend to think we’re supposed to be the exception. Social media has convinced us that parenting a child with extra needs means that we’re supposed to be some kind of saints, right?
We’re just people who are trying to make the most of life and doing everything we can to  insure our kids get the chance to do the same. That’s why we keep fighting. Why we pursue every treatment, therapy, and opportunity to advocate. Because our kids need us. We’re the front-line warring with the obstacles the world puts in their way.
We can’t and shouldn’t have to adapt them to fit what the world wants them to be. We can only adapt our own worlds to provide what they need and want for themselves, and keep fighting until the rest of the world catches up.  
The fact that you’re reading this, that you got up this morning and gave it another try, that you haven’t given up, means that you are doing more for your child than anyone who isn’t following them on their journey could ever really appreciate.
So be gentle with yourself. Let yourself cry and rage and give up for the moment. You’ll bounce back. You’ll pick yourself up and do what needs to be done for that child you love. It’s okay to concede the battle today.
Because you never give up the war.
Keep fighting.

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