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The One Thing I Want Special Needs Parents to Remember on Tough Days

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Dear Special Needs Parent,

I know some days are tough. You are beaten down. Your child is having a meltdown. Your teenager is having challenges at school. Your young adult is desperately trying to be placed in a job or find somewhere to live.

No matter what the obstacle is, we’ve all been there, special need parent or not. We want to run away at times because we wonder to ourselves, “Will it get better? Can it get better?” Your son can’t be bathed because of the texture of the water. Your daughter hasn’t said her first word, and she’s turning 4 years old.

The spectrum of disability is so wide, and with each individual’s diagnosis comes some struggle for that individual’s parents.

It’s a struggle I’ve never had to deal with from the parent side of the spectrum, but as someone who helps talk parents through these challenging times, I often tell them about my own personal journey.

My journey began 23 years ago when I was diagnosed with autism. For me, between sensory issues, emotional challenges, motor delays, cognitive issues, not speaking for the first three years of my life and being scared to show affection to my loved ones with the fear of going into overload, my parents definitely had “those” days while trying to help me succeed.

It can be really easy to tell yourself it’s something you did, to say you’re not doing everything you can to help your child.

When that time comes, though, I want you to take a second and pause.

You see, everything in life is not always black and white. Not all of us are going to be math geniuses (like Rain Man), and some will need more help than others along the way. My own personal journey has taken me from one side of the spectrum, where nothing seemed possible for my future, to a point where I could graduate from college, get a full-time job and now speak professionally about growing up with autism.

My personal advice is to take those little successes as they come, and cherish each and every day you are blessed enough to have with your loved ones. If you need to scream every once in a while, do it. Cry along the way, too. Sometimes, more than anything, we need to remember we’re human.

And that’s OK.

Regardless of where the road takes you, know we’ve all been through our own challenges in life. Hope is coming. It may not be today or tomorrow, but as long as we have “community,” we will never be alone. Learn to embrace the stories of those around you, and live a life where we can pick each other up in times of need.

The next time you’re having one of “those” days, remember one thing: whether your child is able to tell you or not…

I hope you know you’re making a difference.

A version of this post originally appeared on Kerrymagro.com.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Originally published: November 12, 2015
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