Dear Special Needs Parent: I Know It Hurts When Others Don’t Get It.

*Editors Note- This is a guest post by our good friend, and fellow blogger, Ellen Stumbo. She is a writer, speaker, and blogger who writes about finding beauty in brokenness with gritty honesty and openness. She tackles issues about faith, parenting, special needs, adoption, and confessions related to these topics. You can check out her blog here, and follow her on Facebook here.

As parents of children with special needs we often carry the weight of a world that doesn’t understand our children, or unfairly labels them. Sometimes the only way we can make it on this journey, is hearing some reassurance from others in the trench.

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Dear special needs parent,

Some people will never get what it is like to walk in our shoes. No matter how many times we try to explain our situation, our child, the challenges our family has to face – no matter how many details we share – the reality is that most people won’t get it. And some people might think we are exaggerating, or that we are not doing enough, and we might feel judged by their words or forgotten by their actions. So I want to say something very important to you, to me, to all of us that have been misunderstood: I know the pain and the hurt because I have felt it too, but, it’s time to forgive and let go.

Let go

Before I became a spacial needs parent, I did not understand it either. I didn’t get it. To me, disability was something to be afraid of. I did not willingly choose for disability to enter into my life. But it did.

I wonder how many things I didn’t get before this was my journey.

I wonder if for most of us it might be hard to understand something until we finally live it.

The reality is our families are impacted by disability. Sometimes disability is not a big deal and we can be a regular family, but sometimes the challenges are significant. We face behaviors, delays, frustration, copays, IEPs and roadblocks, and all those comments from other people, their words, their actions, or their stares can be so hurtful.

But they don’t know, they will never get it. And while some people say things intending to be offensive, I truly believe most people are ignorant, not mean. Yet I can so easily hold on to those words, those comments, keep them stored in my heart and allow the hurt to grow, and grow, and grow, until I can no longer find any joy.

In the end I am only hurting myself. I build thick walls around me believing I am protecting myself, but I’m not. Instead I give the power to those words or actions and I isolate myself even more.

A heart consumed with anger or resentment hurts me and my family more than the people who don’t get it.

So it’s time to forgive and let go.

Let go, because when I hold on to the hurt and pain it can easily become all I see before me, behind me, and around me. It keeps me from enjoying life and I know there is beauty, there is peace, there is joy. I want that. I need that.

And the letting go and forgiving is not dependent on the people that won’t get it, it is dependent on me. It is my choice to let go and forgive so that I can allow the good to flow through me.

I try to extend grace, as much as I can afford, because I remember who I used to be.

So friend:

  • For the comments said in ignorance about your parenting, chose to forgive and let go.
  • For the comments said in ignorance about your child, chose to forgive and let go.
  • For the stares from insensitive people, chose to forgive and let go.
  • For the lack of invites to parties, gatherings, and dinners, chose to forgive and let go.
  • For the promises of help that never become a reality, chose to forgive and let go.
  • For the professionals or educators that you feel you have to fight, chose to forgive and let go.

I truly believe that as we offer grace, our words are more easily received. And while people might not get it unless they walk in our shoes, perhaps they will be willing to understand, to learn, to come along our side if we let go and offer some grace.

Forgive, let go.

And for the times that you truly feel like nobody gets it, that nobody will understand your journey, I want you to know something – as a special needs parent I get it. I do. And there are many other special needs parents that get it too. We get it. You are not alone.

Question: Are you parenting a child with a special need? How did this post resonate with you? You can leave a comment by clicking here.

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  • Nora Matthews

    One of my lowest moments with this was in a McDonalds after a prescription refill nightmare had left me with a child with near-dangerous levels of impulsivity. He was pressing all of the soda fountain tabs and an older gentleman stopped by to shame me about how I clearly couldn’t discipline my child. People have no idea what it’s like, and obviously we’re always in a confidentiality jam when these things come up– but it’s remarkable to me how many feel free to lecture strangers about their parenting.

    • Anna Lopez

      I do not agree with this “forgive and let go” approach. People should be challenged when they are rude to parents and their special needs children. If we just take their abuse without a refute, what possible motivation would they ever have to hold their tongue with the next poor worn-out, struggling parent dealing with a special needs child?

      If that had been me, I would have said something like, “Oh really? Do you know, then, all about special needs children with attachment disorder (or brain trauma, or whatever) and what their challenges are? Have you ever parented a child who has been through (xyz)? ”

      And perhaps “did your mother ever teach you, if you can’t say something nice, don’t say anything at all? Educate yourself about the facts, then perhaps you’ll have room to speak.”

      • True, but sometimes you just have to walk away and let people marinate in their own stupidity.

    • Oh man, Nora, we’ve been there…done that! 🙂

  • Thank you for this. As an adoptive special needs mom, I understand these emotions.

  • Matt Furlong

    At times it would be nice if people would have more understanding about the challenges we face with our children with special needs and sensitivities. If you don’t understand, that’s ok, but will you still walk by my side a time or two, so I have a shoulder when I’m overwhelmed and feeling on my own.

    • Anna Lopez

      Exactly. They don’t have to fully get it to extend some compassion and assistance.

    • If only more people would do this.

  • Anna Lopez

    Not understanding a fellow parent’s struggles or situation is still no excuse to be rude. I didn’t really understand about special needs/RAD kids before I had this child, but I was never ugly to another parent who was struggling! So I can’t extend this kind of benevolence based on the idea that “I was this way too once.”

    I will also add that even letting stuff go, should not be confused with resigning yourself to it. If one school won’t support you, look for another that will. If one church has no supportive people, shop for another! And so on. Finally, I don’t believe in taking insults silently. Ignorant, mean people will never learn if we don’t stand up for ourselves and our kids. Yes, be as polite as you can, but be firm and outspoken. Don’t teach your kids that they have to just take people’s abuse because they’re different!

    • Allisonm

      I’m not sure Mike is suggesting that we never respond to someone’s rudeness by correcting them–much the way that “rude” stranger is responding to my child’s and my perceived “rudeness” by saying something about it. The point I got from this was that I lessen my own effectiveness when I tie up my energy and time in ongoing resentment towards those who don’t understand or are rude. Instead, Mike seems to be advocating taking whatever action I deem appropriate at the time, then forgiving and letting it go so that I can expend my energy where it can be most useful–on caring for my own family and those others whom God puts in my path to love. Allowing others to live rent-free in my head is a little like setting myself on fire and hoping the offensive person at MacDonalds suffers from smoke inhalation.

      • Kristin Berry

        Great analogy!