Confessions of Special Needs Parents

Special needs parenting is full of challenges. Today's post is a compilation of confessions from guest blogger Ellen Stumbo and other special needs parents.

Special needs parenting is a combination of joys and hard things. Guest blogger Ellen Stumbo is here today with her confession and the confessions of other special needs parents.

Confessions of a Special Needs Parent:
The Hard Things

Parenting a child with special needs can be a challenge, and often those challenges feel like a strong tidal wave coming at us, threatening to make us lose our balance, to fall, to give up. But we don’t. We never do.

The love for our children compels us to stand strong against the tide crashing against us: the stares, the school system, the medical billing, the ignorance from other people, or the lack of support. And although we stand strong, we get tired, sometimes we are barely keeping our feet planted and we fear the tide will finally defeat us and wash us away. So we reach out and hold eachother’s hand. Because we know together we are stronger, and because we need someone to stand with us, we cannot do this alone.We face challenges. There are hard things about parenting children with special needs.

Social Isolation

We don’t want to be isolated, yet sometimes because of our children’s needs we find ourselves alone. We want friends. We need friends.

Special Needs Parents Feel Like We Are Not Doing Enough

Deep down we often wonder, could I do more? Could I try harder?  Am I really doing all I can do? Sometimes, we have an overwhelming feeling of failing at everything we do because we don’t have enough time or energy to do it all. We feel like we are failing with our kids, we feel like we are failing with the typical siblings, failing at our marriage, failing at keeping a neat home, failing at our jobs.

Siblings

At times, we feel like we are cheating our typical children from having a normal childhood experiences. We feel torn, and we fear that our typical children will feel less important or forgotten.

Comparing our Child to Typical Peers

We try not to compare, but sometimes it’s hard not to notice how different our children are compared to their typical peers.

Lack of Communication with our Children

It is hard when you cannot understand your own child because of a speech delay, and even harder when the lack of communication affects other social interactions and the forming of friendships.

Others

It is tiresome when other people throw judgment at us.  It is insulting when people hint they could do better and that our children’s behaviors are a result of poor parenting. The constant battle with schools, doctors, insurance companies, etc, is exhausting. Some people don’t even give our kids a chance.

The Future

We worry about the unknown, what the future holds. What will happen to our kids when we are not around? And how do we let go?

Dealing with the Diagnosis

When we first received our child’s diagnosis, we had to grieve the loss of the child we thought we would have. Once we deal with the diagnosis, we still have to deal with the everyday realities of our children’s needs. We want you to recognize the hard things about parenting a child with special needs, we hope that someday you will understand what it is like to walk in our shoes. Ultimately, we want you to stand with us, because when you do, you will see that we are courageous, funny, compassionate, resilient, brave, flexible, forgiving, generous, and so full of love. And we want to share that with you too.

What’s the Hardest Thing You Deal With?

Are you a parent of a child with special needs? What is the hardest thing you deal with as you parent your child? Leave a comment below or join the conversation on Facebook where Ellen asked, “The hardest thing about parenting a child with special needs is_____________”

Those responses were an inspiration for this post.

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Photo credit: www.freedigitalphotos.net

20 Comments

  1. roxanna jeffries roxanna jeffries
    July 31, 2013    

    i would like to see more stories on single parents of special needs and how they live ,strife and maintain

  2. roxanna jeffries roxanna jeffries
    July 31, 2013    

    i would like to see more stories on single parents of special needs and how they live ,strife and maintain

  3. July 31, 2013    

    All of the above, plus sometimes the “sigh” you can hear in a voice or on the face of a loved one because your talking about your child AGAIN and the worries you face or the things you have gone through.

  4. July 31, 2013    

    All of the above, plus sometimes the “sigh” you can hear in a voice or on the face of a loved one because your talking about your child AGAIN and the worries you face or the things you have gone through.

  5. July 31, 2013    

    “The hardest thing about parenting a child with special needs is_____________”………well you certainly hit the mark with the article above. But one thing that happens to me and I feel horrible about is when my son, who has Autism and other Dx has behaviors, meltdown, rage episode, and then I”m now in a grumpy mood to say the least and my other 2 kids, who are just being “typical kids” but I’m so irritated and frustrated that even little things bother me and I lash out at them. I hate when I do that and I usually realize quickly what I have done. But wow I feel bad and guilty and apologize to them and help them understand that mommy was just feeling frustrated and I didn’t do a good job of controlling myself. I do point out to my kids my mistakes, when I didn’t use my words. But our family is under so much stress from the day to day needs of our son, both medically and psychologically, that it does get the best of us sometimes and we lash out at the other family members. 🙁

  6. July 31, 2013    

    “The hardest thing about parenting a child with special needs is_____________”………well you certainly hit the mark with the article above. But one thing that happens to me and I feel horrible about is when my son, who has Autism and other Dx has behaviors, meltdown, rage episode, and then I”m now in a grumpy mood to say the least and my other 2 kids, who are just being “typical kids” but I’m so irritated and frustrated that even little things bother me and I lash out at them. I hate when I do that and I usually realize quickly what I have done. But wow I feel bad and guilty and apologize to them and help them understand that mommy was just feeling frustrated and I didn’t do a good job of controlling myself. I do point out to my kids my mistakes, when I didn’t use my words. But our family is under so much stress from the day to day needs of our son, both medically and psychologically, that it does get the best of us sometimes and we lash out at the other family members. 🙁

  7. July 31, 2013    

    Jennifer,

    You are a good mom dealing with a hard situation. Your practice of apologizing to your kids and pointing out your own mistakes shows that. Keep doing what you’re doing and remember you’re a human dealing with an almost superhuman task.

    Jolene

  8. July 31, 2013    

    Jennifer,

    You are a good mom dealing with a hard situation. Your practice of apologizing to your kids and pointing out your own mistakes shows that. Keep doing what you’re doing and remember you’re a human dealing with an almost superhuman task.

    Jolene

  9. July 31, 2013    

    Oh, yeah. The sigh. Sometimes I would steer the conversation away from the subject of our son just cause it was too hard to go there again and hear those sighs.

    Jolene

  10. July 31, 2013    

    Oh, yeah. The sigh. Sometimes I would steer the conversation away from the subject of our son just cause it was too hard to go there again and hear those sighs.

    Jolene

  11. July 31, 2013    

    Thanks for that suggestion, Roxanna. That’s a huge need that too often is neglected. If there are any single parents out there willing to share their stories, please contact me. I know you’re extra busy people, but I can do the writing if you share the content.

    Jolene

  12. July 31, 2013    

    Thanks for that suggestion, Roxanna. That’s a huge need that too often is neglected. If there are any single parents out there willing to share their stories, please contact me. I know you’re extra busy people, but I can do the writing if you share the content.

    Jolene

  13. nicole nicole
    August 2, 2013    

    The invitations for birthday parties, girls night out, dinner out with other couples that just stop coming or being invited to do. the fact that it’s easier going through the drive thru because eating inside is too hectic. The long & drawn out IEP meetings where it seems nothing is actually done like it should be so another meeting is called. always having to be in ready fighting positions to advocate for your child.

  14. nicole nicole
    August 2, 2013    

    The invitations for birthday parties, girls night out, dinner out with other couples that just stop coming or being invited to do. the fact that it’s easier going through the drive thru because eating inside is too hectic. The long & drawn out IEP meetings where it seems nothing is actually done like it should be so another meeting is called. always having to be in ready fighting positions to advocate for your child.

  15. August 3, 2013    

    Nicole, you’ve named so many hard things about parenting kids with special needs. The list can go on and on, can’t it? I hope in the midst of the hard things, you find moments of joy and peace. Without those moments, the hard things can become impossible. I’m praying for you.

  16. August 3, 2013    

    Nicole, you’ve named so many hard things about parenting kids with special needs. The list can go on and on, can’t it? I hope in the midst of the hard things, you find moments of joy and peace. Without those moments, the hard things can become impossible. I’m praying for you.

  17. August 4, 2013    

    I’m a single parent, youngest 10 w DS. would
    love to connect with other single parents!

  18. August 4, 2013    

    I’m a single parent, youngest 10 w DS. would
    love to connect with other single parents!

  19. August 5, 2013    

    Susan,

    Thanks for your comment. Have you seen Not Alone’s post for today? It’s written by single mom, Debby Kay, for single parents. Here’s the link: http://specialneedsparenting.net/a-word-of-encouragement-for-single-parents/. Once you’ve read the post, go to her Not Alone author page, http://specialneedsparenting.net/our-writing-team-2/debbie-kay/, where you’ll find links to her Facebook page and blog. Hopefully, that will lead you to the larger single parent/special needs community.

  20. August 5, 2013    

    Susan,

    Thanks for your comment. Have you seen Not Alone’s post for today? It’s written by single mom, Debby Kay, for single parents. Here’s the link: http://specialneedsparenting.net/a-word-of-encouragement-for-single-parents/. Once you’ve read the post, go to her Not Alone author page, http://specialneedsparenting.net/our-writing-team-2/debbie-kay/, where you’ll find links to her Facebook page and blog. Hopefully, that will lead you to the larger single parent/special needs community.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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