The Problem of Special Needs Siblings

The Problem of Special Needs Siblings -

My older daughter is a great kid. After she turned three years old and finally began sleeping, she’s been a pretty easy kid to raise, overall. She is loving, kind, understanding, funny, and smart. So what’s the problem?

The problem is that she’s the sibling of a child with special needs. It took me a while to realize it, but that means she has special needs of her own. As I talk to other special needs parents, I’m beginning to realize this is not unusual.

The Problem of Special Needs Siblings

Siblings of kids with special needs have the same needs that all kids have. They want to be loved, have friends, and feel accepted for who they are. They want the freedom to pursue their interests, and they want to spend time with people who have things in common with them.

The problem is that they, like their parents, often feel isolated and alone because their lives are so different from what many of their friends experience. They feel like they don’t have anyone to talk to who cares or understands about sitting in countless waiting rooms, being envious of the “fun” their sibling is having in therapy, or the frustration that comes from enduring another meltdown. They feel like their parents are consumed with the needs of their sibling, and they often feel like they must put extra effort into being “good” and not causing “trouble” because they realize their parents have their hands full and don’t need any extra stress to deal with.

I have had conversations with my daughter about these issues and more, and it broke my heart that she has taken so much of a burden and responsibility on herself. I have had to relieve her of some of that, although I love her for wanting to carry it.

To solve the problem of being a special needs sibling, here are some things we’re doing with our daughter:

  • Listening. Taking time to really listen to our daughter, to ask probing questions and then to really hear the answers, even if it’s painful, is one way we have shown our daughter that we care and that we’re all in this together.
  • One-on-one time. We try to arrange for both of our children to have one-on-one time with us and with other family members. They enjoy this time that they don’t have to “share” us and can focus on their own interests and ideas for a couple of hours.
  • Freedom. While we appreciate her willingness to protect and advocate for her younger sister, and in some cases it’s necessary that she do so, we do not expect our older daughter to be in this role all the time. We want her to enjoy being a kid and to not have adult responsibility at times when she shouldn’t have to bear that burden. We give her the freedom to direct adults who defer to her intimate knowledge of the situation to us. We told her that we’ll do the educating, awareness training, and advocating when it’s necessary in most situations. It was a relief when she realized we didn’t expect her to carry that burden.
  • Solitude. Our older daughter’s personality type needs a lot of quiet time and alone time to recharge and get ready for the next round of intense social interaction. She enjoys reading, knitting, listening to music, and doing crafts in the solitude of her room. She also needs time to de-stress when things have been tense because of lots of appointments, meltdowns, or other extra pressures related to the special needs situation she lives in. When she needs time away, I do everything in my power to guard her quiet time.
  • Exclusive rights. To help our daughter build and maintain a sense of identity separate from her special needs sibling, we give her exclusive rights to certain activities. She gets to keep these for herself without her sister tagging along. There aren’t many of these because we are very family-oriented, but she does have a few things each week that she does that are hers alone. She cherishes those times.
  • Affirmation. When my daughter struggles, I remind her how we’re all different people and are better in so many ways because of our experience our precious princess. We can’t imagine our lives without her and are more compassionate, kind, understanding, and selfless as a result. Those are things that will stand us in good stead for a lifetime, and I tell her how much I admire the young woman she is becoming—and much of that is due to her role as the sibling of a child with special needs.

The problem of special needs siblings has only become very evident in our household over the past year or so. We’re still learning how to meet the needs of both of our children and to balance it all. They both need us, although in very different ways.

For more good ideas, read 10 Ways to Give Attention to a Sibling of a Child with Special Needs.

How do you meet the needs of the special needs siblings in your life?

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17 Responses to The Problem of Special Needs Siblings

  1. Rebecca says:

    This is a beautiful post, Jennifer. I can’t tell you how much I appreciate your desire to help parents who have children who learn at different rates and have health issues. It is so easy to isolate when your family is different – especially in a world filled with bumper stickers about children who made the honor roll and you’re just trying to make it through one subject in the midst of a health storm, while helping another child who does not have that same ‘gift’….. Praying for you, sweetie and all who are walking this path.

    • Thank you, Rebecca. I’m praying for you too. You’re right. Our children are vastly different, and we have to focus on them as individuals and pray for the grace and strength each day to meet their needs. God knows what they need better than we do, and He will show us the way. Love you, sweet friend!

  2. What a wonderful post, Jennifer! Having a kid with special needs affects everyone in the family and yet people “on the outside” of that really just don’t understand. I’ve seen these same types of issues with my own children. Thank you for sharing this—it’s very helpful to see how you’re helping your own daughter.

    • You’re welcome, Susan. I’m glad you found it helpful. You’re right. When there is a child with special needs in the house, the entire family automatically has special needs because of the dynamics that brings. God is faithful to show us the way, and He’s doing wonderful things in and through all of us. Don’t doubt it!

  3. What a wonderful post addressing the needs of siblings of those who have special needs, Jennifer. Thanks for sharing this!

  4. Ashleigh S says:

    Thank you so much for sharing this! It is a blessing that you are living your struggles, victories and learning process so openly.

    • You’re welcome, Ashleigh. I’m glad you found it helpful. It was incredibly difficult to write. Stay tuned! I’m sure I’ll have more to say on this topic as I learn more about raising my precious girls!

  5. Dawn says:

    I so appreciate this post. I have one “normal”and three special needs kids. The youngest normal one experiences all of the above. Thanks so much for this post.
    Blessings, Dawn

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  10. lisa tolen says:

    very nice

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