When Being a Special Needs Sibling is Too Hard

“She gets all the attention. Everything is about her!” My third daughter was crying out in desperation for attention and though I wished I could tell her it wasn’t true, it was. Her special needs sister requires 24/7 attention. She throws things, she breaks things, she’s super cute, but she needs attention all.the.time. But my other daughters need attention too special needs siblings need so much more than to stand in the shadows of their sister’s needs.

Being a special needs sibling is hard. Sometimes too hard. Suggestions for ways to help siblings of special needs kids.

Even before our youngest daughter was diagnosed with Rett Syndrome, the effects of her needs were already taking a huge toll on our family.

A child that doesn’t sleep, has a mother that doesn’t sleep.

And when the mother becomes sleep deprived, everything goes downhill from there.

My three older daughters watched as their energetic, fun mama disappeared and a tired, edgy, frustrated mama took her place. For a while we tried to convince ourselves that it was only a stage and we’d get through it. But days, turned into weeks and weeks into months and then months turned into years.

Six years.

Granted I sleep more now than I have in many years, but 5 or 6 hours of sleep that is interrupted four or five times… well, it’s tough.

But here’s the thing. I’m an adult.

I’m an adult and it’s hard. The emotions, the exhaustion, the anxiety.

For our tiny nine-year-old these huge emotions had become unbearable. And from the outside it seemed to some that she was just an angry kid.

Fighting, screaming, hitting, yelling, biting…

The inability to share a bedroom, to share her toys, to share anything.

Her meltdowns were becoming even more frequent than her special needs sister’s.

It was all a cry for help. 

Our daughter, and every special needs sibling, deals with very big emotions every.single.day.

And while we can’t give her a free pass to wreak havoc on the lives of everyone around her, we needed to figure out a way to meet her needs and her sister’s needs.

In my sleep deprived stupor, I had failed to acknowledge that she was experiencing the same emotions as me.

And that if I was experiencing anxiety attacks when something prevented me from sleeping, her anxiety over her sister ‘invading’ her space was just as real.

IS just as real.

Because it won’t magically go away.

What do special needs siblings really need?

Special needs siblings need someone to focus on them. To help them forget the stress and the frustration. To remind them that they are important and indeed, special.

They need to talk to someone who won’t judge them for being jealous of their sibling with special needs. Maybe a therapist, maybe just a set of open, safe ears.

They need time away. Whether it’s a lunch date with mom, a trip to the store with dad, a weekend at Grandma’s, it doesn’t matter. They just need a break from all the stress.

They need grace and mercy. They aren’t always going to show their emotions in a constructive way. There may be anger, there may be the silent treatment, there may be broken rules and lots of slammed doors. It may appear from all sides that they need discipline, but really…

They need grace.

Do you know a family with a special needs child? Please don’t forget the siblings of that child. They need YOU.

Being a special needs sibling is hard. Sometimes too hard. Suggestions for ways to help siblings of special needs kids.

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One Comment

  1. You are absolutely right. Unfortunately, there is not much of an ecosystem which can help the overstressed parents and the siblings. I have taught special needs children for almost 20 years and have seen this very often. Wish I could somehow extend my support.