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5 Ways to Support Your Kids, From a Special Needs Sibling

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Parents of kids with special needs kids often ask my advice on how to support their typically developing kids. My younger sister has CHARGE syndrome, so sibling issues have always been a priority for me, and my work as a disability researcher has really shaped my thinking. What can parents do to help their kids understand the role of disability in their families and build healthy, positive relationships with their brothers or sisters?

Think of the strategies below as ongoing approaches you can incorporate into your everyday lives. This is a blueprint, not a checklist, that can change and grow with your family over time. And don’t forget to ask your kids if they have anything to add!

1) Listen – It sounds so simple, but even parents with the best intentions stumble on this one. Ask what’s on your child’s mind and just listen to what they say. Be mindful not to make assumptions or interpret their own feelings in terms of yours. Do not interrupt or assume they are angry/sad/confused/____ unless they use those words themselves. It is perfectly possible they don’t feel any of those things. The fastest way to shut down these important conversations is to put words into your child’s mouth. Simply ask how they feel or if anything is on their mind. And listen. If they don’t want to talk to you, don’t take it personally or force the issue. Just let them know you’re there.

2) Let Them Be Kids – Typical sibs of special needs kids often seem grown up for their age. They can seem a little too mature and articulate. Why? I’ll use myself as an example. By second grade, I’d already tagged along to countless appointments with physical therapists, speech therapists, ophthalmologists, audiologists, developmental pediatricians and special educators. In the process, I picked up a vocabulary that was unusual among my peers. I also spent lots of time with these adult professionals, I knew my family was dealing with some big issues, and I was asking my own questions about my sister. Combine all of this with the task of explaining our situation to my classmates and teachers, and I was an “expert” by age 7. But I was still 7. Forget about the idea that age is more than a number and don’t let your child’s seemingly mature nature fool you. Let your children be their number whenever they can. Embrace it.

3) Don’t Make Your Struggles Their Struggles – Sibs grow up with disability in a way that most parents don’t. Disability is typical for typically developing siblings. But did you know that parents are often the main factor in shaping how sibs experience disability in the family, regardless of diagnosis? We follow your cues, so modeling is key. Avoid the temptation to share your darker thoughts or anxieties. But my child is so mature and we need to be honest, you might be thinking. But be careful: your kids will remember any fears you share with them long after the conversation is over. Find a different outlet for yourself; let your children have their own struggles, and support them along that journey.

4) Be There, Even if They Say They Don’t Need You – Find a way to be there for your child. If they play basketball, have one parent go to each game. Call in help from relatives so you can both make it to graduation. Never listen when they say “It’s OK, you don’t have to go” to a honors ceremony. Why? Because you do have to be there if it’s at all possible. Sibs are strong and they can handle it, but they shouldn’t have to. They might not notice your absence when they’re young, but I guarantee they’ll remember it once they’re older and looking back. One of my parents was always there, and it couldn’t have been easy. I didn’t appreciate it until many years later, but I’ll never forget their presence.

5) Encourage Them to Find Themselves – Do not let your children define themselves solely by your family. Encourage them to find their own interests and explore their talents. Soccer, art, singing, band, math team – whatever! The important thing is that they find something they enjoy and can take pride in. They’ll thank you for it one day. At the same time, be sure they have opportunities to connect with other sibs. This can be through a local sib group or workshop, or an online community. No matter how much your child excels at sports or school, there might be times when he feels like nobody shares his experiences. Exposure to other sibs will reassure him that he’s part of a broader community – one made up of a diverse and talented group of brothers and sisters whose lives have been touched in similar ways.

Follow this journey on Disability Fieldnotes.

Originally published: March 16, 2016
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