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posted: 9/3/2014 6:01 AM

Siblings speak up with advice for parents

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By Sherry Manschot

As parents we know that every child is different. No two are alike, even if they are siblings. There are different personalities, interests and motivations. We hopefully treat them fairly and give each one the support they need. But what happens when one child needs significantly more time, attention and energy because of a special need? How does the other child feel?

Who better to ask than the siblings? I wondered what advice they would give parents about how to cope with the child without the special need. I met with three siblings who indeed offered some guidance to parents.

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Sixteen-year-old Ryan and 12-year-old Mark Gronowski of Naperville are brothers. They share a love of sports, video games and genuinely like to spend time with one another. Like brothers, they are experts in pushing one another's buttons. They also have a fierce protectiveness over each other.

Katie Kleve, 16 of Wheaton, is a self-professed micromanager of her 14-year-old brother, Jack. Her love for her brother is obvious. Her whole face lights up with an infectious smile when talking about him. She admits though that she has heard Kids Bop Christmas Music and seen the Country Bears Jamboree enough to last a lifetime.

Amara Barnes, 24, of Bartlett, the middle of three children, makes it a point to carve out special time every Saturday to spend with Kira, her 28-year-old sister. Amara says that, among other lessons, Kira has taught her to be kind and generous to everyone.

All three of these sibling pairs share one thing in common. One of them is living with a disability and the other has a unique insight into the role of being a brother or sister to someone with a disability.

Ryan lives with a combination of disabilities including a seizure disorder, ADHD, a cognitive disorder and autistic tendencies. Jack lives with autism. Kira lives with a hearing impairment and autism.

First on the list was for parents to clearly explain what is going on with everything from a diagnosis to medical procedures. For as long as Mark can remember, his mom has always talked to him about Ryan's diagnosis, his medications and why Ryan's brain works differently. He says it was probably around third or fourth grade that he really started becoming aware of Ryan's difficulties.

At about the same age, Amara figured out she needed to help out more because of Kira's needs. She recalls that Kira was frequently sick or in the hospital and at therapy quite a lot. Though it has to be age appropriate, keeping an open dialogue is important to keep siblings informed, aware and connected.

The next piece of advice is to teach patience. Of course this is easier said than done. Mark understands that Ryan is different and can't control himself but that doesn't make living with it any easier. Ryan will play his music so loud so often that, at times, it becomes annoying. Mark will ask Ryan repeatedly to use his headphones. On an occasional basis this isn't too bad, but as a regular part of life it can be wearisome.

Katie can relate as she has the same experience with Jack and his music. "Some days you can work with it by tuning it out and other days you reach a breaking point," says Katie. Amara has learned that compromise seems to be the best way to handle many situations and sometimes the only way to make things work. For instance, the Barnes family has had many vacations at Disney. They spend a lot of time on certain rides because they are Kira's favorites. Compromising may be the only way to get on rides that everyone else in the family likes.

I asked these siblings if they had an issue with fairness growing up. They said that really wasn't a concern. Growing up it just became understood that what was fair for them was different for their sibling. Part of that was a result of parents constantly reinforcing how their sibling had needs that were different and had a different level of comprehension.

As Mark explains, "If I was punished it might be for a day. Ryan's might last 10 minutes because he wouldn't remember why he was being punished." Katie says it's hard to say that any one part is unfair. After all she gets to have so many more typical experiences that her brother doesn't. She would go to sleepovers and out with friends much more that Jack does.

Interestingly, they did suggest that parents not give in to the child with special needs as often as they do. From their perspective, giving in to tantrums, especially when in public, became something more of a game that their siblings knew how to win.

Not surprisingly, all of them agreed that parents need to set aside one-on-one time for each child. Katie suggested that it can be as simple as going for an ice cream cone once in a while. Just knowing that you have that special time where you don't have to share the attention is precious.

Mark also has similar advice on time. But it has more to do with giving your child time without the sibling. He suggests that parents need to let the siblings have their own time and space. Mark, wise beyond his years, relates it to parents wanting time away from their kids. It isn't that they don't love them; they just need to be able to relax without them occasionally.

Finally, Amara had some advice for brothers and sisters who might not be as involved in their sibling's lives as they could be. She says you can't abandon your sibling. While there were times in her life when spending time with Kira was not a high priority, she has come to appreciate their special sister time. She now carves out time every Saturday with Kira to grab a drink at Starbucks, work at the food pantry together, have dinner and go to church. "It does take patience, understanding and asks a lot of yourself to have a healthy relationship with your brother or sister with special needs," she says. "But if you don't, you are the one who is missing out."

• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.

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