November 2010

Ages & Stages

I Have Needs, Too!

Siblings of Special Needs Kids

By Lynne Ticknor, M.A.

Behavioral evaluations … Academic assessments … Individualized tutoring … Occupational therapy … Developmental pediatric appointments … Physical conditioning exercises. The list goes on and on. These are just a few of the time-consuming commitments required of the parents of children with special needs. With so much time, energy and resources focused on the needs of one child, what’s going on with the sibling who does not have special needs?

Siblings of children with special needs often feel a range of emotions, including jealousy, anger, isolation, guilt, helplessness and depression. To help a child deal with these emotions, parents should start by explaining the disability in age-appropriate language. This explanation should be repeated and modified often as the child’s understanding and feelings will change over time.

For preschoolers, keep your language basic and clear. Children under the age of 5 can’t understand the special needs of the sibling even though they may notice differences. You might say something like, “Susie’s brain works a little differently, so we can help by being patient while she talks.” Preschoolers are likely to express their feelings through behavior, including acting out, temper tantrums and tension outlets, such as excessive thumb-sucking, because they cannot fully verbalize what they feel inside.

By the time the sibling is elementary-school age, she is acutely aware of the developmental, emotional and/or physical differences. This is the time to begin giving more detailed explanations and using proper terminology. “Your brother has autism, and he has outbursts because he can’t communicate his thoughts and feelings the way that you and I can.” At this age, the child is likely to feel conflicted—she can understand that things need to be different for her sibling with special needs, yet she resents the family situation. She might feel guilty about her negative feelings. She might behave in overly compliant ways so as not to cause additional strife, or she might rebel in order to gain attention.

Teenagers can understand detailed explanations of the disability. Because social acceptance is so important to them, a teen might feel embarrassed about having a sibling with special needs and might lash out because of her conflicted feelings. Some teens resent the added responsibility of being a sibling of a special needs child. Others become overly concerned and worry about the sibling’s future in the same way that a parent does.

Because parents must spend so much time with their child with special needs, it’s important for them to understand and appreciate that all children need time with each parent separately and with both parents together. Consider scheduling regular weekly time with each of your children to keep in touch with their needs and to play and hang out with them, just as you schedule appointments for your child with special needs.

Encourage your children to develop their own activities and interests outside the home. Hobbies and extracurricular activities provide a healthy outlet. Take an interest in each child’s activities and notice the child’s progress and enjoyment. A comment such as, “Hey, that fly ball you snagged out in left field looked like a difficult catch,” will make a child feel noticed and acknowledged.

Along with the difficulties inherent in growing up in a family with a child with special needs, the sibling is also navigating the typical trials and tribulations of childhood. Sometimes, parents miss signs that a child is having more serious problems due to the challenging family circumstances. Symptoms that parents often miss or incorrectly attribute to other causes include:

If you notice any of these signs, keep lines of communication open. Talk with your child or teenager about what you’ve noticed, and ask open-ended questions without turning the discussion into an interrogation. If the behaviors continue, seek professional assistance.

Siblings of all ages can find support in various places, especially on the web. The Sibling Support Project (siblingsupport.org) is a national effort dedicated to the lifelong concerns of brothers and sisters of people who have special health, developmental or mental health challenges. There you’ll find books, workshops (called “Sibshops”) and the largest listserv currently available.

Growing up as the sibling of a child with special needs can be a positive experience and a source of profound benefits. Adult siblings of children with special needs report that growing up in a nontypical household builds flexibility and problem-solving skills. Siblings learn valuable lessons in sensitivity, tolerance, compassion and patience— lessons that will serve them well in the future.

Books for Kids

Preschool

We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen

Hi, I’m Ben … And I’ve Got a Secret! by Julie A. Bouwkamp

Elementary

My Brother, Matthew by Mary Thompson

Oh Brother! Growing Up With a Special Needs Sibling by Natalie Hale

Special Brothers and Sisters: Stories and Tips for Siblings of Children with a Disability or Serious Illness by Annette Hames

Tween/Early Teen

The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Special Needs by Donald Meyer

Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs edited by Donald J. Meyer

Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Brian Skotko and Susan Levine.

Lynne Ticknor is a certified parent educator with the Parent Encouragement Program (PEP) in Kensington. She writes frequently about parenting and child development for national and regional publications. For more information, visit PEPparent.org.