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Supporting a Parent and Sibling of a Child with Special Needs

Dear Elizabeth,
My oldest daughter has special needs and now my 3-year-old is asking why her sister doesn't play with her. Where can I go to get help for my kids and myself?
Sandra Casado Los Angeles, CA
Elizabeth's Tips
Elizabeth Sanchez
Elizabeth Sanchez
Supporting Parents:
  • Offer emotional & social support
  • Treat parents & kids as individuals
  • Be patient with parents emotional reactions
  • Parent to parent groups offer guidance & support
Supporting Siblings:
  • Encourage your child to honestly express his feelings
  • Spend one-on-one time with each child
  • Connect your child with a sibling support group
Expert Advice
Don Meyer
Don Meyer
Director, Sibling Support Project
The Importance of Getting Support
Parents with kids of special needs are thrown into a new world of agencies, specialists, etc. and the parents need all the lifelines they can get, so I encourage them to seek out others that have similar situations. Parent-to-parent programs are wonderful because they match “seasoned” parents with the parents of newly diagnosed kids that have special needs. There are parent-to-parent programs across the country and these “seasoned” parents have been trained to have active listening skills.

Where to Turn When There’s No Support
Nationally, I would say turn to Parent-to-Parent support groups, like “Parent to Parent USA” where you can find a local support group or parent that has a child with special needs to help. Also, “Arc of the United States” is a national organization that can help families.

These groups are therapeutic, but they’re not therapy. There will be some kids, or parents that need more help, so be aware and possibly seek additional counseling services. Reach out to others. Don’t be afraid to ask for help. Make time for yourself, even if it’s just a few minutes to take a breath. The better you take care of yourself, the better you’ll take care of everyone in your family. Also, the Internet has been a great boon for services that allows parents to get support and information without having to leave their house. Parents of kids with special needs have little time to go to meetings, so if they can get it at 3:00 am in their pajamas, the better.

Challenges that Siblings Face
Brothers and sisters have many the same issues that parents do. On top of that, it’s likely that the sibling will have a relationship with the child with special needs for 65 years or longer – longer than the parent or doctor or caregiver in the child’s life.

Also, their unique concerns are: embarrassment, guilt that perhaps they caused their sibling to have special needs, or guilt that they can do things their sib can’t do. Also, they can’t express their feelings like anger because of something their sibling did, because if they act on it, or react, it’s “wrong.”

Siblings need age-appropriate information from many sources, info on the special need and the treatment, and updates as they age. Remember again, this sibling is usually the family member who’s going to have that long-lasting relationship. Give these children the opportunity to meet others kids that have siblings with special needs. A great national program is called “SIB KIDS” and the books I recommend for older children is “Views from our Shoes” and the “Sibling Slam Book.”

Also, it’s critical that parents have the best communication possible with their kids. I encourage parents to carve time to spend one-on-one time with their typically developing kid. It can be something simple just to let them know by deeds and words that you care about them as individuals. Parents can get creative, like they say, every month we go to lunch, take a hike, and we talk and talk. Other things parents/providers can do is to read the book “Rachel Simon’s Riding the Bus with My Sister” so they can relate to more of what their typically developing child is going through.

Future Plans
Making plans for the future of all the kids in your family is critical and it’s important to let the kids know age appropriately what’s going to happen to the sibling with special needs in the event that mom and dad can’t take care of them. That’s because the typically developing child will assume it’s their issue to take care of their special needs sibling. It’s important for parents to give their child freedom, because everyone will benefit including that child with special needs. Chances are, the typically developing child will be involved in the child’s life, but it is better that they were give the chance to have their own life as well. Also, the single strongest factor is the parent’s interpretation of the situation that will reflect on their kids.
Child Care Provider Comments
Yuri Martinez
Yuri Martinez
Mother of three
I have three kids, and my middle child, Isabella has Down’s Syndrome. This was hard to accept at first, but got easier. I’ve worked very hard to help her develop through therapy and now I’m trying to get her into speech therapy. Plus, I work so raising three kids and working is a lot of work. I find support through many ways, and luckily, my husband, Chris, always tries to give me a break whenever he can, even if it’s just for a half-hour so I can take a nap, catch up on work, blog, or catch my breath. Also, once a month, I go to a Mom’s group of kids with Down’s Syndrome. After the meetings, I feel reassured that I’m not alone. I feel blessed that my daughter is high functioning and healthy.

My son, Noah, will sometimes get jealous that his sister gets a lot of attention and special care, and I will try to reassure him that his feelings are valid and that it’s okay to feel this way. I encourage him to speak up about his feelings and express the way that he feels openly and honestly. Sometimes in this situation, my husband will take Noah on a walk or spend some “guy time” with him to let his son know that he is also special.
Annett Johnson
Annett Johnson
Child care provider for 11 years
I meet with the parents of the kids in my care three times a year, which is required by the school in order to keep the parents up to date with their child’s progress. For me, it’s all about communication. I hug the parents and tell them that they can come to me whenever they want. I try to reassure the parents as much as possible that they are not alone. It is extremely important. I feel the need to teach parents how to handle their children at home to prevent outbursts. I have told the parents that they can call me with any questions they may have. It is important to try different things until you find what works best. Each child is different.
Becky Robinson
Becky Robinson
Grandmother of two
My son and grandchildren live with me and my husband and our seven year old, so we’re a full house. My granddaughter, Breena, has Cerebral Palsy and Holoprosencephaly. I help with Breena’s physical therapy, dressing her and buying clothes for all of the children. My husband and I support my son by providing money for food, clothes, herbal supplements, acupuncture, therapy and general care.

My young daughter, Ariel, often gets jealous if I show too much physical affection to the grandkids. I deal with the situation by telling the children what is okay and what isn’t and what the consequences are in life. I try to equal out my time in order to prevent jealousy. Caring for my family is a part of my life and I find that helping others makes me feel complete. I feel a big sense of accomplishment.

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Topic: Special Needs
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Related Episodes
Recognizing Special Needs
Most Common Special Needs
Sibling Support Project
Family Village
Parent to Parent USA
The Arc of the United States
Sibshops: Workshops for Siblings of Children with Special Needs by Donald J. Meyer and Patricia F. Vadasy
Living With a Brother or Sister With Special Needs: A Book for Sibs by Donald J. Meyer and Patricia Vadas
We'll Paint the Octopus Red by Stephanie Stuve-Bodeen
I Can, Can You? by Marjorie W. Pitzer
Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer (Editor), Cary Pillo (Illustrator)
The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs by Don Meyer (Editor), David Gallagher (Author)
Rachel Simon’s Riding the Bus with My Sister by Rachel Simon
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