Support for Siblings of Special Needs Children

Two teen girls with disabled brotherWith the magnitude of demands placed on special needs families, siblings of special needs children can often feel overlooked and in need of emotional support. A “special needs child” is defined as having a medical, developmental, or neurological challenges, or another type of disability which impacts the entire family system, thereby requiring special supports (i.e. medical, educational, etc.). In many families where such challenges are present, it’s inevitable that the added stress impacts not only parents and the child in question, but also typically developing siblings. In fact, rates of depression, anxiety, and chronic stress are higher for the special needs family. But with adequate supports, such impediments can be reduced. Special needs disabilities can run the gamut from severely disabling conditions, such as cerebral palsy, in which a child is wheelchair bound and cannot speak, to a high-functioning child with an “invisible” disability, such as attention deficit (ADHD) or dyslexia.

Special needs siblings may feel the following:

  • guilt about being a “typically” developing youngster;
  • embarrassment about a sibling’s behavior in front of friends;
  • frustration that the sibling may not be able to relate or play at the same level;
  • worries about the health and survival of the sibling, and the impact of responsibility placed upon the sibling once parents become elderly;
  • resentment that attention/services are diverted to the special needs sibling;
  • loneliness, or a feeling that peers may not understand what they are going through;
  • parentification in caretaking role of sibling, should parents not have adequate support/resources or emotional attunement to the sibling. It would make sense that special needs siblings might be at higher risk for depression and anxiety if they do not have support and resources available.

Your child may benefit from a referral to a competent and compassionate psychotherapist who specializes in special needs family therapy. It is of vital importance to special needs parents is to look for the following symptoms in siblings of special needs children:

  • feelings of hopelessness, marked depressed or anxious mood for more days than not, isolation and withdrawal from peers, or a drop in grades or absence from school;
  • marked increase in irritability;
  • insomnia, appetite changes, panic attacks, and any clear behavioral/mood change that is in sharp contrast to the child’s typical baseline mood/behavior.

Likewise, if any parent/caregiver exhibits the above symptoms, I recommend seeing a family psychotherapist as soon as possible.

There are also many benefits and unique experiences for siblings of special needs children, however. They have the opportunity to learn caregiving and sensitivity that many of their peers may not experience.

Special needs siblings may also feel the following:

  • higher level of maturity than peers, given the opportunities to practice empathy and patience with the special needs sibling;
  • ability to embrace cultural diversity as relates to special needs and families that are not “typical”;
  • protectiveness of the sibling, should he or she be in a position of bullying;
  • pride in milestones accomplished by the special needs sibling;
  • tolerance of people’s differences;
  • increased emotional intelligence and insight to the human condition;
  • opportunities to be involved in a strong family unit that focuses time and attention on all family members;
  • loyalty to and cohesiveness with the family unit;
  • gratitude for health and vitality;
  • appreciation for siblings’ gifts/strengths, in light of any challenges;
  • social adeptness: the sibling often is quite gifted in reading social cues and relating to people, having had much practice “translating” the world to the special needs sibling;
  • resilience: they have also had much practice in managing adversity; they are often well-prepared for the real world, having had to problem-solve and endure challenge as a young person;
  • creativity and resourcefulness: Siblings often must creatively problem solve strategies to help special needs families work around the special needs child (i.e. researching wheelchair friendly restaurants, creating a music CD for a blind sibling, etc.)
  • mindfulness, focus, and gratitude: many siblings have found a peaceful emotional state as they accept the challenges and advantages that accompany a special needs family.

It is true that there are an equal or greater number of positives and opportunities for the special needs sibling, when given the appropriate support and resources. Several websites and references are listed at the end of this article to support the special needs sibling in acquiring appropriate support to thrive and embrace being a special needs family member. The following objectives are also of great importance for special needs parents, in an effort to ameliorate the stress involved with being a member of a special needs family:

  • Provide ample one-on-one attention to all children in the family, not just the special needs child.
  • Maintain high standards and expectations for all children, and, as much as possible, an expectation for all children in the household to abide by the same rules, consequences, and privileges.
  • Be able to describe the special needs child’s disability to your “typical” child in a developmentally sensitive manner. Allow your child to ask questions about medical/educational/etc. interventions, course of treatment, what to expect long-term, etc. Be aware that preschool-age and younger may have a difficult time understanding and may need play/art therapy with a trained professional to assist in understanding the disability and answering any questions the child has. Older children (school-age) may wonder if the disability is contagious, and may need reassurance that they can’t “catch” the disability. Teens may need help with their mixed feelings of loyalty and embarrassment, as peer relationships become increasingly more important. Children of all ages may wrestle with guilt that they do not struggle with the same challenge as their siblings, and may even feel a pressure to achieve greater accomplishments to compensate for any “deficits” in their sibling.
  • Reassure your typically developing child that his/her sibling is receiving the services he/she needs to develop optimally, that it is not their fault that their sibling has a disability, and that it is paramount to be a unique individual with her/his own unique dreams and gifts. Take the pressure off siblings and practice stress management activities like deep breathing, journaling, family discussions, and family fun.
  • Family fun is really important. Find ways the entire family can bond together and laugh, whether you do something like swimming, hiking, singing, Pictionary, or whatever common-ground activity brings smiles, laughter, and family unity.
  • Connect your typically developing child with a support group for special needs siblings to reduce isolation, increase validation, and reduce stress (see #5 in Resources, below).
  • Acknowledge any concerns siblings may feel or demonstrate in behavior, and do not hesitate to enroll your child/family in a supportive psychotherapy program for the entire family.
  • Model self-care as a parent; get your own psychotherapy, self-care regimen, and support, engage in stress-reduction activities, and include your family or designate a quiet time where everyone practices meditation, deep breathing, yoga, listening to music, etc.
  • Allow typically developing siblings to have their own activities, which are specific to their talents and interests. Help them to flourish by attending sporting events, cheering them on, and encouraging friends and family to do the same. Honor each family member with rewards for unique gifts and talents (winning a spelling bee, scoring a goal in soccer, etc.). Pay attention to each family member and celebrate everyone’s successes and triumphs.

Most importantly, keep communication open with regular family meetings to problem solve about communication issues, chores, etc. Then take the opportunity to play a family game, laugh, dance, sing, and bond. As parents, keep a positive spin on being a special needs family; your situation does not have to be one of drudgery.
On the contrary, with the right resources and supports in place, life can be deeply meaningful, full of purpose, and imbued with unconditional love. Gifts and talents not detected before are discovered and embraced. Life can actually be beautiful. It is up to the parent to set the tone, to take the “emotional read” on the family, and link the family up with resources and supports, which make a world of difference in supporting the emotional health of the special needs family.

Resources for special needs siblings:

  1. Siblingsupport.org: for a listing of support groups for special needs siblings and how to get a group up and running in your community
  2. Thearc.org: sibling support network
  3. med.umich.edu/yourchild/topics/specneed.htm: University of Michigan link for special needs families
  4. friendshipcircle.org/blog/2013/04/25/the-importance-of-parental-support-and-guidance-for-special-needs-siblings/: Article with resources for sibling support The Friendship Circle website
  5. nytimes.com/2001/03/06/health/06SIBL.html: Article from New York Times (2001) in support of special needs siblings
  6. Meyer, Donald and Vadasy, Patricia. (2008). Sibshops: Workshops for Siblings of Children with Special Needs (Revised Edition), Brookes Publishing Co.
  7. Meyer Donald. (1997). Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs, Woodbine House.
  8. Meyer, Donald. (2005). The Sibling Slam Book: What it’s Really Like to have a Brother or Sister with Special Needs, Woodbine House.
  9. Bleach, Fiona. (2002). Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism
  10. Gordon, Michael. (1992). My Brother is a World-Class Pain: A Sibling’s Guide to ADHD-Hyperactivity
  11. Stuve-Bodeen, Stephanie and Devito, Pam. (1998). We’ll Paint the Octopus Red
  12. Choldenko, Gennifer. (2004). Al Capone Does My Shirts
  13. The Sibling Information Network Newsletter: for quarterly support for special needs families

© Copyright 2013 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea Schneider, LCSW, therapist in San Dimas, California

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • 13 comments
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  • Lisa

    Lisa

    May 10th, 2013 at 10:33 AM

    I read an excellent blog called Chasing Rainbows. The family has suffered 9 miscarriages, but celebrated 2 successful births. The older son just passed away close to a month ago at 5 1/2. He had many special needs and a very dedicated family who saw to every one of them. He has a younger brother who is obviously missing his big brother right now. The family is very concerned with his well being and his grief and is doing everything possible to support him. And, guess what? They day the older brother died, they found out they were pregnant! It’s a wild ride, and I am so glad they are not forgetting the needs of their “normal child” in the process.

  • Gregor

    Gregor

    May 10th, 2013 at 10:35 AM

    I have a special needs child in addition to two other children. I am in my late 60’s and my special need child has always lived with me. I know when I get older, there is no way I’ll be able to care for her. I feel so much guilt every day knowing that my other two children are going to be saddled with caring for her once I can’t anymore. Of course, there are group homes, but the thought of someone mistreating her is more than this old man can take.

  • Kevin G

    Kevin G

    May 10th, 2013 at 10:38 AM

    i think the invisible kind of thing would be the worst. for the brothers and sisters. everybody’d be like what’s wrong with your brother why is always acting like that and then of course the normal kids would have to defend their brother which can start a fight.

    sure, it ain’t easy so i hope all those people with special needs brothers and sisters can get the support they need from whoever can give it to them and not just get pushed to the side

  • Candy

    Candy

    May 10th, 2013 at 10:40 AM

    My little sister. She was disabled. We all cheered so much for her. When she could finally walk. All my friends loved her. Just as much as my family did. It was so sad. On the day she died. I am the one who found her in her bed. When I went to wake her up for school. I miss her everyday. So, so, so, so, so much. She was truly my best friend. In every day. I’ll be glad when I get to heaven. So I can see her again and we can run and play together.

  • Pappy G

    Pappy G

    May 10th, 2013 at 10:43 AM

    In my daughter’s family they have one little normal girl and one little retarded girl they just love them both so much but i can see that the normal one gets so jealous sometimes of all the attention her sister receives i mean you can’t help but love the one that ain’t normal she is just the sweetest most loving child you ever wanted to meet
    I always try to make sure I give them both equal attention but it’s hard when the normal one is acting spoiled while the other one is sitting over there as pretty and sweet as can be guess that’s something i need to work on, right?

  • Grover

    Grover

    May 10th, 2013 at 10:46 AM

    It’s true that it’s hard to be the one without the problems in the family.

    Whenever my mom and dad would have to be away from the house they’d get a babysitter.

    But they made it very clear that I had to watch out for my brother with special needs.

    If anything happened to him or get got upset while they were gone, I’d always get in trouble for it and get the blame rather than they babysitter.

    I used to get so mad and my mom and dad just didn’t get it.

    They thought that since he was my brother, it was my job to always be looking out for him no matter what I wanted to do.

    As you can see, I didn’t have too much fun growing up.

  • Butterfly Rose

    Butterfly Rose

    May 10th, 2013 at 11:44 AM

    My aunt and uncle always did so well with my three cousins. Two had special needs and one did not. They always made sure no one felt left out. Once a month, they’d have a special day with one of the kids while we watched the other two. Truth be told, it was really good for my sisters and me to have a close relationship with people with disabilities. I guess my family really worked hard to “do it right.”

  • Dana

    Dana

    May 10th, 2013 at 11:46 AM

    Great idea to give websites. I am excited to look into them all.

  • Sheila

    Sheila

    May 10th, 2013 at 11:48 AM

    Best suggestion by far:

    TAKE CARE OF YOURSELF.

    Your kids won’t get no better if you don’t care of there mom or dad or whoever takes care of them cuz they need someone healthy and happy to lead there homes.

  • Donnely

    Donnely

    May 10th, 2013 at 11:53 AM

    ok so this reminds me of something my girls teacher once told me about having a speical needs child
    its like you pack to go on a trip to france. you read books about france and buy clothes for france and plan your whole trip around france andn then you get on the airplane and you’re so excited to go to france.
    but then when you get off the airplane your in japan instead of france and you have all these feelings about being robbed of your trip to france. but then you start to look around and see how pretty it is in japan
    and then you start to be glad that you are on this tript o japan even if it isn’t the one you planned and you start to see the beauty in it
    probably it’s like that for brothers and sisters too they think they r gonna be a big brother or sister to a certain typie of kid and then they get this one that is so differnet from what they thought it was gonna be
    i guess it is our job as the parents to h elp the brothers and sisters see tat there baby berother or sister is still wonderul and beautiful even if it isn’t whta they were expecting.

  • Rylee P

    Rylee P

    May 10th, 2013 at 6:21 PM

    I can find so much truth within this because I grew up with a brother with special needs who consumed so much of the family’s time that I guess growing up I felt like I didn’t really have any time for me. And that always made me feel so guilty! It’s like I wanted my mom and dad all to myself but at the same time I knew that he would always need them more. That’s a lot of burden for a young child to carry, and as an adult I can look back and see that I was given everything that I needed it ‘s just that I didn’t have a very good understanding of that when I was younger. I wouldn’t trade my time that I was given with my brother at all.

  • Faron.R

    Faron.R

    May 10th, 2013 at 11:43 PM

    I grew up feeling all alone because my parents attention was totally guided towards my brother with ADHD.never had any feelings of hate towards him but I did feel alone many a times and the support I received from my friends in adolescent was no less than stellar.I still believe it was something of a miracle to receive so much support from friends who were not too matured themselves at the age.a sense of community developed and that more than negated the inattention from my parents.

  • Jeff

    Jeff

    May 11th, 2013 at 4:14 AM

    Most of the time a parent isn’t going to look over one child intentionally but I am sure that when you have one child that needs more attention than another it is easy to kind of forget that the other child who may be healthier needs just as much, but maybe in a different way. Parents aren’t immune to making bad decisions, but I think that in cases like this it is probably with the best intentions in mind.

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