Calm Amongst the Chaos

Special Relationships:  Children with Special Needs and their Siblings:

Sibling relationships are often our longest ones, spanning over the course of our lifetimes.  Negotiating our relationships with our siblings is usually our first introduction into learning to relate to others.  It is no wonder then that our sibling relationships are frequently ambivalent and fraught with a mixture of love and hatred, jealousy and loyalty and many, many opportunities for both rupture and repair.   It is often our siblings who know us the best:  what we like, what really “pushes our buttons”, or what really motivates us.  We “share” our parents, our childhood experiences, and are exposed to the same set of family values and belief systems.  Often this “shared history” bonds us closer together and other times seems to pull us apart.

As a therapist who has worked for over 20 years with families having children with special needs, these general observations of sibling relationships seem to hold true whether siblings are typically developing or whether they have special needs.  While talking with school age brothers and sisters of siblings with special needs, I have found that they often echo the same rivalries, joys, shared memories, and experiences as those with typically developing siblings. However, it is also my experience that sometimes those feelings may be expressed more intensely, less directly, or occasionally withheld in a protective manner from both parents and themselves for a variety of reasons (e.g., feelings of guilt, shame, or fear of reprisal).  My observation of toddlers and preschool children of siblings with special needs has been that they express their feelings more openly, less defensively, and most often through their behavior (e.g., aggression, or regression to an earlier stage of development).  

Characteristics of Siblings of Children with Special Needs

Donald Meyer and Patricia Vadasy summarize research as well as some common themes from their work with children who have brothers and sisters with special needs in their 2008 book, Sibshops: Workshops for Siblings of Children with Special Needs (Revised Edition).  Some of the things they mention are that siblings of children with special needs frequently relate:  1) worries that they will develop the same problems (e.g., seizures) as their sibling, 2) guilt about their own abilities (i.e., those that their sibling does not have) or about having negative feelings about their sibling, 3) resentment due to loss of parental attention or perceived unequal treatment, 4) feelings of shame or embarrassment (particularly true during the adolescent period when children may desire everything in their lives to appear “normal” to others), and 5) increased responsibilities for their siblings care.  On the other hand, they also report that siblings of children with special needs often demonstrate a greater capacity for: 1) maturity, 2) insight into the human condition including increased appreciation for their sibling’s abilities as well as their families, 3) tolerance and compassion toward others, 4) loyalty to their siblings, and 5) advocacy on their sibling’s behalf. 

What Parents Can Do to Help 

Kate Strohm in her 2005 book, Being the Other One, cautions parents to remember that each child will react differently to his or her sibling with special needs based upon many other variables such as age, personality, temperament, etc.  Each child is unique so his or her needs will be unique.  What is most important is to pay attention to what your child is telling you that he or she needs.  Looking at the underlying meaning behind behavior is the key. Once a child’s underlying needs are identified, then strategies to help support your children will become clearer.  This idea is echoed in Thomas Powell, ET AL., 2006 book, Brothers and Sisters:  A Special Part of Exceptional Families, Third Edition. The following “Ten Ideas to Help Special Siblings” are a melding of suggestions from both of the above books for parents to support siblings as well as my own observations of what has been helpful over the years in working with families of children with special needs.

Ten Ideas to Help Special Siblings

1) Facilitate an open dialogue of communication.  One of the most powerful and healing things that a parent can do is to encourage the open expression of feelings within the family.  When children feel that someone will acknowledge their feelings, even the ones the may be feeling guilty about having (e.g., jealousy about the amount of parent time the special needs child requires), they begin to feel supported, understood, and valued.  When children can verbally state their feelings and be heard, there is less likelihood that they will “act out” those feelings through their behavior or internalize those feelings and perhaps become depressed or anxious.

2) Hold regular family meetings to talk about how all are feeling, including “you” the parent. Parents can often serve as a model of what feelings can be shared and how.  They can demonstrate, for example, that is okay to have ambivalent feelings about the disability and how it affects everyone in the family without devaluing their child with special needs.  Parents are not encouraged to “let it all hang out” as you are entitled to your private feelings and do need to maintain boundaries and not overwhelm your children.  However, mentioning that you are “feeling tired of going to therapy appointments” and asking siblings how they feel about it, is perfectly fine to elicit more open and honest communication about the challenges within your family. 

3) Share information about your child’s disability.  This is important to tailor to the developmental age level of the sibling.  For example, younger children (preschool and early school age children) may need to hear that their sibling’s disability is “not catching” and to begin learning appropriate labels for their sibling’s disability. When providing information it is important to ensure that the information is understandable.  You might want to consider providing some information and then ask, “Does that make sense?” is there anything else you are wondering about?” Children also need to hear balanced information about their siblings’ disabilities – sometimes there is positive and encouraging information to be shared and, by all means, share that information as well.

4) Encourage siblings to ask questions.  This is particularly true about issues or concerns that they perceive as upsetting to parents.  Your permission to ask questions reduces the possibility that they will try to protect you at their own expense of needing to talk.   At times you may even elicit questions by asking such questions of your child such as, “Have you ever wondered what it might be like to be blind?”

5) Be Fair.  Of course, any parent will tell you that it is impossible to be completely fair with their time given to their children.  Sometimes individual children need a lot more attention given
their presenting needs at the time or due to their on-going dependence upon you. However, parents do need to be aware of not always assuming that the sibling of the child with special needs is to blame during disputes, mindfully scheduling special 1:1 time with all of their children, encouraging the special needs child in having family responsibilities/chores (whenever possible) and ensuring that the child with special needs is not given more gifts than his or her siblings. 

6) Acknowledge the care given by siblings to their brother or sister with special needs.  As long as parents are careful not to overburden siblings, they can learn a lot from being a helper and friend to their brother of sister with special needs.  What is important is to allow the sibling to have some choice in how much responsibility he or she takes on, otherwise, this can lead to resentment later on.

7)  Help siblings build some space and independence.  A healthy relationship between siblings involves allowing each to feel comfortable in doing things with other adults and peers that does not always involve their brothers and sisters. Encouraging special 1:1 time with other important adults or family members also helps with that extra attention that you may not be able to give at times. Finally, in addition to being able to share with their siblings, they may also need to have space for their own personal things that they value. 

8) Help siblings feel valued for who they are—their own individual talents, interests and achievements.  Recognize, encourage and cultivate interest in activities outside of the family.  All children learn self-esteem through experiencing a sense of mastery of new skills.  While it is true that arranging time for sports, music, or dance lessons, etc. is truly challenging with competing commitments for doctor’s appointments, therapies, etc., sometimes enlisting the help of a relative or other parents can help reduce the stress of additional time demands.  Likewise, there is certainly nothing wrong with limiting your child’s participation to one activity at a time — most parents find themselves having to make these choices all the time, whether the child has a sibling with special needs or not.

9) Build your child’s capacity to deal with questions, etc., from the outside world.  Siblings of children with special needs need a simple way of explaining their brother or sister’s disability to their friends.  They also need to develop a repertoire of successful comebacks to possible teasing from their peers.  As a parent you can rehearse some simple comebacks to teasing that will likely be very effective in reducing the behavior of peers.  For some great ideas about this topic, you and your child might read, How to Handle Bullies, Teasers, and Other Meanies   (Kate Cohen-Posey, 1995).  If the teasing is prolonged or turns into bullying behavior, you may also need to contact your child’s school to ensure that they are aware and providing support for your child.  You may also want to have your child attend a sibling support group or Sibshop to gather support of ideas from other siblings of children with special needs.

10)  Know when to seek outside help for your family.  Sometimes your child presents with symptoms or behaviors that may indicate that he or she may benefit from additional counseling to identify and process feelings and concerns.  Some symptoms to look for include: increased aggression, withdrawal, increased nervousness/anxiety, physical complaints without medical explanation, poor sleep and appetite, destructive or other worrisome behavior.  Both individual and family counseling may be helpful. Be sure to look for a therapist who has experience working with families who have children with special needs.