I guess it is pretty safe to say I have lived a unique life. I have always stood a head above everyone else, literally, hitting 5’11” in the 9th grade. My first paid job was at 14 years old during my summer stay in NYC modeling for a national magazine, only to be followed by many more. And while my friends were figuring out how to get the best tan on spring break, I was in NYC, in the snow, taking the subway getting to jobs at 15 years old. Those things made my childhood pretty different from the rest, definitely, but I also had another gem that put me even in a more unique situation, and that was my brother. My brother is one of a pair; he and my sister came into this world in October 1972 in a very small hospital that didn’t have a surgeon on campus to deliver him by a much needed caesarian section, after a normal delivery of my sister. Because of this devastating fact my brother was deprived of oxygen for nearly 30 minutes causing a severe traumatic brain injury. I joined the family 6 years later. My sister was a walking, talking, feisty ball of energy and my brother was a wheelchair bound boy with severe speech delay and the biggest smile life can offer. They were my normal. Wasn’t everybody’s brother in a wheelchair? As time moved on I started to realize maybe this wasn’t so normal. Then the birthday wishes were every year for him to walk. Or for my mom to have a new baby so I could have a “normal” brother. Then I stopped mentioning him to my friends. I only had a few and certain friends over to our house. It wasn’t that I was ashamed of him. I loved him. I just didn’t want to have to explain him to the other kids. I did a lot to help with my brother, he asked, I did. I remember being annoyed at times that I couldn’t go to friends after school because I had to be home to meet him off the bus, but for the most part “he wasn’t heavy, he was my brother”. My sister and brother had a far different relationship. They fought all the time. And they would fight to leave marks. Some would think it wasn’t fair because she was able bodied and he wasn’t, but in her defense he could be mean. And he had a powerful wheelchair and we joke about our permanent dents in our shins from years of his abuse. He has full mental capacity and is smart as a whip which was a double edge sword for him. He saw the people staring. He knew how hard each intentional move was to make and he also knew the embarrassment of each unintentional move that his spastic body would make. He had a right to be angry. We had a right to feel angry by our different family. We all were entitled to our feelings, but I look back at my old self and wish I handled it all differently. Maybe if I weren’t so tall and body conscious I would have stood up for my brother more often. You would have thought the modeling would have made me proud, helped me walk tall, but it wasn’t like that. I was still called “skinny”, “twigs”, “string bean”, “green giant”, “Kimmy long legs”…etc. The modeling at times actually made things worse.
I remember one day in high school making fun of the “short bus” and the minute the words came out of my mouth I felt sick. I hated myself for denying my life. I hated myself for denying my brother who rode that bus every day from the age of 3 to 21. I sucked. I hated myself. But in that moment of self loathing I knew I had to change my position on my different family. I decided to write a speech about cerebral palsy and my brother for speech and debate class. And when I spoke the class was silent. I got a 100% and my teacher told me it was the best speech she had heard. I was proud. I knew that I was special because we were different and different was good. It was awesome actually and my brother was worth me yelling off the rooftops BRYAN IS MY BROTHER
AND I AM PROUD TO BE HIS SISTER! It just sucked it took me 18 years to finally get the courage to just be me.
(Jennifer, Kimberly and Bryan 1979)
Looking back my sister and I sit and talk about growing up in our different family and I ask her the difficult question. “Did you feel guilty for being “normal” and he had it so rough” “Yes” she says. She said from the very beginning of her life she felt guilty for the hand she got dealt and for the hand he got dealt. It made so much sense to me as an adult looking back. I looked up to her and I never understood the fight they had for each other. As a kid you see the fighting, as an adult you see why the fight. Hurt, guilt, jealousy, anger. My parents did all they could do to give us a “normal” childhood and I know they did their best, I don’t know what we could have all done differently. I think in life we are thrown head first in situations and have to figure out our best way of not drowning.
The crazy thing about my unique life is now I am the mom living with typical kids and a special needs child. My daughter is a far different from my brother, her disease affects her quality of life in different ways, but it is still very much the same situation.
I had to laugh the first day I drove our full size wheelchair van we bought for our daughter, the same looking van I grew up in and was embarrassed to be seen in as a kid. How did that happen? How did I become the mom? My mom? Don’t things like this skip generations? This isn’t even a genetic disorder they share. How unique do I really have to be?
(Bryan with his niece LilyAnna)
So here I am a 33 year old mom with 3 kids. One typical daughter, one special needs daughter and a son. Talking to my husband I tell him I want our kids proud of their sister, stick up for her, I don’t want their sister the secret at home. What do I need to do to encourage them to have courage? How do I still make them feel special? Important? Compassionate? I think I am doing the right things, they are still all young, 9, 7 and 3 but I see qualities that make me proud. My daughter would move mountains for her sister and wants to have a job as a therapist when she grows up to help other kids. She wants to also be a singer/songwriter/actress but she is 7 and believes she can do it all and I love her for that. I love each of my kids dearly. So much it makes my heart hurt sometimes. I want them to be united and feel special for their unique family, not embarrassed or shameful.
(Andi Jane with her sister LilyAnna)
Recently on the CDKL5 facebook page we had a popular thread talking about our typical kids and how we handle them with their CDKL5 sibling and we had a lot of people sharing struggles and others sharing advice. It was a wonderful thread that left me wondering what the experts say. I would think I should be an expert, but I know how sadly mistaken I would be for thinking that. I know full well what it is like to be the sister of a kid who people stare at, talk loud to (as if he was hard of hearing), feel pity for and now I am the mom raising kids who experience it as well. I know what it feels like yes, what I don’t know is exactly the right way to do it from this angle. Luckily it dawned on me, why don’t you ask Jeanette Manley? This is her field! She was a wonderful support for us when our daughter was really young and thanks to the fabulous facebook we were still in contact and she was so wonderful to share her opinion and her resources with me and I am so excited to share all that she had to say. I can tell you I ate this article up and couldn’t wait to share it with other families. I just wanted to share who I was and the struggles I have had living this unique life and by sharing I hope I am helping others and myself.
Here is what Jeanette had to say:
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.
Jeanette Manley, M.A., L.P.C. is a professional therapist having 26 years of experience working with children and families, with over 20 of those years working exclusively with families who have children with special needs. She is currently working as a clinical supervisor for mental health consultants serving children birth to five.