5 Ways to Support Siblings of Children with Special Needs

The needs of siblings are unique as well.

Having a sibling is one of life’s greatest joys. Siblings are ours to love, hate, learn from, and grow with through the years. Siblings are the only people that fully understand our lives from an insider’s perspective; they understand the obstacles and triumphs of our inner family life.  For most children, having a sibling means having a built-in best friend.

While this is true of most sibling relationships, children with siblings that have a disability may have a different experience. The sibling relationship with children with special needs is an under-researched topic.  The emphasis in the special education world is usually placed on the parent-child relationship. Having a sibling with special needs can mean a variety of outcomes for different families, but common challenges amongst siblings manifest in similar ways. In looking at helping families work through some of these challenges, here is what the research says about ways to support the siblings of children with special needs:

1 | Acknowledge the pressure to be perfect

One of the most common challenges that siblings of children with disabilities face is the pressure to be perfect (Strohm, 2006). Knowing that their parents are under a great deal of stress, siblings may try to reduce their parent’s stress by becoming a “people pleaser” or a “perfectionist.” The “well sibling” may be reluctant to share their concerns with their parents for fear that they are becoming a burden to their family. Being aware of the pressure to be perfect, as well as encouraging siblings to communicate their feelings and concerns, can help siblings to realize that it’s okay to have their own needs too.

2 | Keep an eye out for inappropriate responsibilities

In any family, children are asked to take on a certain level of roles and responsibilities based on what the family needs. In a family where one or more child has a disability, these roles and responsibilities may be increased. Siblings are given functional roles within their family based on factors like temperament, development, and other family dynamics rather than solely by birth order or age (Schuntermann, 2007).  Depending on the family, siblings may not be asked to take on responsibilities related to the family functions, but they may be required to care for themselves independently. This premature independence may cause the child to believe that they need to behave like an adult. Parenting a child with a disability is not an easy task, and it is natural to need extra support to complete day-to-day tasks. Making sure that siblings’ jobs and responsibilities are age-appropriate helps ensure that they are not overburdened by tasks that are beyond their developmental level.

3 | Exposure to other siblings of children with special needs

In the same way that parents need to know that they are not alone in their journey of parenting a child with special needs, siblings need a support system as well. Feelings of isolation are common in siblings of children with disabilities, which is why finding a support group is so important (Strohm, 2006). There is comfort in knowing that there are other children in a similar situation, and this can provide an opportunity to share feelings and challenges with same-age peers.

4 | Talk about the future

“Fear of the future” is one of the major challenges siblings of children with special needs face throughout their lives (Strohm, 2006). According to the family systems model, “Children live within a context – the family – and when something happens to one member; everyone is affected” (Darling & Seligman, 2007). The diagnosis of a disability within the family affects the entire system. Siblings of disabled children have real worries and fears about the future, and creating a space to share these fears is critical in supporting the family as a whole. Talking about the future as best you can and being open to questions is one way a parent can help ease a sibling’s worries.  As with anything, honesty is the best policy when it comes to talking about the future. Saying “I don’t know” is also okay. The main thing is showing the child that they can bring their worries and fears to you without judgment.

5 | Spend extra quality time

Parenting a child with a disability takes an incredible about of time and energy. Spending extra quality time with siblings of children with special needs helps them to feel important, and reduces the need to “act out” in order to get attention (Strohm, 2006). Opportunities for open and honest communication can be fostered by more one-on-one time, and these moments have a profound effect on how siblings view themselves within a family system.

“Siblings, whether close or distant, are fellow travelers through the life cycle. They share unique, private knowledge about their parents and families, possess a common genetic base, and carry the history of the nuclear family. They may be best friends, playmates, and soulmates or competitors, mentors or mentees, nurturers or nurtured, the ones with whom to fight or settle conflict, and positive or negative role models” (Abrams, 2009).

Siblings of children with special needs are important members of a unique web of family relationships. Research suggests that children with disabled siblings are best supported when families are proactive about siblings’ feelings of isolation, grief, or never being “good enough.” With plenty of opportunities for open and honest communication with parents, children are more likely to have a positive experience with their disabled sibling, be more resilient, and thrive in the face of adversity.

Mom, Mermaids Can't Be Brown

She was simply telling me the way of the world as her toddler eyes saw it.

I was burying my daughter’s legs on the beach when inspiration struck. “Look, you’re a mermaid!” I exclaimed, fashioning a crude tail out of the sand. And that’s when M broke my heart.
“But, Mom, mermaids can’t be brown.” She wasn’t even angry, my little half “pink” (as she calls me), half Puerto Rican child. She was simply telling me the way of the world as her toddler eyes saw it.
I have seen her scream for an hour in response to the perceived injustice of being denied a third popsicle. But third popsicles exist in the world of possibilities after all. Brown mermaids evidently do not. Hence this tired resignation, this easy acceptance of something unacceptable.
I was stunned. Certainly nobody in her personal life has ever said anything to her that would convey this kind of attitude. We lived in a diverse and warmly affirming community in Decatur, Georgia, where she went to a diverse and warmly affirming school surrounded by diverse and warmly affirming teachers at all levels of experience.  
When we moved from Decatur, it was to the site of the mermaid debacle – the island of Puerto Rico. Here, surrounded by a loving extended family, where she and her father were the ethnic majority, she still somehow voiced this opinion of otherness. More than otherness, of being less than.
I wondered then about media influences on her perceptions. Until M was two, we scrupulously followed the American Medical Association’s guidance for no screen time. Since her second birthday, we have undeniably been more lenient, though we still carefully control the messages she receives.   
Hers is a world not just of Cinderella, but of Tiana and Pocahontas, of Doc McStuffins and her physician mother. M’s toys are the usual range of anthropomorphic animals complemented by baby dolls of multiple ethnicities. I consumed myself with figuring out the origins of her mermaid comment so we could rid ourselves of that poison.
M’s father suggested this was just one of the random things that she spouts out, and that she latched on to it because of the reaction it provoked. After all, she has claimed that Maleficent was preventing her from taking a bath or that Captain Hook gave her the candy that she knew she wasn’t allowed to eat before dinner. She recently jokingly threatened to bite off my nose. She does say random things. She’s three.  
I might have been able to accept that explanation were it not for an incident a few weeks before the mermaid one. One night, as we snuggled close for her bedtime stories, M commented, “Mom, it’s hard being two things. I wish I was just pink, like you.” At that time, her remark felt more like developmentally normal maternal identification than anything else. But now I wasn’t so sure.
I had thought I was aware of white privilege before, was adept at seeing the doors that I walk through that might otherwise be closed. But I have never felt my privilege like I felt it that day on the beach in Puerto Rico, when I realized that the child I had helped create sees her dreams more limited than mine. Not opportunities or aspirations, but actual dreams, those effervescent bubbles of hope and comfort to which we should all feel unreservedly entitled. It felt like a gut punch to the core, and the ache is with me still.
The crisis passed. Over time, M no longer bemoaned the fact that she was brown. She didn’t care that her father and I don’t match each other. She learned to make her own mermaid tails in the sand. We learned more Spanish and explored further on the island. We ate seafood at a restaurant while watching the fresh catch brought in straight from the boats. M found a family of snails at her great-grandmother’s house. Everything was as it should be in our little corner of the world.

F
or now, that’s enough. But the world feels so angry these days. Everything feels so divisive. I can’t shake my anxiety. I dread the day she begins to wonder why so many people who look like me hate so many people who look like her.

Death, Life, Loss and All the Things We Pull into Our Chest

Something was wrong. My baby wasn’t breathing.
She was sick. She had a scary-high fever that had spiked quickly and out of nowhere, and I was laying down with her on my chest waiting for the medicine to bring it back down into more manageable territory. It took me a second even to realize that she wasn’t breathing. First, there was just nothing, the absence of sound, and then her soft baby body went unnaturally hard and stiff. Before my brain even caught up with my body I was on the phone with 911, sirens in the background.
She was back by the time the EMTs rang the doorbell, soft again and breathing normally. It was a febrile seizure, they told me, no big deal but scary as all hell, and actually more common than you would think. It was her first but she went on to have more, and they never stopped terrifying me in that primal way that leaves you shaken and with an adrenaline hangover for days afterward.
She stayed sick for a week, just a virus but a nasty enough one. Her fever finally broke on a surprisingly warm weekend morning, and we collectively spilled outside like a group of weary hibernators starved for the sunshine. I looked around, letting my eyes adjust to the light, and saw something move in the back corner by the shed. The lawn was that electric green it turns in the first few breaths of spring, but there was a dark spot in it. I moved closer and heard a sound like the cry of a baby.
It was a kitten, a few days old maybe at most, curled up and tiny with its eyes closed and a hint of an umbilical cord still attached. It’s mother was long gone, maybe scared off by our dog or our kids or our general volume level, and it was in rough shape. I scooped it up from the grass.
Do not get attached, I told myself, knowing this tiny curled up fit-in-your-palm of a thing didn’t have a chance, but it was already too late. I thought of what my mother had said after Gabby’s seizure, when all our people came by to love up on her with food and gifts and hugs and snuggles, “if we could only remember how much we were adored when we were young, we would never be lonely again.” I knew this baby kitty couldn’t die alone in my backyard.
So I carried him inside in my palm like an offering, settled into the couch and held him against my chest while the sounds of my finally-healthy brood playing outside floated in through the open window. He held on for a while – long enough that I felt hope start to plant seeds in my heart – and then he stopped breathing. Much like with Gabby, it took me a little while to realize anything had happened, and even longer this time to accept it. When I finally stood up, tears were streaming down my face and I could hardly breathe myself. Lost, I called my mother.
“Mom,” I managed to spit out in between my sobs, “I don’t know why I am so upset. I don’t even like cats!
She was quiet for a minute, long enough for me to doubt my decision to call her. We were not as close as either one of us would have liked and it was stupid of me to think she would understand. But then she surprised me. “Liz,” she said, “where was that kitten when it died?”
“On my chest,” I answered, hesitant. Where was she going with this?
“And where was Gabby when she had her seizure?”
All the breath I had struggled to find came out in a rush when I made the connection, “On my chest!
Then she did the most incredible thing. She sat there, quiet and listening, while I cried. I cried for the kitten and for Gabby and for how scared I had been and for how much I missed my mother. I cried until there were no tears left and I could hear my kids start to come back inside and I realized amazingly that I didn’t feel lonely anymore.
I don’t pretend to know why these things happened to me like this, together. I don’t know why Gabby was given back to us and the kitten was taken. All I know for sure is that it’s all connected: death and life and loss and all of the things we pull into our chest and hold there for comfort; and all of the things we have to let go of. I think maybe it’s like one of those famous paintings: up close it just looks like a bunch of random dots but when you take a few steps back, a beautiful scene emerges.
These are the dots of our lives.
When enough time passes that we can take a few steps back, in just the right light with just the right distance, they paint the kind of picture that reminds us – like my mother said – how we too were adored, and never have to feel lonely again.

Finding Peace As A One-Child Family

In a world full of messages of the ‘only lonely,’ we can be made to feel we are somehow doing something wrong by making the decision to have an only child.

When I told my mom that I was only going to have one child, she immediately exclaimed that my daughter was going to be lonely. She then began quizzing my then 1-month old daughter about whether she wanted a sibling.
It’s not always easy for one-child families. In a world full of messages of the ‘only lonely,’ we can be made to feel that we are somehow doing something wrong by making the decision to have an only child. If it is a decision at all. For many of us, our life-circumstances made the choice for us. We had health issues, or a traumatic birth, or just couldn’t afford to bring another child into the world.
Having one child has always felt pretty much right to me. As a writer, I’d questioned whether I should have children in the first place. Would I find the time to write with multiple children to look after? A lot of my favorite writers solved that problem by having only one: Margaret Atwood, Siri Hustvedt, and Joan Didion, to name a few. They were my inspiration that writing and parenting could be combined.
My husband and I were really happy with one child. Yet we live in a world where having at least two children is often considered the norm. Contrary messages are always ready to leap up and make me wobble.
In Facebook parenting groups from time to time, there’ll be a parent of one child who wants to check in and see what people think of her decision. She’ll want to hear from people who didn’t have siblings. Were they lonely? Although there are plenty of only children out there who weren’t lonely, there are always a few who were terribly lonely. They see the lack of siblings as the problem and chose to have multiple children as a result.
These kinds of comments used to send me into a tailspin, until I realized one simple thing: that what we think is the problem isn’t always the problem. When I was a child I can remember having frequent periods of loneliness. I had a sister, but I can imagine if I was an only child I might have thought that all my problems would have been solved if only I had a sibling. Adults with siblings know that having a sibling doesn’t inoculate you against moments of loneliness, or that strong desire to have a friend come over to play.
I found reassurance in my decision by reading “One and Only: The Freedom Of Having an Only Child, and the Joy of Being One” by Lauren Sandler. Sandler, an only child herself, describes how her mom was a strong believer in the idea that a happy mother equals a happy child. Sandler’s mother decided to have only one child so she could continue with her work and live a life of independence in her urban apartment. Sandler chose to do the same; to live a life where she would have time to read, write, travel and still have moments of solitude.  
Parents are often described as ‘selfish’ for having an only child. With research supporting the idea that a happy parent equals a happy child, there is nothing selfish about making a choice that’s in our interests. Sandler draws attention to the fact that for many parents, the main reason to have another child is so the first one can have a sibling. She questions if this ‘selfless’ tactic is really a good one.
Research shows that there are many benefits to being an only child. Only children have been found to have a higher sense of aspiration and motivation, and a stronger sense of self-esteem than children with siblings. They also have a higher than average IQ
No doubt there are different benefits to having a family with multiple children. Each family size has it’s pro’s and cons, and we shouldn’t get caught up in believing that one choice is better than the other. Each family has its own needs, and own path.   
Recently I joined a Facebook group for parents of only children. Parents don’t just post about the difficult bits, the endless comments about when baby number two is coming along, or how judged they feel by others. They also post about the positives. They share their family photos from a vacation they just wouldn’t have been able to afford if they had more than one child. They share about lunch dates that are unspoiled by sibling squabbles. They share about exercising with their one child in a stroller. They generally just share about the freedom and joy that comes from having one child.
This group has become my sanctuary, a place where I can let go of all those negative messages about only children, and see our one-child status, as something much more joyful. There’s no doubt that every family size and dynamic comes with positive and negatives, but there’s nothing inherently negative about being a one-child family. It is a different kind of life, but no less full of fun and adventure.