Literary Mama writing about the many faces of motherhood
Special Needs Siblings

29 comments

When my daughter was four years old, she received an end-of-the-year scrapbook from her preschool teachers. There, amidst the anecdotes of pre-reading Max & Ruby stories, the child-created observations of flower growth in the classroom garden, and reports of endless water play with friends, I read the following: "During the year, Josie has shown enormous anger at the illness of her baby brother, as well as guilt and remorse over that anger..." The sentence went on but I could not read any more. Instead, I closed the book, my hands trembling, and I thought, not about the teacher, but about myself, How could you not see this? You fool.

The next time my daughter asked to see the scrapbook, I had blacked out those words. Because even if they were true, I did not want them there for her to see. This brother of hers, with his illness and complications, had to be more than a source of anger and guilt. Her sibling experience needed to count for more than that.

~

I grew up in a large family, two brothers and a sister. For me, the sibling experience was practically totemic in its necessity and I knew as soon as my daughter was born, it would be important for her to have the same. A brother or a sister, someone to keep her company after we were gone, a legacy of shared genes and memories. That quest for another child brought us our son, and gave our daughter a very atypical sibling experience, eliciting the editorial comments from her preschool teacher, and marring an otherwise perfect scrapbook with my daughter's difficult reality.

I have several friends who have one typically-developing child, and another with special needs. One of my friends will say, apropos of her typical son, "Look, none of us signed up for this. He's dealing with it the way we all are, he's coping."

I appreciate my friend's candor and her honesty. But my own journey as the mother of both a typical child and a special needs child is more conflicted (as I'm sure my friend's is too). I feel guilty about my daughter's embarrassment at her brother's many behavioral outbursts, his blindness, lack of speech, delayed development, guilty that a typical sibling experience is not in the cards for her, and, finally, guilty that I can't always acknowledge those challenges. Like the words in that preschool scrapbook, sometimes I have to black them out and turn away.

At night, in bed, my daughter will ask me a lot of questions about my own siblings, their pet names for me, the things we did together growing up. I sometimes wonder if she's trying not only to imagine the life I had, growing up, but also the life she might have had, if her brother had not been born seventeen weeks early, weighing only a pound.

~

The life of a special needs sibling is unlike any other. My oldest special needs mama friend has two daughters, one a typically developing three year-old, the other a seven-year old with cerebral palsy. Recently, when the three year-old started preschool and was having a hard time being without her mother, she used an outrageous set of excuses as to why they should call her mother to take her home. "I'm having seizures," she said. "I need to go to the hospital. My G-tube is leaking!"

One Christmas, when my son was still in the NICU and my daughter was three years old, the doctors offered to let her inside the unit to visit -- a very rare occurrence for siblings her age. Josie gave me a long look and asked me, "Why?" Why would she want to go in there and see Evan? What difference did it make? "But Santa's in there," I said, indicating through the glass door an older man in a beard and Santa Suit, leaning over Evan's isolette.

"Santa doesn't belong in the NICU," she said.

It takes enormous reason -- and outsized coping skills -- for a child to navigate these waters, those of seizures and G-tubes and visits from Santa in the NICU. Logic, and solid sense of self, have carried my daughter through some tough years with her brother, those spent in doctors' offices and hospitals, therapy sessions and clinics. I still don't know that I agree with her preschool teachers about all that anger and guilt, but I do know that she has adapted to this strange world as only a child can, going so far as to use rubber gloves as toys or G-Tube adapters for water play. Every once in a while she'll come to me with some device she's found in Evan's room -- an empty syringe, perhaps, or a nebulizing cage -- and ask, "Mommy, can I use this?"

Just like my friend's three year-old with her outgrown excuses, the seizures and the need to go to the hospital, my daughter copes by expanding her own horizons as a child to incorporate this special needs world. Last week, she went through a therapy session blindfolded, "To see what it was like," she said, "to be Evan."

~

It would be easy to stay in the place of guilt, where being a special needs sibling is simply a raw deal. Sure there is the surreality of seizures, G-tubes and therapy sessions. But then I remember Piaget's concepts of assimilation and accommodation, and marvel at how beautifully my daughter has mastered these concepts. Often, after spending the day at a friend's house, one where a typical younger brother resides, my daughter will come home to report, "I'm so glad I don't have a sibling like that." In other words, one who follows the girls around, throws a punch or two, demands the TV remote. A typical brother.

And then there are the basics: my daughter is growing up with an extra measure of compassion and the knowledge that the world is not perfect. She knows that some people don't walk or talk but that this doesn't always interfere with other abilities. She is the first to take pride in her brother's achievements, and, because she is human, she is also the first to say, at the end of a long evening of "Evan's annoying Pooh CD," as she calls it, "Isn't it time for Evan to go to bed?"

~

Beyond the coping and the jealousy and the simple challenge of navigating these waters, there is, finally, my pride in my daughter and her own journey. She is a marvel of a person, neither false in her affection for her brother, nor unstinting in her praise of him. "He said hello!" she announced the other night, after reading a communication log from Evan's school. "Mommy, did you read this? Evan said 'hello' at school today!"

Finally, she is simply her own person, which is the best accomplishment of all. After reading about Evan in this column one morning, Josie came to me and asked softly, "Are you going to write about me some day?"

I can't imagine, in my own growing up, having to compete with a child like Evan for my mother's attention. I know of adults with special needs siblings who themselves remember times in their teen years that they resented their siblings, the stress it caused their families, the responsibility they feel for their brother or sister in adulthood. I try not to think about this future as I tell my daughter, "Yes, yes, I'm going to write about you. What would you like me to say?"


Vicki Forman is the author of This Lovely Life: A Memoir of Premature Motherhood and
teaches creative writing at the University of Southern California. Her work has been nominated for a Pushcart and has appeared in Philosophical Mother, The Santa Monica Review, Writer to Writer and Faultline. She lives in Southern California with her husband and child.


More from



Beautifully written. Lots of love to "Josie-girl".
Beautiful, Vicki. I'm printing this out to save for my own Josie to read when she's a little older. Thank you for this column, and all the previous ones.
I'm constantly amazed at how you capture the bittersweetness. Bravo!
Children show us the way, in so many ways, don't they? I love Josie's simple honesty, and I love that you honor it. I've often been surprised to learn that some of the most vehement supporters of prenatal diagnosis for Down syndrome are actually siblings, or family members, of people with Down syndrome. Whenever I find that out, it feels like a slap to the face. I think, But you, of all people? How could you feel that way? I've come to realize that everyone has their own feelings about a family members disability. I don't know what makes successful families, but it's much on my mind. And I think the answer has something to do with what you say in your post: creating a family environment where everyone gets a say, and everyone is heard.
This REALLY touched me. That is currently the BIG debate at our house right not. Are we ready for a second child? We had always "planned" to try again once Brooklyn was two (it took us 3 years to get pregnant with her) Well, she turned two in May - was diagnosed with Rett one week later and put our "plan" on hold. My husband and I always wanted 2 maybe 3 (he would say 4 because HE is not delivering them!) Should Rett change that decision? I hope not.
i think all of us need to feel special, even when a special needs sibling or family member may require extra care - Josie is blessed in having a mother who knows and remembers that. it is good to read about her, and a bit of her experience of sisterhood.
You've captured SO much of Josie's own specialness here. She's lucky to have you as a mom, and you're lucky to have such an honest, compassionate girl. You've written about her beautifully here. "Some day" has come.
"I'm so glad I don't have a sibling like that!" cracked me up. Big time. It sounds to me like Josie is the ultimate, big sister. She's doing a terrific job of being mature and sympathetic. I think that, with families, in one way or another, we all feel like some critical element is missing at times. For me, as one of three boys who were raised entirely by our mother, I dealt with some serious longing for something I felt was missing. But over time, you realize that nothing is missing. You fill in any blanks with surrogate siblings and parents, you find friends that become like family, and you realize that when you have a mother like mine (or like Josie's) or brothers like mine (or like Josie's), you are pretty darn lucky.
By the simple nature of our daily lives, siblings of special needs children are forced to grow up more quickly and became stronger. My daughters are 3 and 2, the younger has special needs. Because their ages are so close, the girls have never known life without one another. Audrey stops breathing and her sister comes over and says "Breathe baby you can do it, breathe!" Something she's seen me do over and over again. Recent comments from big sister like "When I get married, can Audrey come and live with me so I can take care of her," "l'll always be here to help you with Audrey," or, "when I grow up I'll babysit Audrey for you," make me wonder what she is seeing and thinking about our lives and our family. Have I unintentionally passed on expections?
I love hearing about Josie. I love when you write about her on your blog, and I think she's just an amazing kid. Tell her she has a fan in RI?
Keyboard? Wet. Nose? Stuffy. Heart? Incredibly moved beyond words. I'd love to hear from Josie in her own words one day; I think she is a special and amazing young lady. But then, so is her mama. xo
An absolutely stunning column about an absolutely stunning child from an absolutely stunning family. Much love to you all!
I thought that was a perfect column.Thank you for writing about me, Mommy. I love you.
Josie sounds like an amazing young lady. This article about Josie's perspective really spoke to me because I have both a sister and a son who have special needs. I am hoping that our two older "typical" sons do not come to resent their brother as they grow up together. We try to celebrate each child's interests and achievements as much as possible. I don't want our two older sons to feel so responsible for their brother's care that they aren't able to live their own lives, but I do hope that they gain compassion, strength and reslilience from having him in our family.
Vickie, you have an amazing daughter. So do I, I forwarded your column to my daughter Andrea who is away at University and I asked her if this was how she felt towards her older special needs sister while growing up. Please read her comments below: "oh and by the way that article made me cry.. umm i dont think i was as bad as that girl with the whole im having a seizure take me to the hospital thing but yah i definitely felt anger and guilt soo much.. and i hate to say that but i was always so angry about how she was treated with such royalty especially with family and i was like chopped liver but o well im over it i guess, but i think i felt way more guilt than anger cuz i felt so bad that i felt that way cuz its not like its her fault but o well.. i think the truest part of that article was where she said that her daughter grew up to be more compassionate and accepting than other people which i totally agree with.. i think i have a pretty freaking amazing mommy to have created such a good balance between me and Julie for affection, i love you very very very very X infinity mouch xoxoxoxoxoxooxxooxoxoxxoxoox love Ambia"
Vicki, I don't think you'll ever know how much I needed to hear this story right now. My heart aches for my Jack and all that he has to endure, and all that he has been cheated out of. Your children are amazing, and you are a wonderful Mother, and a wonderful friend. Thank you for sharing this!
Vicki, I knew when Kristen at From Here to There and Back mentioned a very special LM columnist on her blog, that it was the writer of the Special Needs Mama column. So glad to have finally taken the time to "meet" you and your very special family. K.
Bravo! You have vividly captured the emotional plunge that siblings take on this Alice in Wonderland journey. I hope that my daughter grows up to be just like Josie- strong, determined, compassionate, contemplative, understanding, loving, witty and wise. She truly sees Evan. So much like her "mama". How lucky we are to have eachother. After my daughter had a seizure the other day my youngest said "Mama the sky lost Alexandra." I looked at her contemplative eyes and said "Did you find her?" She replied "Not yet. Not yet."
Vicki, Your article was so thought provoking. We have a dynamic in our house that will lead to so many of these discussions- a four year old with sensory processing issues and an 18 month old with a severe language delay. It will be so interesting to see how they each react to the other. I will definitely think of Josie often as we navigate this path.
Your post covers everything we've been through with our kids. We have two typical kids, a boy older and a girl younger than our Emily, who has similar needs to your son. While occasionally he complains that I spend too much time with Em, our son has grown to be very sweet to his little sister and has even told me several times that he'll take care of her if someday her dad and I cannot. Our youngest plays with her and curls up to "read" to Em, which is very cool to watch. For our kids, this is their normal. My kids were too young to ever remember anything different. Bless you and your family and thanks for the reminder of how special all our kids are.
i LOVE that josie commented! and she's right. it IS a perfect column. you capture the whole of it in your writing, the truth with the sweetness and the bitter all intertwined. thank you.
Thank you for this post. I have three children, two boys and a special needs daughter. I often wonder, well about everything. Mostly I worry about them and how they are - how they are coping. Thank you.
AMAZING! Brava! Thank you for this.
Oh Boy. Wow. Does this take me back and I have the knot in my stomach to prove it. My "special" Meredith has an older brother and younger sister, both of whom are now successful adults. We made it through, but the agony, the wondering, the King Solomon-like decisions about who needs my time and attention the most at any given moment. Do families with all typically developing children face such conundrums? I don't know. I know that one of the best things that ever happened for my kids was finding Don Meyer and his amazing work on brothers and sisters with special needs. He highlights the opportunities and challenges of this experience. Find his work at www.siblingsupport.org
I read this and my heart cracked. In my family I was the child with special needs as a result of complicated medical issues and surviving NLTE (near-miss SIDS in the 1980s). As I reached adulthood I began to imagine what life must have been like for my older brother who was not only dethroned as an only child when I was born, but quickly tossed into a world where often I was the only priority as my parents worked incredibly hard to keep me alive. I am quite sure he resented me, but he also was my greatest protector when I needed defending. Now that we are both adults and enough time has passed, we are able to understand each other and are building a wonderful relationship. This article allowed me to see things how he must have seen them when we were little. I know my experiences, but I can only imagine his. Thank you for helping me to better understand how we shaped each others existence. As the child who had such high demands, there has been guilt for knowing that it must have been incredibly hard for him to be my brother but there has also been a new appreciation of the incredible person that my brother is and always was even when I was too small, or too lost in my world to see it. Your beautiful daughter's experience will also help me as a preschool teacher of children with special needs. It is a new level of awareness that is priceless. Thank you and thank your precious and incredibly wise Josie.
My youngest is still too young to know and understand the differences that his older brother presents. But, I hope when he does come to the realization, he shares Josie's perspective on it all. This was a very moving post.
Beautiful, beautiful, beautiful.
What an extraordinary girl you are, Josie.
thank you so much... your writting is so beautiful and well said...in your comments Ambia says is so well....i am sure my son and daughter feel the same way....it makes the siblings very special people with a heart and feelings you can only learn when you grow up with a special needs child..i am sooooo proud of all my kids and now down in my heart that my other 2 kids will be very special humans
Comments are now closed for this piece.