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Literary Mama

| December 2006

The Mother at the Swings

By Vicki Forman

It’s a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I’m swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, “Boy, he really loves that, doesn’t he? I mean, kids just love to swing, don’t they?”

Yes, I think, kids do love to swing. But the reason my son loves to swing isn’t the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed “sensory integration dysfunction” and requires enhanced “vestibular input.” Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

“He really loves to go high,” the mother at the swings says. “He’s not afraid at all.”

“He’s not afraid because he can’t see,” I say. “He has no idea how high he’s swinging.”

“Well, he must have other ways of knowing,” she says. “Because he definitely loves it.”

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two — variations on “muh muh” — which he uses indiscriminately for “more” or “mama” or “open.” I have watched my friends’ newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were “rocks” could unexpectedly turn out to be “gingerbread men.” Just like the story, they run, run as fast as they can from you when they hear of your baby’s birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan’s disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker’s handout: the mother at the swings.

The mother at the swings wants to know. It’s why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it’s like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She’d like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn’t know how to ask. And so she tells me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it’s hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can’t do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother’s curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

51 replies on “The Mother at the Swings”

Thank you for such a lovely, and eloquent essay.

And what you write is so true…I am sometimes the mother at the swings, trying to understand other children and not quite knowing how to ask; I am sometimes the one doing the explaining, of what life with my son with Down syndrome is like. We all have more in common than we realize, I think, and I thank you for beginning the dialog.

How proud am I of you to have such courage and such a huge soul to reach out and speak of your experiences. You are a truly inspirational Mama. A Mama who should teach a thing or two to some mamas that do not have that innate mother instinct – to love and to grieve.

Thank you for sharing…I too will share it with other mamas and dads! Congrats! xo

thank you for this beautiful piece. it’s true. the mother at the swings IS a separate catagory. i’ve been the mother pushing the typical child next to the mother of the special needs child, although the child i was pushing was not my own. most of the time, i am the mother pushing my own special needs child next to the other mother. and we discuss what ‘all children’ do and like. there is a need to find the common ground, the common language, the common experience and there certainly ARE those places and it certainly IS important. but i’ve been feeling lately that the special needs mama stands with legs wide, stradling–stradling a lot of things. it makes for a sturdy foundation but it takes extra energy.

Thanks for reaching out to us open-hearted and smiling supporters. Your writing is making the invisible, visible; the unspoken, articulated–and I appreciate that. Brava!

What an extraordinary mother, boy and description. I’ll swing with you two any day. Reading this is such wonderful progress for all of us. Vive perspective.

Thank you, Vicki. From me and mine, us and ours, who for reasons which God only knows, were chosen to raise these special children.

What a searingly accurate articulation of something that is so difficult to articulate — the halting awkwardness of reaching out to others. Thank you!

What a story…one that has reached through the chest and touched the soul of both the parents of typical children and those of children with exceptional needs. I want to encourage all of the mothers at the swings to open up the dialogue about children of diversity. Ask questions. As primary educators in our children’s lives, we have the responsibility to learn as much about as many as we can so that we can teach our children empathy and acceptance. Thank you for sharing your story and beginning that dialogue.

Vicki, what a lovely opening to your new literary site. Thank you for sharing your story, your son, and your heart. It will be with much pleasure that I share the website with our statewide parent network, where you will touch the hearts of many who, like you and me, have been on one side of the swing or the other–each and every day.

I look forward to future essays–and news of your family.
Blessings to you, Mary

Dear Vicki Foreman,

A very well written piece. I come to the swing from another perspective. It is not just because I am a father but also because as a father of seven each of my children was born in what is referred to as normal.
My only daughter Maria was a straight A honor roll student when she was struck by a vehicle at age 12.
For me the mourning comes not only for what my daughter can no longer do, but also from the memories of what she once was able to do easily and now either struggles with or can’t do at all.

My focus since my daughter returned home has been on systems change. My daughter and I started a group My Community Care Team. We are focused on advocacy to change public policy and societal attitudes to include and support all persons in the natural and empowering environments of Family, home and community.

It is a fact most do not understand or are even aware is a problem. The US government and state governments have an institutional bias. In my daughter Maria’s case, state and federal government was spending over 200,000.00 per year for Maria’s “hospitalization”. When we asked for supports to bring Maria home, we were offered zero assistance. We brought Maria home anyway. It was a good decision.

I pray and hope your son, my daughter, and all who need individual supports to live at home and in the community are given the opportunity to run their own lives.

Thank you for your excellent article.

Kind Regards,
Frank Tetto / Co-founder My Community Care Team
http://www.mycommunitycareteam.com
“advocates for in-home and community inclusion ”

Awesome… keep up the good work. Usually, articles about children with special needs are written to the choir. You know the saying ‘you are preaching to the choir.’…the audience that you have already reached and convienced of your beliefs and understandings. That choir is often other parents of children with special needs.

It is refreshing and uplifting to have the column in a place parents of typically developing children will read and, hopefully, learn to be more than gingerbread men. We all need more rocks in our lives.

Happy New Year!

I can relate to that!!!
I was devestaded when my son was diagnosed autistic and severe!!!
And was trying to hide that from the world…to protect him…but then it hit me one day…I was doing it for me…he is a happy child and has no knowledge of the way other people view him or judge his delays…but I was the vulnerable one…and I have understood that it is not a sin or a punishmnet but a priviledge to be a sepacial needs mother!!! I am a spectrum mom…and proud of my children…I have been given the oportunity to be able to apreciate every small detail and advence in my childrens lives!!! Love, Gabby.

Really True! I have a daughter with a breathing tube. And I try to act as normal as possible around typical kids and their parents. But with time I have gotten better with responses to those “mothers at the Swings”.It gets so much easier for everybody if we open up and let them in on our strengths.
Keep them articles coming.

Vicki,
I want to thank you for two reasons. First, as a mother of an autistic son, I have often been the mother at the swings. Hell, we even have a swing in our house, and now I have to explain that to people.

I know the pain of mourning what could have been and in turn, of feeling overwhelming joy at each baby step of progress. A new word or eye contact that lasts more than a second. I’ve felt the guilt and strain of watching my typical child excel and beg for my attention, while I’m doing therapy with my other son. Sadly, I’ve made this an excuse not to grow and pursue my dreams.

So, I want to also thank you for inspiring me. I am a writer who had all but given up. I struggled to find the motivation and time to write at the end of the day. I found myself becoming more depressed because I was starting to give up. I feel like I can do this now. I owe it to myself.

I’ll never watch Ben on the swings again without remembering this moment. When I read your column and decided to get on with it.

Thank you.
Karen

Vickie,

My name is Michael Cohn, I’m 39 years old and I have a form of HSSA. I read your article about swings and I am requesting your permission to submit the article on your behalf to a local Disability newspaper. The paper is called Access Press and they have a web site that you can visit before you make your decision. The site is
http://www.accesspress.org. The reason I would like to see your article in the local paper is because it reminds me a lot of my Mother, very strong and caring. Another time I’ll share a story with you about my Mother and the rules of a game that made me a much stronger person.
I would like to speak with you sometime about the work you are doing and the work that I have done and continue to do to promote a positive image of disabilities rather than a negative image. I have a web site promoting the abilities of people with disabilities. http://www.promoteawareness.org

Michael Cohn
St Louis Park, MN

YEAH!!! What a wonderful article and what a wonderful way to start the year. I SO yearn for a place to “connect” and have a place and this seems to be the perfect fit! Thank you so much for your honesty–it truly came from the heart and you can tell.
Let’s all remain united in our journey and always remember that we do this for our children! God Bless. Michelle

Vicky, this is a piece I’ll be sending lots of friends to. I’ve been both the mother wanting to know and then, years later, the mother deciding whether I have the energy to share at that moment at the swings. Thank you for this.

What a beautiful piece. I’m still pretty new to the Special Needs Mama game, and your piece shows me both where I’ve been so far and what may be in store. Thank you for sharing your wonderful gift. You are a Special Needs mama, but also a Special Mama.

What a touching essay. I have a son with a speech delay and I do have days where my worries for him outweigh anything else going on. I realize his disability is much less devastating that many others but anything that makes life harder for a child is painful for a mother to watch.

I am also the daughter of two completely blind parents so I have a unique perspective on the world of the disabled. I am glad you are sharing your experiences with us.

Thank you.

This is a very powerful piece, Vicki. Thank you for an honest portrayal of your experience. We were blessed for 22 years with a special needs nephew who taught our family a lot about what’s important in life. When he left us, the many, many stories from his dad and brother comforted us. His life was a life well lived and he gave as much, or more than he got. I’ll look forward to your next column.

What a wonderful piece! You were able to touch those of use who are special needs mamas and those who are not. We are all from the same clothe, just some of us have a little odd stitching that make our patterns look different.

Wow! This is me. My child is special needs and is a sensory seeker as well. Whenever a typical parent says something to me I also think one thing and say something different. As I never know how that parent would react if I explained things. I have tried in the past and it looks as if their eyes gloss over as if it’s too much info. Of course, when I first heard about everything I probably had the same look on my face :) Sometimes it is overwhelming when you think about all of it.
Your story really touched me and I’m going to share it.
Thank you.

I’m also a mother of a blind, 5 year old super-preemie, though she is low-verbal as opposed to nonverbal. How true your words ring for me.

Ah, but I think perhaps, just perhaps the ‘mother at the swings’ could be could be in training to be a ‘rock’ for another mother. I see myself, pre-Parker as a ‘mother at the swings.’ At least she wants to know, to understand. She, I believe, would also welcome. I have simply always loved children. All children. No matter the packaging or lack there of.

My pre-Parker best friend, the one who I stood by though several YEARS of a nightmare divorce proceeding, loss of employment, the one for which I did my absolute best to be a rock for, turned gingerbread man on me about 5 minutes after she learned about Parker.

I write a blog about my micropreemie Elias, about wading through hope and grief to find acceptance in the unknown. I will definitely link to your article and refer my readers because you have articulated something I have never been able to put into words. Thank you for this beautiful essay.

Sincerely, Christy Everett

Thank you, this was an invaluable look into the perspective of a “Special Needs Mom”. Before my SNM status I was the “Mom at the Swings” and wanted to be a rock for the SN Mom. I thought it a gift from her if she felt she could trust me in her sharing of her sweet child, even if our “relationship” lasted for the moments we shared at the swings.
I have had the incredible experience of being given a beautiful baby girl with Down syndrome and have had the in-expressible experience of learning whom were our “rocks” and whom were our “gingerbread men”. The results were very surprising and painful as to who turned out to be which.
Thank you again for sharing your insight to teach others.
Peace be with you

Wow – what a great article. Knowing what to say gets easier – as my son Toby gets older it’s a lot easier (he is nearly 7; has a moderate level of CP; he was a micro-preemie). I love the rock/gingerbread boy analogue though – that’s right on target.

I’m a mom of baby boy born at 23 weeks, yet I am still one of those mothers at the swing. I lived the heart ache of bringing home a super preemie with delays, lung damage, and a serious eye disease. 10 years later though, he is only left with bifocals (and a corrected vision of 20/40), sloppy handwriting, and a mild learning disability in reading. So I stand at the swings not really knowing what to say or do. Why you and not me?! Why you at all?! How do I even begin to ask what I was spared?

This piece truly speaks of the heartwrenching comparisons I struggle against when I’m at the park with my pre-schooler with Down Syndrome.
Yet she runs, climbs, and laughs with the other children, just a bit slower. “Silly Mommy, what ARE you worried about?” her attitude says. Silly indeed.
I would be honored to share this sensitive story with my blog readers.

What a wonderfully written piece. Its hard to walk the line of reaching out and protecting yourself (or your family) without knowing what the reaction will be first. But you gotta take that leap of faith sometimes.

Thank you so much for doing this. I have two special needs children myself and it felt like you were pulling from my experience and emotions and putting it in black and white.
I think this will help people who are unsure of how to approach someone in a “unique” parenting situation to understand better and feel more comfortable.
We all love our children and have the best aspirations no matter their medical expected outcome.

Vicki,
What a great story. Let me tell you mine. Tyler was a 23 week preemie. He had a grade 4-5 bleed leaving him blind. He spent his first 9 months in NICU, birth weight 573 grams. He has a trach, G-Tube, finally got rid of the ventilator. Tyler just began eating this last year by mouth. Pureed food only but we no longer have to supplement with formula, still have to give water and juice by tube as he will not take these by mouth yet. Evan is ahead on the walking as Tyler is not there yet. But he has that infectious smile and laugh. Tyler has lerned to cover his trach and say bye bye and mama. No other words, but plenty of verbalization. People look every where we go. I have learned to overlook their stares in some cases have asked them to stop staring at him as it is unfair for them to stare at him when he cannot stare back. This stops people for a minute. We have been told that children like him are not welcome at our local school. Our previous school said he could not have braille books as he will never read.
With all that is bad there are wonderful moments that I would never change. Tyler has changed my life in ways that only certian people can understand. The mother of children llike ours. I do not keep Tyler from experienceing all that any other child could experience.
I have a new rock friend she was hesitant when she first saw Tyler. When I told her that he plays on our local Beep Ball Team she liked to have fallen off her chair. She immediately asked why we would throw baseballs at blind children. I still laugh at that.
What I have forgotton to say is that Tyler is adopted. This week I went to dinner with two friends of mine. One of them is also adopted. I was shocked when Robbie asked me why I adopted Tyler. I look at him and asked why his parents choose to adopt him. The reason I told him is no different. GOD knew I need a son and Tyler needed a mom. My ex inlaws asked when we were going to give this burden back. It takes all kinds of poeple to keep the earth moving.
May GOD bless you and your family.

As a foster parent to special needs children, I applaud all of you that have had to try and conquer the obstacles of raising a child with disablities. I too am one of those mother’s who always wants to ask, but, sometimes fear that I would offend the other parent. I am always curious, and I have a need to learn more, and I usually find something in common with the other parent. Thank you for sharing your life changing events with us, and always remember we are not to judge, only God knows why these children must endure the lifes he has given them. I know they just bring such joy to mine, and I am truly blessed by each one that passes through my home.

Thank you for a wonderful piece of writing. It’s interesting, too, because my son’s disabilities are not really apparent, especially if you only spend a short amount of time with him – thus making them much easier to deny, and making it easier for family members who should be rocks to stay comfortably gingerbread.

Thank you for this story–I recieved a link to it in my trisomy group email list. My daughter is 18 months old with a complicated chromosomal abnormality and is currently in the ICU with a fair prognosis. I have to say I always appreciate the “mamas at the swings”–it seems most of them have a story to share as well, about a relative, a friend or a child of their own. I have met many wonderful people at just the right time through other mothers curiosity and desire to know. Please don’t be afraid to reach out! What else are we here for?

Thank you for putting my feelings into words…I feel so alone at times but realize that there are many of us out there…Our children are so special in so many ways…we expect others to just know that…how could they…I couldn’t until I was put in my shoes…these wonderful children were given to us to teach us so many things…I continue to learn more every day from my Special Needs (she is special and she fills others needs) daughter, Rebecca

amazingly well written, thanks for sharing; i have a friend/neighbor who just brought her premie home. i think i’m a rock. i hope i am a rock. i want to remain her rock. beautiful insights and a nice story …. thanks again.

You perfectly captured my feelings about my 3 year old multiply-disabled daughter with the line “some days my grief…is stronger than my love.” Thankfully, I find that I have more love days now than grief days.

Very touching and so many mama’s at the swings are in the position and most have experienced what you expressed.

I am the mother two two “special needs” children. My 7 year old son has mild spastic quadriplegia cerebral palsy and our 2 year old was born with a bilateral cleft lip and palate. I am the step mom to 4 and we raise all of the children (six) in our home!

Thank you and I hope all mama’s realize just how special we are and how special and lucky we are to have the children we do!

Thanks!

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