My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities

by Yantra Bertelli (Editor), Jennifer Silverman (Editor), Sarah Talbot (Editor)

In lives where there is a new diagnosis or drama every day, the stories in this collection provide parents of “special needs” kids with a welcome chuckle, a rock to stand on, and a moment of reality held far enough from the heart to see clearly. Featuring works by “alternative” parents who have attempted to move away from mainstream thought—or remove its influence altogether—this anthology, taken as a whole, carefully considers the implications of parenting while raising children with disabilities. From professional writers to novice storytellers including Robert Rummel-Hudson, Ayun Halliday, and Kerry Cohen, this assortment of authentic, shared experiences from parents at the fringe of the fringes is a partial antidote to the stories that misrepresent, ridicule, and objectify disabled kids and their parents.

Genres: Parenting, Nonfiction, Essays, Disability, Autistic Spectrum Disorder, Memoir, Mental Health

364 pages, Paperback

First published January 1, 2009

About the author

Yantra Bertelli lives in Seattle, Washington. They have written for various periodicals and have been known to pen and staple a zine now and again. Their essays have appeared in Breeder: Real Life Stories from the New Generation of Mothers, and The Essential Hip Mama: Writing From the Cutting Edge Of Parenting. They are a co-editor of the new anthology My Baby Rides the Short Bus."

Reviews

[Jenny · Rating 2 out of 5]

Perhaps my expectations for this book were too high. Or, perhaps I just went into reading this with a different purpose than what the book is meant for. Either way, I have to say, I was sorely disappointed. I had such high hopes. I had hoped that this book would address the reality of life with special needs, but also give a figurative high five to me...a pep talk of sorts...a "hang in there because life is good" type of book. In the introduction alone, I immediately started feeling bad and overwhelmed with my life. Instead of feeling uplifted, I felt a heavier weight, which was unexpected. For me, the tone felt bitter and angry. And I understand that, truly. Samantha's life hasn't been a walk in the park day in and day out, but I have tried to overcome some of those feelings and have tried my best to fill my life with light and love. And I felt very attacked for choosing to live that way. I believe the book is supposed to highlight lives from varying backgrounds, but instead, again I felt attacked for being a Christian woman who puts her trust in God, who doesn't live an "alternative" lifestyle as is so often mentioned, who likes the school my daughter is in and plans to keep her there, and and and. I was the type of person that these individuals often referred to who just didn't understand...the moms who were clean-cut, religious, and because of that seemed to just not get it. I often felt sad, discouraged, frustrated, and angry -- feelings I have tried to overcome -- while reading this. Even the contributors in the book who tried to lighten things with humor were often crude in their language and very sarcastic, still giving off that angry tone. It wasn't for me. I wasn't sure if the purpose of the book was to connect with other families with special needs, to buoy each other up, or to get a book out there to the rest of the world informing them of the difficulties of parenting special needs children. I'm still not 100% sure.

However, with all that said, I'm glad I didn't put the book down (which was my plan). Because as I read, I read about the unconditional love that these parents had. I read about how they are willing to do anything for their child. I read about happiness and victories. There were some entire pieces that focused on the joy of their children...but a majority was focused on the "dark side" with a final paragraph or sentence in there -- sort of the disclaimer -- "but I love my child with all my heart." And I believe them. That's not the point.

I believe there is immense value in sharing our experiences, good, bad, the ugly. But it was just too heavy for me, too discouraging, to read all in one book. Story after story, experience after experience, I just felt a weight that made me feel...icky...(how progressive is that word?). On the other note, a book that only highlights the joys and blessings of our special needs children may be too unrealistic or fluffy for others. And, therein lies the joy of books...and the freedom of reading what suits us.

Ultimately, I'm glad I read the entire book because I feel more informed about the literature that is already out there, and I know this book actually was a pretty big hit. Maybe that means my opinion is in the minority. And that's ok with me. I would hesitate to recommend it to everyone with special needs children as I believe it just needs to fit your personality and what you need at the time of your coping/healing/dealing process.

[Ame · Rating 5 out of 5]

It isn't as though I needed this book. From January 2013 onward, I've been very much an advocate for my son after he was diagnosed with Down Syndrome. I've adopted person-first language and I get it right 98% of the time, I have a license plate border advertising the local DS association, and I upload dozens of pictures of my son so everyone can see how cute he is, because he is "more alike than different". But as I'm raising my son, I've been seeking more and more voices that "get it". There's so much material out there regarding grieving and support, but really, I just want to hear your day-to-day. What's your life like?

This book is a wonderful collaboration on just that - parents raising kids with special needs (they get it! they really get it!), and we're talking ALL kinds of special needs (including conditions I had never heard of - the human body has endless possibilities for turning out just a tad different) and a nice variety of parental backgrounds (immigrant, single-parent, LGBTQ, hippie, unschoolers). What I found in this book is the sigh of relief I've been seeking for over a year. To know that there are alternative folks out there that think the "Road to Holland" poem is a bunch of bunk, and they don't appreciate being aligned with a saint over doing what anyone would do: parent. Parenting is not easy and it isn't fun (except when it is. I think I have TOO much fun with it.).

I love the authors in this book for being honest and hilarious about the joys and difficulties, especially little things like trying to bond with other parents of kids with special needs. If that's the only thing you have in common, then that's not always a cheerful basis for friendship. I was particularly touched by all the stories regarding children with autism. To truly understand the spectrum, read this book.

My next mission is to find a collection of stories regarding more working parents. Many of the contributing authors in this collection are stay-at-home or work part-time. Where are my full-time parents at? Holler back!

[Kari Yergin · Rating 3 out of 5]

Excerpts:

Not to take away from the value of when he was younger, when I was still a hopeful zealot. That was absolutely necessary. At some point you will give up trying so hard, and come to trust yourself, trust your child, trust what is. But if you haven’t been in your head first against every wall, if you haven’t tried until you cry for what could be you haven’t done your job.

So please, come ride this awkward short bus, or no passenger is alike, where there is no right, there is no truth. There are only some unusual, sometimes unpleasant, sometimes incredibly pure and beautiful, little truths. And, to paraphrase Tiny Tim in a Christmas Carol, God bless us, every fucked up one.

I know now that the phrase expecting a baby is absolutely right in its sentiment. Expecting some thing is all you really are doing as a parent. You imagine the baby that you will have and all the things that this child will do in his or her life, but those things are not real. When parents receive a diagnosis for the child there’s often a lot of grief that follows, but what are you really grieving? The sense of loss is for something that never was, it existed as an illusion. When babies are born they come with their own story, and everyone facing some sort of travel during their lifetime. Some of us come with our troubles right on the surface at birth. The important moments arrive when parents decide what to do next.

When I hear people now tell their righteous, heroic stories of letting parents know they see something concerning in a child, that all the rage comes back. When they claim other parents are in denial, I want to scream, how dare you! How dare you think you know what other people need, what they know and don’t know about their children! How dare you take away their process of discovery from them!

Two parents talk about the experience most of us end up facing sooner or later – the compromise of what we thought we knew for what works best given the limits of our kids, ourselves, our cultures, and our world.

When a child’s environment is unbearably overwhelming, he will find one little thing that he can readily control, blocking all other sensory input. But hyper focusing in this way, only compounds the initial anxiety as more and more control is required.

I am not embarrassed or ashamed of our son, but I do believe that we have an obligation not to let him be the local Freakshow. In other words, don’t put him in a situation where he will not be able to be his best self, and be ready to leave without being punitive if it is no longer working for him.

None of us get to define what a good life is for anyone else. All people are learning throughout the course of life. Brain studies prove it. We tend to have a narrow definition of learning.

We have a moral obligation to make life easier on others when possible. Universal accommodation is a valuable concept.

Even preparation can only take you so far. Just like parenting Nuro typical kids. You may think you know what’s coming, but you don’t really know – no one does. Really, what my husband and I do is not so different than parenting any child – you learn how they function best and you make it happen as well as you can.

Like many mothers and fathers I had visions of the type of parent I would be. I would have a homebirth and would breast-feed for several years. I’d answer questions patiently and encourage exploration and play. I could envision joining my children in fantasy games incorporating all sorts of toys and furniture props. I’d be respectful to them and of their need to be children and use gentle, loving discipline techniques to guide their behavior. Most of all, I’d enjoy spending time with them and look forward to our interactions. It was a lovely fantasy, and as seems to happen to many parents, fate was to provide plenty of opportunities for us to reflect back upon it ruefully.

I always cringe when people tell me how strong or brave I am. My mom offers this praise regularly, saying that she could never have handled what I have been through. I always tell her that I’m no stronger or braver than she is. I just don’t have a choice. We are moms, we do what needs to be done, and we try not to end up hospitalized ourselves in the process.

My helpful friends just listen. I seem to have a burning need to lay out the whole story and all its gory details because it somehow makes it both more real and less terrifying. They don’t look horrified or uncomfortable when I talk. They nod sympathetically. And when I’m done, they say, wow that is really shitty. It helps when they swear. It adds gravity to the situation. They say I’m so sorry. I brought you some chocolate. They bring meals. They take the kids outside in the yard so my husband and I can just sit on the couch together, alone. They don’t wait for me to ask for help. And I feel like I can never repay them for their kindness.

It is with regard to my daughter’s special needs that this line is most blurry for me. If I talk about my journey in parenting a child with special needs, I inherently share that she is different from neurotypical children. Will she one day aspire to keep these differences private? Will she be able to choose to pass as Neuro typical? Will she want to? If I have already shared a difficult in utero journey leading to premature delivery, her brain damage at birth, and her terrifying early prognosis with our community, or with readers, then have I stolen her choice?

Unlike facing one’s own death, knowing how it will end, in parenting a special child, the future is uncertain at best: it is someone else’s future that we are responsible for and it all depends on us.

Those of us that have special children are just like any other parent. We do the best that we can and make a million mistakes along the way. We might be elevated to Saint status or we might be scorned but in the end we just do the best we can with what we have.

To kids his own age he’s a nuisance. To the school district he’s a special-needs child.…… To my husband and me, he’s just Daniel, but even we can’t say what in his behavior is chemical, what’s within his control, what he’ll outgrow, what will sculpt and contour his growth in ways we cannot see, what’s a good sign, what a bad one. All inky blackness so much of the time, with moments of dragonflies flashing their brilliance across a dull sky.

[Unwisely · Rating 4 out of 5]

I'm not sure why this was on my to-read list; I have no kids, no particular reason. But man, it was really good. Like, I would read it while waiting for lights to change while walking to work from the bus.

It's a collection of various parents' experience parenting a variety of children with challenges both mental and physical. (Apologies if I get the terminology wrong; for a lot of this, this book was my first encounter.)

You see the heart-rending choices that come with uncertain funding; with navigating the bureaucracy (but in some cases it's super helpful, reminding me once again that policy is hard); with Other Humans. And of course, with kids being kids, particularly when they have difficulties on top of trying to grow up.

Several things struck me, but the one that really made me say, I HAVE HAD THAT EXACT EXPERIENCE was a mother who was venting about people who talk about how strong she is. Her response was, what else could I do, *not* parent my child? It's just day by day, I do the best I can. Which, yes, I feel you, sister.

A very worthwhile read.

[Christy Stewart · Rating 2 out of 5]

The essays in this book are written by loving, imperfect, frank parents of disabled children writing on specific aspects.

If you are looking for a how-to, this isn't it.

If you are looking for a serious look at those who have disabled kids, this isn't it.

The book seems good but sort of useless unless you are just looking for a light read on disability culture.

I just read a blog about a man who, upon learning his 2 year old had a terminal illness, contemplated murdering the child and in an ironic twist discovered his wife was thinking the same thing.

Put that essay in this book.

And what is with the offensive title? What was rejected?

"My kid is too retarded for us to eat in public"?

"I gave birth to a freak but since it's taboo to give your child to a circus, we had to keep it"?

[Meghan · Rating 4 out of 5]

I can't remember much about this anthology collecting personal essays written by parents of children with disabilities, but the author event held at the Olympia Timberland Library was wonderful and memorable - several writers read their essays, and there were tears while a woman read aloud an essay that in part dealt with her feelings about sending her Deaf teenage son to a Deaf boarding school. There was another emotional moment when a woman wrote about her younger son's experience realizing he was different from other kids, and her son was in the audience and openly crying while she spoke. Most of the writers had brought their families with them to the reading, and it was really great.

[Russell · Rating 5 out of 5]

Any book that simultaneously offends, educates, and provokes thought as effectively as this book deserves a five star rating. This is a must read for any parent of a special needs child.

[Jessie Marie · Rating 5 out of 5]

Poignant and important and eye opening, particularly for future educators.

[Boszka · Rating 5 out of 5]

This is an amazing book, the best thing I have read all year.

Informative, insightful and so inspiring because you get to read about women who do have supercomplicated lives and are struggling but who are still there for other people and care for their families every day.
By sharing their experiences they are liberating others.

[Lauren Mills]

PSA: this book was published in 2009

[Elevate Difference · Rating 5 out of 5]

My Baby Rides the Short Bus is an anthology of articles written by parents about their firsthand experiences of raising children with disabilities. In addition to their common identity as parents of disabled children, the contributors also share another trait: all of them find themselves outside of the mainstream by virtue of identity or political perspective. Together the articles make up a lively collection of authentic voices that speak to the joys and challenges of being marginalized and/or subcultural parents raising special-needs children.

Many of the authors write about how their non-mainstream identities have affected their experience of raising special-needs children. Thida Cornes writes about how she learned to work within the constraints of her own disability, dystonia (a physical disability that causes muscular spasms), to take care of her son, who has been diagnosed with cerebral palsy. A lesbian minister, Maria June writes about becoming, at age twenty-three, the foster mom of a fifteen-year-old with special needs. Amber E. Taylor, a self-described “black biracial dyke with head-to-toe visible tattoos and a bald head” and an adoptive parent of a son with Down syndrome, writes about the backlash she receives from biological parents of disabled children who think she shouldn’t attend support group meetings because she “chose” to parent a special child.

The authors also write about the process of navigating the many institutions ostensibly set up to help special-needs children, but which often end up sidelining them. Several authors write about the experience of diagnosis: the behavioral testing milieu in which young children, separated from parents and subjected to unfamiliar conditions, unsurprisingly fail to show their full range of abilities, and then are slapped with labels that sometimes sound more like death sentences. Authors who spend 24/7 with their children write about the experience of not being believed by “specialists” about their children's abilities and needs, or being subtly blamed for their children’s disabilities. Expressing the frustration felt by many of the authors, Kerry Cohen writes, “Unless I hate the things that make [my son:] different from other children, I will always be a wayward mother.”

But not all the stories are about frustration and tragedy—many of the authors write about the creative and energetic ways they have found to help their children thrive, often in direct opposition to the institutions that are set up to “help.” Karen Wang and Heather Newman write about “unschooling”—creating stimulating and safe learning spaces at home, tailored specifically to their children’s particular needs—while Shannon Des Roches Rosa tells how she co-founded a special education PTA that helps parents of children with disabilities advocate for their children in the local public school system.

As so many of us know from personal experience, it can be very difficult to be part of multiple marginalized communities. As one of the authors, Andrea Winninghoff, laments, “In a community of parents with deaf kids, I will always be the single, young, gay mom. Among gay parents, I will always be the one with the deaf kid that they can’t speak to.” While there are many books available on parenting special-needs children, very few of those books offer an explicitly political analysis of the rights of special-needs families and of the systems that do or don’t serve them, and very few of those books acknowledge the experiences of parents who are out of the mainstream, whether due to race, class, gender identity or sexual orientation, disability, political beliefs, or lifestyle. Frank, engaging, and broad-ranging, My Baby Rides the Short Bus is a rare and precious treasury of these too-often invisible stories.

Review by Ri J. Turner

[Paige Wallis · Rating 4 out of 5]

A fantastic book that gives real insight into the lives of families--all kinds of families--with children who have special needs. While I obviously couldn't relate 100% to each story, something in each resonated deep within me. "Dual Parentship Status" rang especially true to me even though I only have one child as of yet. I share many of the fears, concerns, hopes the writer expresses about having a second child.

Parents like us are not magically gifted with special abilities to handle every hardship or crisis that may come up in regards to our children's difficulties. We experience a full range of emotions, many of them vary dark: black rage, severe depression, and guilt to euphoria when our child(ren) finally masters something we'd thought may be beyond them. My 6 and a half yr old daughter has literally just mastered (daytime) toileting and a friend of mine's 7 yr old daughter just recently said her first official word.

As a society, we may have come a long way in laws being passed that mandate services and access for our children, but it is far from perfect. Knowing that some parents struggle too with biases against them because they're gay, or adoptive, or even themselves disabled will let the reader know just how far we've yet to go in our culture in order to get things right for ALL of our citizens.

Don't dismiss this book just because you may not (yet) have any personal experience with people who have special needs. Read this book to educate yourself and get a more well rounded view of humanity.

[Ciara · Rating 3 out of 5]

an anthology of subcultural parents raising special needs children. the stories run the gamut, from adoptive parents fostering special needs children to disabled parents raising disabled children, from folks writing about their still-toddler children to parents writing about their experiencing raising children thirty or forty years ago. folks mostly contributed essays, but there are a few poems sprinkled throughout as well. not all of the parents would necessarily agree with each other about their parenting strategies if they were all in a room together. one essayist swears by a gluten-free diet for her autistic child, while another dismisses it as bunk. one essayist writes about the struggles of jumping through bureaucratic hoops to get financial assistance for the many therapies her child requires, while another swears by doing it all herself. some parents struggle with home-schooling their children, while others struggle with finding public schools that can accommodate their children's needs.

it was a really interesting read, though as a non-parent, i doubt i'm the target audience. it suffered from the usual problems of anthologies, an unevenness in the quality of submissions & a reluctance to edit away anyone's authentic voice. but it definitely shone a spotlight on a population often sidelined, judged, dismissed, & ignored by educators, other parents, disability advocates, therapists, social workers, & non-parenting subcultural weirdos.

[PM Press · Rating 5 out of 5]

In lives where there is a new diagnosis or drama every day, the stories in this collection provide parents of “special needs” kids with a welcome chuckle, a rock to stand on, and a moment of reality held far enough from the heart to see clearly. Featuring works by “alternative” parents who have attempted to move away from mainstream thought--or remove its influence altogether--this anthology, taken as a whole, carefully considers the implications of parenting while raising children with disabilities.

From professional writers to novice storytellers including Robert Rummel-Hudson, Ayun Halliday, and Kerry Cohen, this assortment of authentic, shared experiences from parents at the fringe of the fringes is a partial antidote to the stories that misrepresent, ridicule, and objectify disabled kids and their parents.

[Jen · Rating 4 out of 5]

Honest, sometimes heartbreaking, sometimes surprisingly funny, My baby Rides the Short Bus is a collection of essays written by parents of dealing with the experience of raising kids with disabilities. The diagnosis's run the gamut, from spina bifida, to hemophilia, to autism, and to cerebral palsy.

Many of the with parents write about how they already come from a place considered counter-culture or alternative. I think whether or not they start they their many parents of special-needs kids often feel left on the outside of mainstream parenting culture.

Of course some of the essays spoke more to me than others, but it was very much a worthwhile read, and as a parent of a special needs child it made me feel a little less alone in the world.

[Beana · Rating 2 out of 5]

Very real, to the point that it's difficult to read sometimes. I know any of the parent authors would slap me and tell me that it's not nearly as difficult to read as it is to live with and care for the children they're raising, and they're right. However, instead of recommending this book to others I would give them the advice I learned from reading it: never say "I couldn't do it" to parents with "differently abled" kids because you would do it if you were in their shoes, listen to the parents when a discussion of the child's needs is goin down (even if you're a teacher, social worker, nurse, other professional) and let the child learn and explore just like any "typically developing" kid! they're just kids! we're just humans! everyone's 100% it's just divided up differently.

[Carla · Rating 5 out of 5]

What a great book. It's a must read for any parent, grandparent, or caregiver of a special needs child, or really anyone who interacts with families caring for special needs children. The short story format gives great morsels for busy readers, but I found that I could not put the book down once I got started - I just devoured it. Even though I know the community is large, I often felt alone and uncharted in our journey with our son. This book validated many of my emotions and thoughts as we became a special needs family. The resource section at the end will prove to be very useful. This is now on my husband's assigned reading list.

[Colin · Rating 4 out of 5]

This is an important collection from parents of kids with disabilities. It was nice to see so many queer families represented, and to have some kind of social justice analysis included. I didn't agree with all of the approaches or perspectives--there was one story in particular that i was like, woah i hope her kid never reads this--but this collection definitely fills a void and is needed. It also gave me important perspective on what my own parents' struggles may have been, and some valuable context for the more overbearing/overprotective attitudes from parents I've dealt with in my job. Recommended.

[Sha · Rating 5 out of 5]

This book is really amazing, and came at just the right time. Some very close friends of mine recently had a baby with special needs, and it's so refreshing to find a collection of writing by parents who live outside the mainstream and are grappling with the issues of relying on the health care system while fighting for a better one, how to live out our politics in new ways when unexpected challenges arise, and the gritty, messy, beautifully honest emotions that come along with loving people (whether they are little ones or grown adults) who have needs and bodies and machines that fall outside of the "norms" we are taught.

[Susan · Rating 5 out of 5]

I found myself highlighting whole paragraphs, pages - saying "Yes, Yes, Yes!"

My unique experiences, and more to the point frustrations, aggravations, obstacles are not so unique after all.

No more sappy Welcome To Holland, or What a Special Gift, or the best one -- God CHOSE You for this Blessing. Gag Me! Better yet, take my child for an entire afternoon and let me get a break (bless those few who did).

This book is real, real voices, real parents, real children with real challenges. If you are not June Cleaver and your child(ren) are special needs, and you are over your first or tenth flush of denial, this book is like balm for the soul.

[Alicindra · Rating 5 out of 5]

I am very glad I ordered this book on a whim. It was one of the best non-fiction books I've read in years. It really is absolutely fantastic. If you have any understanding of special needs kids then this book will speak to you. If you don't you need to read this book. Parents of special-needs kids are no different than anyone else and this collection of essays really brings home the stupidity of various constructs and assumptions.

[Lauren · Rating 4 out of 5]

This is a really good anthology of parents telling what life is like raising children with all types of disabilities. It's also the stories of parents who don't fit into the white middle class American mould. Even though I'm not in the demographic the compilers were originally catering to, this book had me thinking about how things are remarkably similar. This is a great book to gain an insight into what we're going through.

[Pam · Rating 4 out of 5]

A very different book about raising kids with disabilities...not light or pretty or chicken-soupy at all. A good read for me as a teacher, to try and understand a bit better the perspective of parents navigating the world their children must inhabit.

[Asher · Rating 4 out of 5]

This is amazing book. I learned so much. There's a range of parenting styles and attitudes here, but all of the parents and the kids are real. (None of the fake 'God only gives us what we can handle' attitudes). There is strength, pain, weakness, and love.

[Andrea Givens · Rating 5 out of 5]

I'm a contributing author to this book.

[Winnie · Rating 3 out of 5]

This was/is a comforting yet unnerving read. Lots of people in the same boat, but they are also struggling. Still, it will help me get my "game face" on before our next IEP meeting.

[Jen · Rating 1 out of 5]

Parents that state they "don't have time to complain" because they need to take care of their children, yet found the time to write/contribute to this work.

[Chrissi Witkowski · Rating 5 out of 5]

Awesome book!!

[Kristi · Rating 4 out of 5]

Nice to hear voices, and some appropriate swearing, that shine insight on highs/lows of raising a kid with special needs

[Literary Mama]

Part of Literary Mama's Essential Reading list on alternative motherhood. http://www.literarymama.com/litreflec...