Literary Mama writing about the many faces of motherhood
Special Needs Diaper Bag

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My oldest and dearest Special Needs Mama friend takes her child to kindergarten not with a diaper bag or backpack but with an actual suitcase on wheels. Inside: a laptop computer her non-verbal daughter uses to communicate; a spare "mickey" (not the mouse; rather, a type of feeding tube since my friend's daughter does not eat by mouth); an adapter for the feeding tube; syringes, again for feeding; medications; a change of clothes; extra formula; and Valium, in case of seizures.

This Special Needs Suitcase goes with Alexandra to school and therapy and back home again. Alexandra herself is in a wheelchair, so her nurse or mother or aide is the one wheeling her suitcase. Sometimes, Alexandra's younger, typical sister, Sydney, is caught unzipping the suitcase and taking out the laptop. "Purple," her mother will hear from the corner of the room, where Sydney is pushing its buttons. Or, "Hello, my name is Alexandra!"

~

In my son's case, that we still have a diaper bag speaks volumes about our situation. Typical kids who are six years old use the toilet; they eat. Their parents don't carry around diapers and wipes and bottles. The kids have backpacks full of snacks, and lunch bags for school. There are no computers to help them talk; there is no Valium for seizures.

Sometimes the contents of the Special Needs Diaper Bag represent a way-station to fewer needs. In our case, we used to keep syringes and feeding tubes in our bag, too, along with a spare oxygen cannula, medical tape and gauze, a large Ziploc bag containing as much as seven different medications, and in Evan's early walking days, orthotic devices to help support his ankles.

But sometimes the contents of the diaper bag increase over time, as the needs grow larger. My friend Lisa's diaper bag once contained only diapers, pumped breast milk and formula for her son Quinn. Later, when Quinn had cancer, the diaper bag included an oxygen tank, a mask to prevent illness, a pulse oximeter to check the oxygen levels in his blood, and a suction machine to keep his ventilator clear. It took Lisa forty-five minutes to pack this bag, to be sure she had everything, before she left the house; after her son passed away, it took her over a year to forget what it was like to leave the house with nothing in her arms.

Another mother writes of her daughter who has a disorder that causes her skin to tear or blister on very slight pressure or friction. "We have Aquaphor and bacitracin; bandage materials; a sterile needle; syringes and sterile water; and a super soft, clean blanket to ensure she doesn't touch potentially infectious surfaces."

Not your typical diaper bag there, not at all.

~

When Evan first came home from the hospital, my father looked around our bedroom at all the medical equipment necessary to keep this fragile child alive -- oxygen tank, feeding tube, a pump to dispense formula into the feeding tube, those seven different medications and a chart to track them all -- and said, "You've got your own little NICU here."

Indeed we did. Evan took up residence in a co-sleeper by my side but next to that co-sleeper stood the feeding pump, and in the corner of the room the torpedo-sized oxygen tank. At the time of Evan's homecoming, I imagined each piece of equipment gone, and my child growing and developing like his typical, older sibling. At the time, I didn't know that Evan's needs would be permanent or that the same diaper bag I'd used for my older daughter would, in fact, evolve into a Special Needs Diaper Bag, with a very different set of items inside.

~

Like Alexandra, with her suitcase on wheels, the items that accompany Evan to school are many. His Special Needs Backpack, if you will, has a communication log for his two aides and six specialists; his cane; the wrist talker he wears to help him communicate; and a switch attached to his belt that allows him to say, "toilet, please." At a recent planning meeting for Evan one of his specialists suggested incorporating an additional communication device, to which I replied, "Uh, his backpack's already heavy enough. Shouldn't the goal be for him to carry less, instead of more?" We had a laugh over that one. "Watch out, here comes Evan, with a shopping cart full of the things he needs to get around!"

Special Needs Mamas tend to lose perspective about the world our diaper bags and backpacks contain. Of the details of this life, the items we need to keep our kids healthy, learning, growing. Of course everyone carries around rectal Valium! And assistive communication devices. And orthotic supports. As for syringes or medical tape, Special Needs Mamas can talk for hours about the pros and cons of various sizes and types, much like the days I shared tips about bottles and nipples and breastfeeding with typical moms. And that's our common ground, the way all moms are the same: we carry what we need at each moment, forgetting that it was ever different, or what life was like before the one we now lead.


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.


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The lists in these bags reminded me of Tim O Brien's "The Things They Carried." More than just objects, but representing so much more. Loved your last line - so powerful. Another moving and thought-provoking column, Vicki...
Beautiful, thoughtful column. Again. A lot of the stuff in my 'special needs bag' is mental (my ds has Tourettes/OCD/ADHD). Except for the communication book, and various medications over the years, all of our equipment (like the disorder itself) is "all in our in heads". It is nonetheless crucial, dangerous when it is missing, and sometimes dh & I misplace a piece or two when we're frustrated or tired.
Vicki, Your column continues to reach through the Internet and grab hold of soul. Thank you. Jillian
great column, Vicki...an eye-opener for a typical mom like me (though i have to admit the rectal Valium did cause a twinge of envy) and a testament to how adaptable moms are when it comes to caring for our kids.
It's amazing, too, how we each adjust to bear our always-changing loads. All three of my girls are typical and, with the youngest at almost-16, it's been a long while since I've carried a diaper bag, but there is always "baggage," more or less, of one sort or another. Thank you for a great column, Vicki; I enjoy it.
I know what you mean about being 'out of the loop' sometimes. In a moment of weakness [extravagance] after my own jaw surgery, I bought a lime green case on wheels that zips open like a cupboard for all those essential little bits and bobs that my two autistic boys need, as well as their typically developing sister. No longer the camel pack for me, I would join the club of the super sophisticated. As it turned out, my natty little bag on wheels is really a 'craft' trolly - so little do I know! Best wishes and keep heavin' the trolly!
I just took a workshop on helping other families get their deserved hours for In-Home Support Services in California. Your column this month reminded me of all the time I spent PREPARING to prepare to leave the house - much of it had to be done the night before. I'll be a better IHSS supporter now, with the memories refreshed. Thanks again for your rich insight!
oh, yes. so beautiful, vicki. we DO carry what we need at each moment, or what we MAY need at any moment. you captured this so well, this preparedness. it's like WE are the diaper bags, our children's needs and supplies packed inside us where ever we go.
Well, it wouldn't be a special needs diaper without rectal Valium, right? I am always amazed that even if our special kids have different ailments one common thread that links them all is the seizures. Beautifully written as always. It makes my special needs diaper bag burden a little less heavy.
So beautiful. Only someone who has shared this path can truly appreicate. I never thought MY diaper bag would be the one to carry the Diastat. But after reading your column, I'm reminded how lucky I am to still be able to carry it.
Well, it seems that as your grab bag grows, so does Evan. "Toilet Please?" He'll command the starship enterprise someday - now that's a big bag - but clearly the benefits are out of this world wonderful. Much love and appreciation to you.
Vicki- Such deliciously poignant prose. I love the last sentence. You sum up the burdens and blessings of what we mothers carry. Here are some actual queries about Alexandra's diaper bag: "Is all of 'that' realllllly necessary?" "What is all of that stuff?" "Why are there diapers in there?" "So what's in her suitcase on vacation?" "I think it's illegal to be carrying 'that' around with you." (my personal favorite) Difficult to discern which came from the 6-year olds versus the adults! xo
So many things; and such lovely uncluttered writing. There, so clearly, at the top of the pile is amazing mother-love. Thanks for another moving piece!
Another wonderful column--I love the sister who sneaks the language computer; I love the compassion and the humor; but especially, I love the love. It's what we're left with, as mothers--great, big love. I don't notice so much the things I'm missing, or doing differently, as mama to my son with Down syndrome. What I notice is what we have; perhaps this is something that I've learned as a result of being his mom. Thanks for another great, thought-provoking piece!
Your writing is such a gift to us all and your willingness to share yours and Evan's life even more so. With love from A Mother at the Swings
So true! we had all of the feeding tube equipment in our "diaper bag" for the first month and a half. Miss T is 9mo now and I only recently took the "extras" out. I still carry any and all ointments, cough/cold, fever reducers, thermometer(of course)(lol) and the "snarfler" blue bulb syringe, tissues, plus many other things I can't quite think of right now. This is only one pocket of the backpack we use as a diaper bag. Wow I had never thought of what the items in the diaper bag contain shows a lot about us as parents and what we have been through and what our concerns are for our child/children... makes a person think... thank you again for a wonderful article.
Vicki, I've thought of this many times since I initially read it. At that time I didn't have time to respond to it but wanted to come back and let you know that it has left an impression. So insightful and well-written; what a creative way to share what life is like for a parent with a child with special needs. Thanks so much for writing this.
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