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.