(Disabled) Toddler's Day Out
Photo by Julie Verlinden
When I think of babies, even of my own developmentally delayed 16 month old, the words "disabled" and "handicapped" don't usually come to mind. I guess I just assume that most babies and toddlers are helpless to some degree. The disabilities of my own child don't even seem that obvious to me, that is, until I leave the comfortable little bubble of my house and head out on the town where I see other, much younger babies surpassing him in every aspect. In an effort to raise awareness, allow me walk you through a day out with a disabled child. Please know that in no way am I complaining, I am simply pointing out what it is like for families, like mine, who have to do things a little differently. Maybe your family is like mine, and being able to relate will bring you some comfort and relief. Maybe you know a family like mine, and will gain some insight into their day to day life. Or maybe, you'll simply learn a little bit more about families with disabled children. Either way, a little empathy goes a long way. For me, I'm still wrapping my head around having a disabled child, and writing it down, and saying it out loud, will serve as an avenue to acceptance.
I'll start with my packing list. This doesn't really take me too long anymore, but it really depends on how long we will be out. Planning ahead is an understatement. Planning for everything even the apocalypse is probably more accurate. I literally run through every possible scenario and plan for everything - if the bottle leaks, if his g-tube pops out, if he spits up, etc. Let's say we are out of the house for approximately four hours, like I was just yesterday to run to World Market, Target, and Whole Foods. I know for sure I will need to bring formula in case Oskie gets hungry. He doesn't speak and has very minimal communication, so he can't tell me when he is hungry, leaving me to look for signs. He may get squirmy and slightly fussy, but I usually have to stay on top of his schedule and anticipate his hunger so he doesn't have a complete meltdown out of nowhere. Packing "lunch" means a bottle of pediasure, water for hydration / flushes, a 60ml syringe, an extension tube, extra gauze, and diaper changing essentials. I still have to bring a regular bottle, like a Dr. Brown's for example, to give him whatever he can take by mouth. A regular sufferer of constipation issues, I may have to substitute plain water for Miralax when he is backed up. If he is backed up, this means I need to bring small towels and an extra change of clothes or two (for me and him) since he tends to vomit from lack of space in his belly. It's hard to know when he is backed up because sometimes he poops, just not enough to clear himself out.
So, feeding supplies, diapers, wipes, extra clothes, wallet, cell phone, and sling ring. Check, check, check. Bringing a sling ring is so important when we are out shopping because I can't push his stroller and a shopping cart at the same time. Since he can't sit up for too long in a shopping cart (sometimes not at all depending on the height of the backrest, or how tired he is), and I need both hands, I've got to baby-wear. He loves it, so it's really a win-win. A stroller is fine to bring if I won't need to push a cart, or if I have someone tagging along with me. Otherwise, my favorite sling ring, my Sakura Bloom in Praline (pictured below), goes in my tote bag along with everything else.
I pack up the car, get Oskie in his car seat, and head out for shopping. We don't have our handicap placards yet, so I park wherever I can find a spot. We'll be getting our handicap placards soon, which will help tremendously. Carrying a toddler that hovers around 20lbs is no easy feat for a 5'2 shrimp with previous back injuries, like me. I work out, heck I'm a fitness instructor, but my biceps are shaking after a day like this. See, Oskie doesn't have the best trunk support, so he can't really assist me in transferring him in and out of the carseat, in and out of the sling ring, or in and out of the shopping cart. Not to mention, during check out I need to get my wallet out for payment, which means if I don't have him in my sling ring, I can't just sit him on the counter without holding onto him. He will throw himself backwards - a (dangerous) behavior he has become very fond of lately. This means one hand/arm for toddler, one hand for wallet, no hand for cart.
Let's say we need to do a feeding in the middle of shopping. If we have the stroller, easy peasy, I can feed him by bottle whatever he'll take, and then I know he'll be upright in his stroller to help his tube feed digest. So he doesn't get too full, too fast, I'd probably do one third of his feed, then take a little walk for some shopping, stop and do another third, then walk, and then finish the feed. He would need to stay upright in his stroller for another 20 minutes so there's no chance of vomiting or aspirating. Now, let's say it's a sling ring kind of day. I've got to find a place to sit and get comfy. I'll lay out a burp cloth for his bottle and tube / syringe so I don't get formula all over the place. Then I've got to hold him in one arm, as upright as possible, and connect his feeding tube, pour the formula into it, and hold it up to let the milk go down all with the other hand. Then we just sit, and wait. Since the food goes straight into his stomach, I can't put him in his sling ring right away, because his belly will press against mine and he'll throw up. I've learned this the hard way, hence, packing an extra shirt for me.
Phew! I'm exhausted just writing this.
As I go about my business day to day, I don't really give much though to my son's differences. But as I write this out, and reflect on our "normal", I realize that it's not so normal at all. My son is disabled. We will soon have a handicap placard hanging from our rearview mirrors -- which I don't know whether to feel defeated or elated about. I haven't really said it out loud, "disabled", it just feels too weird. When I walked into Target yesterday, I was hoping to see some of those carts I'd heard about made for special needs kids --the ones with a full seat and a five point harness to hold the child in place -- but, there was none. I thought about approaching a manager to ask if they had some hidden, since my child is "disabled", but it was too hard to build up the courage to say. My mid-back was yelling at me all night, though, so it's probably time to put the pride aside and just start asking for help -- whether that's in a special shopping cart, an extra pair of hands on shopping days, or even just pulling into that handicapped parking spot.
Again, I'm not writing this post to complain. I love my life, and I wouldn't have it any other way. It is challenging, at times, but I have a beautiful home, a loving family, and a wonderful son. Before having him, I wouldn't have known a thing about what it is like day to day for not only a disabled child, but the family as well. Thankfully, the disabled are getting more positive mainstream publicity, even on TV, thanks to shows like Speechless, one of my new favorites. (Minnie Driver is my spirit animal).
Disabled, handicapped, special needs, medically complex, differently abled, non-verbal, lacking in independent mobility, poor muscle tone, rare, slow, dysmorphic -- these are all labels that have been used to describe my son, and many other children like him. Labels don't even necessarily offend me, I understand that there are certain connotations to these labels that make it easier for others to understand, which can make it easier to explain without going into a ton of detail. Because there is a ton of detail. All labels aside, at the end of the day, we are simply just a mom and a kid who have the same errands to run as everyone else, we just need a little extra help to accomplish them sometimes.