In the not too distant past, we used “the r-word” to describe people with special needs. If you don’t know what the r-word is or why its offensive, please stop reading now and read this article explaining why you should not use it to describe anybody, ever. Today we use the phrase “special needs” or “intellectual disability” to describe people with varying levels of abilities, but namely with an intellectual disability.

If you are paying attention, chances are that you know a person who cares for a special needs child. They may be have light or noise sensitivities, insecurity around crowds or have complete paralysis and an inability to communicate by conventional means. What I’m saying is that the special needs child might not fit the description in your head of what a special needs child looks or acts like.  Decades ago you may not have known a family with a child with special needs either because they were institutionalized at an early age or because that “odd kid” in the neighborhood actually had a condition that hadn’t yet been recognized.

Before becoming the parent of one of these special kids, I simply felt sorry for those families. I would think “poor them,” “I don’t know how do they do it,” and “it must be so hard.” You’ve probably thought these things too. What I never thought was the essential question hiding behind those statements: What makes being that child’s parent so difficult? If I’m being honest now, I think that I was always just embarrassed for them and sad that they had to be seen with that atypical child. I was applying my fears and insecurities at the time on them. I see things differently now. Now I know what makes being that child’s parent so difficult. It’s likely not what you think.

My Matthew has a very complicated medical history. I like to describe him in long flowing passages so that I don’t have to stomach the simple description, but for your sake, I’ll keep it short. Matthew has Cerebral Palsy which has left him a quadriplegic. He is g-tube fed. He is also immune compromised as a result of his liver transplant. The hard part of caring for Matthew isn’t his string of medications (never running out, remembering the last dose), his tube feeding, the never-ending therapy appointments and doctors appointments, or even the fact that he can’t move or talk. I’m not embarrassed of him and I have never for a second found him hard to love.

The hard part is maneuvering the everyday aspects of life.

When you become a parent your previous life of running to Target for a household item or the grocery store for milk becomes much more complicated. No more grabbing your wallet and keys and heading out the door. You have to get the baby in the car seat, remember diapers, wipes and maybe a bottle. When your have a child with significant special needs running a simple errand becomes much, much more complicated.

How do you go to the grocery store when your child can’t sit up on their own and is too big for an infant carrier? He can’t sit in the cart. I can’t carry him. Some stores have what are called Caroline’s Carts designed for people with disabilities. But they’re designed for bigger children with more head control, so those are not an option. Instead, I put him in a little umbrella stroller. Grocery shopping is done one of two ways: I buy what fits in the grocery bag that is over my shoulder or I have one of his sisters (ages 5 & 7) push the stroller while I push a cart. This works great for places with carts, but it is nearly impossible to shop in a store that doesn’t have carts, like a mall or bookstore.

With Matthew, we’ve all learned to have patience. A simple shopping trip can turn into a several hours long endeavor. A loud noise can startle him, which causes painful muscle spasms. Sometimes the car ride is too exciting or too stressful and he stresses himself into a vomiting fit. Or, the change in light from the bright outdoors to the dimmer store can trick his brain into thinking he is falling, which is terrifying for him. We are all too accustomed to sitting on a side road while I calm him and clean up him and his car seat or sitting at the end of an aisle in the grocery store while I try to soothe my hysterical son.

Shopping is further complicated by the inadequate bathroom facilities at most locations. Most bathrooms are designed for infant diaper changes. Matthew is three years old and doesn’t fit on those changing stations and even if he did, he’s terrified of them. Depending on how badly he needs a change I chance it quickly on a changing station while he screams and I hope against hope that it doesn’t break. If I can, I run out to the car and try to change him on the floor. Many stores will allow us to leave our bag or shopping cart at customer service, but there’s the ordeal of having to take him and his sisters out of the store and back in again. But what happens as he gets older? What do I do when I have a 10 year old that needs his diaper changed? Currently, the accessibility code does not require that businesses provide a handicap family bathroom that includes a changing table large enough for anyone larger than a year or two of age. Most families with a severely handicapped child, find themselves laying their child on the floor of a public bathroom to change them. It works, but it’s dirty and made even more difficult by the fact that these heavy children can offer little to no assistance in moving their body weight. As our world broadens its acceptance of the variety of special needs individuals out there, I hope that our accessibility code grows as well. We all need a safe place to address our child’s bathroom needs.

I recognize that Matthew’s case is fairly extreme, but the difficulties that I experience are often no different than what other families with children with less significant special needs are struggling with. The child with sensory issues may become over stimulated and have a breakdown during the shopping trip. Another special needs child may wander off or bolt from his parents. I’m not the only parent out there struggling to accomplish seemingly simple tasks with their special needs children.

When it comes to special needs children, it really does take a village. Families with special needs children need your help to accomplish these simple errands. We’ve established that you likely know a family with a special needs child, here’s how you can help them:

  1. Get to know their child. Special needs children seem scary at first, because they’re different from what you’re familiar with. They really aren’t scary. No child comes with an instruction manual. We are all just making it up as we go. The more time you spend with these children, the more comfortable you will be with offering to care for them, even if it’s just for an hour.
  2. Offer to care for them! Please! We love our kids, but, just like you, we need a break. An easy way to help is to set up a play date while mom or dad run errands. It would be life changing to run all of my errands without having to deal with the uncertainty of Matthew’s needs.
  3. Keep inviting us places, even when we always say ‘no.’ I know that you’ve invited us out a million times and we can’t ever make it, but ask again anyway. Maybe this time will be different. Even if it isn’t, we still want to feel like people remember us and still consider us to be friends.
  4. Come hang out for a while. On a daily basis, I get almost zero housework done. It seems like every time I walk away to get the mail or let the dog out some minor crisis happens. I would love someone to chat with while I fold laundry or someone to sit and watch over Matthew so that I can tackle those dishes. I would be surprised if there was a special needs family out there that didn’t have some task waiting to be tackled. Find out what is keeping them from getting it done and offer to be the extra hands that they need.
  5. Come hang out for a while, part two. To say that car rides are difficult on my child, is putting it mildly. A lot of special needs children struggle with car rides or just with being in a new environment (no matter how many times they’ve been in the same car). Bring the party to us! We still want to be social, just not at the expense of our child’s well-being. I promise, no matter how hard it is for you to get your kids out of the house, it is 100 times more difficult for us to pack up all of their medicines or equipment or anxiety reducing tools.

Our babies are not simple, that’s what makes them so special. We want you to get to know them and get to experience the great joy that comes from loving these great warriors.

Categories: Disability + Disability Advocacy, Mental, Emotional, + Behavioral Health