Yes, My Disabled Child Has Chores

Many years ago, one of our first home providers was working with another family who had an older teenager. The provider and the client were only a couple years apart in age. (Don’t worry, -the provider maintained confidentiality the whole time!).

One day, I asked what kinds of things she did in her job with the client, to which she answered,

“Mostly, I help her do chores. There. Are. So. Many.

Given A2 was only about 4 years old at the time, I was simply curious about what life at home with a teenager with a disability would look like without actually considering what life with MY kid as a teenager would look like. We didn’t know our own long and winding road at that point, of course my child would have chores! Didn’t the provider have chores? (As it turns out, possibly not, since knowing far more teenagers now that my kids are teenagers themselves–this parenting philosophy I have might be a bit of a new millennial enigma.)

What happens if a teenager doesn’t have tons of independent leisure skills and has difficulty with self-direction? Do we still teach them how to play with toys? No. If they have not enjoyed this activity as a younger child, then probably not.

Do we leave them alone to wander the house with their iPad? Well…yeah…admittedly sometimes. Especially if they enjoy doing that.

Do we plan on living forever to take care of ALL their needs? Yes, yes we do, but until we figure out an actual way to do that, that is not an option.

The most basic of basic skills must be taught to A2 in an explicit manner. He learns all sorts of things, just like everyone else, but at a snails pace. By not teaching him how to care for his surroundings and belongings, I would be stealing from his adulthood to bank roll a leisurely adolescence. Those processes start NOW so he has a chance for a modicum of independence, the ability to have options and choices and self-determination as an adult. Learning to fold a washcloth may take a typical child 20 minutes to learn and an hour to master. The same washcloth skill might take a year to learn and 3 years to master. Really.

At 14 years old, he is in his evening of the day–the last leg of time being on his side before he is an adult.

A schedule that includes daily expectations gives A2 a sense of peace because he understands how his time will be filled. This summer, with a skeleton crew of help, Momma has been on the case to level up on these skills, scaffold independence and watch him enjoy and take pride in these “activities”. He verbally perseverates less. He comes to me beaming and says things like “Wook! Do it all by yourself!” as he surprises me with a made bed or silverware put in the proper drawers. He is generally, well….happier with chores.

Chores a narrative of dignity and self determination.

Caring for our surroundings gives us a sense of control, a sense of ownership, a sense of responsibility and yes, ultimately a sense of community. If he has to do his chores just like everyone else in the house (ok…maybe not just like everyone else…he actually does his much better many times than his brother!!), I am sending him the message, “You matter as much as your brother and are an equal member of this family” and I am showing his brother equity and fairness by saying, “We are all capable of contributing in the ways we can to this household–A2 is no different”.

I am not a mean mom (most of the time). I like to think of myself as the same kind of mom who makes her sick kid take icky medicine when he doesn’t want to, knowing it will make him feel much better. Not giving the medication makes me feel better because it is easier and I don’t have to see him cry. At least in the moment.

Chores are a pain in the butt. I DEFINITELY have chores I will still whine through, procrastinate doing or forgo altogether. While being an extremely Type A personality and capable of high levels of organization, I am also extremely messy and it happens FAST! I do remember how this unfortunate dichotomy affected college room mates, though at the time, I absolutely did not see the impact. I had to learn that the hard way.

One of my current chores is digging up the patience and consistency to make sure I am teaching A2 how to put his plate in the sink, start his laundry, or wipe down the counter. These tasks are the insurance plan for a future that probably will not include me. As scary as that is to consider, I certainly hope one day it is because he looks at me and in the most apraxic adult way possible says,

“Mom, I don’t want to live with you and Dad anymore. Don’t worry, I have already cleaned up my room and packed my suitcase.”

Random Acts of Dignity: The Ultimate Advocacy for My Disabled Child

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Dear Donna, Cashier at Wendy’s,

My 10 year old and I stopped in for lunch today on your shift. I could see after you asked him how he was doing today that his jumbled answer might have caught you off guard. You shifted your eyes to me and then back to him as he continued…something that happens all the time in our world. So I looked down at him and as his 24/7 speech and language coach I said “You can say, ‘I’m good!'”.

But then you caught me off guard. Instead of looking to me for his order, you asked him.

He answered you.

You leaned in and said “I think you said you want a cup of water. Is that right?”

He nodded.

“Aren’t you getting anything to eat?! What else?”

After he excitedly spit out a string of jargon you asked him to slow down and try again. So he did.

“Fuhweyes” he said.

What size?” you asked.

Mee-yum.

Great….anything else?” she asked, glancing quickly in my direction.

I shook my head as my son clearly said, “Nope!”

What you didn’t know as we held up the line is that my son has Childhood Apraxia of Speech, but the name of his disorder didn’t matter to you. What mattered to you was making sure you got his order right.

You didn’t “let” him be an equal patron at your restaurant…he just was.

You let him be his own expert.

You presumed competence. Not your version of competence, his.

You allowed him the dignity of time.

You asked him his name to put on the screen for his order just like everyone else and checked out to see if you said it right. You even asked him if he knew how to spell it for you. So he did.

Through this act I am certain you are not expecting a newspaper article or local talk show segment. You weren’t trying to be noticed or given kudos or wanting to be called a hero because you took a moment and tried a little harder. You wanted a 10 year old at your counter to order lunch just like any other 10-year-old might on a Friday afternoon.

Advocacy and inclusion are tricky things. When they come from a place of equality, empathy and understanding they are wonderful things. When it lacks authenticity, it can still have a place but can also be humiliating and damaging to an already fledgling movement. By “letting” my child be prom king, shoot the last basket in the last 10 minutes in the last game of the season, by being so kind as to “be his friend” , well meaning people are inadvertently continuing to marginalize him. No one has assumed that he was worthy of the crown on his own, able to make that basket without help or that maybe he makes one heck of an awesome friend and that perhaps HE is the kind one.

So you, Donna your authentic advocacy is the kind that will change the way we as a society deal with disability. Thank you for lunch with a side of hope.

Sincerely,
A2’s Mom