"That Mom"

What if someone asked you to answer the question "What is your favorite color?" without using any speech and without moving your body?

Unless you managed to find a really creative and innovative method, you would probably remain silent.

What if your silence led that person to conclude that you didn't understand the question or you must not know your colors? What if that person then spent the next 2 months teaching you colors when you already knew them?

What if there was no tangible evidence of what you know and what you don't know, so assumptions were made about your intellect, you are treated accordingly, and that information was used to plan your entire future?

What if they were dead wrong in their assumptions?

Imagine this -

You have a student who has only been in self-contained classes during their entire education.

No inclusion, no exposure to general education curriculum.

No one has ever attempted to teach the student to read or perform basic math operations because it is assumed he is incapable.

Every year, his IEP goals focus on pre-academic skills, as well as self-care, vocational, and life-skills.

Since the age of 2, he has spent most of every day of the school year with other students who have significant disabilities.

He does not have the assistive technology (including augmentative communication) that he needs in order to demonstrate what he knows or how he feels or what he thinks or if he's hurt or happy or sad or anything at all.

Do we really, truly have any idea what this student is capable of?

 

It grieves me that I did not fight for inclusion for Alex when he was young. I did not push back on his competence and programming being structured around his inability to communicate what he knows,

I don't think I'll ever forgive myself for such a life-changing mistake.

I know that I cannot change the past.

I know that for the last three years we have been advocating and questioning and suggesting and collaborating and pushing back when necessary.

I know that we have been blessed with several team members who believe in him, want the best for him, focus on what he CAN do, and provide the proper supports to help him succeed.

I know that during this past school year he was prepared to successfully work at Whole Hog Café, and he has been successfully working at Harps.

I know that he has been able to accomplish more than anyone would have ever imagined possible.

I know he will continue to shatter assumptions.

And, if you are reading this, I know that you called me "that mom".

I know that you believe our efforts to be "fruitless". "Ridiculous". "Unrealistic."

I agree with you.

On one thing.

I am "that mom".

Overbearing. Overinvolved. Always questioning those supporting and caring for her child. Always writing lengthy emails. Always checking in. Always clarifying. Always advocating.

And I will continue to do that with a ferocity that no amount of judgment, looks, gossip, or words will deter.

I will not ever stop being present in his life, holding space, loving him, accepting him, embracing him, learning from him, cheering him on, helping him create opportunities that don’t exist currently. Proving people wrong.

I am not a bit concerned about the people who think I am over the top or the people who feel annoyed or inconvenienced by my emails or questions or advocacy.

What I am concerned with is how I respond in our most critical, challenging moments. And we both know there have been many.

I am concerned about the moments I refuse to take a backseat.

I am concerned with endlessly seeking ways to get his needs met and prepare him for his future.

You see, you probably haven't even considered this, but my son was among the first wave of children diagnosed with autism.

He didn’t have access to the research-based, autism-specific interventions currently in place for those diagnosed in their toddler, preschool, and elementary years.

He received a diagnosis, a whole lot of head-scratching, and even more “I don’t knows".

We've had to figure out a whole lot on our own. We've had to work really hard to get where we are, and I have no intention of trying to appease those who don’t understand or would rather take the easy road.

Apparently, you also asked "What else does she want?".

I'm happy to tell you.

I want to lie down at night with peace of mind knowing everything is in place for Alex to live a meaningful life that brings him joy if I don't wake up in the morning.

I want every. single. person. on his team to presume him competent.

I want high expectations for him.

I want the focus to be on what he CAN do.

I want to work as a team to increase his abilities.

I want you to pause and consider some things the next time you encounter “that” Mother ...

I encourage you to see the person who is losing sleep, worrying, wiping away tears, organizing, planning, and advocating for support.

I encourage you to consider that although you might only see a Mother who appears hard, unrelenting, anxious, and in constant contact...

She might be broken.

She might be paralyzed by fear more often than you could ever imagine.

Second-guessing each time she makes the decision to reach out. Again.

Exhausted.

Misunderstood.

I’d like you to consider how you might parent your child if the tables were turned.

Consider what kind of person you want to be.

What kind of contribution do you want to make?

We get to choose.

We decide whether we want to be part of the problem or part of the solution.

And the starting point?

Do what you know to be right. When it’s easy and especially when it’s hard.

Listen. Hear. Suspend judgment. Connect. Be gentle. Be kind. Accept. Include.

Always presume competence. Raise the bar high. Believe anything is possible.

Then believe even more.