We Are All Worthy

kimberly 3

Erase the word.

Wouldn’t it be nice if it were that simple?

There are certain words that have such a negative impact.

Words that describe race, sexual orientation, substance abuse, and disabilities.

As a parent of a child with special needs, I want to talk about the stigma of the derogatory word used to describe people with mental disabilities and the word that is also used as slang to make fun of others, in reference to them being stupid.

I clearly remember sitting across from the psychologist as he was reading the results from my daughter’s most recent psychological testing. It was her three year evaluation where they do a full eval and everyone sits around the table to talk about her results while they give recommendations.

This is one of many things as a special needs parent that is so difficult to hear and read.

Listening to them refer to her level in ages.

It’s just tough to hear, so I brace myself and force a smile after all this is just a routine IEP.

I however, was not prepared for what was said next…

As the psychologist was rambling about spatial this, decoding that, my mind was wandering. I was thinking about my beautiful 7 year old girl and I was wondering what she was doing in class. Then my attention got diverted back as he went on to say her scores indicate “mental retardation”.

I was familiar with the term of course, but I had never had it said in reference to my daughter.

I felt like I was sucker punched.

I know obviously that my daughter is cognitively delayed, she is non verbal and her receptive language is weak, but developing.

At the same meeting, I was told my daughter would never talk or understand spoken word, only visuals.

I firmly disagreed.

I just stared across the table at him biting my lip to keep the tears from flowing. He looked visibly uncomfortable and went on to explain it was just the way the scoring is done.

He looked like he almost felt bad saying it.

I had to resist the urge to flip the table over and scream..”do not talk about my daughter this way”!

This is not my daughter.

She is bright, funny, mischievous and yes, challenging I will admit, but full of potential.

I felt sick. I could see her teacher giving me the slide glance as she thankfully piped in with her recommendations and some positive attributes.

I could barely hear her though, I just needed to get out of there. I cried all the way home. I honestly don’t know how I safely drove home, it was heart wrenching.

I have attended a lot of IEP meetings over the years and they mostly mesh together.

But that one I will never forget.

That word has such a negative stigma to it, so much so, that there was a campaign to permanently change it.

“The term “intellectual disability” is gradually replacing the term “mental retardation” nationwide. Advocates for individuals with intellectual disability have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it.”

The problem is, although that word makes me cringe and it had such a negative impact to it, it is just a word.

Which will be replaced by another word.

In fact , it already has the term “autistic” to replace it .

So kids now a days will say, “what are you autistic?” instead, and it is used as slang for insult.

Which is horrifying because now it singles out a specific diagnosis.

This is evident now as we have seen in recent Tik Tok challenges all over the internet.

The heart of the issue is not simply a word that shouldn’t be used. It is the attitude and over all assumption that special needs people are less than. That their lives are not as worthy as “typical people”.

Ironically today, I had an experience with a lady who came to look at the daycare that I run. In the midst of the conversation, autism came up and I told her that I had an autistic daughter.

She was talking about shots and her fear of them as her friend’s son was seemingly fine one day and autistic the next. She said point blank that he was completely fine, then all of a sudden, she jerked her head back and was shaking it around…she was acting out what it “looks like” to be “autistic”.

I just stared at her and my mouth would have dropped open if I wasn’t wearing a mask.

I couldn’t even speak, I was so stunned.

I am hardly ever at a loss of words but words failed me.

She went on to say it’s so hard and was mumbling something as I continued to stare at her. I cannot believe that an adult this day and age would do this.

Outwardly make fun of a disability.

Completely inaccurately I might add.

At a daycare.

To a professional who just told you they had a child with autism.

I have developed thick skin over the years. It didn’t hurt my heart the way it once would have, but I was in disbelief.

It is complete ignorance, and it starts at home.

We need to teach our typical children to do better. We need to educate and show our children to the world.

To be proud of them and not ashamed.

The thinking that any one group of people is better than the next is outdated, and simply untrue.

I don’t know what my thoughts would be if I didn’t have a child with special needs. I would like to think I would have grown and learned better.

I was catapulted into this world at 22 years old and my views changed fast .

I am ashamed to say when I was younger I had used that word as slang and never really thought twice about it.

Never towards a special needs individual but still distasteful.

When you know better you do better. Now we know better. In fact you rarely hear it come out of the mouth of the younger generation.

But they have a new one, and when that one fades out there will be another to replace it.

The more imperative message is that…

We are all worthy.

Everyone’s life has meaning and value.

My daughter lives her best life everyday. Her heart is pure. She doesn’t know evil, prejudice or hate. Her life is simple. She smiles and I swear light radiates through. Her laugh is the sweetest sound you will ever hear.

She is worthy. She is deserving of everything life has to offer. Yes, her life is off the beaten path. She is different but not less. If anything, she is more. Her soul is full of beauty and innocence.

It is up to us to stand up and protect her and others like her. To tell the world how imperfectly perfect they are.

To set an example. To give grace and to educate. To advocate for better for our kids and the generation coming up behind them.

It is not enough to just erase the word.

We have advocate, educate and enlighten others.

No more secret world of special needs. We will share the beauty, the joy and the challenges to show the world how deserving our kids are. They are deserving of dignity and respect, to be treated as equal and worthy.

We have come a long way, but still have so far go.

Written by, Kimberly McIsaac

Hi, my name is Kim. I am married with four children, one who is a young adult with non verbal autism. We live in Massachusetts and I work full time as a director of a daycare.  I have a Facebook page that follows the progress my daughter has made, while making transitions into the scary world of an adult with a disability. She has made incredible progress beginning with words coming at the age of twenty-one.  I want to spread awareness of severe autism while giving others hope as we ride this crazy autism roller coaster with all the joy and heartache that comes along with it. You can follow us at https://www.facebook.com/Autismadventureswithalyssa/

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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