Seeing the Words Severe Intellectual Disability

Intellectual Disability. Severe. With language impairment. Non-verbal. Limited functional language.

It was a mouthful.

We weren’t to the end of the meeting yet. You know the part where you learn the diagnosis. We had just started on the 25 page document.

I skipped ahead though and read the words. I wanted to know the results of his IQ test. I saw the number.

Suddenly, I felt a ringing in my ears. The therapist was talking. I could see her lips moving. However, I could not quite hear her.

I was trying to hard not to cry. Or scream.

I didn’t know much about IQ’s but I knew this wasn’t good.

Does he really need intellectual impairment on top of his severe nonverbal autism diagnosis? This feels like a slap in the face honestly. It feels like insult to injury.

I read through it again. From start to finish.

Autism Spectrum Disorder, Level 3 requiring very substantial support with social communication and social interaction; Level 3 requiring very substantial support with restricted, repetitive behaviors; with accompanying intellectual impairment. Intellectual disability severe. With accompanying language impairment. Non-verbal, limited functional and spontaneous language using a speech augmented device.

None of it surprised me really. But good God. Seeing it all together.

How can all of this be about my son? He’s only seven. He’s just a little boy.

It doesn’t even take that many words to describe me.

Kate. Mother to Cooper and Sawyer. Pregnant with baby number three. Wife. Senior Manager of Business Development at PBS. Homeowner. Dog owner. Writer. Eternal optimist. Stubborn.

That about sums it up.

And yet, this little human, has a label a paragraph long. And it doesn’t even describe who he is. Not really. This label said nothing about how he loves to dance. Or has the best laugh. Or about how he is obsessed with trains. And me. It doesn’t mention how he is learning to spell.

These words aren’t my kid. They don’t define him. He isn’t just autism. We don’t think of him that way. But here we are again. Like we have been a hundred times before. Reading a report about him like he is someone else’s kid.

Jamie kicked me from under the table. The therapist was still talking and I wasn’t listening.

To be honest, I didn’t want too. I hate these meetings. It’s no ones fault. And I love Cooper’s team. I’m just over them. They hurt my heart. They make me tired. Because I know that I will carry the words into the evening. Long after I put Cooper to bed I will stare at his face and wonder why his life has to be so damn hard.

I came back to reality.

Vineland scores. Behavior Assessment scores. Gilliam Autism Rating Scale. Strengths and Difficulties Questionnaire. Child and Adolescent Service Intensity Instrument. The Wechsler Nonverbal Scale of Ability.

Good God. This thing was a novel.

Same answer for every test. Severe autism. Do we really need all of these tests to tell me the same result?

None of this surprised me. I’ve known Cooper was autistic since he was a baby. I’ve known he was nonverbal since he was a year old. And the severe part…well, that was a little more shocking. But I’ve gotten used to it all.

I like to say we’ve settled into autism. But…I still don’t want to read about it or hear about it like this. I want to focus on his strengths. His future. This feels wrong. It feels negative.

As she neared the diagnosis page, I started to get visibly annoyed. I was shifting around in my seat. Fidgeting. I knew she was going to talk about his IQ test. I didn’t want her to say the score out loud. That would make it real.

To be honest, who decided to do an IQ test in the first place. Really?

She acknowledge that these words don’t take into account how amazing he is. Or how far he has come. She was sugarcoating it. I am an expert in it. I do it daily.

56

I put on my best fake smile. I had too. I just wanted this to be over.

I wanted to go get my kid. I wanted to hug him and tell him that I am sorry. Sorry that people were talking about him like this. I wanted to run away with him. And leave this all behind.

But instead, I just nodded. I hear her say this means he now has another diagnosis. That makes three in total. I hear her say that this gives the state and the county an accurate representation of him. The smile was plastered on my face.

I know that many of you are going to tell me that these tests don’t matter. Neither does the diagnosis.

And I agree with you. Trust me. My head knows that. But trying to tell my heart that is another story. With each diagnosis comes more worry. More confirmation of fears.

We tell ourselves our kid just had a bad test. Or didn’t understand the test. Or that standardized tests are a joke.

And that all may be true. But, the bottom line is…my son is intellectually impaired. He is nonverbal. He is autistic. His future is unknown. And now we have the piece of paper to prove it.

And yet, it’s not supposed to matter.

But, sometimes, at night, when I am alone, it does matter. I feel it. I feel the weight of his future on my shoulders. The weight of his disability and delays. I feel the labels.  They are another thing my child will hopefully overcome. And good God people do I hope.

But we all know, as special needs parents, that sometimes our babies won’t overcome these labels. These labels are right. And they will have them for the rest of their lives.

That night I held him extra tight. We worked on spelling, using a fork, putting on pajamas and the ‘m’ sound. I was rock solid in his eyes. I never faltered. I never will.

After I put him to bed though I let myself google. I had too. It’s silly but I did it anyways. IQ of 56. The first result took my breath away. I felt it in my stomach. What in the actual hell? Outdated words on my computer screen.

I closed my computer screen. And I allowed myself one night to grieve. One night only. I let myself jump into the rabbit hole.

Because, while I know it’s not supposed to matter, hearing that your child has another diagnosis is really hard. And while I pray every day that he shatters these stigmas, I don’t know if he ever will.

But we sure are going to try. We aren’t giving up.

I know I’m supposed to be energized. I’m supposed to rise up. And I will.

But first, I needed to take a moment to let reality wash over me. The mountain feels a little bit higher right now. The climb looks a little harder. The future looks a little scarier. And sometimes, it’s okay to acknowledge that.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Comments

  • Lindsey

    June 4, 2018 at 10:17 pm
    Reply

    Oh Kate, thanks for sharing your heart. The hard days hurt. You're a good Mom.

  • Jill

    June 5, 2018 at 3:02 pm
    Reply

    I know it hurts. But think about how many of these you've been through. It always feels overwhelming at first. And you […] Read MoreI know it hurts. But think about how many of these you've been through. It always feels overwhelming at first. And you keep going. And eventually it just becomes part of your life. You are a talented writer, a beautiful person and an incredible mom. Keep your head high. Read Less

  • Carmen

    June 5, 2018 at 7:33 pm
    Reply

    Oh gosh. I don’t want to say the wrong thing. But I can’t help but think about our generations past who didn’t have access to […] Read MoreOh gosh. I don’t want to say the wrong thing. But I can’t help but think about our generations past who didn’t have access to these tests , labels, diagnosies, labs, scores oh my! They had a beautiful little autistic or delayed or disabled boy or girl and were raising them thinking “oh that’s just Johnny’s way” or “Mary doesn’t have the ability to have a family but we can be the family she’ll never have” One family comes to mind that never knew about autism (the boys are both in their 40s now) and I was just the other day sitting next to the mother as the (adult) boy brought her a big bagel with a half a stick of butter on it. Way too much butter lol- It’s dripping everywhere and she says “oh honey, I do love me some butter thank you!!” They believe he has a a few learning disabilities but it’s more. But oh well. It really doesn’t change anything for them. It doesn’t change anything at this point. I don’t know when she realized this was forever, or when she realized it was going to be more “severe” than she thought, but I know one thing: the love she experienced with her son at that moment doesn’t have a label or a diagnosis or a score. It really doesn’t. I try to remember this with my son. I think at your point it does change your hopes bc it’s a process to go through each meeting with new information and Cooper is very young, much younger than parents in the past had to endure the information. Prayers to you Kate, you are an incredible mother. 💝 Read Less

  • Christine

    June 5, 2018 at 9:42 pm
    Reply

    I hear you sister. I hear you.

  • Phyllis Smith

    November 10, 2018 at 1:35 pm
    Reply

    How do they test a severely autistic child? If I remember correctly children with a IQ of 56 don’t potty train, can’t spell, and several […] Read MoreHow do they test a severely autistic child? If I remember correctly children with a IQ of 56 don’t potty train, can’t spell, and several other things. Cooper does these things and more. I am not a developmental psyche but I just don’t believe that score. Maybe it’s a error! When will they retest him. You are the best and Cooper is so lucky to be his Mother and advocate! You are both very blessed to have each other ! Read Less

  • Valerie

    November 11, 2018 at 5:32 pm
    Reply

    ♥️

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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