I Think I Checked The Wrong Box | Raw Thoughts About Intellectual Disability 

“Do you want to teach kids with Learning Disabilities or Mental Retardation?” I was an 18-year-old at Freshman Orientation. I had just added a Special Education emphasis to my Elementary Education coursework. It would add close to 25 extra hours, but I knew I wanted to become a Special Education teacher. I just had no idea which kind. I hadn’t thought that much about it. I had lots of experience with learning disabilities. But I had some experience with complex medical needs and mental retardation. I looked at the boxes and just checked one. It took 15 seconds. 

At Adelaide’s IEP meeting in the Fall, I asked for additional testing. Dave and I wanted to ensure that Adelaide ended up in the right placement for kindergarten in 2017. I’ve had lots of experience with IEP meetings, evaluations, and progress reports. It’s different when it’s your own child. Everything feels slightly fuzzy. I wanted some hard numbers on Adelaide, not just how I feel things go at home. It’s difficult to assess a nonverbal child, but I signed off on the district doing what it could. 

I filled out some different assessments at home. Ones I had only done as a teacher. Checking the parent box this time around. I cried. Even without knowing the percentiles, I knew the raw scores were already low. 

I sat at the meeting and got my first glimpse of Adelaide’s results. I knew what each subscore meant. I knew what the language meant. I knew that I had been right. Adelaide needed a completely self-contained kindergarten class. It wasn’t just a hunch. It was fact. I saw Intellectually Disabled and knew it was basically the new term for Mental Retardation. The box I didn’t check in college. 

Back before 9/11 or meeting her husband or being old enough to drink, a childless teenager checked the Learning Disabilities box. Altering my 4 1/2 years of college. And I don’t know if I checked the right box. 

I’m the mother of a child who scored lower than any student I ever worked with. I’m inexperienced in all of this. Everything I did with Intellectually Disabled children was volunteer work as an assistant. 

The person delivering the new testing information almost whispered the words Intellectually Disabled. I think we all hoped there was a mistake somewhere. But the truth was there. Adelaide uses very few words and signs meaningfully. She drinks from a bottle. She loves BabyFirst TV and other toddler shows. She doesn’t play with toys, but chews on them. She doesn’t enjoy big kid books. 

I was sitting there, feeding her Cheerios, realizing that this could be it. The neuro team mentioned plateauing. “One day, Adelaide will start to level out.” She has already done so much more than her MRIs would suggest she’s capable of, but maybe we’re starting to see Adelaide doing her best. 

Or she could surprise everyone and use a communication device to tell us paragraphs. She could learn to read. We have no idea.

But, at least for now, we’re working on adaptive skills. Learning to use a cup or straw. Possibly potty-training on a schedule. Completing two piece puzzles. Stacking blocks. Identifying colors and objects. 

I loved teaching the classes I did for those five years before birthing Graham, but I sometimes lie awake at night thinking about that one box. How I could help Adelaide now if I had a background in her disability. Why didn’t I choose Mental Retardation? Or why didn’t I add the 12 hours of night school to get my Speech training? My advisor practically begged me to do it, but my scholarships wouldn’t cover it and I was working 40 hours a week. How would I keep my job? I should’ve made it work.

I use what I learned in my elementary education classes to teach Graham, but maybe I should’ve studied something else. Physical therapy or occupational therapy or a hundred other things that would help me help my own daughter. Or maybe even something that I could do now from home to make money. Accounting, editing, copywriting, and on and on and on. Being a single income family has its difficulties. I literally bring no money to our family finances. Because I have no marketable skills. 

I obviously can’t change anything about my Bachelor’s degree. And I can’t change Adelaide’s brain. The scores don’t change Adelaide’s worth at all. They are just numbers. And I have a transcript full of classes I never use. May never use again. We’ve always known it was unlikely Adelaide would live on her own. She’s our lifelong roommate. We’re slowly preparing for that reality.

Dave says I ramble. I think it helps me process everything. These thoughts and tears are just mine to deal with…not even sure why I’m typing them here. They are part of my special needs mom journey. I just wish I would’ve prepared better for all of this. Since I can’t, I eat some ice cream and binge watch Megan Follows and Jonathan Crombie as Anne and Gil and then cry in the shower. 

Advertisements
Tagged , ,

3 thoughts on “I Think I Checked The Wrong Box | Raw Thoughts About Intellectual Disability 

  1. Your daughter is beautiful. I have felt the same way. Yes, in slightly different circumstances. My daughter was born and I enjoyed being a mom. My son was born and we knew something just want right. We were in speech therapy at age 3. I have a degree in communicative disorders- I so wished at that time that I focused more on children and at a school setting- I focused on audiology. I toyed with the idea of going for my masters in occupational therapy but choose to start a family. Then I took my son to Occupational therapy for 5 years. I agree those IEP meetings can be hard when you have that little extra knowledge of what all this means. Your children are beautiful and you are an amazing mother to them all.

    Like

  2. All I can say is, wow. This is such a powerful essay on hard things and the triumph of love. Adelaide is so clearly your treasure…I’m in awe.

    Thank you so much for writing this. I was an am a professional Tough Guy, and you brought tears to my eyes.

    Like

  3. Rachelle says:

    This hit me right in the guts. My daughter Katherine is intellectually disabled. Prior to her birth 5 years ago, I ran a group home for adults with intellectual disabilities. It makes it harder having backgrounds like our sometimes, because as Katherine began various assessments, evaluations and tests I had all the same thoughts you had. “I already know the answer”. Or, “if I had more training in X, maybe it would have helped?”

    And it’s kind of a lonely place sometimes. My husband is kind of…Pollyanna-ish when it comes to her intellectual abilities? But I know full well what to expect because of my former career. I’m okay with this, she’s still mine and she’s still a human being with the full dignity and worth that God imparted upon her when he made her in His image. And yet, I often feel like the only one who is really down in the trenches with her diagnosis, because I’m the only one who is dialed in to the reality of her future. Sometimes I feel like a cynic and a jerk, trying to kill everyone’s joy and hope for our daughter’s future. And sometimes I just get downright angry that nobody else seems to see the writing on the wall.

    I guess my point is, the education and career background in special education or social services is a double-edged sword. It can be enlightening, but that’s not always a comfort.

    Like

Please Share Your Thoughts

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: