I Hid My Daughter’s Diagnosis For Seven Years

“It’s the imperfections that make something beautiful, that’s what makes it different and unique from everything else.” -Bob Ross

Okay,  maybe not hid. Hid implies I never told a soul; but grossly-misled and dismissed was too wordy for a title. I was never embarrassed or ashamed of my daughter’s diagnosis. It wasn’t that I “didn’t believe in the science.” Maybe I just thought I could burry my head in the sand and ride out autism.

Just a moment, a lot of our friends and family had to re-read that last sentence.  I’m not sure I’ve ever said it aloud, to anyone. She’s quirky, she has sensory issues, she has autistic-like qualities, now those, I’ve said.

I’ve been a single mother since my daughter was 19 months. To say those early years were tough is an understatement. But it wasn’t just “normal” tough, it was atypical. But, I had no idea why. We just clashed on absolutely everything! If two people should never be stuck in a room together, it was us. And, that my friends, is a direct quote I’ve uttered most of her life.

What five year old gets sent to the Principal’s office on the FIRST day? Mine. And, then again on the second day? How about the entire first week? They were learning what I knew, you couldn’t time-out or paddle it out of her, whatever “it” was. We didn’t get too far into Kindergarten before the idea of testing her for ADHD and autism was deemed necessary by the school.

Sure, sure, just add my baby to the growing list of problem children you’re just trying to dope up and keep out of your hair.

You know, those type of ignorant, angry, gut reactions. I had them all.  In fact, it would be two more years before I decided to medicate her for the ADHD. Natural methods were no longer effective and it was becoming detrimental to her and her classmates’ learning. But, we still aren’t talking about “the other” diagnosis.

A three inch stack of parent and teacher questionnaires, medical records, counselor notes and personal character testimonies all broke down to one sentence; likely probable for autism. (Why It’s Harder for Girls to Get an Autism Diagnosis)

I cried hysterically when I reached the privacy of my car but not for the reason you think. I couldn’t shake the statement from one of her preschool teachers that had been interviewed. She was afraid of my daughter. Not afraid FOR her, OF her. She had been afraid of my three year old.

Throughout my own childhood, well into adulthood, I have been very dismissive of my own grief, pain, problems etc. because “people have it worse.” It was this very same pattern that led me to sweep her “likely probable” diagnosis under the rug. The popular saying is that if you meet one person with autism, then you’ve met one person with autism. The autism spectrum is extremely broad, bringing unique capabilities and challenges with each child.

Since my daughter could hold a conversation and would one day hold down a job then we must not belong in any of the support groups or fundraisers because she wasn’t “autistic enough,” right? Even the school had stated that they could use the ADHD diagnosis to get her all the extra help, such as, occupational therapy, an IEP (individualized education plan) and a BIP (behavioral intervention plan). They said they didn’t need to double label her and have it carry throughout her schooling. This reaffirmed my stance on sweeping it under the rug.

So why say something now? Because, it took this long to find my voice. Because, it took finding parents with similar children and sharing their quirky stories for me to get it. It was something I had denied us both.

Over the years, my biggest parenting hurdle was letting go of my rigidity. I had to strip myself of ego when in came to being her mother. I couldn’t be the type of parent I had planned. I had to find a way to be the type of parent she needed. I failed her in many ways in those early years. It took awhile, but our relationship has strengthened this past year.  I must let go of my expectations and plans. We now create and forge ahead together, side by side.

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“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” -Paul Collins

________

In no way was the article meant to belittle or downplay the school’s involvement in my daughter’s education or therapy. I could never thank her primary school enough for getting me to the table and discovering what my daughter needed. They genuinely loved her and nurtured her with tremendous patience and joy. They were ready for her when I was not.

Featured imagine: Brandi Hoffman

In article imagine: Megan R. Buck (author)  Critchlow Alligator Sanctuary

 

 

7 thoughts on “I Hid My Daughter’s Diagnosis For Seven Years

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