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Celebrating My Son With Down Syndrome as He Finishes School

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I’m writing this because I want to celebrate my son, Andrew, AJ for short, who was born with Down syndrome and left public school on June 12. But it is with mixed emotions that I share this.

Here’s a picture of the adorable little man in his red cap and gown (well the cap was white in preschool and he kept taking it off!). And above is one of the young gentleman looking like the little professor, trying on his cap and gown for the end of his school career.

AJ as a young child in cap and gown.

I want to tell you about this journey, mainly so you do better and don’t suffer so much. The first time the school district broke my heart was 18 years ago when they told us the same old lies we see other families being handed today in our disability support groups. It would happen countless times after that.

“He needs to gain skills before he’s included in gen ed. Let’s start him in a segregated class.” As if he needed somehow to qualify for rights that are provided for at the federal and humanitarian level, if you get right down to it. If you have a child with a disability, you are familiar. But if you know the law, this notion is the opposite of what the Individuals with Disabilities Education Act (IDEA) states about access to non-disabled peers, and it is anathema to all research on the subject, as well as our knowledge that Andrew imitates the behavior modeled around him. His communication skills suffered. Access to his non-disabled peers was denied for most of his educational life, and the results now show this unfortunate and misguided (I use much stronger language like disgraceful and heinous in my everyday responses to them, but I don’t want to turn you, kind folks, off reading) decision by a recalcitrant school system.

But the schools said he couldn’t handle gen ed when they brought him to a first-grade reading circle with a group of kids he didn’t know and a teacher who never met him, and left him there alone. Such logic and deliberate gaslighting is the name of the game for the school. “He couldn’t sit down and pay attention,” they said.

As if any 3-year-old could.

Oh, and then there was the time the teacher said they couldn’t teach him to toilet train. That made me mad, so when he was 4, on spring break, we cheered and clapped and celebrated every time he went, and the next week, he went to school trained and happy. He rarely had an accident after that.

Here’s my unvarnished truth: liars and incompetent teachers say these things. We fell for it out of protective instincts, because they scare you, I guess. But you see, the lies, they are insidious. As the years go by, any kid may develop some other diagnosis, as ours did in elementary school with autism. And then I faced the worst time of my life when a negligent doctor eye specialist disregarded my three urgent visits regarding something wrong with his eye, and let my son go blind in one eye.

Schools will use any excuse to discriminate. Any excuse. They really do not care about your kids if they recommend not including them. End of story. The whole sham is to protect their fake “special” education jobs at the expense of a kid’s future. If they think this is true, then they believe separate is equal. And this is NEVER true.

But, to continue my story, as I faced this unimaginable personal crisis, struggling with depression and anxiety and desperate, hopeless falling dreams — at my weakest moment, the school swooped in and insisted Andrew needed the more “intensive support” of an autistic classroom, which on the face of it is just more segregation, separation, mistruths, and exclusion from his non-disabled peers. So many tears.

And then the years yawned on, and the gap got wider and the predictable fights they set us up for got more contentious and the battles lost piled up so high until I was drowning in regrets, bitterness, and paperwork.

But they persisted, inventing new tortures and contorted logic to separate him and isolate us. Every time he had the smallest chance to be included, he proved them wrong. EVERY time. But instead of including him, as the law provides and demands, they taught every non-disabled kid and future leader in school for 18 years to exclude my son and your disabled child because that’s what they saw demonstrated. The systemic discrimination is amazing. As was the realization during COVID that all kids were suddenly experiencing what it feels like to be isolated, as AJ has been. It’s been enlightening, but I don’t know that the lesson has permeated the dark halls of archaic educational “norms” in this country. It’s unjust, and the solutions are so available, and some even simple, it is sickening. Instead, they put parents like us through such burdensome trials, it is no wonder the divorce rate is so astronomical for parents of children with disabilities. The toll is incalculable. The broken school system makes a challenging situation catastrophic and perpetuates discriminatory behavior in our young citizens.

Alas, here we are at “graduation,” and this young man, who I adore to the depths of my soul, will be having his last class. No diploma or Occupational Course of Study (OCS) certificate to show for it, but I guess they are handing him a certificate of attendance, and well, it is incredible he survived their vagaries. Do you know, without a diploma or OCS certificate, the school system that claims to have (and failed to) educate him would not hire him for any position? Irony, right?

But you know what else? We are celebrating, because he is amazing. He is funny and creative and kind and teaches us more about unconditional love with his wise and wonderful outlook every day.

And I am also celebrating leaving a wretched discriminatory school system and its leaders and teachers, who inexplicably hated my beautiful son before they even met him — because they are discriminatory. I should never have entrusted him to them. He will go far now that he is free from their prison of tiny minded-ness, and now that I am not stressed out and in constant recovery from 18 years of grief-and-heartache-inducing bruising, exhausting, fruitless battles that always landed on his shoulders. I want better for your kids, and so I say to any parent of any child — please do not fall for the gaslighting and the lies. Be proud of your children and ignore the naysayers.

Don’t be me, all full of regret at my inadequacy after truly fighting the good fight. Don’t let them turn you into the nervous wreck I was for many years, sobbing my eyes out after every heart-wrenching, mentally exhausting IEP meeting. For the uninitiated, this is an acronym for the at least annual Individualized Education Program meeting — a figurative knife fight disguised as an annual check on progress. Parents are advised to bring cookies to share for a pleasant chat, but soon realize they must be legal, educational, medical, and therapeutic experts to navigate arcane jargon, surprise attacks, and shifting sands on the playing (battle) field to crawl out with their wounded lives. Each time the gang of school representatives would gather to intimidate us and say really awful, untrue things about my precious, well-behaved, smart, adorable son, the wounds deepened. Don’t burden yourself with this guilt at being such a failure as a mother and advocate.

My best advice: Get a lawyer. Any inroad these people make is a scar you will carry forever. Andrew is gonna do great, in spite of me and them, but wow, the wasted years. Just don’t be me.

I’m gearing up to make it good and am moving on to the next mountain to create opportunities for people like my son. I founded a disability group at my wonderful company and am helping to advocate for diversity, equity, and inclusion for many now.

Finally, congratulations to my heart, my Andrew. I love you to the moon and you will reach for the stars!

Originally published: January 6, 2022
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