It’s World Down Syndrome Day; and I hope your social media feed is chockablock full of posts celebrating these marvelous humans. You’re missing something in your life if it isn’t. For the parents, it’s not only a day to celebrate our kids, but to also look up from the grinding work of advocacy at the family level and simply be grateful that we have each other and the support system of family and tribe that makes the load a little lighter.

One of the not-at-all fun things we get to do every year for Julia is the dreaded Individualized Education Plan (IEP) at her school. If you are a long time reader of my blog, you’ll know we’ve had complicated moments in these brushes with the “special education industrial complex” – as do most parents of kids with special needs.

For many, it’s a perplexing slugfest between the parents and the school district, punctuated by a mind numbing array of abbreviations. I’ll spare you the explanations as many of you would likely move on in frustration – I have certainly wanted to. But a few of them include MET, REED, FAPE, and (my personal favorite) PLAAFP – the “Present Level of Academic Achievement and Functional Performance” which better describes the sound of half-melted ice cream cake thrown against a wall.

I’ve seen social media posts from moms and dads across the country asking for prayers and good thoughts as they go into their IEP meetings. They have done untold hours of research, properly caffeinated, donned their “Advocate Like a Mother” t-shirts and go in like a gladiator entering combat.

Some return with (reasonably) satisfying outcomes borne out of longtime relationships of goodwill with their districts. Others come back perplexed and emotionally drained after another encounter with school administrations stubbornly clinging to decades-old teaching models that value expediency for the majority of students at the expense of the vulnerable.

Even the gains we had seen in years past feel like they’re starting to ebb. Jocelyn and I are regularly hearing stories from parents in local districts that were making encouraging strides who are now ready to move to other communities as their quest for fuller inclusion gets harder and harder. The stories are scary, and have us wondering:

The law and the research (here, here and here, just as a survey) are on “our side” – that is the side of inclusion. And those years of research also demonstrate the benefits of inclusion go beyond the student with the disability, but positively impact all students. What is really going on?

I suppose that’s a subject for another post. Believe me – it’s multi-layered and there’s a lot of money and a very broken political system involved.

Our first IEP meeting was eight years ago and left us utterly bewildered and hurt by a seemingly uncaring bureaucracy that sought to railroad Julia into a learning environment that would have been efficient and cost effective for the district, but would never have given her the opportunity to grow into her fullest potential. The aftermath was a good cry and then a lot of work to get Julia in the general education classroom where she needed to be. I’ll leave the details for further reading; but Julia has been included in the life of her home elementary school ever since.

We have since had the good fortune of a growing collaboration with the team of educators and therapists who support our kid. But even the best IEP meetings are tough on the parents – especially during the re-qualification for special education services that the law requires every three years. That’s right. Julia’s genetics and attendant challenges don’t change, but the case has to be made that she is still “disabled” and therefore still eligible for services. That requires detailed testing (another load of technical terms) and putting Julia’s academic and cognitive performance in rank order with her typical peers.

It’s kind of a “little death” that we and so many other parents experience, seeing the ever-widening academic gap between Julia and the friends who love her – especially when it feels so analyzed, categorized, and data driven.

Things seemed to be going so well as she began preschool and even into first grade when the gap between Julia and her peers wasn’t so wide. At times, I had actually lulled myself into believing that Julia could be some kind of “exception” and, though behind, she might actually keep some kind of pace with her friends.

The wake up call began in second grade, when her classroom teacher (whom we still love to this day) shared that Julia really wasn’t following the classroom curriculum any more. She needed more time to grasp basic skills and concepts and required more one on one interaction and practice. It was then that I had to come to terms with the reality that Julia was running her own race – even as it felt like she was being left in the dust.

This year, the evaluation data showed a similar, emotionally crushing trend. Let me pause briefly and state that her support team is still fantastic; but compliance to the law requires them to do the unpleasant task of bearing seemingly bad news. So we dutifully stepped through the realities of a reading assessment, spelling inventory, cognitive assessments, number sense screening, speech articulation assessment and myriad others to get a full picture of where Julia was in relation to her typical peers.

I’m glad we got the report in advance. It took time and emotional capital to take it all in. I personally needed breaks even after I gutted up the initiative to open the file. All of it would have put me in a funk for who knows how long, were it not for an observation made by her social worker as Julia was on the swings with a friend in early November:

It still brings tears to my eyes when I read it. For all of her delays, there’s some really, really important stuff where she’s in the 99th percentile of her class.

She noticed the suffering of another human being.

She stopped the fun thing she was doing.

She ran to the suffering.

She comforted with words and touch.

And (perhaps most important) she led the community in an act of consolation…

…and everyone (the social worker included, I’ll wager) moved just a little closer toward what is best in humanity.

And in that report of where Julia academically ranked with everyone else, a strange and marvelous inversion happened where “the data” bore out both the uncomfortable AND the glorious realities of this remarkable young woman that we get to do life with.

Undergoing the “little deaths” that we do as we pretty regularly witness the widening gaps between Julia and her community in so many domains, Jocelyn and I cling to a story like this. A story where Julia took the initiative to lead in her strengths and have her community actually follow. And it resonates with the comments we hear from parents and teachers of her charisma and leadership that can honestly make us wryly respond, “Our daughter?”.

No. That truly is our daughter.

Reading? We’ll bear with it. Writing? She’s pretty good on a keyboard. Math? She can use a calculator.

Kindness? We’ll take it. And celebrate it. All day long.

Because the world needs way, way more of it.

Thanks for reading – and Happy World Down Syndrome Day.