If it’s Too Hard to BELIEVE Then Just Suspend Your Disbelief

[Hold on a minute while I climb back up onto my sturdy old soap box that’s mostly been collecting dust over there in the corner this summer.]

I have heard and read some very discouraging points of view lately. More, I think, than I’ve heard in the last seven years since My Boys came to grace our lives. These perspectives come from a variety of sources including parents who doubt their children can “get” academics, those who don’t think their children can “survive in a classroom with typically-developing children,” well-meaning folks who “know” that my kids would achieve much… then regaled me with tales of teaching high-school-aged kids life skills — “Your Boys will get this too” — like how to wipe their faces with a napkin (a skill My Boys mastered at least two years ago… and they’re seven!), and from special education attorneys who – though they’re representing parents fighting for inclusion – do not believe that inclusion works and are “privately” discussing on the Internet how, at some point, perhaps these parents would come to their senses and realize that “inclusion doesn’t work” but rather contained, few-to-one, special instruction is more effective… Taking this POV, rather than considering the notion that what we call “inclusion” today rarely includes the “appropriate support” required by law and which is the key to ensuring success. and that, yes, individualized instruction should be provided as one part of our children’s education, while being included (versus excluded or segregated from) in education, community and the workforce should be considered the norm! Can you say RESEARCH-BASED BEST PRACTICE PROVEN TO BE MORE EFFECTIVE WHEN IMPLEMENTED CORRECTLY!!!

While I am devastated by such talk, it re-ignites my not-so-secret wish to attend law school so there might be – at least in my little corner of the world – one special education attorney who BELIEVES in the kids and the possibilities… versus believing, deep-down, that we should all just give up and go back to the way things were!

This CANNOT happen for me… for My Boys! For any children with special needs or the people who love them!

My mantra has always been, “BELIEVE. No one knows the limitations of another!” After seeing all of these discouraging POVs, I’ve developed a tag-along-line:  “And, if you can’t BELIEVE then at least suspend your DISbelief until My Kids with Down Syndrome blow you away with all they achieve!”

There is a prophetic line in the film Men in Black — one of My Boys’ favorite movies – that is another underlying tenet that I live by daily! Trying to convince Agent J (Will Smith) to join MIB, Agent K (Tommy Lee Jones) says, “1,500 years ago, everybody knew that the earth was the center of the universe. 500 years ago, everybody knew that the earth was flat. And 15 minutes ago, you knew that people were alone on this planet. Imagine what we’ll know tomorrow.”

Less than fifty years ago, our kids were institutionalized, living their entire lives in captivity, away from society. Thirty years ago, we systematically segregated them from the general population for education. (In some places, like my little corner of the world, this antiquated practice is still encouraged for many children with special needs.) Fifteen years ago, research showed the significant and positive impact of Early Intervention on children with DS/special needs, and that practice is now widely implemented. Eight (plus) years ago federal laws were clarified/updated to support the research-based best practice of inclusion which results in better academic, social and emotional outcomes for people with disabilities. Imagine what we will discover, and what our kids with Down syndrome will achieve tomorrow… in ten and twenty years from now!

The beliefs of parents of children with special needs– or, sometimes, the suspension of disbelief — has helped us, and helps our kids every day, to realize extraordinary progress individually and in the special needs population overall. A friend working in public school system management recently shared with me that virtually “ALL of the positive changes that have happened in the special education arena in the last two decades have been driven by parents fighting for the rights of their children with special needs.” We may be taking baby steps folks, but we ARE moving in the right direction. And, forward momentum is all we need to be the parents that change the world for our kids, for every child with Down syndrome and for all children with special needs, going forward.

Sadly, it is often easier to look at the way things are now, the resistance to change we all face, and give up in anticipation that nothing will ever change. But, we cannot ignore what the research and case study after case study shows us works best just because it challenges our current, overly-ingrained practices. Our children will be back in institutions in short order if we allow society to take the easy road – versus the right or high road. We must IMAGINE a very different and positive future in order to ensure that the pendulum continues to swing in our children’s favor! We must believe that EVERYTHING IS POSSIBLE and not only seek that change but BE that change.

Hitler thought the world would be better off without people with disabilities so he killed them. It didn’t matter if they were born that way or became disabled during the course of their lives… They were useless. A drain on his perfect world! In the United States in the 1950s, we put people with disabilities in institutions — away from their families, away from their communities and away from society — under the guise that parents could not possibly provide the level of care needed and that their loved ones would be too great a burden on everyone involved. A drain on the family, the system. Today, too many general education teachers, school administrators and even the government see PEOPLE who were born with or developed special needs in much the same way. To quote My Boys K1 gen ed teacher, they’re “not my problem!” She saw My Boys as “a problem!” One she was not willing to accept… though the law says it’s her job to educate them. I see My beautiful, loving and capable Boys who need a little extra help academically, not Down syndrome! I see a man, my stepfather, who needs a ramp, not Cerebral Palsy! I see a boy, not autism… my son’s peer who is capable of learning and whose mother desperately wants him to be included but who has now been sent out of district because they “can’t deal with his behaviors!” Won’t! They saw only challenging behaviors — not the boy or his family — and an opportunity to be rid of it!

History has a way of repeating itself! We must push forward, carefully.

In the words of Mahatma Gandhi, we must “BE the change we want to see in the world.” We CANNOT stand idly by and we are NOT fighting this fight alone! There is support for our cause in history and in the laws, and there is power in numbers. We follow in the footsteps of our Civil Rights and Women’s Rights leaders. We are joined by all of the parents of exceptional children who have fought for the equal rights and equal opportunity that our children with special needs are entitled to. We are joined by outspoken self advocates. We are joined by forward-thinking researchers and teachers who BELIEVE — or, at least, who are willing to suspend their DISbelief — long enough to imagine a brighter future for our children, and for all people with special needs!


About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Advocacy, Down syndrome, Down Syndrome Advocacy, special needs, Uncategorized. Bookmark the permalink.

9 Responses to If it’s Too Hard to BELIEVE Then Just Suspend Your Disbelief

  1. Shannon says:

    another fantastic posy about your wonderful family!

  2. Rachel says:

    I like your soapbox. 🙂

  3. Martina says:

    I love how and what you’re writing Maggie and I couldn’t have put it better myself. These words could come from my mouth. Thank you so much!!! 🙂

  4. Ann-carolin Enders says:

    I like it too! I have four kids, two girls: 21 and 14 and two lovely boys, three years old and with one more chromosome than the others…and I fight for and with them 🙂

    • Maggie says:

      Thanks Ann – the more us Moms stand up and speak out on behalf of our children, calling out those who don’t believe, the further we will push that envelope and the more our children can and will accomplish!

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