Photo by Sean Benesh on Unsplash

I’ve been walking a tightrope the past 13 years.

Raising a child with Down Syndrome in a world with low expectations for that child is frustratingly difficult. The cruelest act is committed by systems; health, education, and social, which convinces parents of “inevitable” limitations and often useless problem-based approaches. It feels a bit like self-fulfilling prophesy.

As an OT I had an idea of where the systems were failing our children and began to form a community to change things for our families. …

How focus on superficial inclusion undermines education for students with neurodiverse learning needs

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Why do we care about inclusion?

Skin color, race, religion, gender, and orientation do not determine potential or worth. It is bigoted and prejudiced to assume one group is more intelligent than the other or that one group has less potential than the other. Based on that truth, massive efforts are rightly made to level the playing field.

A child whose family lives in poverty has the same right to education as a wealthier counterpart. If we address the inequities of the environment, make sure the child has access to the necessary technology, proper nutrition, and a consistent place to…

Photo by author.

a·ware·ness

/əˈwernəs/ — noun

knowledge or perception of a situation or fact

Thirteen years ago, I learned October was Down Syndrome Awareness Month.

Inevitably, most in the DS community feel an obligation during this month to promote awareness. We fill our social media feeds with the faces of our beautiful children, articles about the impact people with DS make on the community, and even a little inspiration porn that we would otherwise shun, all in effort to convince others to…what? Appreciate our children’s humanity? Suddenly realize people with DS are beautiful? Finally accept that people with Down Syndrome have valuable…

Here is how to fix it

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Special Education is a costly, burdensome, contrived, and outdated dinosaur of a system.

It systematically takes the most vulnerable students, pigeon holes them with abysmal and inappropriate stadardized test scores, places them in situations and environments that have not resulted in decent graduation rates since the original Education for All Handicapped Children Act (EAHCA) of 1975, views (and often times punishes) neurodiverse-commuication as behavior, and collects a ton of money each year for doing so.

I want to be clear, it is the system of Special Education that is broken, not the Special Educators, therapists, and paraprofessionals within the system.

The case for never administering the tool

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A person’s working memory capability is one of the best predictors of general intelligence, as measured by standard psychological tests.

-Queensland Brain Institute

Over the past 26 years I have sat around the conference table participating in meetings determining placements, services, and plans for people with Developmental Disabilities; first as an Occupational Therapist and then as a mother.

This is usually the point where I write about how things used to make sense before my son was born but then I was awakened to a new way of thinking. This is not that point. …

The missing piece to successfully educating children with special learning labels

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re·spect
/rəˈspekt/
1. a feeling of deep admiration for someone or something elicited by their abilities, qualities, or achievements. 2. due regard for the feelings, wishes, rights, or traditions of others.

Could you imagine submitting a resume to a potential employer in which you meticulously outlined all the things you are not good at? Every last struggle, every failure, and every problem (personal and professional) would be on display as an introduction to what you would potentially bring to the job.

And, if by some stroke of luck you got the job, what would your employer expect from you?

This…

A letter many believed they would never write

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I hit the return button on the computer and as soon as the email sent I felt a wave of fear wash over me. I sent the Intent to Homeschool letter to the school district. It wasn’t during a pandemic, it was 2011 and I wasn’t faced with a dire situation of having to balance my job and teach my child. I was neither forced to keep him home by a virus nor lacked good school options. It was my choice to homeschool my child with Down Syndrome under the best of conditions and yet, the fear was palpable.

I…

Why Nothing Will change Until We Speak the Truth

Photo by Alex Hockett on Unsplash

It takes a great deal of bravery to see our children’s diagnoses as incidental to who they are when advocating for real opportunities for wellness, development, and education. Yet that is exactly the view we must take.

Buying into the notion a child is somehow less worthy of high expectations, equal opportunities, and basic civil rights because limiting systems have labeled him as “low functioning,” “profoundly cognitively delayed,” or “non-verbal,” keeps parents quiet.

We are kept silent from asking why our 8-year-old can not yet add when we sit in school meetings listening to a rambling list of stories of…

Photo by Jon Tyson on Unsplash

I can feel the rip of pain across my stomach and I know it’s just the beginning. I chose pizza for lunch even though cheese always makes me feel this way. Now, I am in gym class and we are doing a basketball unit. My stomach hurts so bad I can’t even stand up straight, so I sit down and close my eyes waiting for this wave to pass.

I hear the teacher call my name, but I keep my head down. Hopefully, she will realize something is wrong and get the nurse because I feel too sick to walk…

How Language Undermines Authentic Acceptance

Lucas, mile 3

Prejudice can be overt and ugly. It can be expressed in obvious ways such as segregation, violence, and intimidation. When a person or group experiences overt prejudice there is no ambiguity about what is happening. The message is clear.

Prejudice can also take a more subtle approach. The quiet exclusion from a group, stares, and whispers, or crude humor — Hey, it’s just a joke, don’t be so sensitive!

As a mother to a child with Down Syndrome, you may be surprised to hear that I think there is a third and equally dangerous form of prejudice. That which is…

Geralyn Spiesz

MS, OT., Admin of The Down Syndrome Action Plan, and Mother — Following through on a promise to change the world for People with Down Syndrome.

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