Down Syndrome Awareness — "Back to School" Grass Roots Advocacy — Part III

My Offer-to-Speak Letter

This is the 3rd post in a series about the Grass Roots Advocacy efforts I’ve undertaken on behalf of children with Down syndrome. I call my think-globally, act-locally advocacy efforts “Back to School” Grass Roots Advocacy. While my message is inextricably tied to my children who were blessed with the extra 21st chromosome that causes Down syndrome, the message and process could actually work for any population with special needs in any educational arena… though focusing on those in the college crowd who are specifically planning careers working with children with special needs will actually have a direct impact on kids with special needs, like Brian and Michael.

Links to the first two parts of this series:

Part I: http://walkonthehappyside.blogspot.com/2009/06/down-syndrome-awareness-back-to-school.html

Part II: http://walkonthehappyside.blogspot.com/2009/06/down-syndrome-awareness-back-to-school_29.html

Part III is the letter I sent to the local colleges offering to bring my special family in to meet and speak with their students. Obviously, parts of this letter are specific to me and my children and should be customized to your family’s experience before you send it out. I’ve had what I would consider very good results with this letter, being invited to speak with individual classes, multiple classes, groups of students within a department and at department orientations. I have updated the letter in the past two years to expand upon where we are in our process… that is, the process of living a life with children with special needs… which I call “My Eden”!

________________

Current Date

Name and Title

College Name
Department Name
Address 1
Address 2 (as needed)
City, State Zip

RE: An Offer to Speak – Exceptional/Special Needs Identical Twins

Dear (Title & Surname):

As a [addressee’s title] in an educational program designed to prepare students for careers focused on helping others, you encounter individuals from every walk of life with varying backgrounds, philosophies and beliefs.

Likewise, as the parent of 3 1/2-year-old identical twins with Down syndrome (DS), I also encounter countless people of diverse backgrounds and beliefs both in my day-to-day life and as the mother of special needs twins who were immersed in the Early Intervention program for the first 3 years of their lives and, after a successful transition from EI to CPSE, now attend an integrated pre-school class (16:1:2) at Brookville Center for Children’s Services at Marcus Avenue. Most of the people I encounter — personally and professionally – have positive and hopeful attitudes toward my boys and their diagnosis. Some, however, are uncomfortable because they have had little or no exposure to people with Down syndrome and so shy away from and never have the pleasure of coming to know my beautiful boys. While, unfortunately, still others have negative preconceptions – either openly or underlying — about how DS affects my boys and, therefore, what they are ultimately capable of achieving… Or not achieving. Individuals in these last two categories hail from every age and ethnic group and from all walks of life including nurses, doctors, teachers, mothers, neighbors and therapists. And, they all have one thing in common. They all started out as students… and, perhaps, were never exposed to anything contrary to their limiting beliefs. Not only are their misguided notions detrimental to the development and future potential of children like mine; But, just as important, their attitudes can negatively impact a mother’s beliefs and hopes about the special needs of her child, which can drastically affect her expectations thereby limiting her child’s achievements.

Fortunately, I am not that kind of mother! Rather, I have chosen to seize the tremendous opportunity my sons, Brian and Michael, have given me to help educate people – students like those in your program – who have chosen to work with children and adults with special needs including Down syndrome. My mission is to give your students the opportunity to experience Down syndrome first-hand, to ask questions, get real-life answers and to change the antiquated and limiting preconceptions that may exist… one student, one class, and one university at a time.
The abilities of people with Down syndrome vary widely from individual to individual and each has their areas of strength as well as areas where they may require more help. With appropriate and early intervention each child can develop to reach their maximum potential. My boys, developing mentally and physically on the low end of the “typical” developmental curve, (in what is known as the “borderline delayed” range) are an incredible example of what is possible with support and intervention. I think that every one of your students should have the awesome opportunity to meet them and believe in the possibilities for every child with Down syndrome.

In the past three years, we have been invited to speak with child development, psychology and/or speech & language students at Nassau Community College, Hofstra University, Molloy College and Adelphi University. We have candidly discussed the cause and effects of Down syndrome on Brian and Michael; on their older sibling, Olivia; on me and my husband; as well as our experience with Early Intervention and the transition to CPSE (Committee for Pre-School Education); our approach to their education and development; their overall and specific health issues; how DS has impacted not only our family, friends and neighbors but the community at large; and how the beliefs of their caretakers – your students – can greatly influence the outcome. Now, I would like to further expand Brian and Michael’s positive influence to reach more people who will play key roles in the development and futures of children like them. I would like to bring Brian and Michael (and their sister, Olivia, as available) for an “up close and personal” visit with your students.

It is my hope and intention to change the way the world sees Down syndrome, one person, one student, one visit with Brian and Michael at a time. The students who have had the pleasure of meeting my children are deeply touched – their outlook forever changed for the better. I ask that you present this wonderful opportunity to the faculty in your department and have them contact me directly to set up a class visit. I am available and more than happy to address groups of any size in this regard. To this end, I can be reached at home at (###) ###-####, mobile at (###) ###-#### or via email at [your email address]. I look forward to hearing from you. Thank you, in advance, for your time and consideration.

Sincerely,

Maggie (signature)

Margaret [my full name]
“One drop of water raises the ocean.”*

References are available upon request.

* This quote comes from one of my children’s favorite movies. It is the moral lesson in “Dinotopia” where individual differences are celebrated in a society where dinosaurs and humans not only peacefully coexist but thrive by maximizing their differences.

_____________________
I am certain that each of our letters would vary slightly or greatly depending upon our specific experiences and our unique children. Regardless, the main message is that our children should be addressed as individuals and treated with dignity and respect according to their needs to help them achieve their maximum potential. The goal is to help these students — the future educators and therapists — to see the individual first, not the diagnosis… And, to believe in what’s possible!

For my next Down Syndrome Awareness post, I’m going to recreate [as best I can] the general gist of the message I carry to the students which always covers a few key points illustrated with examples from my family’s personal experiences as well as stories we’ve heard from others. My impromptu up-close-and-personal talk is very much student/audience-directed in response to the questions that are asked and to address the specific area students might encounter in their future work with children with special needs. Stay tuned…
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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 CPSE, Down syndrome, Down Syndrome Advocacy, early intervention, Education, Grass Roots Advocacy, pay it forward, special needs, think globally act locally. Bookmark the permalink.

3 Responses to Down Syndrome Awareness — "Back to School" Grass Roots Advocacy — Part III

  1. Veronica Lee says:

    Hi, I'm visiting from MBC. Great blog.

  2. Maggie,I have added you to my blogroll. Please let me know if that is a problem and I will remove it. I am a mommy of the DS_Multiples group on yahoo.

  3. Ria says:

    Hi Maggie,I finally have some quiet time here to read part III of your Back To School posts. Thanks for sharing your journey and how you do it. I definitely would like to explore this in our area too. I've also spoken to our EI therapists and they might be able to point me in the right direction as far as where I can go and who I can approach. I haven't started anything yet but it's all brewing in my head.Thank you so much for inspiring me to do this!

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