Count Us In: Growing Up with Down Syndrome

by Jason Kingsley, Mitchell Levitz

At ages nineteen and twenty-two, respectively, Jason Kingsley and Mitchell Levitz shared their innermost thoughts, feelings, hopes, and dreams, their lifelong friendship--and their experiences growing up with Down syndrome. Their frank discussion of what mattered most in their lives--careers, friendships, school, sex, marriage, finances, politics, and independence--earned Count Us In numerous national awards, including the EDI Award from the National Easter Seal Society. More important, their wit, intelligence, candor, and charm made a powerful and inspirational statement about the full potential of people with developmental disabilities, challenging prevailing stereotypes.Now, thirteen years later, the authors discuss their lives since then--milestones and challenges, developments expected and unexpected--in a new afterword.

Genres: Disability, Nonfiction, Memoir, Disability Studies, Biography Memoir

208 pages, Paperback

First published January 1, 1994

Reviews

[Amy · Rating 2 out of 5]

This book captured my attention because I have a younger sister with Down syndrome (now almost 30), so I was interested in knowing how other adults with this genetic disorder feel about their disability. First of all, let me say 'Bravo!' to the two gentlemen who wrote this (and to their parents who raised them). They are incredibly intelligent, high-functioning, and driven individuals. They had already received many accolades and accomplished so much when this was written (at 19 and 22 years of age). (And it is made clear how highly they think of themselves for this too) ;) The spectrum of how one can function with DS, however, is quite broad, and it is obvious that these men are special. I particularly enjoyed the Afterward written by them twelve years later updating the reader on what life events had taken place.
That said, it is not actually written by them; they were interviewed and their answers were transcribed verbatim. Therefore, it can be a little difficult to read since their language skills are a bit different. I feel it was redundant in many areas. The book's chapters are organized by subject matter but the boys were interviewed over the course of two years, so it is not in chronological order and that got very confusing for me. I thought they were contradicting themselves at times, but then I realized that was a statement said under a different circumstance two years prior. It might have read easier to just transcribe it chronologically even though the subject matter would overlap.
Overall, the 'moral of the story' is that people with disabilities (especially those with DS) want to be taken seriously. They want to be asked for their opinions, given opportunities to work and succeed, and most of all the ability to become as independent as they can.

[Susan · Rating 5 out of 5]

This was a fantastic look into the lives and minds of two men who have Down Syndrome. This book gave me a better understanding of what it may be like to have Down Syndrome, and helped to illustrate the point that not all people who have Down Syndrome are the same, and they can learn and grow just like everyone else. It was great to learn about these two remarkable men.

[Donovan Blount · Rating 3 out of 5]

Two boys with Down syndrome navigate school, girls, and politics. Written in their own words accompanied by commentary from other family members

[Rachel · Rating 3 out of 5]

This was a pretty interesting book. It was neat to see life through these two young men's eyes. Their parents have done a lot for kids with disabilities. Also because I like sesame street so much, I think it was neat that Jason was a regular actor on the show when he was a little boy :) Another reason to love sesame street :)

[Christie Taylor · Rating 5 out of 5]

I first checked this book out when my son was only a few months old and diagnosed with Ds. While this book was an informative eye-opener, it was too much to absorb at that time. Now that my son is 8 years old, and I can appreciate this book so much more, and revel in it.

[Cait Gordon · Rating 4 out of 5]

The first thing I did after reading a bit of the book was check when it was published. Then it made sense. We have come a long way since the 1990s regarding disability pride and the terms we use. Even still, I really loved reading the POVs of Jason and Mitchell through this interview format. Some of what they thought reflected the ableism and other problematic attitudes of that time, but through it all, their healthy pride in who they were shone through. It was great to watch them grow in their perspectives too. I also loved how Jason calls life a learning adventure. I feel the same way! And how Mitchell said that we can’t succeed in life without an open mind. It was nice to read the afterword as well, to find out how they were years later.

Content note: There is use of variations of the R-word, as it was commonly found in names of organizations back then. There are some uncomfortable sexist statements at times (even though there’s growth afterwards). And there are mentions of medical ableism and internalized ableism.

[Stephanie Egts Ashraf · Rating 4 out of 5]

3.5 rounded up to 4. Brief synopsis: Two young men with Down syndrome share their thoughts and experiences on various topics while transitioning from adolescence to early adulthood. I loved the idea and the content. For me, the highlights were the introduction by their moms, putting things in perspective, reviewing how each were told to expect little of their sons, cland then comparing this to the afterward. The meat of the book was a bit difficult to read stylistically - written as more of an interview transcript than anything else - but the content is inspiring. There is much that now seems dated as I read this book nearly 30 years after it was written, and that alone is encouraging.

[Tom Violette · Rating 5 out of 5]

Everyone working with folks with Down Syndrome as well as parents and families with Down Syndrome folks must read this book !

[Sue Rodriguez · Rating 5 out of 5]

A must read for everyone!

[Catherine · Rating 3 out of 5]

The best part of this book is the reflections from the authors written for the second edition, when they are are in their 30s. The interviews with them as teenagers are interesting and funny, but their wisdom and perspective on Down syndrome is much more poignant and memorable as young adult men.

[Avery Ingold · Rating 5 out of 5]

I loved this !!! I love Down Syndrome and learning about it and to learn about Jason and Mitchell’s lives through their eyes was really enriching. And the boys are right, it should be called Up Syndrome, not Down !!

[Brian Breese]

What?: This book is about two young men with Down syndrome sharing their life experiences. One of the young men, Jason Kingsley, is the son of Sesame Street writer, Emily Perl Kingsley. The book is written in conversation style with each contributing to each topic or conversation. Their insights shed light on what it means to live with a disability and their desires to become independent.

So What?: Students will get a first-hand perspective from individuals who live with a disability and who talk candidly about their lives. Students will get the full scope of what life is like for these two men: the challenges, obstacles, and perseverance to overcome these real or perceived obstacles.

Now What?: The students will create a fictitious character and choose a disability for their character. Then, they will research what this individual goes through: certain challenges, like learning sign language, etc. and develop a storyline where this character encounters an obstacle, resolves the conflict, and finally triumphs over it.

[Karen Wherlock]

I don't want to rate this with a number of stars. I didn't read it through. I picked it up because my godson is a young adult with DS and I thought it might give me some insight into his thoughts. These are 2 remarkable young men. Both of the doctor's who brought them into the world advised their parents to put them in an institution. They both graduated high school and are tax paying contributing members of society. Like all kids they have brought their parents joy and grief. They are individuals with different personalities, dreams and hobbies. They have a voice and have achieved a lot, especially in the area of rights for those who are disabled.

[Frank Spencer · Rating 5 out of 5]

Two people who, as they say in their book subtitle, grew up with Down Syndrome wrote this book. Some of the text is written, and some is transcripts of conversations. There are discussions of issues like learning, having fun, getting married, politics, and relationships with people in their lives. The discussions of independence in general and driving a car in particular are interesting. The 2007 version has an Afterward at the end with updates.

[Greg · Rating 3 out of 5]

I enjoyed this to a point but it went on a little too long. It has a powerful message and there are some very touching moments but a lot is repetitive as well. It is, however, awesome that one of the author's moms wrote for Sesame Street!

[Gr8Reader · Rating 4 out of 5]

Good read - interesting to see how far things have come in terms of outlook, opportunities - both educational and employment - since these guys were born. Was also able to see the growth and maturing of the boys over the course of writing the book. Times have certainly changed.

[Melissa Eckloff · Rating 3 out of 5]

Difficult to follow the authors' writing style. It was challenging to read & wanted to quit it a few times, but I'm glad I persisted. Really gives you insight into living with Down Syndrome.

[Chantel · Rating 5 out of 5]

I love how the author's voices come through this book, loud and clear. It gives an audience who might not have experience with someone with Down Syndrome a new perspective, and it gives someone like me, who has worked in the intellectual and developmental disability field for 10 years, a fresh breath. Bravo!