There are a lot of books out there about parenting a child with Down syndrome, and the vast majority of those focus on the first years of life. (And most follow a very familiar arc: surprise, grief, the a-ha moment, and then a bit about the beauty of a child with Ds.) It’s great to have these books available, particularly when just starting out, but I often crave stories about teens and adults, as well as stories from people with Ds themselves.
There are a small handful of blogs written by individuals with Down syndrome, but not much in the way of autobiographies. I finally took the time to sit down with this slim volume and learn more about Down syndrome from the perspective of someone who has it. Up Syndrome, by Megan Abner, is just 85 pages long, making it a great book for a quiet summer afternoon read.
The book is a collection of vignettes spanning topics from school to travel to dating. Reading it feels a bit like sitting down and listening to Ms. Abner reminisce. It has an almost stream-of-consciousness quality – just the unfiltered thoughts of someone sharing memories, both good and bad. The book has not been edited for grammar or content, so Ms. Abner’s unique syntax has an opportunity to shine, and adds to the feeling that you are listening to her speak rather than reading her words.
Ms. Abner ‘s words are spare and direct. The book starts with “I guess I was born with an extra chromosome,” a perfect example of the author simply getting to the point. At times, her memories are difficult to read; she experiences many things that us parents fear for our children: teasing, bullying, isolation. There is a particularly wrenching vignette in which she is keenly aware that a group of boys are flirting with her sister while intentionally ignoring the author. But while it may be easy to point to Down syndrome as the reason for some of her experiences with bullying and isolation, there is a universality to her stories as well. So many of us have been bullied, isolated, looked over. I certainly resonated with some of her stories.
As a parent, some of what Ms. Abner has to say is challenging. On the topic of speech therapy, she says going was “humiliating” and the experience made her feel “obsolete.” She points out that it is other people who felt she had a problem, while all along she was fine with her abilities.
ETA: And on the subject of parents, I was surprised and a bit dismayed to see the book starts with a forward from her parents. What is meant to be Ms. Abner’s story is tainted a bit by having her parents’ voices included, and included at the forefront rather than an afterthought. I didn’t feel like this added to the book at all, and I was disappointed that the author’s words weren’t left to stand alone. After all, other authors don’t have a preface written by their moms; their words and story telling are deemed sufficient on their own. The preface does feel a bit paternalistic.
The author has some beautiful things to say about having Down syndrome (or Up Syndrome, as she prefers to call it). It is clear that she embraces the extra chromosome and is fiercely proud of who she is. She considers Down syndrome a gift from God, and wishes for parents with a new diagnosis to understand Ds as a special gift and blessing.
In the end, Ms. Abner nails down so succinctly what so many of our blogs, facebook posts, and advocacy work try to say: “My feelings are exactly the same way like your feelings, and I feel things just like anybody else.”
A quick, easy read that gets straight to the heart of the matter, Up Syndrome would fit nicely into anyone’s collection, whether they have a personal connection to Down syndrome or not.
Up Syndrome is by Megan Abner.