Tag Archives: Down Syndrome

Five Inspirational Books That I Love

This week, one of Mama’s Losin’ It’s writing prompts is “book review”. Also, a few days ago, the Blog Everyday in May prompt was “five books I love”. I don’t participate in Blog Eveyrday in May, since I only discovered it yesterday, but I love to find writing prompts. Therefore, I thought I’d combine the two and list five books I love. As it turns out, all are inspirational books.

1. Preemie Voices by Saroj Saigal (2014). This book is a collection of letters from former preemies, born between 1977 and 1982, that describe their lives now and give hope to parents of today’s premature babies and children. Many years ago, I believe Bill Silverman wrote a book of stories from former preemies titled Small Victories. I could unfortunately not get my hands on this book and am so glad I got my hands on Preemie Voices. It is so validating to know that I’m not alone on this preemie journey, even though it’s a bit annoying that the target audience is parents of today’s preemies.

2. Miracle Survivors by Tami Boehmer (2014). This is Boehmer’s second book of stories from long-term survivors who were said to have incurable cancer. I didn’t read her other book, but I think I’m going to. In Miracle Survivors Boehmer starts by listing characteristics she’s found long-term survivors of thought-to-be-incurable cancer have in common. Each contributor then tells his or her story and ends it with life lessons they’ve learned through their journey with or their overcoming of cancer. Though some people use alternative medicine and claim to have been cured by it, this is not prominently promoted. Above all, the survivors promote being on top of your own care and advocating for yourself. I feel this is an importnat message even to those who are in the healthcare system for other reasons.

3. Angels at Our Table, 2nd edition by Ann Breen (2012). This is a book of stories from parents of children (and some adults) with Williams Syndrome. People with Williams Syndrome usually have an intellectual disability and may have many health problems, but they also commonly have a very sociable personality and cute facial features. Though many families struggled with getting their children properly diagnosed and treated, particularly back when Ann Breen’s daughter was young in the 1980s, the message in the book is one of appreciation. The importance of support is also highlighted, as Ann Breen founded the Williams Syndrome Association of Ireland. I for one happen to actually like inspirational books about people wiht disabilities, so this one is a good one for me.

4. Real Families, Real Stories by Stephanie Sumulong (2014). This is a book of stories from family members of children (and again some adults) with Down Syndrome. The stories are very short, which is a bit disappointing, because i don’t get to get a deeper understanding of these families’ lives. The intention of the book is to celebrate people with Down Syndrome. For this reason, it is also sad that no adults with Down Syndrome were interviewed. However, the stories do cover many aspects of families’ lives with Down Syndrome, including prenatal diagnosis, adoption, the heart defects that commonly occur in Down Syndrome, and sibling perspectives.

5. Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries by Amy Newmark, Carolyn Roy-Bornstein and Lee Woodruff (2014). I have not yet finished this book, but so far, it seems wonderful. Having myself acquired possible brain damage shortly after birth, I find the stories of brain injury survivors somewhat relatable, though of course I did not have a life prior to brain damage. A few months ago, I read a Dutch book of stories from people who had invisible disabilities due to brain injury and I loved it. Being Chicken Soup for the Soul, the stories of course have been selected for being inspirational, but so far, it looks like many aspects of life with TBI are covered.

Mama’s Losin’ It

Post Comment Love
You Baby Me Mummy
Found Love. Now What?
Advertisements

We Are All Acceptable in God’s Eyes

Our society is extremely achievement-oriented. We are taught that we are acceptable because of what we have to offer the world. I am no exception. Though the people around me now accept that I have come out as I have, in the sense that they no longer deny it, I used to be taught that I somehow had to prove myself. Having no job, no college degree, no children and being dependent on benefits and long-term care, I often feel like I have failed as a human being.

Today, I read the book Real Families, Real Stories: Celebrating Life with Down Syndrome by Stephanie Sumulong. It is filled with short stories by parents and the occasional sibling of children and adults with Down Syndrome. What struck a chord with me is that each of these family members says their child is amazing. They don’t say so because their children’s achievements are magnificient in society’s eyes, but because as human beings these people are valued for who they are. I cringed soometimes at the umpteenth exclamation of how these people are gifts from God and have so much to offer. Then again, I realize that this is because I doubt my own worth.

Then I read a devotional which sends a conflicting message. It tells us how none of us are truly good enough in God’s eyes from the start, due to Adam and Eve’s original sin. Then it goes on to tell us that, if we accept Jesus as our savior, we are in fact all good enough. The devotion doesn’t go into what we need to achieve to be good enough in Jesus’ eyes. It doesn’t list any rites of passage to the Godly family. I realize that the author of the devotional may believe that certain morals are required to be saved, or that only certain people are predestined to be saved. I won’t go into this. For now, the author just states that, if you accept Jesus in your life, you are good enough in God’s eyes.

It is weird, but I find it comforting to know that all people are judged equal before the Lord. We all have a wickedness to us, whether we make big money or have three Ph.D.’s and five children or not. God recognizes this, but He also recognizes the good in everyone and He sent his son to make peace with us. As I said, people often believe that certain morals make us good enough in God’s eyes. I am not too conservative and therefore I don’t believe that we need to be something or achieve something to be accepted by God. Others might disagree. The point is, we all have some wickedness to us but it doesn’t matter to Jesus.

Equipping Godly Women

Worrying About Your Disabled Child’s Future

Today, I came across a post by the mother of an adult with Down Syndrome on the topic of birthdays and more specifically, crying on your child’s birthday because you’re worried about their future. I left a lengthy comment, on which I want to expand here.

My parents probably cried on my birthdays too. At least they were usually emotional. I don’t know whether they worried about my future, but they sure thought about it a lot. I survived the neonatal intensive care unit with several disabilities, some of which wouldn’t be diagnosed until many years, decades even, later. I had had a brain bleed, retinopathy of prematurity, and a few other complications. My parents knew soon that I would be severely visually impaired, possibly blind. I don’t know whether they knew or cared about my other disabilities.

My parents started thinking about my future early on. They started communicating to me about my future early on. At age nine, I knew that I was college-bound and had to move out of the house by age eighteen. I don’t know whether it’s normal to plan so far ahead for a non-disabled child. My parents didn’t do this with my younger sister as far as I know.

It is understandable. With non-disabled children, independent living and college or employment are the default. Positive parents, we’re told by the disability community, keep the bar of expectations high, so they expect the same from their disabled children that they do from their non-disabled children. To be honest, I hate this attitude, which sends the message that to be successful is to meet up to non-disabled standards. We aren’t non-disabled, for goodness’ sake.

Let disabled children be children please. I understand it if parents worry about their child’s future, especially in societies that don’t have socialized health care and if the child is severely disabled. I understand that these worries get somehow communicated to the child. There’s no way of preventing this. What you can do, is minimize the worrying as much as posoible and turn it into positive but also unconditionally accepting encouragement.

Education of Disabled Students: Inclusion vs. Mainstreaming

In his book, I’m Not Here to Inspire You, Rob J. Quinn published an essay on mainsreaming vs. inclusion and why inclusion has failed. He writes that, when he was mainstreamed in the 1980s, he had to somehow prove he was capable of going to regular school, whereas currently disabled students are included in regular education at all costs.

I was mainstreamed from 1999 to 2005. I, like Quinn, had to prove I was capable of being mainstreamed. Unlike Quinn, I was the only student with my disability in my school, which I until I read Quinn’s essay considered a definition of mainstreaming: the school really caters to non-disabled people but allows disabled people in who prove they’re capable.

Quinn considiers inclusion to do a disservice to disabled students because they’re given too much assistance. As an example, he writes about a girl with a similar level of cerebral palsy to himself who was given special assistance in all of her classes, while Quinn had to get by without extra assistance. Similarly, except in a few math classes, I did not get extra assistance. In these math classes, they were older students giving me assistance, not aides.

I understand Quinn’s point about overassistance. However, I see him writing from the point of view of someone who doesn’t have a cognitive disability. He points out that he heard of a girl with Down Syndrome being placed in advanced classes because “the kids are nicer there”. I can understand this erodes the meaning of advanced placements. Besides, I agree with Quinn that kids with disabilities need to be prepared for the real world and therefore as I said should not be overprotected or overassisted. However, this does not mean that students with cognitive disabilities need to be shoved away into special ed classes until they somehow prove they can get by in regular education.

Another objection Quinn has to inclusion is the lack of exporsure to other students with similar disabilities. When he was mainstreamed all kids with cerebral palsy went to the same schoool in the district. This is not what mainstreaming is like here: I was the only blind student in my school. In this sense, I’d love to have been given an education like Quinn’s, having exposure to people without disabilities as well as those with disabilities. In the Netherlands, unfortunately, at least in the 1990s, you either were the only kid with a sensory or physical disability, or you went to special education and were surrounded by students with your disability.

Quinn concludes that students with disabilities, according to him, need to somehow prove they are capable of mainstreaming if they want to be in regular education. I disagree. After all, people with significant disabilities shouldn’t have to prove they have a right to live in our society, right? I know some pro-institution people disagree, but other than in his essay on mainstreaming, Quinn doesn’t advocate exclusion. Maybe he would for those with intellectual disabilities. I for one won’t.