Tag Archives: Encouragement

Parents’ Dreams and Expectations for Their Disabled Children

Today, Ellen from Love That Max wrote about wondering what her disabled son would do when he grows up. I wrote about this last week. As I said then, I knew early on that I’d become a normal or even above-average college student and later employee when I grew up. Up till age eighteen at least I didn’t show any inkling of thinking I’d not meet this expectation. I know that I had worries at night about burning out at my first job (as a teacher) and returning to the workforce several years later at an entry-level administrative position. I didn’t share these thoughts. I shared my dreams of going to the United States on a college exchange student visa and never returning. Cause, you know, with affirmative action and all my minority statuses, I’d surely get a green card. Sure!

Ellen shares her son’s similarly big dreams. Max will become a fireman when he grows up, and not only that, but he’ll live at the fire station. Ellen knows this is an unrealistic dream, but then again, maybe not. She refers to a news story about a man with an intellectual disability practically living at a firehouse. In similar ways, my parents probably knew the moving to the U.S. dream was unrealistic, but they tried to keep a positive attitude. I appreciate that

What I also want to say I appreciate, is that Ellen doesn’t turn Max’s big dreams into expectatiosn for him. I don’t know whether my parents truly believed I could go to the U.S., but they made it seem lke they did and they were half-expecting me to actually pursue this path.

With disabled children, more so than with non-disabled children, you need to walk the fine line between not encouraging them enough to dreaam and follow their dreams, and turning their biggest dreams into your lowest expectations. I like it that my parents looked up the subsequent cities I was obsessed with living in once in the United States and encouraged me to learn about these places. That is encouraging a child to dream. However, I’d have liked it if my parents helped me do some realistic planning. This doesn’t mean saying: “Girl, you’ll go live in an institution and do day activities there.” I’m pretty sure that, with the right transition planning from me, my parents and the staff at the training home I lived in for eighteen months, I could’ve come far closer to my dreams than I’m now. Then again, I’m relatively happy now – happier than I was when dreaming of the United States.

One last thought, which I’m struggling with. Your idea of success as a parent is not the only conceivable norm. I know that as parents, you have limits too, and, particularly if your child is above eighteen (or 21), you have a right to these limits. You don’t have an obligation to care for your child past this age. In this sense, I can only hope that parents of disabled children have an appropriate transition plan in place before their child turns eighteen. I can only hope they accept their children no matter their path to success, but I still understand that this is not something a child, disabled or not, can enforce.

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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.

Encouraging Children to Read

I was an early but reluctant reader, especially when I had to start reading braille. Before then, I had liked to read, although I never quite moved along because there weren’t any large print books for my reading comprehension level. I was a very slow reader in both print and braille. Still am a slow braille reader. That kept me from getting into the interesting stuff for a long while, because for whatever reason, reading speed is automatically assumed to be related to reading comprehension.

I grew up in a family of readers. My father still doesn’t read much fiction for fun, but he, like me, reads stuff related to his interests. My mother and sister are both traditionally literate fiction lovers. The thing keeping me from reading fiction is mostly that I don’t have the concentration to stick to a book. I have gotten to like it more though as my reading speed has increased.

When encouraging kids to read, however, realize that reading is everywhere especially if your child can read print. I grew up with the idea that reading comic books and the closed captioning on the TV is not “real” reading. Indeed, if a child is to be successful at school, they have to learn to read books, but for daily life tasks, it is at least as important to be able to read reminders on the refrigerator. I also believed the misconception that reading from a computer screen is not “real” reading. In reality, this is the most likely source of reading your child will encounter when they grow up. I’m from a different generation than today’s kids, of course, but I for one get 99% of my reading experience through my computer.

There are many good tips for encouraging kids to read. The most important part for me is that reading needs to be a choice, not a chore. Of course, kids will get reading homework. It may seem logical to ask that reluctant readers read more than their school dictates. I for one spent countless nights in fifth and sixth grade reading material assigned by my parents. I know that it is important that kids learn to read as well as they can, and that, with otherwise academically capable children, it’s hard to see them lag behind in reading. However, you can still twist necessary reading to make it fun. Model the right attitude. For example, when I was reading the Dutch translation of Alice in Wonderland in sixth grade, my father read it in English to show that he was taking on a challenge as well. This also allowed for an opportunity to discuss the book.

For me, the transition form reading print to braille was particularly difficult. It didn’t help that braille books are not that commonplace in the Netherlands. In the U.S., there is the Braille Readers Are Leaders contest which makeschildren feel special yet not alone. I’m not sure if such an event existed in the Netherlands.

The computer can, for braille readers, be a hindrance to literacy, if they prefer to use synthetic speech. For me, the computer saved my reading ability, as I hate synthetic speech. I don’t know how today’s teachers of the visually impaired encourage braille reading in their students. I do know that the adult rehabilitation center only encourages it for labels and such. I understand that.