Monthly Archives: June 2014

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.

Pink Is a Color

There’s a lot of pooha against girls wearing pink lately. Apparently, dressing girls in pink is limiting their future success. Blimey. As the author of Parenting Highs and Lows says, pink is a color. No feminist in their right mind would say that having black skin limits people’s future success, even though in our still pretty racist society, it does. And I know you can change what clothes you wear and not what color your skin is, but so what?

In my opinion, firstly, this is holding girls and women accoutnable for the stereotypes created by society. When I was still active in feminist circles, I learned that making the minority feel responsible for defeating society’s steretotypes, is discrimination. Besides, if girls should not wear pink because it limits their future success, this is only perpetuating the idea that girls wearing pink should not be successful. This is ultimately counterproductive.

I haven’t even touched on what it is that girls are being unsuccessful in when they’ve been wearing pink. It is said to be limiting their careers. As if the only successful women are those who have a career outside the home. This is the mostly male, White, able-bodied society’s norm of success, and women’s rights include the right not to conform to this norm. The so-called feminists who are encouraging people to stop dressing girls in pink because it limits their ability to conform to the societal notion of success, are merely perpetuating the stereotypes they’re meaning to defeat.

Now I for one am not a big fan of pink. I never quite liked the color. I also do not agree with the idea that girls should wear pink, or that real girls or boys wear any color or even sort of clothes in particular. That’s stereotypical. People of any gender should be allowed to wear whatever they want, and if that is perceived to limit their ability to do whatever they want in life, that’s discrimination. Blaming the person being discriminated against, is allowing the discrimination to continue.

Birthday

My birthday is over. Now I’m 28 and it’s back to normal life I guess. The entire week was really largely about my birthday and the memories it triggers for me. That’s why I’m linking up with Word of the Week with my word for this week being “birthday”.

I wrote already earlier this week that it’s 28 years since I entered the world and the neonatal intensive care unit. When they came to visit today, my parents gave me a CD by Jan Henk de Groot with music on it about the singer’s son, who spent a large part of his first year in hospital because of a birth defect. My mother said it’s appropriate, and I agree. Incidentally, a few days ago I saw there’s a group for PTSD related to NICU experience on Facebook. It’s for parents, of course, and, while I applied, I may’ve been denied.

My sister already visited last week and brought some nice presents: a T-shirt, storage bins and bottles. The bins were intended for herbal tea, but I stored cereal in one of them, then the bin fell from a shelf and my entire floor was covered in cereal. The bottles are for blending massage oils or lotions in. I have a collection of essential oils already and got sweet almond oil, which is a carrier oil, from my sister, too. In addition to the CD, my parents gave me a nice collection of glass beads for my jewelry-making.

My birthday itself was largely a day like any other. At the acitivity room, I made a collage with butterflies, hearts and flowers, which are both things that make me happy and symbolize things I wish for myself for the coming year: love, transformation and bloom. My husband came at 3:30 PM to pick me up and drive us to the city, where we went shoppping for a skirt for me and went to eat out. I can judge from the skirt size that I’ve gained a lot of weight lately. Not good. I really need to look back at my theme for this year, which was self-care, and make sure I start eating more healthfully. Tomorrow.

Post Comment Love
The Reading Residence

Deriving Quality of Life from Success

Everyone defines success differently, as a post on Single Mother Ahoy! illustrates. The author starts out by measuring her success through her child’s achievements. As a childless woman, I will not measure my success by parenthood – even though I do esteem successful mothers higher than myself. That may be because they dominate the blogosphere, and my blog is one of a few things I use to measure my success by.

Success is not necessarily the same as quality of life, though it is related. For non-disabled people, it often is the same. At least, all the research I read defining quality of life for disabled people – and I assume the research is written from a non-disabled perspective -, determines quality of life through success. More so, it defines quality of life by success in areas important to non-disabled people. Common examples of measures of quality of life are employment, independent living and a long-term relationship. By these standards, my quality of life is fair, having achieved one of these three.

I understand people derive their quality of life from societal success. After all, we compare ourselves to others, and others are mostly non-disabled, middle- to upper-class people.

Then again, quality of life does not need to be derived from success in the workforce or on the relationship market. That doesn’t mean that quality of life and success are not related, as I said. I derive quality of life from writing for my blog, and I’m pretty sure I’d feel a lot worse about myself if I got no views or comments and a lot better if I got more than I get now. I actually believe that even the most severely disabled people derive quality of life from success. Only they and I measure success differently than non-disabled people do.

That being said, even non-disabled people probably derive part of their quality of life from relatively small successes. I refuse to believe I’m the only blogger who feels their writing contributes to their quality of life even though they don’t earn anything through it and even though they’re not receiving tons of views. I refuse to believe I’m the only crafter who crafts only for the joy of it and the community that interacting with fellow crafters brings. Honestly, these small joys are much more important to me than my high-level high school diploma ever was or a job ever will be.

Reflections on NICU Trauma

My birthday is coming up on Friday. It was another Friday 28 years ago that I was born at somewhere around 26 weeks gestation. The doctors determined my gestational age to be 26 weeks four days based on what my mother told them and whatever measurements they took. Based on my date of conception, my gestational age may’ve been as young as 25 weeks two days. When I was a teen, this “mistake” led to extreme turmoil, for I thought babies before 26 weeks gestation were at the time not treated. The reality of my birth story is that the neonatologist, now a proponent of leaving micropreemies to die, informed my parents that they were simply keeping me alive and not to interfere.

Times have changed since 1986. For one thing, more is known about the effects of premature birth on health and development. For another, more attention is paid to parents’ and babies’ mental health. This doesn’t mean that PTSD doesn’t rear its ugly head at times. Today, I read a story by a mother of a 23-weeker, who clearly says it does. Then again, 28 years ago PTSD was unheard of in NICU parents. Attachment issues were unheard of in preemies. Today, we know better.

I know better. It isn’t my job to diagnose my parents, but they certainly experienced the effects the Mom in the above story describes. Time and time again, they’d re-experience the memories surrounding my birth. They shared with me, and that was mostly good. Some of it was not so good. Knowing my parents had questioned my quality of life and whether I should be kept alive at all, well, that certainly left some scars on my soul.

I learned about the possibility of the NICU experience being traumatic to the baby from another former preemie in like 2006. She was born in the 1970s, and much had changed between than and the mid-80s. Still, when I checked out the “About” page for the above blog, I was astonished to read that Jax, born in 2012, wasn’t first held till he was nearly two weeks old. I probably didn’t have it any better. I don’t mean this to whine, but it is a possible explanation, along with others, for my severe attachment issues. I know that attachment disorders can’t be diagnosed unless there is evidence of pathological care, such as abuse or neglect. The NICU isn’t pathological, but it most certainly is not a normal environment to spend the last three months of your would-have-been-preborn life or the first three months of your life out in the world in.

DIY Felt Flowers and a Card

It’s been a while since I posted craft projects. It’s not because I haven’t made anything, but because the entire cardmaking blogosphere is on Blogspot and I’m obviously on WP. There are DIY bloggers on WordPress or self-hosted blogs too. One of them, Paige, inspired me to make button art. Unfortunately, my first project turned out so bad that my husband had a hard time making out which shapes I’d made and therefore I didn’t want to ask him to take a picture. I want to make button art again, but not now.

A few weeks ago, the activity staff at my ward introduced me to felt flowers she’d bought at Action. These were readymade, but you can also easily cut them out of felt yourself. Make sure you have three different sizes. Each flower should have a hole in it. You’ll also need a button and some ribbon.

Thread the button through to the middle of the ribbon. Add the flowers, starting small to large. Tie a knot and you’re done. In the picture below, my activity staff tied the flower to a chair./PP>

Felt Flower

Last week, I was thinking about making a card but hadn’t brought my supplies and was tired of die-cut images. The activity staff suggested I use a felt flower for my card too. Because we didn’t use the ribbon, she sewed it together for me and then we glued it onto the card. I wonder what it’d look like with the ribbon on. Instead, I glued a ribbon to the card border.

Card with Felt Flower

Skip To My Lou

Sleeves #WotW

I’m rather late to hop on the Word of the Week bandwagon, and it’s my first time pariticipating. Oops. I have been wanting to participate for a while, but never got down to thinking of my word for the week. Summing up a week in a single word is such a tough one. This week at least was a mixed bag. I am choosing a symbol for one of the sadder events of this week as my word: sleeves.

I had to wear long sleeves all week because I self-harmed on Tuesday. Normally, I don’t care whether peopel see my scars or even relatively fresh wounds. I used to make up the worst excuses to my parents. Not that I think they believed me, but well.

Yesterday, however, my sister came for an early birthday visit. I didn’t want to turn the conversation to self-harm so I wore long sleeves despite it being pretty warm. It’s not like my sister doesn’t know I self-injure, but it is not a birthday visit topic I suppose. When my sister asked about my sleeves, I just said I liked them long and changed the subject. We had a pretty fun day, my sister, my husband and I.

Today, the weather was even warmer and long sleeves truly weren’t comfortable. When I sat in the garden, long-sleeved and all, a nurse asked why I wouldn’t just wear a T-shirt. I muttered “Cuts”. To my surprise, she suggested I just not care. The thing is, I’d assumed the nurses would take offense at my “attention-seeking” if I wore short sleeves. Apparently not. So today I’m wearing a T-shirt again. It feels good.

The Reading Residence

“You’re an Adult.”

Last Tuesday, I went to the dentist. I have trouble taking care of myself, including brushing my teeth. I can’t remember to do it regularly, and when I do remember, I find it hard to motivate myself because I’m sensitive to the feel of the toothbrush and the taste of the toothpaste. The dentist gave me a mouthwash with a relatively neutral taste and told me to rinse with that after toothbrushing. I am allowed to brush my teeth without toothpaste for now to get used to the feel of the brush and into the habit of brushing first. The dentist instructed the nurse who was with me, a nurse from another ward, to tell the staff they needed to actively remind me to brush my teeth. The nurses on my ward, however, didn’t feel like this, saying I’m an adult so should take responsibility for my own self-care.

The phrase “you’re an adult” is uttered time and time again when I (or other patients, but I’m speaking for myself now) require help or display a problem that is not normal for a healthy adult. Saying we’re not healthy is not an excuse, because what are we in treatmetn for then? A nurse told me yesterday that if I had a low IQ or had been floridly psychotic, this would’ve been an excuse not to be able to remember my self-care. As if people with an intellectual disability or psychotic disorder are not adults.

The thing is, whether you’re physically or mentally capable of taking care of yourself, does not determine whether you’re an adult, and whether you’re an adult, does not determine your respectability. The idea that an adult should be capable of caring for themself, is ableist. The idea that an adult (at least, one who displays adult abilities) is more respectable than a child, is not just ableist but ageist too.

Honestly, I don’t care whether I’m an adult. I don’t care whether my abilities reflect my age. I care that I’m an individual and have individual needs. In some areas, I’m self-reliant. In other areas, I require practical care. In others, I require guidance. None of this makes me deserve less human dignity. Similarly, children and persons of any age with intellectual disabilities deserve as much human dignity and respect as a healthy adult does. We treat them differently, of course, but that is because they have different abilities, difficulties and needs. A child is different from an adult, and an adult with a disability is different from a non-disabled adult, but that doesn’t make them a child. Everyone is an individual who deserves to be treated like an individual with dignity and human rights.

Autistic Pride Day: Everyone Has a Reason to Be Proud

Today is autistic pride day. It’s been celebrated since like 2005 and was controversial from the start. Joel Smith, oen of the editors of Autistics.org, wrote a post explaining why he didn’t want to be associated with the “oh so intelligent” autism stereotype. Neither do I. I may be intelligent, but this is not something I’m proud of, and basing autistic pride on people’s supposed intelligence, is discriminatory towards those with intellectual disabilities.

To be honest, I’m not generally proud to be autistic. I know many autistics and parents of autistic children who do not find pride in autism. Really, why should we be proud of a disability? We should be proud of ourselves, our families, the communities we belong to. This may include the autistic communty. We should be proud of what we contribute – and everyone contributes something. I am proud of my creativity and my perseverance. Whether these are related to autism, is beside the point.

In my opinion, pride in autism derived from positive autistic characteristics, discriminates agianst autistics who do not share these characteritics. Like, not all autistics are good writers (or can write at all), perseverant, or as I said intelligent. You can be proud of these characteristics in yourself, but saying these make up your autistic pride, is ableist.

I want to reach out to all autistics, whether they have the skills necessary to participate in a pride event or not. I also want to reach out to the parents and carers of those who cannot participate in autistic pride day. I’m pretty sure all of them find something in the autistic they care for that they are proud of. After all, everyone has a reason to be proud.

The Realities of an Asperger’s Diagnosis

A few weeks ago, I read an article in a women’s magazine about autism. It started out by explaining that autism is a spectrum and then went on to say that Asperger’s Syndrome is the mildest form of autism. Someone sent in a response saying that Asperger’s can be severely disabling too and, because it is often misunderstood, may be more severe in some ways than classic autism.

I have an Asperger’s diagnosis. I also have a high IQ. I can attest to the common misconcetpions surrounding an Asperger’s diagnosis. For one thing, the ability to speak does not necessarily mean that someone can communicate effectively. Even if speech on the surface makes sense, that doesn’t mean the Aspie’s words come out of their mouth as they were intended. However, because we have normal to above-normal intelligence, we’re assumed to “know better” and our miscommunicatin is understood to be willful misbehavior.

Speaking of behavior, it is a common misconception that Aspies don’t have as severe or as frequent aggressive or self-harming outbursts as those with classic or “low-functioning” autism do. H.L. Doherty, a father of a child with classic autism and an intellectual disability, often makes this mistake. He does so again when he talks about shards of severe autism reality. In this post, Doherty describes the consequencces of his son’s self-injurious meltdowns, and accuses autistic advocates of ignoring this reality. He connotes that those with “high-functioning” autism, ie those who can disagree with Doherty on the Internet, do not have these experiences. I, for one, do.

When I still lived in independence training, I had meltdowns almost everyday. An experience like the one Doherty describes is quite familiar to me and occurred regularly until I went on medication in 2010. My last episode of severe self-injury was two months ago, and it was so scary that I went into seclusion for a night.

Now I for one agree with Doherty on some controversies. I disagree on others. My agreeing or disagreeing and how eloquently I can put this into writing, does not change anything about my functioning level in any other area than written communication about a specific topic. I am too ashamed to write about some of my Aspie realities. The details of my severe self-care difficulties, for example. I know that Doherty and his supporters would not believe me anyway. After all, I’m so intelligent. Yes, I am. Relative intelligence is required for an Asperger’s diagnosis. That does not cause any of my difficulties to go away.