Tag Archives: disabilities

>In the eye of the beholder

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>Loveliest of trees… or at least one of them. It’s a beautiful day in the neighborhood when the trees look like this.

It’s not so lovely when the road signs look like this. And this sign was quite readable, compared to the other road signs that we needed to read to reach our destination on Monday morning.

It was the kind of weather that made us decide to take a detour into a Farm and Fleet store and buy Amigo a new pair of boots. These were not inexpensive boots, either. They fit, they’re warm, and he can handle them himself. I call it an investment. I hope his feet are done growing for now….
You can see the evidence in the parking lot. The roads were that sloppy, too. My vehicle is so grungy that even my visually impaired teenager remarked, “Mom, your van is a mess.”
A snow- and road salt-covered minivan is just not as pretty as a snow-covered tree.

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>Shoulds are bogus, even in a snowstorm

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>Ah, contradictions. This is a case for “Shoulds are Bogus.”

The school for the blind should be more flexible in receiving kids who do not take their buses.
Reality: Their dorm staff doesn’t arrive until a certain time, and that’s that.
End result: I had to plan to drop him off late in the evening, and then either find a hotel or make my way home over back roads late at night. In the snow. During deer season.

I should have left earlier in the day.
Reality: Amigo couldn’t get into his dorm at the school for the blind until 7:30 PM at the earliest, so leaving earlier was pointless.
End result: We watched the Packer game at home and then left.

We should have changed plans completely, leaving early Monday morning.
Reality: We didn’t know the weather would be as bad as it was or the traffic as slow as it was.
End result: We changed plans as we got closer to our first destination.

I should have prepared Amigo for the possibility of change.
Reality: Having too many options can cause him to melt down just as much as a sudden change can. There was really no way to prepare him.
End result: He had a meltdown in the van.

I should be grateful we found a hotel room down the road from La Petite’s apartment.
Reality: I’m very grateful. In fact, the other hotel in the town near Amigo’s school cancelled my reservation with no charge. I’m grateful for that, too.
End result: We’re nearly the only customers here, in this hotel in a small college town. It’s very quiet.

And shoulds or not, I’m glad we have a safe and warm place to lay our heads and rest. No matter what the morning brings, we’ll be all right.
And the hotel room has a coffeemaker, so at least one of us will be happy in the morning.

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>Dreams…dream, dream, dream…

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>Over and over, night after night, my dreams have had the same theme. It’s a different location, different people, but always the same. A labyrinth of hallways, traveling here and there, steadily, quickly, sometimes alone and sometimes with a guide who knows the way. In last night’s variation, it was actually a walled city of sorts or a ritzy parking garage, because I drove part of the way in a sporty little car. At one point I could see the outside, a large lake (Michigan? Green Bay?) in the distance, but I couldn’t find the exit.
Saturday night the maze was a set of hallways in and under a hotel complex. I was leaving a restaurant and heading outside and a hotel staffer was helping. It seemed that was part of his job, like a bellboy or other customer service type person. Near the end, he got called away briefly (paged? cell phone? don’t remember) and told me to wait. I didn’t. I got lost again, within sight of the end.

Every night my dreams have included something like this. It could be work-related stress. Parent-teacher conference preparation, multiple meetings on the same day, turning down committee work that I know I’d enjoy because there simply aren’t enough hours in the day…it all creates an overwhelming feeling.
It could be family. Amigo’s health issues are ongoing. We don’t know what’s causing his problems, and we expect news soon. Is that why I can almost see the exit? It reminds me of the light at the end of the tunnel turning out to be an oncoming train. I’ve forced the “What ifs” to be quiet, but that doesn’t mean I’m done worrying.
Could these dreams also mean concerns for our country, the election and how it’ll affect me and my loved ones? It may seem abstract, but it’s not. The economic woes of the federal and state governments have a direct impact on my job. I have a job, a fairly secure one, but we’re counting paperclips to keep to our budget, and it’ll get worse before it gets better. Election results matter; not doubt about it. The Democrats must win and win big, or the families I work with will suffer even more than they are now.
The first night I had this dream, I woke up thinking the hallways represented Children’s Hospital. The physical appearance of the halls made sense. But now that I’ve dreamt this a few more times in a few more variations, the book isn’t as easy to read.
Maybe I need to make myself more comfortable within the walls instead of looking for the exit. Maybe if I focus internally instead of toward the external, I’ll relax and find my way.
In the meantime, I’d better update my gradebook, make sure Amigo’s prescriptions are in stock, and check on my campaign signs.
After all, it’s better to do what I can than to stew over what I can’t.

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>Language, language

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>It seemed like a small point, a parenthetical reference, but it stuck out.
“…try to identify problems. If you cannot find the solution to these problems (you must see some, unless you are perfectly blind), then here is your opportunity!”
I addressed it with this comment: “Using the term “blind” as a synonym for clueless is offensive. My son is blind, but he’s very observant. He pays attention and has an excellent memory. If you were playing Trivial Pursuit or working on a project, you’d want him on your team – vision or none.”
The writer responded, letting me know that she had intended no insult or offense, that the term was merely a metaphor. I replied, suggesting other less offensive metaphors such as “rose colored glasses.” This time, the writer threw a hissy fit with a note full of exclamation marks, accusing me of putting words in her mouth, insisting that it wasn’t a big deal to use a metaphor such as “blind” to make a point.
I’d rather not link you to her article because she doesn’t need more readers. I’d like to advise, however, that writers in any professional field watch their language. I’m not asking for excessive political correctness; I’m suggesting accurate language with a sense of consideration for others.
I’ll use my own disability as an example. In previous centuries, hearing impaired people might have been referred to as Deaf and Dumb. Deaf, unable to hear well, Dumb meaning unable to speak.
In today’s world, Dumb usually means stupid or unintelligent. Nonverbal would be the accurate term for someone who doesn’t speak. Deaf describes some people, but Hard of Hearing or Hearing Impaired describes a group that includes many, many more.
Using a descriptive label as a put-down insults two groups: the target of the insult and the group being named in the put-down. Anyone who uses “deaf” to insult someone obviously hasn’t met me or interacted with other people with hearing impairments.
Here comes the writing teacher in me. The statement above would have been more effective, not just less offensive, without the use of the word blind. Instead, I suggest the following.
“Identify problems and weaknesses. If you are honest with yourself, you will see areas in need of improvement. If you cannot find the solution to these problems, then here is your opportunity!”
Another option, using more colorful (but not insulting) language, would be this.
“Take off your rose-colored glasses, leave the optimist behind, and seek out problems. Finding the solutions to these problems will provide great opportunities.”
Would you respect a co-worker who thought nothing of insulting disabilities? I wouldn’t. Think twice, and use decent and respectful descriptive language.

(This post is also posted at MidCentury Modern Moms because frankly, many bloggers need to read it.)

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>Have coffee, Braille directions, and exit strategy: will travel.

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>I’ve heard it said that the Secretary of War should be an autism parent. We plan for every eventuality. We not only have a plan B, but a plan C, plan D, and more. We think through possible roadblocks and speedbumps, make exhaustive lists, prepare everyone thoroughly for the road, and we always, always, have an exit strategy.

Amigo, a teen with Asperger’s, is actually a very good traveler. He loves road trips. In fact, we print the route plan for ourselves and in Braille for Amigo. He is a great navigator, despite his lack of usable vision. When I drive, I put him in charge of the cell phone and the radio. It keeps my mind (and eyes) on the road, and lets him explore any region’s local color through its radio dial.

In order to stay the course with fewer hiccups, we plan more details than most parents. The route file for our upcoming trip includes these statements and more.

“After this stop, Mom will need to sit in the front to help watch highway signs in the big city for Dad.”
“This stretch will be a long haul.”
“We should get gas before we get on the tollway.”
“And now we stay on highway 80 until we reach Ohio. Easy, huh?”
“If we’re feeling spunky when we reach Cleveland, the Indians are playing at 7:00.”
“Are we there yet?”

Amigo has been an active participant in planning this trip. In fact, he’s already suggested getting up early the first day and hitting the road by 7:00 AM. Granola bars and cappuccino for breakfast anyone? I’ve already chosen my travel coffee mug. After all, besides an exit strategy, what’s more important to a road trip than coffee?

This post is part of Scribbit’s Write-Away contest for June. Her theme is “Going Places.” I can’t wait to read all the submissions; they’re always varied and fascinating.
Update: Readers from Scribbit might enjoy this vacation post. It was written too late for the contest, but it definitely fits the theme of “Going Places.”

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>Shoes, shoes, shoes

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>Amigo has what we sometimes call a “double whammy”. His two handicapping conditions, blindness and high-functioning autism, sometimes join together to work against him. Where clothing is concerned, that’s very, very true. He has rather weak fingers and poor fine motor skills which make it hard for him to engage a zipper or button a shirt or tie his shoes.
He started dressing himself in kindergarten, and we adapted by buying sweatpants and t-shirts so he didn’t have to deal with fasteners. This way, he could be independent.

Shoes are another issue. He has worn prescription orthotic inserts since he was two years old. These, combined with his high insteps, make Velcro-fastened shoes impossible. Special education people kept telling us, “Oh, I know where you can buy Velcro shoes that work!” but they didn’t come through. I was rather insulted by their insistence that I wasn’t looking hard enough. I’ve bought his shoes since he was two years old, after all. I’d buy easy-to-handle shoes for him if they were out there! Our solution: elastic laces. These laces (that look at first glance like a telephone cord) have been a godsend. He can tighten them when needed, and they never come untied.

But again, no one else in high school has elastic laces. They’re more for the youngest and the eldest (Grandma loves them). While Amigo doesn’t mind having these in his shoes, the day will come when he needs to look somewhat professional, and coiled shoelaces won’t do the trick.

Enter Lands’ End. They have casual shoe with elastic, and the laces are purely for show. The shoes are narrow enough to fit Amigo’s foot, roomy enough to accommodate his orthotics, and look reasonably decent, too. If the shoelaces keep coming undone, I give in and (gulp) cut them short. Amigo keeps his shoes on, they look decent, and we’re both happy.

Until he grows, which at 16 happens all. the. time.

Maybe I should be grateful he doesn’t have his sister’s fascination with a shoe wardrobe.

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>Dreams of a Mother from long ago

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>If you know the name Julia Ward Howe, you probably know her as the writer of the lyrics to the “Battle Hymn of the Republic.” Ms. Howe’s poetic voice also suggested Mother’s Day, long before it became a holiday, as a day to celebrate celebrate peace.
The first stanza of her Mother’s Day Proclamation reflects her protective feelings as she wished for the men in her life to be safe from the ravages of war.

“Arise then…women of this day!
Arise, all women who have hearts!
Whether your baptism be of water or of tears!
Say firmly:
We will not have questions answered by irrelevant agencies,
Our husbands will not come to us, reeking with carnage,
For caresses and applause.
Our sons shall not be taken from us to unlearn
All that we have been able to teach them of charity, mercy and patience.
We, the women of one country,
Will be too tender of those of another country
To allow our sons to be trained to injure theirs.”


MOMocrats are celebrating Mother’s Day all week by asking moms to share their dreams. I join them as Mom, as teacher, as political liberal, but mostly as dreamer.

I dream that differences will be valued, not disdained.
Eye color, hair color, body shapes, and skin shades will be appreciated for their beauty and variety.
Cultural traditions will not disappear, but will thrive and grow together into a rich and fascinating sharing of knowledge and beliefs.
I dream that blindness will be merely a different way of seeing, and deafness impair only the quantity, not the quality of the language ‘heard’.
Children will matter because they own the future. Their education, academic and social, will become and remain of utmost importance.
The mediators and the peacemakers will be recognized as the strongest leaders.
Questions will come from curiosity, not ignorance, and the answers will breed respect.
Knowing each other, knowing ourselves, will lead to knowing that fights and conflicts, wars of all kinds, will cease to be of value.

MOMocrats: Dreams of a Mother

Cross posted at A Mother’s Garden of Verses for Mother’s Day, 2008

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>Comfort in metaphor

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Jennifer Graf Groneberg faces a familiar journey in Road Map to Holland: How I found my way through my son’s first two years with Down Syndrome. I, too, had to suddenly change my perception, modify my hopes and dreams, and dig for information when my infant son’s blindness was diagnosed. Ms. Groneberg and I faced parallels in some of our thinking processes, and one of those was a constant re-interpretation of life metaphors.
The Holland metaphor in her title comes from an essay by Emily Perl Kingsley describing the paradigm shift when a baby is diagnosed with a disability or other life-altering condition. The well-known essay likens the thought process to planning for a vacation to Italy, only to find yourself in Holland instead. The destination is still beautiful, but it’s totally different from the original plan.
I’ve never been a big fan of the Holland essay and metaphor, although I knew at least one mom who posted it on her refrigerator as inspiration. Rather, I likened the challenge to expecting a car with automatic everything and then getting a manual transmission instead. The driver has to learn to shift gears quickly and smoothly, both literally and figuratively.
Groneberg hears and adapts other metaphors to her own experience. “Kids are like sandpaper” didn’t quite make sense at first. Did it mean raising kids is rough? Wears you down? Eventually she takes a more positive angle on this one, seeing her child as the sander who smooths out her own rough edges as he grows.
Groneberg’s journey with Avery paralleled my journey with Amigo in several ways. I kept nodding as I read, thinking, “Oh, I remember going through that.” But I also remembered that the first few years were the easy ones. Babies are babies, even when they’re disabled. Her twins’ story might be more interesting as they grow up, are forced to face their differences, and the biases toward Avery and his Down syndrome become more overt. Going through the IEP process, making transition plans, looking into job training, and more await the family in the years ahead.

My hope for the Groneberg family is that they will love and cherish all three of their children for themselves, their strengths, and their unique individual traits. Despite the difficulty of the first few years, I hope they can see their glass, however fragile, as half full rather than half empty.

For more discussion of this book and others, go to MotherTalk Book Talks and Salon.

MotherTalk provided me with a free copy of this book in order to read it and review it. If you’d like to read it, leave me a note in the comments that includes your email or a link. I’ll mail it out to the first interested commenter.

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>To sleep, perchance to dream

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Amigo and I were traveling somewhere in a big city, but I didn’t recognize the place. I just know it was a big city and vaguely familiar. We stayed in an old-fashioned red-brick hotel that felt homey, almost dormlike. By day we kept going from one place to another using different forms of transportation: cab, bus, walking, even a boat at one point. Once in a while we’d retrace our steps to go back to another place, say, for lunch or to get something we’d seen earlier. As the dream progressed, he kept losing his white cane. I’d have to be his sighted guide and walk him quickly, almost drag him, back to wherever we’d been to find and retrieve his cane so that we could go on. This happened multiple times, and by the time I woke up I know he had asked to be carried and I’d said yes. To envision this scene, you need to know that he is four inches taller than I am and at least as heavy.

When I woke up, I shook the cobwebs from my head and got started with my morning routine.
When Amigo woke up, he was shaky with discomfort and pain, asking for a bucket because he felt like throwing up. Again. Still. He stayed home from school and visited the doctor again.

Tonight, I hope I dream a solution or better, a cure.

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