Tag Archives: disabilities

>10 Common Traits

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Ten things I have in common with my son, Amigo

1. We’re both disabled. He is vision impaired and has Asperger’s Syndrome. I am hearing impaired. Since he’s a teenager, he would insist that just being a mom is an impairment in itself.
2. We like to go out for lunches and brunches, especially in the summer. this year we’ve tried out several new (new to us) restaurants and diners. We’ll remember those that had Braille menus for him!
3. Both of us have a tendency to get anxious in new and difficult situations.
4. We bond over Trivia. We watch Jeopardy as a family each night. At 15, Amigo can hold his own. He has an excellent memory.
5. Green Bay Packer football! He is a cheesehead through and through.
6. We both love Christmas, even the shopping and wrapping parts, but especially the music.
7. We enjoy the public library. He checks out books on tape/CD, and I pick up whatever strikes my fancy. In the summer we go at least once a week.
8. We like to bake. Okay, I like to bake cookies and he likes to eat them. It works, doesn’t it?
9. Reading. Reading together. ‘Nuff said.
10. I admit it; we share a sense of humor.

He reads my blog, so I’m sure he’ll have to say something about it — when he gets away from Youtube and gets around to reading it, that is. 🙂

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>Blog Blast with a Cause

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>iBakeSale is a unique new fundraising option for people who shop online. It’s simple; sign up, designate a charity or nonprofit group, and then shop. When you’re shopping your favorite online merchants, go through iBakeSale in order to funnel funds their way.

I’ve become a regular online shopper, and for safety’s sake I tend to stick to vendors and merchants I know. This list of links appeals to be because it includes well-known names such as Lands’ End. Linens and Things. Delia’s (a favorite of my college-age daughter). NFL Pro Shop, too (as if I needed more Green Bay Packer clothing!).The list goes on and on, and in fact can be intimidating in its length, so I prefer to click on “Select Category” and get a more focused display.

Now, here’s the fund-raising part. Click on “Select an Organization” to direct your donations to a meaningful source. I chose the Wisconsin Lions Foundation in Rosholt, Wisconsin because my blind son spends a very happy week at Lions Camp every summer and our local Lions have been very generous whenever we’ve asked for assistance. (They make great buffalo burgers at Octoberfest, too, but that’s a matter of personal taste. Yum.)

Here goes. To join iBakeSale, click here. Create an account, and then choose a group for your donations. I’d love it if you’d choose the Wisconsin Lions Foundation, but I hope you’ll look for other groups that are close to your heart. You can sign up a new organization, such as your children’s school PTA, as well. Go for it, folks; sign up before you start your Christmas shopping!

Please note: There is a prize involved for the blogger who gets the most sign-ups by August 7. My readership is small, so I’m not expecting to win. The only benefit for me would be to see people sign up to send a bit of their shopping money toward a good cause. I do not earn money through this post.

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>So…will you be having any more children?

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>People think they can ask new moms that question, especially if the baby isn’t the firstborn. If the child is the newcomer to a large family (define large at any number you wish), folks might ask that with a laugh or with a semi-serious “how could you have more than the statistical average?” attitude. Either way, it’s what the late Ann Landers would have called an MYOB — a Mind Your Own Business.

When there’s a disability in the mix, the questions and the disapproval grow exponentially.

I am hearing impaired. It may or may not be genetic; I don’t know. There is no medical indication of the precise cause. I focus on treatment: hearing aids, training in lipreading, and the like. Most important, being hearing impaired doesn’t disqualify me from bearing children or raising them.

My 15-year-old son, “Amigo”, is blind and is on the autism spectrum. His vision impairment is genetic. Both Husband and I carry the gene for this autosomal recessive condition. No, we didn’t know it, but it’s really nobody’s business but ours. Our daughter, “La Petite”, may or may not be a carrier of this trait. It will only matter if the man she marries is also a carrier. Given that there is no test at this time (although there is a study in progress), she might never know. Should she have children, knowing that they might be blind? MYOB, turkeys. She’ll make that decision. she knows more than anyone what it means to live with a blind person.

So…will you be having any more children? Or the other question: since you know your children might be disabled, will you have any more? Most of the time, I greeted that question with a blank stare. It really didn’t deserve an answer. A business-style card that says, “Mind your own blankety blank business” would have been handy.

Well, new moms and moms-to-be, if you get that intrusive question, don’t you wish you could just hand them this? Then you won’t have to answer. Your questioners didn’t deserve your time, anyway.

This Blog Blast brought to you courtesy of the Parent Bloggers Network. Click here to read more on the same topic.

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>An open letter to Robert F. Kennedy, Jr.

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>Dear Mr. Kennedy;
I was concerned with the tone of your recent article on The Huffington Post. I speak as the mother of a child on the autism spectrum, and I also speak as a teacher. Frankly, your writing was inflammatory and biased. Here is my professional assessment.
You chose to use dramatic vocabulary such as “brain-killing poison” rather than defining such chemicals or citing actual resources and studies. You referred vaguely to “patronizing” and “poisonous” attacks on a specific group of people (mothers of autistic children who espouse a particular viewpoint), but you did not support your point of view with details or examples. Leaning on your own personal experiences, no matter how extensive those conversations, emails, and letters, does not prove a particular side or argument correct.
By describing Katie Wright and her group as “calm, grounded, and extraordinarily patient….highly educated…” you managed to imply that parents who disagree must be otherwise. By claiming that “…a rational person might do some more investigation”, you again imply that those who disagree must be irrational and have not done their homework.
The only source you quote is your own personal web site. Where are the “hundreds of research studies from dozens of countries…” to which you allude? Where are the links to the other research, that which you call”flimsy” and “borderline fraud,” part of the “…campaign of obfuscation and public deception”?
The piece is, quite simply, poorly written. It is laden with assumptions, name-calling, and emotionally charged words. It is missing research, references, and “dispassionate and diligent investigation” of its own.
Grade? D minus. Mr. Kennedy, in order to be convincing, even opinion needs to be backed up with facts.
Sincerely,
Daisy

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>Fragile, hope shatters

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>Benjy didn’t make it. Amidst the many missing persons stories on tonight’s news came this update: Seven-year-old Benjy Heil’s body was found in a creek less than a mile from his home.
So many searchers, so many caring people — and such a sad ending to this story.
My heart goes out to his parents, his siblings, his extended family, his friends.

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>Hope can be fragile

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>Benjamin “Benjy” Heil went missing Thursday night from his rural home in Saratoga, Wisconsin. Searchers, including local people, officials, and even bloodhounds, have been scouring the area for any sign of him. His footprints were spotted, and someone found a ball that may have been his, but other than that, Benjy has been gone from home in this hot, muggy, stormy weather.
Benjy has autism. He is somewhat nonverbal, from reports, and will not respond to his name. Searchers will have to make visual contact to know they’ve found him, since he will not answer their calls.
This story is scary on so many counts. Any seven year old is in danger if he’s been missing for four days and nights. He is lost in rather unforgiving territory, too. Within walking range of this young boy, last seen barefoot and in shorts and t-shirt, are a campground, woods, and the Wisconsin River, not to mention bogs and marshes.
I keep hoping he’s holed up in a doghouse, shed, or hunting cabin. I don’t like to think of the river.
Keep searching, people. And Benjy’s parents: please keep hoping. I’ll be thinking of you and hoping, too.

update: While not precisely good news, at least it’s not worse news. Searchers have almost ruled out the possibility of Benji’s falling in the river. They believe he’s on land.

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>Mother’s Day Blog Blast — a party without the scary clowns

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>What makes a mom? Or a dad? What makes a parent? That’s the topic posed by the Parent Bloggers Network and Light Iris today.
The easy answer is this: It’s different for everyone.
The personal answer is: It’s different every day.

You know you’re a mom when:

  • You take the child’s fancy bike to a fancy bike shop for a safety tune-up, and he announces loudly that you bought your own bicycle at (gulp) Fleet Farm.
  • You take your personal day from work to drive five hours, round trip, to pick up your college student’s aquarium and fish. That’s fish, singular. Not plural. (and please note: I enjoyed the entire drive and visit!)
  • You spend the day with a group of youngsters at your daughter’s high school and marvel at the idea that she’s no longer there: she graduated two years ago.
  • You exchange worries with another mom while secretly thinking, “Wow! I don’t worry as much as she does!”
  • You call home to leave a message that you’re stuck behind a train and will be home any minute, just in case your disabled child’s bus gets home before you do.
  • You learn to text message, email, and use IMs — and you’re a Baby Boomer
  • You don’t worry if your computer crashes; the kids will be home soon.
  • You actually like fruit snacks and yo-gos

You know you’re a parent when you come to enjoy and look for the little contrasts in life. For example:

  • the 9 year old shopping for Beanie Babies and bras
  • the 15 year old with the rapidly deepening voice, who snuggles the cat he made himself at build-a-Bear workshop
  • the 20 year old who types out a three page list of instructions for fish care, but forgets to send the fish food home with you
  • the kid who moans and groans about how you make him work too hard, but then labels you as “nice” in his Spanish report on his family

What makes you a mom? A dad? A parent? Too many variables play into this. I’ll just tell you this: you’ll know. Trust me, you’ll know.

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>I Eat Pizza

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>That’s what Amigo used to call his IEP meetings. In reality, it stands for Individualized Education Plan. I had mixed feelings before, during, and after the meeting. There were good points, the best of which was Amigo’s participation, but the process was still stressful.
I am lucky that I speak the lingo. Teachers tend to talk in initials, and those initials don’t always make sense to people outside the field. DVR, for example, in this case meant Dept. of Vocational Rehabilitation, while Husband knows DVR as Digital Video Recorder. Luckily, he is comfortable saying, “Translate, please.” The OT/PT consult, VI staff, and LEA, not to mention the S/L referral, O&M, Aut, SPE (formerly APE) and SLD cross-categorical, all combine to make it sound like a foreign language, when it’s really just another set of technical lingo.
Now that the meeting is over, my neck is less sore, my head doesn’t ache quite as much, and I feel a little less stressed — until we reconvene in two weeks. Oh, my, pour me a gin and tonic just to cope with thinking about it. Bleah.
As long as we’re not dealing with the PSL.

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>May Day and Blogging Against Disablism Day

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>Disablism? What’s that? It’s another -ism, another indication of discrimination, subtle or overt, in the same family as racism, sexism, and others. I’m not sure who coined the term or if it’s even in use outside the blogosphere. Here’s my definition.
Disablism. n (dis-ab-lizm) an active prejudice or discriminatory attitude toward persons with disabilities.
I’m hearing impaired, and I’m a teacher. And yes, I’ve encountered discrimination in my field. It’s not important to rehash the difficulties I’ve faced; it’s more important to remind people that disabled people are just that — people — and are not solely defined by their disabilities.
My teenage son, Amigo, is blind and has Asperger’s Syndrome. We’re quite a pair. When we go to a restaurant, I often read him the menu (if they don’t have one in Braille), and then he helps me order because I might not hear the server’s questions above the din of the dining room. We have typical parent-child moments, too. He likes the TV loud. I keep saying, “Turn it down! If I can hear it clearly, so can you!” He tells me when a timer goes off or the dryer buzzes, just in case I’m not close enough to hear it. He doesn’t get the laundry out himself, darn it. I guess the teenager part trumps the helpful.
Sometimes he and I need small adaptations, “reasonable accomodations”, to achieve our goals. I need a phone that’s hearing aid compatible; Amigo needs screen-reader software for the computer. But hearing or sighted, if you were playing Trivial Pursuit, you’d want Amigo and me on your team. We’re good. Very good.
But folks, we’re people. We’re good, capable, intelligent people. My disability is part of me. I am a good mother, a good teacher, an intelligent learner. Amigo’s disabilities are part of him. He’s a delightful and talented young man.
Disablism? Forget it. Don’t waste your time looking down on us — because it is a waste of your time, and ours.

Blogging Against Disablism Day, May 1st 2007

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>Save my Sanity, please.

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>Sanity Savers: tips for women to live a balanced life by Dr. Dale Vicky Atkins, is the latest title on the BlogHer Virtual Book Tour. My usual books fall into the categories of escapist fiction, professional reading, and news/current events. Sanity Savers didn’t fit readily into these, but it still caught my attention. When the short preview mentioned the everpresent juggling act, I knew I had to read it.
Sanity Savers is written in a unique format with entries divided into days (five weekday entries plus a weekend) and subject headings that remind me of blog post labels. Readers can approach the book one day or week at a time or search for a particular heading of interest. Subjects include parent, friend, community, well-being, and more.
Most of her advice is concise, rational, and thoughtful. Some entries focus on specific and concrete events (moving with kids) and others are more general or abstract (going through sorrow, creating a peaceful workplace).
Skimming through the headings, I found a few entries on disabilities. Some spoke to the perspective of parenting a disabled child; one offered suggestions for dealing with disabled peers. None, however, spoke to the perspective of being a disabled adult woman. Dr. Atkins deals with so many angles; why not this one? I am a professional (a teacher), a mother, a wife, and hearing impaired. I know I’m not alone as a self-sufficient disabled adult, and I do buy books — lots of books.
Sanity Savers has valuable advice and a positive outlook on life. I hope that Dr. Atkins will consider addressing the lack of disabled and capable adults in future books.

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