Tag Archives: disabilities

>Illness doesn’t have to be pandemic to matter.

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>The annual IEP (in Amigo’s words, the I Eat Pizza) went reasonably well. Amigo at 16 has become much more self-confident in these meetings, and he handled quite a bit of it himself.

We went out for supper, decompressed, came home. Amigo did his homework, took his evening meds (for acne and for anxiety/tics), and went to bed. Almost exactly an hour later, he threw up.

We are the type of parents who analyze, worry, and then analyze and worry some more on the way to our decisions.

Analysis: his IEP caused him stress and anxiety.
Worry: Maybe his stomach wasn’t fully healed from its recent illness.
Analysis: The acne medicine upsets his stomach. He tossed his cookies about an hour after he took it.
Worry: Maybe we should call the doctor and ask for a change in meds.
Analysis: Being sick scares him. His Asperger’s style logic doesn’t let him calm down and heal.
Worry: This adds more anxiety, which upsets his stomach more. Again.
Analysis: He was exhausted and lacked appetite already on Sunday.
Worry: Was this a sign? And we missed it?

Decisions:
Keep him home for a day, let him rest, feed him bland foods, monitor (and analyze and worry) throughout the day. If he’s up to it, we’ll shop for a low-dose over-the-counter antacid. We’ll re-introduce the meds slowly, on a full stomach, well before bedtime, after consulting the doctor.

Upon further analysis, his illness continued for days, weeks, and eventually months. The local pediatrician referred us to the Big Children’s Hospital for a specialist and heavy duty testing. Amigo went through a week of gathering lab samples, only to have to do the tests over because the local hospital’s lab didn’t like the Big Hospital’s containers. These tests (you guessed it) showed nothing new, eliminated nothing from the list of possibilities.

Next up was a three day stint.
Day 1: prepare for tests.
Day 2: Travel to Big Children’s Hospital for Day Surgery, as the tests take place under general anesthesia.
Day 3: rest, resume some normal eating, rehydrate. Maybe, just maybe, start doing homework.

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>Politics — as usual?

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>It’s election day tomorrow — and IEP day for our family. This means Husband and I will plan ahead to get our voting done early, before we go to work, before we leave our respective workplaces to go to Amigo’s IEP.
We have concerns. He’s doing well in some areas, not so well in others, and we worry. It’s what we do. We ask questions that are not always easy to answer.
He has a Behavior Intervention Plan. How and when was that distributed to staff members who work with Amigo? (We know the answer to this one.) How can this be handled better in the future?
Are Braille materials available on time? (I hope for a yes answer, but I’m afraid it’s inconsistent.)
And the one that has us really worries now: He’s sixteen. We’re looking for transition plans and job training. So far, Amigo has signed up (with our help) for a job-training camp next summer, but we haven’t seen anything remotely related coming out of the school team.
After the meeting, we usually stop at a nearby, locally owned fast food joint for supper.
Amigo calls it an I Eat Pizza. The meeting, not the restaurant.
I’m glad he maintains a sense of humor. We’ll see how well I maintain mine. It’ll be easier if the line at the polls isn’t too long in the morning. Long enough for a good turnout, just not so long I lose before-school preparation time at my desk.

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>Politics as usual — or not?

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>I don’t live in New York.

That said, New York politicos often get a lot of press, even out here in the thawing and muddy midwest.
And the dark cloud over Eliot Spitzer has spawned a silver lining: David Paterson.
It’s exciting to see an African American take the leadership of an important state. To me, it’s even more exciting to see this talented and intelligent blind man take on this leadership role. Attention all nay-sayers and condescending sighted folk: Watch him in action. You’ll see his skills are not dependent on twenty-twenty vision, but intelligent thought and professional experience.
Apparently, if I’m reading between the lines correctly, he’s a large-print reader rather than Braille. I have no indication whether he uses a white cane for mobility or not. but the major message in his position is this: A blind person can be successful. Very successful. Hard work plus talent placed Paterson in the right place at the right time to take on a very challenging position. All indications are that he will handle the responsibilities well.

And as a hearing impaired adult and mother to a blind teenager, I send my congratulations. Please excuse me if I cheer loudly for a little while, too.

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>Simplify? Easier said than done.

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>Save, share, simplify. It’s a little like reduce, reuse, and recycle: it’s a good slogan, but it takes effort to put it into practice.
Our school holds a sale of used books to help fund their trip to camp. The books are donated, so the sale is 100% profit, and the kids and parents who buy are happy because the prices are low. It’s a win-win.
We swap DVDs with friends and family instead of renting. Yes, it means we buy our favorites (or receive them as gifts) in the first place, but we only buy movies we really like. The best part? No overdue fees.
The simplify piece is the hardest for me. I’ve been cleaning out rather than saving lately. Old books go to my classroom collection or to the school sale. Children’s toys went into the rummage sale last August, and since then more have gone to Goodwill and the thrift store.
Lack of storage space gives us trouble when saving. Our aging Victorian home was built with few closets. We’ve added a linen closet and revamped our own bedroom closet spaces. We tuck a few things in the attic, but it’s not very big, either.
So I might look into the new Zwaggle, a site for parents who want to do their share to give back, both to the environment and to others. My question will be: are there other families with teens, especially disabled teens? I’ll be looking for Braille items this time around or a source that would like some of the Braille books Amigo has finished. They’re too good to throw away, but they take up enormous amounts of space that we just don’t have.

This blog blast suggested by Parent Bloggers Network and Zwaggle. New members who sign up through the invitation link (above) will get extra Zoinks, or Zwaggle points.

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>Teachers often talk about “attention-getting behavior,” mainly negative behaviors that develop in an attempt to gain center stage when the positive attention isn’t sufficient. But what happens when the attention-getting behavior is developed and sponsored by a major university?
The Child Study Center at NYU recently worked with a major advertising agency to create billboards that they felt called attention to child and adolescent psychiatric and learning disorders. Nicknamed the “Ransom Note” campaign, the billboards displayed ‘notes’ like this:

“We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.”
“We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It’s up to you now…Asperger’s Syndrome”
“We have your daughter. We are making her wash her hands until they are raw, everyday. This is only the beginning…OCD”
“We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD”

These ads spurred an activist movement that surprised their creators and sponsors. Autism advocates mobilized immediately to protest the implied hopelessness and inaccurate perceptions in these “notes”. Bloggers like Kristina of AutismVox and Vicki of Speak Softly stepped up, spread the word, and eventually were quoted in the New York Times. I read great posts by Mom-nos and Dr. Joe, both parents of children with autism. If you follow the trail from these four, you’ll find many, many more blogs that addressed the topic — written by parents of children with autism and adults with autism and Asperger’s Syndrome.
The campaign has been abruptly halted because of the negative responses. Dr. Harold Koplewicz, head of the Study Center that initiated the Ransom Notes campaign, made a public statement of apology, ending it thus:

“…Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children.

“We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.”

Well, as the saying goes, the road to you-know-where is paved with good intentions. Gaining the public’s attention by using shock isn’t a new tactic in advertising, whether commercial or public service. Autism isn’t new, either.

But considering that awareness is the lowest form of knowledge, far behind comprehension, application, and analysis, shouldn’t any public relations campaign be far better quality than this one? The autism movement has moved well beyond the awareness stage. Any major attention-getting ideas should be beyond that stage, too.

But you know what I say, “Should” is a bogus word. It’s meaningless, really.

I wonder what kind of “ransom note” they’d come up with for a hearing impaired mom, happily married, well-educated, professional, raising a teen and a college student? If you haven’t guessed, that’s me. And don’t bother with negative attention-getting behavior, either. I’ve taught too long to fall for that.

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>The Sandwich, and I’m not talking turkey

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>Husband is caught firmly in the role of Sandwich Generation. He is caring for his family and his children, as always. but now he’s adding the role of advisor to his parents.
Father-in-Law has had both knees replaced, and doesn’t walk well. He still insists on mowing the lawn and using the snowblower and other chores, but now he’s reached a point where it’s simply not safe.
He had back surgery a few weeks ago, and the doctors couldn’t discharge him afterwards because he wasn’t able to physically care for himself. He went instead to a rehab wing to undergo physical therapy and more basic training.
Husband helped out by handling a few chores (lawn mowing, etc.), but one of the biggest things he did was attend a progress and planning meeting for his dad. I don’t know what these meeting are called in senior citizen language, but in education we call them Individualized Education Plans, or IEPs. Just before he left to meet up with his parents at the rehab conference, Husband realized that it was, indeed, just like an IEP. Therapists, present level of performance reports, evaluations, goals — the whole thing sounded extremely familiar. But we’ve done this for our child, not for our parents.
To make it tougher, F-i-L has been grumpy as all get out since moving into rehab. He’s in pain. He’s facing major life changes. He is finally being forced to confront the denial he’s maintained for years about his health and his future. His child is taking care of him instead of vice-versa. He has trouble expressing himself on the big issues, so he complains about the little ones. He hates the food. His roommate hogs the bathroom. The serving staff takes away his meal trays too soon, rushing him. He’s bored and has nothing to do. Oh, did I mention he hates the food?
We understand how he feels and why he’s acting this way, but it still grates on our nerves. Husband and Mother-in-Law are getting the worst of it.
The next step in the process will be finding an appropriate apartment or condo for them. F-i-L needs assisted living; M-i-L doesn’t. He needs to use his walker, so the place needs to be handicapped accessible. Household chores and repairs are not realistic for him. Lawnmowers? Uh-uh. Ladders? Not a chance. In case his health worsens, we need to look for a place that can accomodate his medical needs.
Then? We’ll help them pack up and move, including selling their home and cleaning out 50 years of accumulated possessions and memories.
I’m not sure which step is going to be the hardest, but I know none of it will be easy for them or for Husband.
If the saying is true, that you are what you eat, hand the man a sandwich. Make it a good one; he’ll need a lot of endurance for this marathon.

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>The LoveSac Quarterback

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>Amigo is a sports fan in a major way. He’s my child, so he enjoys pro football and cheers loudly for the Green and Gold any given Sunday. But he’s developed interests of his own, too, beyond the NFL Network that his mother would love to add to the cable package.
On Saturdays, he watches college football. But wait — it’s not as simple as you think.
Early in the week, he finds a web site with the week’s (and weekend’s) college football television schedule. Husband or I sit down at the computer and copy the schedule into the translation software so that it can be embossed, or printed in Braille. Amigo puts the finished schedule in a designated Schedule Binder, and then he’s ready.
On Saturday morning, after squandering a perfectly good hour listening to Car Talk on public radio, he’ll dress, come downstairs, and examine the day’s outlook. He eventually settles into the LoveSac Rocker with his schedule binder on his lap and the remote control by his side and watches as many games as he can. He’ll stick to one game for a while, then switch to another later on. How many games does he eventually watch? I honestly couldn’t tell you the total.
He tells me about on-field drama and big rivalries. He can flawlessly identify the names of every stadium — look out, Jeopardy! When the opportunity presents itself, he takes a half-time computer break to check his email and search for a few game highlights on the web.
Meanwhile, I kind of co-exist in the house. I work on laundry, do any necessary schoolwork, and at times turn off my hearing aids and nap. I trust that he’ll wake me to make supper if he’s hungry.
Husband? Well, he’s working this weekend — on the sidelines of the Packer game.

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>One — two — Three foods. Bwa-ha-ha-ha-ha=ha!

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>When Amigo was young, he had a three-sectioned plate that helped him learn to eat independently, despite his blindness.
As he got older and received his other diagnosis, Asperger’s Syndrome (a high functioning disorder on the autism spectrum), he continued to insist on exactly, precisely three foods. No more, no less. Three.
He outgrew the need for a sectioned plate long ago, but we have learned a new vocabulary to go with his obsession with three foods. “Honey, let’s make jello. It’s a good Third Food.” “So, if we serve this with that, what’s the Third Food?” “Can I finish up the zucchini bread for a Third Food?”
Pork chops with mashed potatoes and applesauce equals three foods.
Minestrone soup equals one.
Chicken with a side of rice, and beans = three foods.
Chicken rice casserole = one.
Spaghetti with meatballs = two foods.
Spaghetti with meatsauce = one.
You may be getting the picture. If two foods merge, such as a casserole or soup, they are One Food. If they are served separately, count each one on its own.
Amigo has matured emotionally as well as physically, and now that he’s fifteen, he’s not as picky. He can let go of the Three Foods Rule on special occasions or when we go to restaurants. He’s starting to accept modifications that bend the rule, such as a pickle as Third Food or a slice of bread (Mom’s homemade, of course) for a side dish with Mom’s Fantastic Chicken Soup or Good Wisconsin Crock-Pot Chili.
Thanksgiving should be fun. He’s willing to go beyond his usual Three. He’ll even help me cook the 1-2-3 Cranberry Sauce!

This blog blast is sponsored by Harper Collins, publisher of Deceptively Delicious, and the Parent Bloggers Network.

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