Thursday, June 30, 2011

A Desecration of Life

Her sentence was handed down this week and it was a "lenient" 5 years in prison.

The judges at her trial felt sorry for her and believed she was "despairing of life."
A Chinese official connected to the case said what she did "caused only relatively small harm to society."

She was a mother who gave her twin 13 year old sons water laced with sleeping pills, and then she drowned them in a bathtub. After killing her sons, she dressed them in new pajamas.

The twin boys had been born prematurely and were diagnosed with cerebral palsy.

Even though Chinese courts usually deal harshly with murderers and sentence them to death or long prison terms, they felt sorry for this mother.

The mother had given up her job to care for the twins after finding it difficult to hire nannies. Her husband forgave her of the murders because after the death, they would no longer have to consider filing bankruptcy.

One of the judges is quoted as saying, "She deserved the lenient sentence. The murders resulted from years of mental burden."

The mother is quoted as saying, "I just wanted them to leave quietly."

But not to worry, this "caused only relatively small harm to society."

Wednesday, June 29, 2011

Special Exposure Wednesday

Last week it was the best baked beans I had ever had, and this week Ronnie made peanut butter fudge. I think this kid is a keeper, don't you? (And a very special thanks to the cooking instructor, Chip!)

Tuesday, June 28, 2011

Hilarious...Sort Of

Two weeks ago, the receptionist from Ronnie's dentist office called to let us know that it was time to make his next dental appointment. I was at work, but Chip answered the phone. The receptionist asked for Ronnie.

Chip said, "He's deaf."

The receptionist apologized profusely, and just kept saying, "I'm so sorry." Chip thought it was a little strange, and so did I when he recounted the conversation to me. But we're both used to people making strange comments when confronted with a person who has a disability, so we just shook our heads and didn't think anymore of it.

Two days later, I called the office to schedule the appointment, and was given 10am yesterday.

Chip took Ronnie yesterday morning, and when he arrived was told that Ronnie didn't have an appointment. He texted me, and I assured him that I had spoken with someone at the dental office, and we did indeed set up that time. The receptionist insisted that we hadn't, and said the doctor couldn't see him at that time. I asked Chip to just reschedule, and that's when the 'mystery' was revealed.

During the initial phone call when Chip said Ronnie was deaf, the receptionist thought he said 'dead.' Ronnie was marked deceased in their files, and thus the appointment didn't show on their schedules. It then became very clear why the receptionist kept saying how sorry she was during the phone call with Chip.

The dentist did decide to see Ronnie yesterday morning, perhaps feeling very bad about marking him as 'deceased' in their file. As least we didn't have to reschedule!

Monday, June 27, 2011

Shiny Happy Faces!

If you were to stop by my house any time day or night, you would probably notice that my carpet glitters. Pretty colors of red, gold, silver and blue twinkling up from most of the rooms in the house. Blame it on Ashley!

Ashley likes to always have something in her hands, and for the longest time, her favorite thing has been wires with glittering stars attached. The sales clerks at Michael's craft store look at me funny when I purchase 20 strands at a time, but Ashley goes through them pretty quickly.

She twists and turns them, making different shapes. She pulls them apart and starts all over again. Then, she will take several of all different colors and weave them together. Eventually the wires will get so tangled that she sets them aside and starts anew with other wires. Thus the 20 I buy on each trip to Michaels.

Even though the wires come with the star glitter attached, Ashley doesn't want the stars on the wires. She wants it on the floor. So now you know why my carpet glitters!

Yes, it means my carpet never looks perfectly groomed (is carpet groomed?). But the glitter makes Ashley happy and when Ashley is happy, so am I. Our house becomes a magical place with shiny, glittering floors and her happy smiles and giggles. How could I let a vacuum take all that away?!

Friday, June 24, 2011

Funny Friday

I love to end the week on a positive note, especially if it makes me laugh uncontrollably. This post does that. So take a look and have a very happy first weekend of Summer:

Learning to Pick Your Battles

Thursday, June 23, 2011

There Sometimes Are Stupid Questions

I get this question so many times and never have I understood it:

Does Ashley go to school?
I'm thinking to myself, "What a stupid question. Of course she goes to school. I think it would be against the law for me to not send her to school."
What I answer to the person, "Yes, she goes to school."

Oh, is it a special school?
I'm thinking to myself, "Of course it's a special school, my sweet Ashley goes there."
What I answer to the person, "It's our neighborhood school."

Really? With all the other kids in your neighborhood?
I'm thinking to myself, "Why wouldn't she go with all the other kids?"
What I answer to the person, "Yes, with all her friends from the neighborhood."

Well, isn't that special. It's wonderful they let her do that.
I'm thinking to myself, "Idiot, what an ass you are."
What I answer to the person, "Actually, it's wonderful that Ashley lets all her friends go to the same school as she does. She's very particular about the company she keeps."

Awww, well she's so sweet.
I'm thinking to myself, "And you are not someone I want to converse with any further. What a jerk."
What I answer to the person, "Yes, she is very sweet."

One of these days I may consider taking the time to explain to one of the questioners why their belief system is wrong. But then again, they probably wouldn't listen.

Wednesday, June 22, 2011

Special Exposure Wednesday

Wondering what to do with your teens over summer break from school? Put them to work making dinner! Ronnie made us some wonderful baked beans - the best I've ever had - for dinner Monday night.

Tuesday, June 21, 2011

Ruh Ro

Now what?

When Ronnie came home from the baseball game last night, we noticed that his wheelchair was broken. There is a bar that goes behind the seat and connects to the two vertical bars where the handles are.

That bar broke off!

How in the world does something like that happen? I've called the company we bought it from, and they are supposed to have their service person give me a call. But something like this is a huge inconvenience to a person who relies on a wheelchair.

Monday, June 20, 2011

A Silent Reminder

Do you have a child who needs to remember to do things multiple times during the day? Maybe it's to check blood sugar, or to take medicine, or to cathe. If so, I have a great solution to help make your child more independent with those tasks.

My son, Ronnie, needs to remember to cathe every three hours. It's very important to his health, and being even 30 minutes late can make a difference. But, he doesn't like having an adult have to remind him. He is 16 and especially doesn't like having his teachers or the school nurse remind him in front of his peers. But like most teenagers, remembering something is often difficult. So I have the solution!

The Vibralite 8 watch looks just like any other watch that Ronnie's peers might wear. But on this watch, eight different alarms can be set. And the alarms do not have to be audible - they can vibrate.

So Ronnie has his watch set for 7am, 10am, 1pm, 4pm, 7pm and 10pm. He feels the vibration, asks his teacher if he can be excused, and then tends to the cathing himself without the intervention of a teacher or school nurse.

This is HUGE for a teenager in school!

And what's even better, the watch only costs about $65 on Amazon. I'm used to assistive technology devices always being way overpriced, but this isn't. The quality is good and Ronnie is thrilled!

Check it out!

(I have not been asked to do a review by the company that makes the Vibralite 8 watch. In fact, I don't even know what company does make it. I just know that it is a simple solution for Ronnie.)

Friday, June 17, 2011

Oh Rosemary!

Ahhh, Summer... Evenings spent on the patio, watching the boys play backyard baseball, swatting the gnats, and smelling the neighbor's barbecue. What better time to enjoy a unique iced beverage.

The beverage of this summer is the Rosemary Citrus Spritzer, made with rosemary from my herb garden. Here is a picture taken on my deck railing and the recipe follows. Happy Summer!

Rosemary Citrus Spritzer
Makes 10-12 drinks

2 lemons
2 oranges
4 (4-inch) sprigs fresh rosemary
3/4 cups sugar
1/4 cup honey
Soda water
Rosemary and lemon for garnish (optional)

Peel off thick strips of zest from 1 lemon.

Juice the lemons and oranges into a liquid measuring cup – you should have about 1 cup of juice. Top off with water if necessary to make 1 cup.

Combine zest, juice, rosemary, sugar, and honey in a saucepan over medium heat. Boil for 1 minute, stirring constantly to dissolve the sugars.

Remove from heat and let sit 10 minutes. Strain, discard solids, and let syrup cool completely.

To serve, fill an 8-ounce glass halfway with ice cubes, add 2-3 tablespoons syrup, fill with soda water, and stir. Garnish with rosemary sprigs and/or lemon slices, if desired.

• Use 1 cup lemon juice and omit oranges.
• Use 1 cup sugar and omit honey.
• Add a splash of gin or vodka to the glass.

Thursday, June 16, 2011

Moving On

I knew this day was coming but I really hoped that it wouldn't.

Ashley has LOTS of ear infections, and always has. Through the years, she has also developed cholesteatomas. Cholesteatomas are destructive and expanding growths consisting of keratinizing squamous epithelium in the middle ear and/or mastoid. They often occur with frequent ear infections, and they must be surgically removed.

She has had surgery four times to remove cholesteatomas.

She was probably around 4 years old when the 'bubblegum' antibiotic stopped working. We then moved to Augmentin, and that worked well for many years. But unfortunately, it too appears to have stopped being effective against Ashley's ear infections.

The doctors have also tried the 'cef' antibiotics - Omnicef, for example - , and they are ineffective. I had really hoped we wouldn't have to give up on the Augmentin because there aren't a lot of choices.

But here we are - another ear infection - even after two 14 day rounds of Augmentin. It's time to call it quits...

The doctor this time has prescribed an 'adult' antibiotic. I don't know a lot about it except for the fact that it is one that my rheumatologist prescribes for me. It is called Levaquin. I made the mistake of researching it today via Google, and it's pretty frightening. But, it seems to be working and working fast to make Ashley feel better.

I'll keep my fingers crossed that it will remain effective for a long while and will not bring any of the negative side effects that Dr. Google told me about.

Scary situation....

Wednesday, June 15, 2011

Special Exposure Wednesday

It was touch and go until the end, but Corey graduated yesterday. Two down, three to go....

Tuesday, June 14, 2011

Project Search

It's amazing what a change in leadership has made in my school district. When I started this blog four years ago, I wrote many posts about the struggles and challenges of ensuring my children received an appropriate education. I survived complaints with our state department of education as well as a due process. It seemed every year got worse.

Then there was a major housecleaning at my school district's central office.

My recent posts about securing an appropriate education are much more positive. Like I mentioned last week, I'm even sad to see this school year end. And, a news story appeared last week that highlights even further the progress my school district has made.

The story was about something called Project Search -- a program to help connect high school students with Autism with perspective employers.

As parents of children with Autism know, finding employment after school ends is extremely difficult. In fact, according to one of the leaders of Project Search, 86% of students with Autism are unemployed after graduation. But Project Search is changing that.

Take a moment to read this story, and see what a positive difference the partnership between my school district, one of our local universities, and a private employer have made in the lives of eight students.

It's truly amazing what can be accomplished when everyone works together to ensure a good future for our children!

Monday, June 13, 2011

A World of Disability

"15% of the world's population is disabled."

"Some 785 million people have a significant physical or mental disability, including about 5 percent of children."

"Problems are worsened by poverty and dozens of other variables, including stigma, architectural barriers, lack of legal protection, the cost of devices and assistance, and the lack of knowledge by others (especially health professionals) about how to interact with disabled people."

Check out this June 9th article from the Washinton Post for more info....

Friday, June 10, 2011

Sad to See it End

This is the first year that I have been sad to see school end for Ashley. Really..can you believe I just made that statement???

Ashley's teacher is wonderful. She is the first teacher that has ever - EVER - taken a real interest in learning how to effectively teach Ashley. That teacher has also decided to pursue a Masters degree in Reading and Literacy with a focus on students with deafblindness.

Whoa! Sounds almost like the Twilight Zone, or like maybe I am caught in a dream.

The changes in Ashley have been monumental because of this teacher. And, the high school Ashley attends is very inclusive. Yesterday, the PTA gave out tee-shirts to the kids that had the words, "J.R. Tucker, Henrico Countyis Best Kept Secret." And it really is that.

So thank you, Mrs. Marsh. Thank you to all the teachers and staff who have made a difference in Ashley's life. Thank you to the clinic nurse and staff for taking such good care of my daughter this school year. Thank you to the administration for the support you show your teachers and staff, and for knowing personally who Ashley is. I know in a large school that it must be difficult to know all the students, but somehow you make it happen. Thank you to the bus drivers and aides. And thank you, other students, who called Ashley your friend.

We will miss you all, but look forward to September!

Thursday, June 9, 2011

The Power of One's Passion

Even more remarkable than this young man's voice is his story. Get some tissues and have a listen!

Wednesday, June 8, 2011

Special Exposure Wednesday

Don't you just love Springtime!

(picture courtesy of my son the photographer!)

Tuesday, June 7, 2011

The Music All Around Us

So Steve Jobs, CEO of Apple Computing, announced iCloud on Monday. iCloud is rumored (facts not available at the time of writing this post) to be a “digital locker” type service for the storage of music. It may be very similar to Amazon’s recently released cloud storage service for music.

That’s just what some of my kids, and most of their friends need – another reason to keep ear buds stuck in their heads.

I did a very unscientific study a couple of months ago at Chip’s college. Nine out of ten college students that I observed walking around campus had ear buds in.

I love music, and when I was college age, I’m sure I did my share of listening to music. But now I find music in things other than iPods, MP3 players, and yes, even iClouds. I love hearing the sound of birds early in the morning. I love the sound of wind whistling through the trees. I can sit on my porch and listen to the sounds of my neighborhood – doors slamming, cars starting, children laughing – for hours on end. The pfft, pfft sound of the water sprinkler watering my garden brings a smile to my face, and the woodpecker who has lost his way and is banging his head against my neighbors aluminum siding always makes me laugh. I enjoy trying to figure out what kind of insect is making a certain sound, and I am constantly amazed by the incredibly fast fluttering sound that comes from the hummingbirds congregated around my red honeysuckle plant.

And sometimes, I like just hearing nothing – that silence that along with closed eyes can transport me to another time and place.

I worry that my children (the ones who can hear) will miss those things. I worry that their heads and their memories will only be filled with the likes of Will.I.Am, Jennifer Lopez, and hundreds of other musicians, not the sounds of the world around them.

Maybe it’s an appreciation that will come with age, but I want them to have the experience of those sounds now so that their memories can transport them back in time when they are older.

Maybe I just need to hide all the ear buds for a day or so, assuming I could even get them out of their ears!

Monday, June 6, 2011

Just Go Another Way, Why Don't You?

Do you think I can't see the disgusted look on your face?

Or the impatient drumming of your fingers on the steering wheel?

Do you really think that gunning your motor is impressing anyone?

Or that the way you inch forward over and over again will make us all move faster?

If five minutes is going to make you really late for wherever you are headed, why don't you just turn around and go another way?

I know you live in my neighborhood because I see your car at the same time every morning. Haven't you figured out that the bus that picks up two of my children arrives at exactly the same time each morning?

It takes more than a few minutes for my children to get on the school bus. The aide must get off the bus, open the door to the wheelchair ramp, lower the ramp, help my son back his wheelchair onto the ramp, buckle the safetly strap around him, raise the ramp, shut the door and secure it.

Then the aide must make her way back onto the bus while I help my blind daughter find her way to the bus steps. The aide stands at the top, takes my daughter's backpack, then reaches out to help my daughter get on the bus.

Then after everyone is seated and secured, the bus can move.

And you, very impatient, rude person can speed up, just to get more frustrated when the bus has to stop again.

I'm really glad that you are not one of my co-workers, because if you act that way when two children with disabilities are boarding the bus for school, I can just imagine what an a** you are in the office.

Friday, June 3, 2011

Summertime, and the living is easy, or is it?

Only two more weeks and school is out for the summer. Ashley will doing some ESY services but does have two weeks at the beginning of the summer and two weeks at the end with no school services. Ronnie isn't receiving any ESY services this summer.

I really want to make sure that first and foremost neither Ashley nor Ronnie lose any of the skills they acquired during this past school year. It was a great year for them both and their progress was quite visible. But at the same time, I want them to enjoy they summer and do all the summertime things that most kids get to do.

It's finding the balance that sometimes is difficult to achieve.

I know that even things like going to the pool or playing on a sports team can help maintain communication skills over the break. And, I can come up with enough tasks around the house to help maintain their self-sufficiency skills. But what about the academics?

Do you work on academics over the summer with your children? If so, do you have a structured schedule for that, or do you just try to fit it in when you can? And how do you decide what to work on? Is it based on their IEP, or based more on what you feel they can achieve? As we all know, sometimes the school's vision doesn't mesh with the parent's vision.

I know that as a child I was so excited over the summer to have time to just play, to not have to adhere to a schedule, and to explore new places. But I wasn't a child with special needs who needed a schedule, whose skills could regress rather quickly, and who had a tough time maintaining friendships with my peers.

What's your plan for the summer? Do you have things that have worked in the past, or are you going to try something new this summer? And, does your family have any special summer traditions that your children with special needs look forward to each year? Do you feel your children regress over the summer, and if so, is that just something you expect, or do you actively do things to overcome that?

Just wondering....

Thursday, June 2, 2011

An Amazing Young Woman

Are you in the mood for a good cry? Not a sad cry, rather a happy good cry. If so, watch this.

Thanks to my buddy, Lucy at the Life In Forsyth blog for this great video!