Friday, July 31, 2009

Rest In Peace, Dear Man

He was a 1960’s neighbor – the kind of over-the-fence chats for 45 minutes instead of a wave from across the street. He watched over my family while I watched over him. From the window in one of my bedrooms I could see him sitting on his sun porch. When we happened to realize that the other was looking, we would both grin and wave.

When I first met him eleven years ago, his dear wife was stepping towards Alzheimer’s, and he was photographing every moment in his mind. They were both in their late 70’s and had been married since they were 17 years old. They were two hearts and two souls joined in the way the rest of us dream about.

On July 4th several years ago, he lost his other heart, and from that point on his smiles were few and far between. But, they were always there for me and my family.

He needed a little help, and I needed to help. Every time I sent a meal to him, he would return the empty dishes filled with candy for my children. I planted the flowers in his front garden, and he watered them religiously. Together we attended the funerals of other neighbors, and for a special treat, he loved to take my family to lunch at Red Lobster.

In recent years, I watched his health decline, but he stubbornly refused to give in to infirmity. He was hard-headed and constantly told me to stop helping him so much, but I knew he secretly enjoyed the attention and companionship. He remembered what life was like in the slower, quieter past. He remembered a time of neighbor helping neighbor. He possessed the gentleman gene, and although it was difficult for him to rely on others, he eventually realized the need.

Just four short weeks ago, he was diagnosed with brain cancer, an insipid beast that would send him to be with his wife sooner rather than later. The doctors told him there was no hope and that he had two weeks to two months into which to pack the rest of his life. The first week wasn’t too bad. The second got a little worse, and by the third and fourth, he just wanted to go. He was tired, sick, in pain, and feeling like a burden to everyone.

This morning, he got his wish. Mr. Ed Baldwin took his last drugged and pain-free breath at 6:55 am. He was reunited with his lovely wife, Dot, and I will miss him very, very much.

Thursday, July 30, 2009

Thankful Thursday

Summer has finally arrived, and brought with it suitcases full of heat and humidity. Today’s Thankful Thursday list is dedicated to all things cooling!

Today I am thankful…

  • for banana popsicles that drip cold plops of stickiness down overheated extremities

  • for ceiling fans and that yummy burst of cold while standing under one right after a shower

  • for sprinklers watering my garden and my children all at the same time

  • for cold food dinners – barbecued chicken, pasta salad and watermelon

  • for cotton clothes. I can’t imagine wearing anything else, except maybe linen, on these sweltering days

  • for sitting on a wooden dock and swishing feet in lukewarm lake water while little fish swim by and nibble your ankles

  • for homemade lemonade with sprigs of mint from my garden

  • for iced water, iced tea and iced coffee

  • for a car that has a working air conditioner, a full tank of gas, and a satellite radio

  • for the shade of my big maple tree and my covered front porch

What do you do to keep cool in the summer?

Wednesday, July 29, 2009

Special Exposure Wednesday

Swinging is a great way to start the day! Really - just try it one morning and I bet your mood will improve drastically! (Thanks for the great pictures, Miss Amy!)

Tuesday, July 28, 2009

Why So Many Changes?

Ashley has been receiving ESY services for six weeks so far this summer. During those six weeks, she has had three different bus drivers, three different bus aides, three different busses and three different bus schedules. Her ESY hours have not changed – for the entire six weeks she has been receiving services from 8am until noon each day.

I just don’t get it. I will acknowledge that setting up bus schedules during the regular school year is a daunting task. A whole bunch of students have to be delivered to a whole bunch of schools. But during the summer, the numbers are drastically reduced. Why three major changes in six weeks??

As all parents of children with disabilities, especially children with significant disabilities, know, changes are difficult. For a child like Ashley who is deafblind, all the differences are magnified. Each bus, driver, and aide smell and feel different. She can tell when the time the bus arrives is different. She gets anxious when the schedule changes, and changes significantly. For the last two weeks, she was picked up at 7:10am each morning. Starting this week, she is picked up at 7:40am. She is going to the same school and school starts at the same time. So what is up with the significant schedule change?

And I’m tired of having to go through my spiel each time there is a change – “Ashley is deaf. She can’t hear you talking to her. She is blind. She cannot see the steps to disembark from the bus. She has seizures. Here is what they look like. Here is what you need to do and not do when she has one. Yes, she prefers to sit in the first seat behind the driver. No, you may not take away her ball of wires and pipecleaners. Etc. Etc. Etc.”

There are four weeks of ESY services yet to be delivered. Does anyone want to take bets on how many more bus changes and schedule changes Ashley will be expected to handle?

Monday, July 27, 2009

Holding Fast To Our Dreams

This past weekend I spent time with some of our Dreamcatcher families. Dreamcatchers is a state-wide support group for families whose lives have been touched by deafblindness. Formed ten years ago, Dreamcatchers is a 501-3c non-profit organization that relies on grants and donations to exist. We have a board of directors, but they are not paid for their time. All staff time and effort is graciously donated by our families. What that means in these difficult economic times is that our group is almost broke.

Each year in the past, Dreamcatchers has held a family retreat weekend. Bolstered by grants from our state’s deafblind project, our state Department of Education, and our state’s Department for the Blind, we have been able to bring all our families together for a weekend of respite, learning and networking, all at absolutely no cost to the families. In some cases, it is the only ‘vacation’ some of our families get. But we were not able to do that this year.

This year we received no grants from the Department of Education or the state Deafblind Project. And we are waiting to hear if the Department for the Blind will assist. So, we’ve had to change our model of support this year. Instead of a retreat weekend, we are having several day-long events in three areas across the state. Our families never all get together, but at least we are doing something.

Our first of those day-long events was held this past Saturday. It was a wonderful time of fellowship, story telling, advice gathering and celebration. Parents of children with disabilities, especially parents of children with a unique disability such as deafblindness, need a connection to other parents in the same situation. Often it has been the only thing that has kept me going during times of extreme struggle.

We parents need to know that we are not the only ones who celebrate battles won but worry constantly about the war. We need to hear how others have fought insurance companies, school districts, hospitals and other medical practices and restored the rights of their children. We need to know how the everyday struggles are handled, how the sleepless nights turn into exhausting days, and how the smiles on our children’s faces make everything right.

Dreamcatcher families have been doing all this and more for each other for ten years. And even though the economy is kicking us in the behind, we will continue to do it for another ten years and longer. We are watching our children grow into fine adults. We are welcoming new families with young children, and we are rejoicing in the successes of our adult children. And, we are doing it together.

I am grateful for the friends I have made through Dreamcatchers, and grateful that such an organization exists. Here’s hoping and praying that we continue to grow our organization so more families can feel that connectedness.

Friday, July 24, 2009

Happy Anniversary!

Today, Mr. Obama will sign a proclamation celebrating the 19th anniversary of the Americans with Disabilities Act (the exact date is July 26th for the anniversary).

So while you are eating your anniversary cake, read the statistics below from the U.S. Census Bureau. What? You have no cake? Well, there is a great recipe at the end of this post that will make a relatively healthy, very easy, and very yummy cake. It’s perfect for enlisting the aid of your children, regardless of their level of ability.

41.2 million - Number of people who have some level of disability. They represent 15 percent of the civilian noninstitutionalized population 5 and older.

6 percent of children 5 to 15 have disabilities.

12 percent of people 16 to 64 have disabilities.

41 percent of adults 65 and older have disabilities.

15% - Percentage of females with a disability, compared with 14 percent of males.

11 million - Number of disabled people 6 and older who need personal assistance with everyday activities. This group amounts to 4 percent of people in this age category. These activities include such tasks as getting around inside the home, taking a bath or shower, preparing meals and performing light housework.

3.3 million - Number of people 15 and older who use a wheelchair. Another 10.2 million use an ambulatory aid such as a cane, crutches or walker.

1.8 million - Number of people 15 and older who report being unable to see printed words at all or were blind.

1 million - Number of people 15 and older who reported deafness or being unable to hear conversations at all.

2.5 million - Number of people 15 and older who have some difficulty having their speech understood by others. Of this number, 431,000 were unable to have their speech understood at all.

16.1 million - Number of people with limitations in cognitive functioning, or who have a mental or emotional illness that interferes with daily activities. This group comprises 7 percent of the population 15 and older. This included 8.4 million with one or more problems that interfere with daily activities, such as frequently being depressed or anxious, trouble getting along with others, trouble concentrating and trouble coping with stress.

13.3 million - Number of 16- to 64-year-olds who reported a medical condition that makes it difficult to find a job or remain employed. They comprise 7 percent of the population this age.

46% - Percentage of people 21 to 64 having some type of disability who were employed in the past year. The rate ranged from 75 percent of those with a nonsevere disability to 31 percent with a severe disability. For those without a disability, the employment rate is 84 percent for the same period.

59% - Percent of people 21 to 64 with difficulty hearing that were employed. The corresponding percentage for those with difficulty seeing was 41 percent.

48% - Percentage of people 21 to 64 with a nonsevere disability who work full time. This compares with 63 percent without a disability and 16 percent with a severe disability.

$2,250 - Median monthly earnings for people 21 to 64 with a nonsevere disability. This compares with $2,539 for those with no disability and $1,458 for those with a severe disability.

$2,252 - Median monthly earnings for people 21 to 64 with difficulty hearing. The corresponding figure for those with difficulty seeing was $1,932.

12% - The poverty rate for people 25 to 64 with a nonsevere disability. This compares with 27 percent for those with a severe disability and 9 percent of those without a disability.

$28.2 billion - Amount of compensation veterans received for service-connected disabilities in fiscal year 2007.

98.5% - Percent of transit buses that were ADA lift- or ramp-equipped, as of 2006. This represents an increase from 61.7 percent in 1995.

Pineapple Angelfood Cake

1 package angel food cake mix
1 can crushed pineapple in water -- 20 Ounce Can

1. Combine both ingredients in large bowl.

2. Mix on medium speed with electric mixer.

3. Bake in accordance with cake mix box.

If you cut the cake in eighths the following nutritional information apply:

Calories: 204.7
Fat grams: 0.2
Fiber grams: 0.2

W/W Points: 4


Calories: 68.2
Fat grams: 0.1
Fiber grams: 0.1

W/W Points: 1

Thursday, July 23, 2009

Thankful Thursday

Today I am thankful...

  • that it is Thursday and tomorrow is my last work day this week. It's been a rough work week...

  • that Mr. Baldwin, my next door neighbor, is still with us. His brain cancer is progressing rapidly, and he just wants to 'go'. I feel selfish wanting him to 'stay'.

  • for the wonderful sweet, juicy watermelons that are in season right now. I can eat a healthy fruit and feel like I am eating dessert

  • for the Dreamcatcher event scheduled for this Saturday. Dreamcatchers is a support group for parents across our state who have a family member with deafblindness. I'm looking so forward to seeing our friends again!

  • for Ashley's great mood this week! Her ear infection has been treated and she is one very happy camper

  • for Nancy Q., a vocational counselor from our state's Department for the Blind. Nancy met with us this week and has some great ideas on how to help Ashley figure out how she wants to spend her adult working life.

  • that Chip likes to cook dinner on the grill for us! He has done it twice so far this week, and probably will again tonight

  • for tomatoes, tomatoes and more tomatoes! My vines runneth over, and my freezer is getting full. It will be a good winter since it has been such a good summer!

Wednesday, July 22, 2009

Special Exposure Wednesday

A day is perfect when your favorite shoes perfectly match your favorite flowers!

Make sure to stop by 5 Minutes For Special Needs and check out all the other Special Exposure Wednesday shots!

Tuesday, July 21, 2009

What Comes Next?

It’s frightening to have your child approaching the age when they must leave school and know that they are not quite ready for the adult world. Our school systems do not, in my opinion, prepare our children with disabilities to enter the work force. In fact, many studies of children with disabilities say exactly that. One of the studies that was so frightening to me was done by Dr. Jerry Petroff, an expert in the field of deafblindness who wrote “Lessons from a Post-School Study of Youth with Deafblindness.”

So what can we as parents do to change the future for our adult children with disabilities? There are not many good answers, unfortunately, but one which has caught my attention is programs currently being offered by some colleges.

In my city, our local community college has a program called PAVE. According to the PAVE website, “the Program for Adults in Vocational Education (P.A.V.E.) is a vocational training program for adults with mental disabilities. P.A.V.E serves students with mild mental retardation, emotional disabilities and learning disabilities. The overall purpose of P.A.V.E is to provide a post-secondary vocational training program that incorporates functional academic instruction, job skills training and community-based internships.”

Getting into PAVE is not a sure thing. Students still must pass a readiness test, and must meet certain qualifications. But if a student with disabilities is admitted, the whole focus of the program is preparing that student for adult life in the workforce.

Another program which sounds even better is offered at UCLA. Begun two years ago, UCLA’s pioneering Pathway Program has produced its first graduating class. The two-year postsecondary program gives students with intellectual disabilities an opportunity to gain independent living skills. At the same time, they experience college life and explore vocations through UCLA Extension. Here is a link to Patricia Bauer’s Disability News website that contains two very special videos of this year’s Pathway’s graduating class.

I’m very glad that our post-secondary schools are stepping up to the plate for our students with disabilities. If our K-12 schools won’t help prepare our children, it is indeed comforting to know that our colleges and universities are beginning to address this challenge.

Sunday, July 19, 2009

Cake Elmo More Please

We visited Busch Gardens Williamsburg again this weekend, and Ashley was even braver than she was during our last visit. She had very definite opinions about which rides she wanted to go on, and it didn't seem to matter that I was often skeptical.

And she really knows how to charm the ride operators too. When one of her favorite rides was over, she would bat her eyelashes, smile sweetly and sign 'again' at the ride operator. They, of course, would ask me what she was saying. I would explain, and they would immediately gush, "Of course you can!" She really knows how to work it, doesn't she?

Even though the rides were thrilling, the most exciting thing of the day rocked her world as we stood in line for lunch. Right there amongst the strawberry shortcake, cherry pie, and chocolate cake was the sweet face of Elmo smiling from the top of a cupcake. Needless to say, it ended up on our tray.

The rest of the day and night, even after we were headed home, Ashley kept signing, "cake Elmo more please." I hoped that she would forget eventually, but it didn't seem like that was happening. So today, once again her dear brother, Chip, came to the rescue.

As Ashley asked for what seemed like the 1000th time for "cake Elmo more please", Chip baked her some cupcakes and decorated them to look like Elmo. They weren't exactly like the ones at Busch Gardens, but this was one time that Ashley's significant vision impairment actually worked to our advantage. She recognized Chip's cupcakes as "cake Elmo", and life was once again quiet in our little corner of the world.

Thank you, Chip!

Friday, July 17, 2009

Wanna Go For A Spin?

When I first met Ashley and her then-foster mother, Linda, she was quick to point out all the things Ashley couldn’t do. I, on the other hand, take a much more positive approach to life, and envisioned all the things Ashley would be able to do.

Linda either didn’t understand or chose not to seek out the supports that could make a significant difference in Ashley’s life. There had been no early intervention – Ashley was two years old when I adopted her – no therapies of substance – an absolutely no planning for a future involving anything other than constant caregiving.

One of the stories Linda related to me was how a doctor once told her Ashley would never be able to drive a car. Linda said she replied to the doctor, “Well, of course not, she’s blind”. Linda thought it ludicrous that anyone would even suggest there may be a chance for Ashley to independently navigate a vehicle.

Well, you know what, Linda – you were wrong! A student team in Virginia Tech's College of Engineering is testing a vehicle aimed at giving the blind an opportunity to drive!

A retrofitted four-wheel dirt buggy developed by the Blind Driver Challenge team from Virginia Tech's Robotics and Mechanisms Laboratory uses laser range finders, an instant voice command interface and other methods to guide blind drivers as they steer, brake and accelerate.

The vehicle has been tested by folks who are totally blind, and according to Wes Majerus, of Baltimore, the first blind person to drive the buggy on a closed course at the Virginia Tech campus earlier this summer, "It was great!"

Read more about this remarkable step towards more independence for people who are blind, here and here.

Oh, and just so you know, Ashley is already deciding what color car she wants :)

Thursday, July 16, 2009

Thankful Thursday

Today I am thankful…

  • for the tasty zucchini bread Miss Amy made for us last Saturday and the brownies she made yesterday. I think I’ll keep her!

  • for the great time Chip, Ashley, Corey and I had at Busch Gardens last Sunday

  • that Mr. Baldwin’s worthless grandson was caught after stealing one of Mr. B’s checks and trying to cash it at the bank. I have never in my life seen such awful family members….

  • for all the tomatoes ripening in my garden that will soon become homemade tomato sauce. We will be able to enjoy them this coming winter also.

  • for the way soft grass feels on bare feet – one of the joys of summer, one of the joys of life

  • for the way my cat, Winky, curls up at the foot of my bed each night when I go to sleep. That’s much better than the way my other cat, Kitty Carlisle, wants to curl up around my head.

  • for all the new kinds of flavored sparkling water on the market. My current favorite is pomegranate cherry from Target

  • for ceiling fans. On these super hot summer days, even the air conditioner doesn’t seem to cool enough. I need air moving.

  • that Big Brother is back on tv. It is one of my summertime vices

  • that Mr. B is still with us and not in too much pain yet

And here's the zucchini bread recipe!!

Zucchini Pineapple Bread

4 eggs
1 1/2 cups white sugar
2 teaspoons vanilla extract
1 cup vegetable oil
1 1/2 teaspoons ground cinnamon
3/4 teaspoon ground nutmeg
1 (8 ounce) can crushed pineapple, drained
2 cups grated zucchini
3 cups all-purpose flour
1 teaspoon salt
1 1/2 teaspoons baking soda
1 1/2 teaspoons baking powder

Combine flour, baking powder, baking soda, and salt.
In a large bowl, mix oil, eggs, vanilla, sugar, cinnamon, and nutmeg. Blend in pineapple and zucchini. Stir flour mixture into zucchini mixture. Pour batter into two greased and floured 9 x 5 inch loaf pans.
Bake at 350 degrees F (175 degrees C) for 1 hour. Cool on wire racks.

Tuesday, July 14, 2009

Special Exposure Wednesday

As just one more example of why Chip is the best brother in the whole world, he recently bought our family passes to the Busch Gardens theme park in Williamsburg, Virginia. He did this because he knows how much Ashley loves amusement parks, especially all the wild rides. Because of the poor economy, our family is not able to take a vacation this summer. Chip thought that the passes would bring us a summer full of fun and not cost as much as a vacation.

These pictures from our first day to the park, last Sunday, say it all. Ashley is thrilled and loves her brother very, very much!!

She was sad to leave at the end of the day but also looking forward to our next trip this coming weekend!

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Monday, July 13, 2009


I originally wrote about HeartAbility for 5 Minutes For Special Needs back in April, and this is an update on how things are going...

So often these days, I see news reports about people getting arrested for shoplifting food. I have to believe it is because the economic crisis has impacted so many families and left them desperate. But in an effort to help, my youngest daughter, Ashley, is trying to make a difference.

Ashley has a canvas bag on which she painted a big red heart. Each week, I give her $10.00 to go to the grocery store to buy non-perishable foods. We then drive to our local food bank to drop off the food. Ashley even helps stack what she bought on the food bank shelves.

Even though Ashley is deafblind, currently has three brain tumors, needs a wheelchair for long distances, and has 2-3 seizures each day, she is a perfect example of how all our children, regardless of their level of ability, can make a difference for people in need.

But this is not just a one way street. While Ashley is in the grocery store, she is learning to find items without any vision. She is learning the concept of exchanging money for goods and services. She is learning math and how to ensure she gets the right change. She is learning the value of her money, and she is honing her communication skills. And most importantly, she is learning that we must all take responsibility to make our world a better place.

Ashley is making a difference, and I ask that each of you also consider encouraging and assisting your children to make a difference. I would love to hear your ideas or what you and your children are already doing. If anyone is interested in starting a HeartAbility effort in their town, just let me know. I can provide promotional material and graphics.

I just really don’t want to hear any more stories about people stealing food…

Hear! Hear!

Fair Pay for Caregivers


Sometimes I wonder if all the battles I fight for Ashley’s rights are really making a difference. I think so, but there are not always tangible benefits, especially when I seem to fight some of the same battles over and over again. But after reading the following story about Harold Snider, I am heartened.

Mr. Snider’s parents went to battle for him beginning when he was in the third grade. Read the following article from the Washington Post to see what a difference that made for Mr. Snider, and for people with disabilities everywhere, and know that you also, as a parent to a child with a disability are making positive differences every single day.

Harold W. Snider, 61, a prominent advocate for the blind who helped craft legislation that expanded the civil rights of Americans with disabilities and aided in the launching of an audible newspaper service, died June 26 at his home in Rockville after a heart attack.

While growing up in Jacksonville, Fla., Mr. Snider said he was forced out of regular third-grade classes because he was blind. His parents sued the Duval County school system, and Mr. Snider became the first blind student in the county to graduate from public school.

The experience launched Mr. Snider's interest in advocacy, and in the mid-1970s he reportedly became the first blind employee of the Smithsonian Institution. As a handicap program coordinator for the fledgling National Air and Space Museum, he worked to make the facility a vivid experience for the sight-impaired.

"You can't look at the spacecraft, so you touch it, or you hold a model of it or a raised line picture of it," Mr. Snider told United Press International in 1976. "You can't see an airplane, so you hear its engine roar."

In 1978, he started Access for the Handicapped, a District-based consulting company for guidance on policy, technology and resources for people with disabilities. Through his company, he worked on projects for people with disabilities around the world, including Zambia, Ecuador and South Korea.

After Mr. Snider worked for the Republican National Committee on disability issues, President George H.W. Bush appointed him in 1990 as deputy executive director of the National Council on Disability. In that role, he served as a liaison among the council, the White House, Congress and the media.

He also helped draft the sweeping Americans With Disabilities Act of 1990, which broadened civil rights already protected in earlier legislation. The act guarantees protection of disabled people from discrimination in the public and private sectors and regardless of whether agencies or businesses receive federal aid.

After Mr. Snider left the council in 1992, he worked in conjunction with the National Federation of the Blind to develop NFB-Newsline, a free dial-to-listen newspaper and magazine service that includes daily editions of The Washington Post, the New York Times, the Los Angeles Times and the Wall Street Journal among its more than 250 publications. It debuted in 1994 and claims more than 50,000 users.

In addition, Mr. Snider was a former chairman of Montgomery County's Commission on People With Disabilities.

Friday, July 10, 2009

The Call of the Sirens

Even though my career has been spent in the technology arena (I am a computer engineer), my electronic gadget quotient is low. For instance, I don’t mind and even sometimes enjoy listening to records – you know, those vinyl things. And, even though we have FIOS TV, and way too many channels for me to even remember, I usually end up watching network TV. It drives my 18 year old son crazy when I come to him and ask him to unravel the mess I sometimes make of the TV/FIOS box/Blueray Player/DVD Player/Sound System. Even worse in his mind is that I have a cell phone with lots of bells and whistles, and all I use it for is to make and receive phone calls. But all that may be about to change!

For several years my son has been extolling the virtues of the IPhone. So far our cell carrier does not offer that phone, but as soon as my son’s contract is up, he’s headed to the other carrier that does offer the IPhone. One of the reasons is that there are hundreds of ‘applications’ available for the IPhone.

Now remember, since all I do is make and receive calls, the lure of the applications has yet to call to me. This week, however, I saw three different news stories discussing IPhone applications specifically designed for people with sensory disabilities. The sirens are calling to me….

First, one company has two IPhone applications, one for allowing sight-enabled people to learn Braille. Just the fact that they used the words “sight-enabled” sucked me right in. That same company also offers a fingerspelling application.

Another company has developed an IPhone case that enables people who are blind to access the touch screen feature of the phone – extremely interesting but please don’t tell Ashley about this just yet!

And finally, another new application called soundAMP allows the IPhone to act as a modified hearing aide.

I just may have to reconsider my make/receive cell phone calls approach to life!

Thursday, July 9, 2009

Thankful Thursday

Today I am thankful…

  • that Mr. Baldwin is hanging in there and kicking cancer’s butt just a little

  • for thickly sliced tomatoes on an everything bagel with veggie cream cheese, cucumbers and lettuce

  • for bubbles – blowing bubbles, bubble bath and champagne bubbles

  • for a certain strong-willed 14 year old girl who gives the best hugs and kisses ever

  • for the lovely article Erin wrote about Ashley. Erin is herself a remarkable young woman and a great writer. Check it out!

  • for cool mornings and hot days – the perfect summer so far in my neck of the woods

  • that I have so many vegetables coming in my garden that I am able to share with my friends and neighbors

  • for that wonderful time of evening when all my chores are finished and I am able to sit back, put my feet up and just be still for a while

  • for homemade lemonade made with real lemons and sugar water

  • that I believe Chip and I have figured out how to pay for at least his first semester of college

Wednesday, July 8, 2009

Special Exposure Wednesday

Do you think Rocky had a little too much Fourth of July fun?

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Monday, July 6, 2009

Silly People

It’s amazing how much better life is for Ashley when she has the appropriate supports. The second half of the last school year was a nightmare. Ashley did not have an aide who knew enough sign language, and as a result, she regressed in many things – both academic skills as well as daily living skills.

That same aide was with Ashley for the first two weeks of summer school, but starting last week, a person with exactly the right skills has been assigned to Ashley. The difference is nothing short of amazing. Ashley has learned more in the last week than in the last 6 months of school. Why can’t the school staff see that? Well, maybe they can but choose not to act on what they see.

Ashley will be transitioning to high school the coming school year, and still we have not had an IEP meeting to determine what her program will be nor where she will even be going to school. However, I did receive an email today setting the IEP meeting for August 11th – about 25 days before school is scheduled to start. And the meeting is set to begin at 1pm.

Does the school staff, these people with whom I have been interacting for the last three years, really believe we are going to be able to develop a transitional IEP in a few hours?

Silly, silly people….

Busy Not Being Busy

I admit it – I’m an anal-retentive perfectionist with obsessive compulsive tendencies. Combine that with being the parent of children with special needs and ‘busy’ is the only word to describe my life.

I’m always busy, be it taking children to doctors, working both in the office and at home, cleaning and then cleaning some more, washing/folding/ironing laundry, or trying to keep all the mountains of school paperwork organized. I know I don’t relax enough, and I know I should just slow down more, but it’s difficult. However, that is about to change and I have my next door neighbor, Mr. Baldwin to thank for that.

Mr. B. is actively dying of brain cancer. He was diagnosed just a week ago, and the doctors have given him two weeks to two months. I’m betting it’s closer to the two week mark. So, my last week has been busy with all the normal stuff, but also with doing anything and everything I can do to make his last days comfortable and as good as they can be (which doesn’t by any stretch of the imagination mean good as it is usually defined). He has family, but they are not caring for him. Rather, they are already fighting over who gets what once he is gone.

My caring for him has meant making meals, cleaning his house, changing his bedding, and taking him once last time to the bank. I have also put each day’s medicine in little containers marked ‘morning’ and ‘night’ because otherwise he won’t take it. But it has also meant something even more important, and that is taking time to chat, to just visit and listen to his stories and dry his tears when they come.

Those chat times have forced me to slow down, and even under these sad circumstances, I find I am really enjoying the slowing down. Mr. B. is reminding me what is really important in life, and it isn’t the cleanest house on the block or the clothes without wrinkles.

So, I skipped writing a blog last Friday. Instead, in between caring for Mr. B., I went to a friend’s pool and just floated in the sun. I watched Ashley take her first jump on a trampoline, and I ate ice cream an hour before dinner.

Mr. Baldwin needs me right now, and I need him – I need him to remind me to slow down and enjoy myself more. Life is sometimes too short and often unexpected surprises step in to change everything which seemed important.

Thank you, Ed. Thank you for being a wonderful neighbor and friend, and for reminding me to savor life. I hope the end comes peaceably for you, and it will if I can do anything about it. Your lovely wife, Dot, is waiting for you, and I know soon that you will be reunited and happy together again.

Thursday, July 2, 2009

Thankful Thursday

Today I am thankful...

  • for yummy 'summer sandwiches' made with heirloom tomatoes, cucumbers and lettuce

  • for Jackie and Amy and all the help they have given my neighbor, Mr. B. Mr. B is terminally ill and is counting days and weeks.

  • that my daughter, Jessica, is going on her first overnight visit to a friend's house this weekend. Although Jessica ia 18 years old, this is a step towards adulthood that she has never tried before.

  • that my rubekia is starting to bloom, showy and vibrant as always

  • that I have a three day weekend coming up!

  • for hot dogs, hamburgers and corn on the cob cooked on the grill on the Fourth of July

  • that my garden has flourished early this year, and I will have time to replant and get even more vegetables before the winter sets in

  • for pool visits with Amy and the kids

  • for salads with fruit in them

  • for slowed-down summer evenings spent listening to Mr. B's stories

Wednesday, July 1, 2009

Special Exposure Wednesday

When you are an 18 year old boy whose life revolves around baseball, there is nothing better in the world than a Sunday afternoon spent at your first Major League baseball game and an autograph from your favorite player (who just happens to share your name!).

Chipper Jones made my son's (Chip) day!

Make sure to check out all the other Special Exposure Wednesday pics at 5 Minutes For Special Needs!