Wednesday, April 30, 2008

What A Great Idea!

One of the many challenges faced by people with disabilities is finding fitness classes or exercise groups. I have never been able to find anything other than a weekly 'play in the pool' session for my daughters with disabilities. So, I find the story linked below very interesting. I would love to see something like that in my town...

Adaptive Yoga

Tuesday, April 29, 2008

Sooner Rather Than Later

Last evening, my oldest son and I planted our vegetable plants and herbs in our garden. We’ve had so much rain recently and more is planned, so getting the plants in the soil was a snap, and hopefully they will grow and flourish with the upcoming rains. We put in tomatoes, pepper, cucumbers, squash and several different herb plants. As we finished up with the tomato plants, I pushed their big wire cages into place around them, and it was at that moment that one of our neighbors gave me a very strange look – almost a “Those tomato plants are only 2 inches high and you are putting that very large support around them” question. I know it does look a little strange around the baby plants now, but the wire supports will help the plants as they get larger and laden with luscious red tomatoes. And that made me think of my children with disabilities.

Just as I put the tomato supports in place when my plants are tiny, I worked very hard to put supports in place for my children when they were tiny. I encountered many strange looks and battles from people who thought it silly of me to want literacy instruction, for example, when my blind daughter was only 2 years old, or physical therapy for my oldest daughter who had been unable to walk since birth. Many of the professionals I encountered seemed to think a waiting attitude was more appropriate than an action attitude. But I strongly disagreed.

So, when my children and I are eating our juicy, tasty red tomatoes – when we are having conversations around the dinner table – when we are planning our walking trip to Williamsburg, I will remember those people who doubted – those people who believed I was asking for too much too soon. They were wrong – and they are still wrong if they think I will not strongly advocate for my children…and my tomatoes!

Monday, April 28, 2008

A Rich Man?

Adam Jasinski is the winner of Big Brother 9. Adam is also the person who, early on in the show referred to the children with whom he worked as ‘retards’. His exact statement on the show was "I want to do a hair salon for kids with special needs so retards can get it together and get their hair done." And he is now $500,000 richer.

Mr. Jasinski was employed by the United Autism Foundation. I’ve had very little luck finding out anything about the United Autism Foundation. The organization has a home page, but only that one page, and at the top is the message “Website Under Construction”. Two other statements are on that web page. The first states ,”AUTISM is one of the fastest growing disorders in the country, UNIAF is trying to create awareness and help all those who are diagnosed with AUTISM.” And the second states, “UNIAF is trying to build the first Children’s Dental Center for special needs patients in the country. UNIAF is committed to help millions of special needs patients nationwide.”

I also found another statement (listed on about their mission:

The United Autism Foundation is a 501(c)(3) corporation, which was only established to serve and improve our community in order to help children and change lives.

It is the strategy of the United Autism Foundation to focus primarily on raising funds, which is a necessity to improve our society, have an immediate impact, and make a serious difference in our community today. We serve the community with dignity and ensure the most appropriate use of all donated funds: improving today for the future of tomorrow.

After analyzing the needs of our community, UNIAF is focusing on improvements of education, medical, and economic conditions of families and their children with special needs, specifically children with autism.

At UNIAF, we are not only passionate about what we do, furthermore, it is our daily motivation to strive after our goals and realize our vision, just thinking about the most exciting reward, a smiling child and happy family. It is all about securing the future of our society.

The United Autism Foundation is working with the local and national media, to increase awareness and encourage more aggressive funding to improve our community today. It is our commitment to serve the community and secure the future of our children.

So, given that the organization is focused primarily on raising funds, they should be pretty happy that when Adam Jasinski was pronounced the Big Brother winner, he immediately yelled out that he was giving $100,000 to UNIAF. Of course, he probably didn’t know at that moment that he was no longer employed by UNIAF. After his ‘retard’ comments in February, UNIAF announced on their web page that Mr. Jasinski was no longer employed by their company.

Will Adam Jaskinski stay true to his stated commitment of giving $100,000 to UNIAF? Will UNIAF hire Adam back just to get the donation? Will Adam continue to refer to people with developmental disabilities as “retards”? I think UNIAF has certainly met their goal of increasing awareness within the media regardless of the answers to those questions.

Friday, April 25, 2008

Hero Doctor

Imagine being so committed to an idea that you would sell your house and change your entire life to make that idea a reality. That’s exactly what Dr. Lorna Stuart did. She was so frustrated with all the insurance battles and paperwork involved in her traditional medical practice, so frustrated that those battles were taking time away from her patients, that she pooled all her resources and opened a clinic that accepted no insurance.

At her clinic, people receive free or low-cost primary medical care across eight specialties, regardless of income or locality. According to Dr. Stuart, “Since there's no need to spend a lot of time doing paperwork, we have time to talk to the patient and really hear what they're saying. So the patients go away feeling they've been heard, that they've been helped."

She is a hero in my eyes - "Each day, I get to treat the patients whom our medical system has forgotten, without the hassle of insurance paperwork," says Stuart. "Is it any wonder I once again feel the real joy of practicing the craft that I love?"

Here is a link to a story that CNN did about Dr. Stuart and her clinic, and here is the link to her clinic website.

Thursday, April 24, 2008

Thankful Thursday

Today I am thankful...

  • For my undereye cover-up makeup. It keeps me from scaring people on those days after Ashley has decided to party the night away.

  • For times spent on a warm Spring evening, sitting on the front porch, and blowing bubbles for Ashley to try and catch.

  • For the bright sunny day today. After what seems like weeks of steady rain, I feel like I should stand in the middle of my front yard and offer praises to the Sun God.

  • That this weekend I will get to plant flowers and vegetables in my garden. I am sorely in need of some dirt under my fingernails.

  • For those 100-calorie packs of snacks. I don’t know if they really work, but it makes me feel like I am eating a tad bit healthier.

  • For the pair of cardinals who decided to share their mating ritual with my family yesterday evening, right outside our back door.

  • For neighbors who smile and call out greetings as they walk past our house.

  • For pancakes for dinner in the middle of the week.

  • For unexpected phone calls from friends out of town.

  • For my cat who plays fetch. My dog won’t fetch, but Winky the cat will.

Wednesday, April 23, 2008

Commitment Unequaled

It’s been two years since the original request for services – services I strongly believed Ashley had a right to have. As expected, however, that request was quickly denied. That’s what you, your team and I expected, and so we marshaled our forces and set out to slay the evil dragon.

The road has been crooked with many potholes along the way, but I still believe we are getting closer. Ashley’s progress has been stilled, but if you and I can win this battle, she and a lot of other children will benefit in the long run. I believe a little quiet now will be worth the celebration in the future.

The latest ‘decision’ was not completely bad. Again, we are inching closer to victory, and I don’t want you to feel like you have failed Ashley. We’re going to get there – Ashley is going to get what she needs – and as always, you will be the conduit for that success.

So, thank you again, Jonathan. Thank you for believing in Ashley, and thank you for fighting her causes for the last eleven years.

Tuesday, April 22, 2008

Knights in Red and Yellow

"Thanks to the efforts of Father Michael J. McGivney, assistant pastor of St. Mary’s Church in New Haven and some of his parishioners, the Connecticut state legislature on March 29, 1882, officially chartered the Knights of Columbus as a fraternal benefit society. The Order is still true to its founding principles of charity, unity and fraternity." - (from the Knights of Columbus website)

I'm sure you've seen the people wearing the bright yellow and read aprons standing in front of stores like Walmart, Target and grocery stores. For years, I have read the message on their aprons, "Providing Help to the Mentally Retarded", and for those same years, I have been annoyed by the words.

So imagine my surprise this past Saturday as I parked and walked into Walmart. There were the red and yellow aprons, yet now they read, "Providing Help to the Intellectually Disabled." If they would make just one more small step and have the aprons read "Providing Help to People with Intellectual Disabilities", I'd throw them a party!

Thank you, Knights of Columbus.

Monday, April 21, 2008

Forget Forgetting

Amy and I went to see the movie “Forgetting Sarah Marshall” last Friday night. The movie was not very good, and I will have no problem “Forgetting” it, but I am glad we went. I saw something at the theatre that lifted my spirits, and they have been in dire need of lifting recently.

During the advertisements that precede the movie, a gentleman walked in pushing a woman in a wheel chair. The wheel chair was a engineering marvel as was the woman in it. She appeared to have cerebral palsy, and she had the thickest, healthiest looking head of blond hair that I have ever seen.

All the seats in the wheelchair section were already occupied – by people not needing them. In this particular theatre, the wheelchair seating is made up of two regular movie seats, a wide open area that looks as if it could accommodate 3-4 wheelchairs, and then two more regular movie seats. I was all ready to jump up and ask the people in those seats to move when I noticed that the man pushing the chair didn’t even look that way. He kept pushing the chair until he found three seats at the end of an aisle, then parked the wheelchair, and lifted the woman into his arms and helped her get settled into a movie theatre seat. The look in his eyes during all this was what fascinated me.

As the man bent to lift the woman, he gazed into her eyes with the purest love I have ever seen. A smile lit up his face, and the two of them seemed to be having a conversation though no words were spoken. But in addition to the love in his eyes, as he lifted the woman and prepared to move to the aisle and the seats he had chosen, there was a challenging look there also. A sort of “I dare you to make any unkind comments” look. Of course, the people who had been staring all turned away at that look in his eyes.

The man and the woman got settled into their seats, and soon were joined by another woman, a woman I figured to be the Mom to the daughter and Dad duo that was already seated. The movie was starting, and while Mom and Dad enjoyed popcorn and sodas, their beautiful daughter had a tube feeding. About halfway into the movie, I heard a strange sound, one I knew I head heard before. Then it dawned on me – it was the sound of a trach being suctioned. Many people turned to look at the family, but the three family members seemed oblivious. They were enjoying the movie just like everyone else.

When the movie ended, Dad once again scooped his daughter into his arms and gently helped her back into her wheelchair. All three of them were smiling and moving in a leisurely fashion to the exit door. Throughout all this, the coming and going, the enjoyment of the movie, the family time I witnessed, I had strange feelings, feelings I was having a tough time labeling. But as they family left the theatre, I figured it out. I was jealous. I want to be as comfortable as they seemed to be - comfortable with going and doing anything with their daughter with significant disabilities – comfortable enough not to worry what people say or how people stare. I’m getting closer to that, but I am definitely not there yet.

So the next time I feel uncomfortable when I am out with my children, when I feel like everyone is staring and judging my family, I am going to remember the two looks in that father’s eyes – pure, undeniable love and a bold challenge. We will do anything and everything we want to do as a family, and the strength that I witnessed in that movie theatre will be my example from now on.

Friday, April 18, 2008

Like Cracking an Egg

I’ve been noticing for a while now – at least a year – that children aren’t wearing helmets much anymore when riding their bikes, skateboards, and scooters. At first, I thought it might only be in my neighborhood. But, I’ve been to other neighborhoods and parks and noticed the same thing – no helmets. My kids are tired of me commenting and asking “What are their parents thinking?”, but I still do it every time I see a child riding without a helmet. I would really like to take the parents on a field trip to our local children's rehab hospital. I would like the childen in that facility to tell the parents what it is like to have a traumatic brain injury. Maybe if the parents heard it first hand, I'd be seeing more helmeted children. Unfortunately last night, my fears for what might happen to one of the helmetless children became reality.

I had taken Lizzie the dog out for our nightly stroll around our neighborhood. Many of my neighbors had the same idea and were walking also. I heard the laughter and squeals of children behind me, and soon, a young boy, maybe 8-10 years old, comes speeding by on his bike. I heard his mother behind me telling him to slow down, which, of course, he chose to not hear. His mom and his younger sister were also riding their bikes, and were still a little ways behind me. Neither the mom, the little boy or the little girl were wearing a helmet.

And then it happened. I heard the little girl yell, heard her bike fall and scrape the roadway, and then I heard a sickening thump. I was almost afraid to turn around and look because I knew that thump was probably her head striking the pavement.

Her mother threw down her bike and she and I rushed to the little girl at the same time. The little girl was unconscious and completely unresponsive. While her mother was understandably starting to panic, I called 911 on my cell phone. Within minutes, the rescue squad arrived. The little girl never regained consciousness, and the emergency medical technicians loaded her into the ambulance, along with her mother and brother, and drove away. I moved all their bikes off the side of the road, and because I was too shaky and upset to continue my walk, Lizzie and I returned home.

I don’t know how the little girl is doing. I had never seen these particular neighbors before, and I don’t know where they live. If I find out anything, I will update this blog entry, but in the meantime, please, please, please don’t let your children ride their bikes or skateboards or scooters without a helmet. The same goes for roller blades.

Thursday, April 17, 2008

Thankful Thursday

Today, I am thankful...

  • for the early morning smell of Spring

  • for Ashley's kiss each school morning before she boards the school bus

  • for the lovely time my family had sharing brunch last Saturday at Strawberry Street Cafe with my brother and niece

  • for salt and vinegar potato chips

  • for piano music

  • for Eucerin Original Cream. All winter long I have slathered my feet in it every night and then put on cotton socks. My feet are sandal-ready for Summer!

  • for lightning bugs

  • for ripe pears

  • that the morning dew on the grass looks like little diamond chips sprinkled throughout my yard

  • that I have been writing Thankful Thursday posts every week for almost a year now, and can still find 10 unique things for which I am thankful!

Wednesday, April 16, 2008


One year ago today the tragedy at Virginia Tech struck. I am not a graduate of VT, but I do have lots of friends and family who have or are attending. Also, over the years in the course of my job, I have worked closely with many of the professors and staff at VT. I am as sad today as I was a year ago. I believe the best way to honor those students and staff members who lost their lives on this day last year is to again read and hear the words of Nikki Giovanni, celebrated author and Virginia Tech University Distinguished Professor. Her poem of honor is listed below, and the YouTube video of her delivering her poem at the rememberance ceremony is below that.

Nikki Giovanni’s Chant-Poem

We Are Virginia Tech
We are sad today
and we will be sad for quite a while
… we are Not moving on
We are embracing our mourning
We are Virginia Tech
We are strong enough
to stand tall tearlessly
We are brave enough
to bend to cry
And sad enough
to know we must laugh again
We are Virginia Tech
We do not understand this tragedy
We know we did nothing to deserve it
But neither does a child in Africa dying of AIDS
Neither do the invisible children walking the night away
to avoid being captured by a rogue army
Neither does the baby elephant
watching his community be devastated for ivory
Neither does the Mexican child looking for fresh water
Neither does the Appalachian infant killed in the middle of the night
in his crib in the home his father built with his own hands
being run over by a boulder because the land was destabilized
NO one deserves a tragedy
We … are Virginia Tech
The Hokie Nation embraces our own
and reaches out with open hearts and hands
to those who offer their hearts and minds
We are strong
and brave
and innocent
and unafraid
We are better than we think, and
not quite what we want to be
We are alive
to the imagination and the possibilities
We will continue to invent the future
through our blood and tears
Through all this sadness,
We are The Hokies!
We will …prevail!
We will prevail
We will prevail
We ARE… Virginia Tech.

Tuesday, April 15, 2008

Wrong Place - Wrong Time

Ashley’s classroom is small – only 4 students for the majority of the day. In the afternoon some other students come to the classroom for vocational training, and at that point, the noise level and the anxiety level has been known to climb fairly high. Overall, I am thrilled with Ashley’s placement this year, and with the excellent job the teacher and other staff do to teach her. However, there is one very negative aspect to this particular classroom – one of the students has outbursts of rage and aggression.

Because my oldest daughter, Jessica, is also prone to such outbursts, I am very familiar with the injuries that can happen during the tirades. I’ve had my ribs broken and too many bites and bruises to count. I sustained those injuries because I wanted to make sure that none of my other children were injured. And that is exactly what the teacher and aides in Ashley’s classroom do with their aggressive student. They offer themselves up in the midst of the outbursts in the hopes that the other students will not be injured. And they have done an excellent job of protecting the other students. However, the cost of their own safety has been high.

I’ve seen bites that have broken the skin and left bruises every shade of purple. Black eyes from head butts, and sore legs from kicks are quite common for the adults in the classroom. Just yesterday, the classroom aide had her thumb broken. I think the staff in the classroom has cornered the market on tetanus shots, ace bandages, and ice packs. What I don’t understand is why the situation is allowed to continue.

I am one of the strongest advocates for children being in the least restrictive environment for their education. But I don’t believe that LRE has to come at the cost of ongoing and extensive personal injury. In my opinion, this aggressive student needs to be in a different environment, and one with different supports. The current placement does not seem to be working for anyone – the student or the staff – and I worry constantly that during one of the outbursts, one of the other children will be injured.

Monday, April 14, 2008

Say WHAT?????

Have you ever been sitting in an IEP meeting or some other school-related meeting when someone from the school staff says something so utterly ridiculous that you are left speechless?

I read an article in the Virginian Pilot newspaper yesterday on the subject of advocates assisting parents in the special education process. One of the advocates featured in the story, Cheryl Poe, began her journey to advocacy because of one of those ridiculous comments made to her about her son. The quote from the newspaper was "For Poe, her activism was spurred by her own experience. About six years ago, while trying to get diagnosis and treatment for her son’s learning disability, she said a school speech pathologist told her she was the problem, that she must have been speaking black English to him at home." Say WHAT????

Although I've heard many ridiculous comments at the IEP meetings for my children, the worst was when, following a triennial review, Ashley's teacher announced to the team that Ashley was a "visual and auditory learner." Say WHAT?? ASHLEY IS DEAFBLIND!!!

So, what inane comments have you heard?

Egghead Dog

What do your kids do on a Sunday afternoon when they are trying to avoid starting their homework? Mine stack broken plastic Easter eggs on the dog's head and then take pictures of their handiwork.

Friday, April 11, 2008


Ashley has Medicaid health insurance. Medicaid is the United States health program for individuals and families with low incomes and resources. It is an entitlement program that is jointly funded by the states and federal government, and is managed individually by each state. Among the groups of people served by Medicaid are eligible low-income parents, children, seniors, and people with disabilities. More often than not when a health professional hears the word ‘Medicaid’, the assumption is made that the insured is low income. However, people with disabilities can and often do have Medicaid insurance even if their families are not considered low-income.

Ashley has Medicaid insurance because I adopted her from the foster care system and because she has disabilities. Medicaid has been a lifesaver financially for my family. If I had to rely solely on my health insurance (through my employer) for meeting Ashley’s medical bills, we would have reached her lifetime maximum several years ago. So, I am very happy that she had Medicaid. What I’m not happy about is how some medical professionals treat us when they learn that Ashley has Medicaid.

Many years ago, when Ashley was in the hospital for her G-tube surgery, I heard the nurses at the nursing station whispering the words ‘Medicaid baby’. At that time I wasn’t sure what they were talking about. As soon as Ashley returned from surgery and was put in the smallest room on the hospital floor, and then another child was also put into the room (the room was small for single occupancy, and impossible for double occupancy), I realized what they were talking about.

Medicaid is not a money-making enterprise for a hospital. Medicaid payment rates are probably the lowest of any insurance program. That’s one of the reasons my friend, Lynnette, has problems finding and retaining nurses for her daughter, Brooke. Nurses can earn more money working for any other insurance program. And, I believe it is the reason that hospitals and other medical providers do not give the same attention and service to people with Medicaid as they do to people with private insurance.

Going back to Ashley’s time in the hospital for G-tube surgery, once I realized what was happening, I became very irate. I stormed into the hospital administrator’s office and demanded that we resolve the issue of the tiny, cramped room right then and there, or I would be happy to resolve it in the press. Not an hour later, Ashley had been moved into a private room three times the size of the one she had been in. But it should not have taken such action on my part for Ashley to be treated fairly by the hospital.

I could list several other examples of Medicaid discrimination, and one of the things that has always bothered me is that many people with Medicaid may not have gone to the lengths I did to put a halt to the discrimination. How many people – parents, children, the elderly and the disabled – are discriminated against every day because of the type of insurance they have? How many of those people even know they are being discriminated against? Is there any way to stop these practices?

Thursday, April 10, 2008

Thankful Thursday

Today, I am thankful...

  • For sunshine. We’ve had so many gray rainy days that the sun on my face this morning felt almost alien.

  • For puddles after a warm spring rain

  • For homemade biscuits with homemade jam

  • That my brother and niece will be visiting this weekend

  • That the Cooper’s Hawk that visits my neighborhood every Spring and Fall is back. Let the squirrel culling begin! (please, no PETA comments – this is just Mother Nature at work)

  • That I have finally hired an assistant for work. He starts on May 5th!

  • For ACE bandages. My arthritic elbow thanks me also.

  • That Marlee Matlin is still on Dancing With The Stars.

  • For the smell of new mulch in the garden

  • For the pieces of brightly colored yarn Amy threw in my yard hoping to entice the birds to use it as nesting material. How cool would it be to have a bird’s nest full of red, yellow and blue yarn.

Wednesday, April 9, 2008

A Life of Riches

America’s economic crisis is now becoming my economic crisis. When I first began hearing the dire news a year ago, I didn’t feel the impact so much. But now, probably like most Americans, thoughts of money and bills and the future dominate my days.

My family has made a lot of changes in an attempt to weather the crisis. And, my initial reaction to making the changes was one of suffering, not being able to live my life as I had been. I have, however, changed my perspective a bit these last few weeks.

As I have listened every night on the evening news about the U.S. either heading towards a recession or as some financial analysts believe, already in a recession, I decided to look for something positive in these changing times. And, it really wasn’t hard to find the silver lining to the economy’s cloud.

First, my family doesn’t eat out very much anymore. Whether it was fast food, carryout, delivery, or a sit-down restaurant, we had been eating out 2-3 times a week. Now, once a week is considered a treat. What’s the positive? It’s a whole heck of a lot easier to eat healthier when you prepare the meals yourself. My children have even commented on how much better they feel in the last few months. I’m not sure they have made the connection from feeling better to healthier eating, but it is obvious to me.

Secondly, we stay home a lot more these days. We don’t just jump in the car and go places like we used to. We plan our trips more, and as a result, trips have become something to look forward to. We spend a lot more time as a family, sitting together in our family room, playing board games, watching TV shows together, reading, and having some great conversations.

My children ride their bikes more and that means increased exercise. We live close to a library, so they often ride to the library to check out books. More money saved. My oldest son visits frequently, posting items we no longer need but someone else may have a use for, or looking for items we might be able to use – and as the title of the website says, it’s FREE. We walk around the neighborhood more. We are meeting and visiting with our neighbors and really building a sense of community that often was missing in the busy, hectic lives everyone used to live.

Those are just a few of the positives. I’ll bet we could come up with a long list if everyone really tried. Gas at $4 a gallon still really hurts – the cost of groceries still causes a great deal of worry – major, unplanned expenses can still send me reeling, but I am determined to find some good in all this. And I hope that ‘good’ means my family grows wealthier in ways that don’t include money.

Tuesday, April 8, 2008

Standing Outside the Fire

This may be a pretty old song and video, but I have never seen it. A good friend of mine who just happens to be the most incredible doctor ever put on this earth shared it with me. (Thanks, Harry!) It's well worth your time, even if you don't particularly like the music of Garth Brooks.

Standing Outside the Fire

Monday, April 7, 2008

Now I Lay Me Down To Sleep

I have failed miserably at one of the responsibilities of parenting – teaching my children good sleeping habits. It certainly hasn’t been for lack of trying though. I have done most if not all of the things that parenting ‘experts’ recommend. My children have always had specific bedtime schedules, and because of my well-honed OCD tendencies, we almost never veer from those schedules. My house is quiet and calm in the evening. Sugar is limited or not available at all. No video games are allowed and no disturbing television shows are on. The house is not too hot or too cold. Everyone is bathed and clean, and extra attention is given to calming routines such as using lavender lotion following a bath. Books and quiet activities are encouraged after dinner, and everyone is well fed. So why won’t my children sleep through the night?

If this were only a problem with Ashley I could attribute it to her deafblindness – the whole getting days and nights mixed up thing. But it involves all my children. My oldest son, Chip, didn’t sleep through the night as an infant until he was 15 months old. He wouldn’t go to sleep up until he was 8 years old unless I was in the room with him. I know, I know – many strategies exist for breaking that habit. I tried them. He would just always come into my room later in the night and sleep on the floor beside my bed. I wouldn’t know he was there until I tripped over him the next morning. Fortunately, as a teenager he has outgrown that, and his sleeping routine is his own.

I can justify Corey and Jessica having difficulties sleeping based on the trauma of their pasts. Jessica was 9 years old when she joined my family. Perhaps the abuse of her first 9 years has had a profound effect on her ability to feel safe during the night. The same goes for Corey. He spent many years living on the streets, and didn’t join my family until he was 12 years old. More than likely the horrors of his past keep him awake at night. But after many years in my family, shouldn’t sleep come a little more easily for both of them?

Ashley’s wakefulness could indeed be due to her deafblindness – or maybe she is having seizures during the night – or maybe it is just some other quirk of her interesting medical profile. Even with her, though, I would have thought all my attempts to improve her sleeping habits might have had at least some sort of positive effect.

Worse than the sleeping habits of my children are my own. I am exhausted almost all the time. So why then when I do get a few hours when all my children are asleep I still sometimes stay awake? I know what I am doing wrong – I lie in bed and worry – worry about the upcoming IEP meeting – worry about everyone’s health – worry about yet another insurance fight – worry about money – etc. etc. etc. It seems the worry is bigger than the exhaustion, and the sheep jumping over the fence in my brain are getting tired of being counted.

What can I do? I need strategies for setting aside all those thoughts that take over my mind in the middle of the night. I need techniques for getting myself to sleep even if I am awakened by one of my children. They go back to sleep – why can’t I?

Friday, April 4, 2008

The Dark Lord of Cooking

Hell has opened its gates and spewed forth yet another season with the inimitable Gordon, ‘You, donkey!’, Ramsay. Yes, my friends, Hell’s Kitchen is back on TV for another season, and I am thrilled. I’m not sure what it says about me that I am fascinated by such a rude, insensitive person who has almost every other word bleeped off TV, but I really do like Chef Ramsay.

I wrote about Gordon last summer, and yes, I am pretending that he told me I could call him Gordon. Nothing has changed – I would still love to be on the show even if it meant he would yell at me. At least I would know that by the end of the season, I would be able to cook a kick-ass risotto.

One of the first things the contestants have to do is cook their signature dish for His Chefness. My oldest son asked me during the show this week what my signature dish would be. So, I’ve been thinking about it and have come up with the recipe below. Thing is, I don’t know what to call it. So, we will have a contest. The person who comes up with the best name for my signature dish wins the secret recipe for my apple pie that won first place at our State Fair many years ago - really.


• 4 slices peppered bacon, cut in 1 inch pieces
• 12 oz. trimmed fresh young green beans
• 1Tbsp. soy sauce
• 4 pork chops. ½ inch thick
• 1/3 cup apple butter
• ¼ cup water
• 1 cup red or yellow cherry or grape tomatoes

• In a 12-inch skillet, cook bacon over medium high heat until crisp; remove. Reserve 1 tablespoon drippings in skillet. Drain bacon on paper towels.
• Meanwhile, in a 2-quart microwave-safe dish, cook beans in 2 tablespoons water, covered, on high for 4 minutes. Stir once. Drain, set aside.
• Brush chops with soy sauce. In skillet, brown chops on both sides. Add apple butter and the ¼ cup water; reduce heat. Simmer, covered for 5 minutes.
• Add beans, tomatoes and bacon; cook uncovered 3-5 minutes, until sauce thickens.

Serves 4.

Thursday, April 3, 2008

Thankful Thursday

Today, I am thankful...

  • for camellias from the bush next to my front porch floating in a beautiful bowl of water

  • for the birds I heard singing this morning outside my bedroom window at 5:00am. I'm really glad that some of God's creatures sing that early in the day.

  • for special friends who think of Ashley when cleaning out their closets

  • for the lovely little purple Phlox flowers spreading themselves across my garden

  • that my antibiotics are working and freeing me from the awful sinus infection I had last week

  • for baked chicken in the middle of the week

  • that James survived yet another week on Big Brother

  • for nights like last night when I was able to sleep 6 whole hours. Thank you, Ashley!

  • for friendly, caring school bus drivers like Ashley's morning driver

  • for the newspaper that got delivered to my house by mistake this morning. While I normally check the news online, there is just something so satisfying about turning the pages of a newspaper and getting ink smudges on my fingers.

Wednesday, April 2, 2008

You Know Who You Are

I was a guest lecturer last week at Virginia Commonwealth University for a class in the severe disabilities consortium. The consortium is a partnership between several universities in Virginia, and classes are taught through distance learning. My class was on deafblindness, and is one I have done for four years now. The students are primarily teachers already in the field who have decided to come back for an additional endorsement, one in severe disabilities. I really enjoy doing it because I get to interact with the teachers outside of my typical interaction, i.e. IEP meetings.

One benefit to me from doing these classes is that my perspective has changed on how difficult a teacher’s job actually is. When I am sitting across the table from a teacher and many other administrators from my school district for an IEP meeting, the entire focus is on my child (as it should be), and how her needs will be met. It’s easy in such an environment to set aside thoughts of the other children in the class and their needs. It’s easy not to think about what accommodations the teacher must make for those other children. It’s easy not to imagine how difficult it must be to have to make unique accommodations for many children in one class. I believe the really good teachers contribute to that ease.

As parents, our first responsibility is to our own children, of course. But the next time you are sitting in an IEP meeting, try to remember that maybe 10 other parents of children in your child’s class have also been sitting in an IEP meeting. Some of those parents will be agreeable to anything suggested by the school district. Some will oppose anything and everything the school district suggests. Some may not even show up for their child’s IEP meeting, leaving the teacher and administrators the task of deciding an appropriate program. Some parents may speak a different language than the teacher. Some parents may not understand why they are even there, and some may not care. Through it all, we parents expect the teacher to be professional and compassionate, understanding our child’s every need, and having the same expectations for that child as we, their parents, do. The mere fact that we do sometimes run across a teacher just like that is incredible.

So I would like to thank the teachers that have done such an excellent job of being exactly what every child needs and partnering with their families in the process. I know your job is extremely difficult, and I have so much respect for you and your commitment to teaching.

Tuesday, April 1, 2008

Lucky Number 13

My baby girl turned 13 years old last Saturday. We began her celebration on Thursday by going to see the movie, Horton Hears A Who. Since Ashley is both significantly visually impaired and significantly hearing impaired, I had no idea if she would even sit through a movie. However, I was fully prepared to pay the outrageous entrance amount only to have to leave after just a few minutes. It was an experience I wanted her to have, and a decision I wanted her to be able to make for herself in the future. SHE LOVED IT! Not only did we stay through the whole movie, she insisted on watching every last credit roll off the screen. The ushers were cleaning the theatre while we sat and watched who the 5th assistant to the 3rd producer was. And, I must publicly thank her two brothers for joining us at the movie even though their movie of choice was Run Fatboy Run.

On Saturday, her birthday balloons and cake arrived, and we set out for lunch at her favorite Mexican restaurant. Three enchiladas, two quesadillas and a pile of refried beans later, we headed home for cake and presents.

On Sunday, Ashley got to choose whatever she wanted to do. If her siblings didn’t want to do the same thing, it didn’t matter. I answered with “But it’s Ashley’s birthday.” I fully admit that as my baby, she is somewhat spoiled. After four days of increased spoiling, she was turning into quite the little diva.

As Monday morning rolled around, the crankiness set in when she realized it was time for Spring Break to end and school to resume. All I had to do was mention that she was having more cupcakes at school. The frowns then turned to giggles and getting on the school bus was not a problem.

So all in all, I think Ashley enjoyed her five day birthday celebration, even though at one point, in a moment of teenage angst, she turned and signed to me “12 again please”. And to those doctors who said she would never see her first birthday or walk or communicate, Ashley has some very special signs waiting just for you!