Monday, August 31, 2009

Ignorance At Its Best

My buddy, Esbee, over at the Life in Forsyth blog, emailed me to let me know about one of her blog posts that she thought might interest me. Her comments in the mail definitely piqued my curiosity. She said she was still ‘sad’, two days after the event she detailed in her blog.

I immediately went to read her posting, and while I understand ‘sad’, what I was when I read it was ‘angry’. I moved a little closer to ‘sad’ the more I thought about it though. Sad that even in this day and age so much ignorance still exists about people with disabilities – sad that people have no trouble sharing their ignorant views, even if their views might emotionally harm someone, especially a child.

Take a few moments and read Esbee’s post and let me know what you feel. Then come back and let met share one of my weekend encounters. I’d also like to know your thoughts about that.

Sunday afternoon, Chip, Ashley and I went to a local bookstore – one of the big ones with a name you would recognize. Chip had selected his books for purchase, and I was pushing Ashley in her wheelchair through the aisles while waiting for Chip to pay.

As I went down one of the aisles, a young African American girl – probably about 14, the same age as Ashley – turned and stared at Ashley. It wasn’t just a short stare – those kind I have learned to ignore most of the time. This girl stared as we approached her – as we passed within 12 inches of her – and then turned and continued to stare as we started to pass by. This was a stare I just couldn’t ignore.

I asked the girl is I could help her with anything – did she have any questions? She got an angry look on her face which I admit did start to make me angry. I said, “You were staring so much at my daughter that I thought you might have some questions you would like to ask.” She made a disgusting noise and walked away.

As I went to the end of the aisle and turned back towards the cash register, the girl was angrily whining to her mother about the ‘weird lady who told her to stop staring.’ The girl’s mother was immediately irate and approached me in typical trashy talk show form and asked me what my problem was. She told me that I shouldn’t talk to her daughter, and that if I had anything to say, I should say it to her. Well, okay then.

I said, “This is my daughter, Ashley. She is 14 years old. She is deafblind, has three brain tumors, and needs this wheelchair to get around. Are they any other questions your daughter might like to ask?”

She said, “You’re a crazy b*tch and stay away from my daughter.”

I rolled Ashley away, and as they family left through the parking lot, the mother turned and used a type of sign language we all know.

Funny thing though, Ashley signed also. She signed “crazy b*tch and pointed outside the store.

Friday, August 28, 2009

My Country

To me, the fight for the rights of the disabled has always been a civil rights issue. Yesterday, my brother sent me a link to an ADA video that speaks to that. It's a little long, but broken into segments so you can start, stop and come back later. But it is definitely well worth your time....

My Country, an ADA video

Thursday, August 27, 2009

Thankful Thursday

Today I am thankful..

  • that Ashley's last two weeks of ESY services are over. The service provider was incompetent and Ashley hated going each day.

  • that Friday is just a day away - I NEED a weekend

  • for my friend, Jackie, who will come and cut the grass when I have weeks like this one

  • for an evening with no chores and a really good book

  • that I will get to visit with Jessica this Saturday when I take over all her new school clothes. She is going to be so excited!

  • that I only have to work two days next week and then will be taking a loooong Labor Day weekend

  • for my herb plants which have just grown like crazy this year. Does anyone need any basil, oregano, rosemary or thyme?

  • that Kristian got kicked off of More To Love this week. Her whining and "I love you so much" (after just meeting you three weeks ago) was more than I could take.

Wednesday, August 26, 2009

First One Then Another

Regardless of your politics, it’s hard to ignore the impact Senator Ted Kennedy has had on this country. The news of his passing so close on the passing of his sister, Eunice, has saddened me greatly. I firmly believe that the lives of people with disabilities have been positively influenced by both Kennedys.

Several years back, when the reauthorization of IDEA was being formulated, I drove to Washington, DC to meet with Senator Kennedy. I wanted to give him a first hand account of what it was like to raise a child with significant disabilities. I wanted him to hear about the joys and the struggles, the fight for an education, and all the medical battles. Honestly, I expected my meeting to be relegated to an aide, someone who would politely listen and promise to share my thoughts with the Senator. But Senator Kennedy himself met with me for about an hour.

I was, of course, quite intimidated, but he immediately put me at ease. It was impossible to ignore the fire in his eyes when he discussed people with disabilities. This was not a man just saying what he thought I wanted to hear. He believed with his entire being that both the life and the education of children with disabilities could be improved. And he went on to fight for that improvement.

So today my heartfelt condolences go out to his family, and I firmly believe this nation, and especially people with disabilities, has lost a warrior. Rest in peace, Senator.

Below is the eulogy Ted Kennedy delivered at his brother, Bobby's funeral. The words are as heartfelt and significant today as they were then.

Tuesday, August 25, 2009

Chill, Baby

If I hear one more time that the primary purpose of high school education for children with disabilities is to prepare them for work, I am going to scream. I wrote last week about Ashley not getting History or Science in high school because ‘she doesn’t have a history or science disability.” Her IEP draft was full of ‘vocational’ goals and objectives, and if the school district staff asked me yet again if I had ‘connected’ with vocational rehab agencies for Ashley, I might just have told them where they could stick their sheltered workshop job.

I understand that our children with disabilities may need a little more time to prepare for the workforce, but seven freakin’ years??? That seems a tad excessive to me. Heck, I can start listing the names of many non-disabled high school students who were not prepared for adulthood and the workforce when they left high school. And, are our children to have no other focus in their lives once they turn 14 years old? That’s pretty sad if that is what the school district believes.

Why shouldn’t our children with disabilities be entitled to the same work-life balance being promoted for those without disabilities? (Work-life balance can also be applied, imho, to education-life balance).

According to a survey conducted by the National Life Insurance Co., four out of ten employees state that their jobs are "very" or "extremely" stressful. Those in high stress jobs are three times more likely than others to suffer from stress-related medical conditions and are twice as likely to quit. The study states that women, in particular, report stress related to the conflict between work and family. Do you think our children with disabilities can also suffer from stress? Heck, their lives are often nothing but stress.

The number of stress-related disability claims by American employees has doubled according to the Employee Assistance Professionals Association in Arlington, Virginia. Seventy-five to ninety percent of physician visits are related to stress and, according to the American Institute of Stress, the cost to industry has been estimated at $200 billion-$300 billion a year. What do you think the costs will be if a person with a significant disability experiences stress and burnout?

Ashley loves art – and music – and plants – and shopping – and traveling – and reading – and math – and science. Restricting her enjoyment of those things during her remaining school career – approximately seven years – will not a happy future employee make. And don’t even get me started on the preconceived notions about the type of work our children with significant disabilities will be targeted to perform. Trust me, if you ask Ashley to stuff envelopes for eight hours a day, five days a week, envelopes won’t be the only things getting stuffed.

School districts need to lighten up. Let our children with disabilities enjoy their high school years as much as non-disabled students. Don’t start them down a path to stress and then wonder why it costs so much to provide care for them later in life.

Chill, baby….

Monday, August 24, 2009

Not Steve Martin's Jerk

Just when you think things may be settling into the usual crazy routines....something new pops up. That always seems to be the case with Ashley's seizures. We find a medication, or multiple medications, that help for a while - sometimes a long while. Then out the the blue, things change.

For the last week or so, Ashley has been 'jerky'. Usually early in the morning and again at night before bedtime. At first, I didn't know a better way to describe it than the word 'jerky' or strong 'twitches'. She'll be sitting and playing or watching TV, and her upper body will jerk - equally on both sides. I've also seen it start up again during dinner.

These jerks don't seem to bother her, and in fact, sometimes she seems to think they are funny. And to someone not used to the many types of seizures, it can look a little funny. But knowing how Ashley's seizures have changed over her life - different types, shorter or longer, etc. - seizures were the first thing that popped into my mind.

So, after picking the brain of my dear friend, Lynnette, who has also addressed the 'jerks', I believe what Ashley is experiencing is myoclonic seizures.

So, do we need more medicine? Different medicine? Less medicine? I guess the neurologist will answer those questions for me. Has anyone else had experience with these types of seizures? I would love to hear from you...

Friday, August 21, 2009

How Words Feel

Back in early 2007, I wrote about using a technique called Tadoma as one more weapon in Ashley’s communication arsenal. Though almost never taught today, Tadoma was taught widely to deafblind children from the 1930’s to the 1960’s.

As I wrote in my previous entry, Tadoma, as described by Wikipedia, is a method of communication used by people who are deafblind, in which the person places his thumb on the speaker's lips and his fingers along the jawline. The middle three fingers often fall along the speaker's cheeks with the pinky finger picking up the vibrations of the speaker's throat. It is sometimes referred to as 'tactile lipreading', as the person who is deafblind feels the movement of the lips, as well as vibrations of the vocal cords,

The theory is that the person who is deafblind will be able to feel the vibrations, the positions of the lips, the air expelled, and other such physical cues, and from that might be able to learn to speak. The Tadoma method was invented by American teacher Sophie Alcorn and developed at the Perkins School for the Blind in Massachusetts. It is named after the first two children to whom it was taught: Winthrop "Tad" Chapman and Oma Simpson.

When I first began my search for more information on the technique, I found little. So, imagine my surprise when I found an article in Psychology Today, dated earlier this month, that spoke of Tadoma.

The article chronicles the path Rick Joy has followed for over 50 years in his mastery of Tadoma. Also, according to the article, Tadoma is rarely taught these days because of new technologies and medical advances for children who are deaf. But the article, and what I experience when Ashley uses Tadoma, describes something more than just a communication system. It takes human interaction to a different and more beautiful level in my opinion.

Ashley has made it very clear that the technologies of today are not her first choice for communication. Sign language and Tadoma are her choices, and I support those choices completely. Both those tools are beautiful expressions of the human spirit as well as a means of communication.

Thursday, August 20, 2009

Thankful Thursday

Today I am thankful...

  • that even though this is the day from hell at work, I have found a few minutes to post my thankful thoughts. Who needs to eat lunch anyway?

  • that Chip has survived his first class at college. He was so anxious this morning that I felt like giving him a tranquilizer. (I didn't!)

  • that there is only one more week of ESY services for Ashley. While the bulk of her summer services were great, these last two weeks with an unqualified teacher have been horrible.

  • for the big red Hanover tomato my boss brought to me this morning

  • for my friends Lynnette and Jackie who never tire of hearing me complain about my school district

  • for the free chocolate chip cookie I won in the Subway Scrabble game

  • for the great visit I had with my brother and niece last weekend. Those weekends just never seem long enough nor do they come frequently enough

  • that I survived yet another chapter of Ashley's most recent IEP meeting yesterday. Are we any closer to having an IEP in place for the start of the upcoming school year? Not sure...

Wednesday, August 19, 2009

Special Exposure Wednesday

Katy did it, and you can tell by the smirk on her face that she is not the least bit repentant! A big thanks to my son, Chip, for this excellent picture!

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

Tuesday, August 18, 2009

Anxious To Make It Better

When I was young and in school, I would start to get both excited and anxious this time of year. Knowing the start of school was right around the corner brought thoughts of new starts along with a new backpack. I loved the smell of new books and stacks of perfectly lined paper. I looked forward to packing my lunch in a shiny clean new lunchbox, and all my pencils were sharpened weeks in advance.

I also experienced a little anxiety. Would I fit in? Would I have lots of friends? Would I be able to find all my classes, and would I be able to keep good grades? But the excitement always overshadowed the anxiety. I wish that could be the case for Ashley.

Ashley loves school, but transitions are difficult. This year brings a multitude of those transitions – high school, a campus type of school, different teachers and aides, different students, a different layout to the classrooms, lunch rooms instead of lunch room, and new nurses and other administrators. She should have had some preparation in her last year of middle school to help with the transition, but she didn’t.

More often than not, students exiting middle school visit the high school they will attend. They meet the staff and walk around the school so the experiences in September are not so overwhelming. But that didn’t happen for Ashley, and when you throw in the fact that she is deafblind, it’s easy to see why I am so anxious.

I’m going to do my best to make the beginning an exciting time for her – new clothes, new shoes, a new backpack and lunchbox – but I’m not sure what else to do.

I could use some ideas….

Monday, August 17, 2009

Smart Canes

Almost every day I run across a news story about technological advances to aid people who are blind, deaf or deafblind. It's very exciting time right now as it seems there is more and more focus on finding assistive technology to make all of life more accessible for people with disabilities.

I've mentioned in previous posts about how my son, Chip, worked in the biomedical engineering lab at our local university this summer to assist in the development of a haptic device used to teach geometry to students who are blind. And then there was the story about Virginia Tech and their car for blind drivers. Now, I've found a story about a 'smart cane', a white cane with technology inbedded to make travel safer for people who are blind. What makes this all the more exciting is knowing how much more Ashley will be able to accomplish and experience as a result of all these developments!

According to the Associated Press, A cane equipped with the technology that retailers use to tag merchandise could help blind people avoid obstacles.

An engineering professor and five students at Central Michigan University have created a "Smart Cane" to read electronic navigational tags installed between buildings to aid the blind in reaching their destinations more easily.

"This project started as a way for me to teach students to see and understand the ways that engineering can be used for the greater good," said Kumar Yelamarthi, the professor and project leader. "We wanted to do something that would help people and make our campus more accessible."

During the spring term, Yelamarthi and five senior engineering students tested the cane, which is equipped with Radio Frequency Identification technology, similar to what retailers put on products to keep them from being stolen.

The Smart Cane contains an ultrasonic sensor that is paired with a miniature navigational system inside a messenger-style bag worn across the shoulder.

For the test, the students installed identification tags between two buildings on the campus in Mount Pleasant, Mich.. A speaker located on the bag strap gave audio alerts when the system detected an obstacle and told the user which direction to move.

Students wearing glasses that simulate visual impairment tested the cane.

The students also created a vibrating glove to assist those who are both visually and hearing-impaired.

Yelamarthi said it's one of the first outdoor applications of RFID and said he plans for students in upcoming classes to further refine the system while he seeks grants to speed the research.

The next step probably involves using the system in a wider area. Down the line, Yelamarthi wants to work toward integrating the Smart Cane's data with GPS.

Friday, August 14, 2009

How Does A History Disability Look?

The best gifts are those that are completely unexpected. I received one of those gifts this week in the form of an unexpected advocate.

The IEP meeting to determine Ashley’s placement for her first year in high school, and to develop her goals, objectives, accommodations and modifications, and related support services was held this week. It should have been held before school ended last year, and I don’t know the reason for the delay.

The meeting was expected to be contentious – Ashley’s IEP meetings always have been. The school district had eleven staff attending – people from Central Administration, the teacher, related service staff, and a high school assistant principal. I went by myself because I would feel terrible subjecting any of my friends to hours long meetings where people often cross the line into rudeness.

While I waited for the meeting to begin, a woman I have never seen before joined me on the office couch. I had heard her tell the office staff that she was there for Ashley’s IEP meeting, so when she sat down, I introduced myself as Ashley’s mother. She told me she was a contract vision teacher and also told me her name. I recognized the name. She is retired from a neighboring school district and has the reputation of being a no-nonsense, student-centered person. I immediately felt a connection to her.

After finally being called to the meeting room (most of the school staff meets before Ashley’s IEP meeting to discuss strategy), Ms. Vision Teacher took a seat right next to me. Introductions were made all around the table, and we got down to the business of IEP development.

The school staff first read me their PLOP statement (Present Level of Performance). I suggested changes because there were not enough academic related statements in the PLOP – the fact that Ashley likes beading just doesn’t seem all that relevant to me. I then read the PLOP statement I had written to reflect what Ashley had done and learned over the summer. I also handed out current vision and hearing reports from Ashley’s doctors.

Everyone was still playing nicely at this point. We went through goals and objectives for vision, reading, math and communication. We had all tweaked these a bit last school year when starting to discuss the IEP, so there were not too many changes to be made. We then moved to history and science objectives. One of the Central Administration staff asked why we had those things in the IEP. I looked questioningly at her and asked, “Why not?”

My question was answered with the statements, “Ashley doesn’t have a science or history disability” and “We are not teaching history this year – it’s a science year.” I’m sure the look on my face reflected my astonishment. Surely, I thought, they must be kidding, and just what does a science and history disability look like? But they weren’t kidding. Obviously, we went on to discuss these issues some more, and Ashley will have science and history in her IEP.

It was then time to move to accommodations and modifications. These items don’t usually cause too terribly much discussion, but when the one that stated “Ashley will have assistive technology for computer use”, the vision teacher spoke up and started listing exactly what she wanted Ashley to have. The Central Administration staff responded by saying, “We have something like that we will use instead.” The vision teacher said, “No, she needs exactly what I specified.” I thought there would be arguments, but the Central Administration staff conceded. I was really, really liking this vision teacher.

We then discussed orientation and mobility, a service that any and all blind children should have from the time they enter school. Ashley, however, has not had O&M services since preschool. The argument always was that the school district had no O&M teacher on staff. That is a true statement, and O&M teachers are indeed in high demand. But, as I always reminded them, that was their problem. But, because I always have lots of battles to fight, that one got pushed to the back burner. But the vision teacher insisted it come to the front burner.

Again, the vision teacher was adamant, and brushed off any disagreement. So, Ashley has O&M in her IEP for the first time in eight years. Did I say I really, really love this vision teacher?

The meeting had lasted about 3.5 hours at this point. The only item left was the biggest one – the elephant in the room we were all ignoring.

Because Ashley is deaf, I believe she needs an interpreter. To me, it is a no-brainer. The school district feels otherwise. We have fought this issue for years and years. Some years, Ashley has lucked out and gotten an aide who is a fluent signer. More often than not, she gets an aide who may know 10-15 signs.

We’ve been through state complaints, independent consultant reports, more state complaints, and always the school district hears that Ashley needs more sign language support, and still they fight it. In fact, we are in the middle of a complaint right now – a complaint that has progressed to involving attorneys.

So we all knew we were not going to finish the IEP that day. We tabled the discussion about sign language services, and will reconvene next Wednesday. If the complaint is not resolved by our state Department of Education, or if the school district continues to refuse to provide an interpreter, I’m not sure where we will get with the meeting.

As we were ending the meeting, the Central Administration staff asked me if we could just include the core participants for the Wednesday meeting. I agreed. The vision teacher asked if she needed to be present. The Central Administration staff said no, but the vision teacher turned to me and asked, “Do YOU want me to be there?”

Again, did I say I love this vision teacher?

Thursday, August 13, 2009

Thankful Thursday

Today I am thankful…

  • for cooler weather. Cool means 85 degrees, but that is much better than 98

  • that my brother and niece will be visiting this weekend. It’s been too long since we seen them

  • that I finally know where Ashley will be going to high school this year

  • that all Chip’s college tuition is paid and books are bought for this upcoming semester

  • that the summer is winding down. One of my children REALLY needs to go back to school!

  • that I met a GREAT vision teacher this week – a school district employee that actually puts the student first

  • for the handsome hawk that is still kicking a** and taking squirrel names in my yard

  • that I have some small steaks marinating, waiting to be cooked on the grill for tonight’s dinner

  • that one of our two pumpkin plants is still alive

  • that my car is still functioning – it’s a day to day situation, and even though to me it’s a clunker, to the government it’s one mile over the clunker limit.

Wednesday, August 12, 2009

Special Exposure Wednesday

Warning - the following pictures may be too graphic for anyone squeamish about Mother Nature's animal kingdom....

I know the following statement may not set well with some people, but I'm just going to be honest. I HATE squirrels. They dig up and eat my flower bulbs. They empty my bird feeders in minutes, and they ravage my vegetable garden. To me, they are nothing more than rats with furry tails. Unfortunately, there is nothing I can do about the havoc they wreak in my yard.

We can't shoot them - I can't risk putting poison out for them - and humane traps just leave me with the problem of what to do with a growling, writhing, pissed off creature that may or may not carry rabies.

So imagine my delight when 'my' hawk visits the neighborhood. He only comes a few times a year - maybe that whole migration thing - but when he comes, the squirrel buffet is open! When the furry rats realize the hawk is in town, they hide and my garden is safe. But, there are always a few slow ones, and Mr. Hawk has his fill before stretching back into the recliner to enjoy the scenery.

Below is a series of pictures my son took last week during one of Mr. Hawk's meals. There is even a picture of Mr. Hawk complaining because my son got a little to close to his plate.

Isn't Mother Nature wonderful :)

Tuesday, August 11, 2009

Time to Trim the Sails

SAIL TRIMMING - This is the process of adjusting the sails regularly to ensure that the boat is getting the right driving power.

Today is finally the day for Ashley’s IEP meeting to determine both her educational program for next school year (yes, the one that starts in just a few weeks), and her placement. Oh how I wish that things would go smoothly.

I am an optimist – always have been. But, my school district has beaten that out of me when it comes to Ashley’s educational program. So, before any of you well meaning readers offer me ideas and advice on getting along with my school district, please search this blog with the term ‘education’ before offering that advice. As much as it pains the optimistic spirit inside me, I already believe things will not go well today.

There are so many issues. Lack of communication support – Ashley really is deaf, I have the audiology report to prove that, and her only means of communication is sign language. Trust me, over the summer, she has not learned to hear what you are saying. Lack of Braille instruction – Ashley really is blind, I have the opthamology report to prove that. This summer has also not brought a miraculous healing of her eyes. Lack of belief in her academic ability – Ashley really is smart, I have work samples and videos to prove that. She is, however, a teenager, and if she thinks she can get away with being lazy, she will. Your expectations will set the path for her performance.

My school district is bringing eleven people to the meeting – ELEVEN! I am bringing no one. Tell me, how productive a meeting can we really have with twelve people sitting around a table? The only positive thing about the meeting is that it starts at 1pm today and I have never, ever known a school district employee to work past the time they are scheduled to end work for the day. So, I know our meeting will end promptly at 5pm. That doesn’t mean will we have a completed IEP – in fact, I’m sure we won’t because I am not signing anything until my attorney reviews it.

I’m prepared for the meeting – consultant reports, medical reports, work samples, etc all tucked neatly into my binder with copies for all ELEVEN school staff. I’m sure the school staff will also come prepared – a draft IEP they expect to be signed as is, written comments from their ‘highly qualified’ teachers and aides, and enough opinions to power a sail boat on a calm day.

Unfortunately, I think the seas are going to get mighty rough this afternoon…Please pray for smooth sailing and for passenger Ashley to be provided the services she needs and to which she has a right.

Monday, August 10, 2009

The First Giddyup

Ashley experienced yet another ‘first’ this past weekend. Imagine for a moment that you cannot see or hear. A person you trust asks you to put your right foot onto a hard bar, then push yourself up, swing your leg over something wide and hard, and then balance yourself and hold onto a small thing sticking up right in front of you. The person you trust never lets go of you, but still is asking you to do something very new and very scary. Would you do it?

Ashley did.

She took a ride on her first ever carousel horse! So in addition to mastering the mounting of the horse, she then had to hold on while feeling her world go around and around. I think that was one of the bravest things she has ever done, and I am very proud of her.

I am also very grateful to Miss Amy for pushing Ashley to try these new experiences!!

(I made a video of the whole thing, but wrongly assumed that I could turn my little flip video camera to take a vertical rather than horizontal movie. So, I have the movie but the only way you could watch it is to turn your head or your monitor sideways. If someone knows of some free software that would help me flip the movie, I would be most appreciative.)

Friday, August 7, 2009


Ashley had a visit with her new dentist yesterday. It went much better than the previous dentist visits. The new dentist is associated with our local Children’s Hospital, and as such, is more comfortable treating children with significant disabilities.

The dentist let Ashley remain in her wheelchair rather than asking her to move to the examination chair. The chair move had always been problematic in the past. Ashley feels comfortable in her own chair, and the sensory impact of moving to a strange chair would be the first step in making the visit difficult.

The dentist and helper also understood that Ashley was deaf and that I needed to interpret what they were saying to her. Because Ashley doesn’t wear hearing aides, people often assume she can hear (even if I am signing). Her previous dentist, for example, would continue to talk to her in a low, soothing voice that I’m sure worked for most of his patients, but not for Ashley. Ashley would soon get frustrated because she knew he was trying to communicate but she couldn’t understand.

Previously, to even clean Ashley’s teeth, she had to be restrained. But with the new dentist, she just sat there and opened her mouth. Her teeth were cleaned, a little bit of tartar was scraped off, and she got a fluoride treatment. And afterwards, she was still happy!

The only negative of the visit was that the dentist was unable to recommend an orthodontist. According to the dentist, most orthodontists are not familiar with or comfortable with sedating patients. And Ashley would more than likely have to be sedated for orthodontist visits. The dentist suggested I try the dental clinic at our local teaching hospital, but she wasn’t hopeful that even they would be in the position to sedate. The dentist did agree that Ashley could greatly benefit from orthodontic treatment, but like me, doesn’t know how to make that happen.

So, readers, I need your help. Do you know of an orthodontist that might be willing to work with a child with significant special needs and who would be willing to use sedation if necessary? I would be willing to travel to the Tidewater area, the DC Metro area, Charlottesville VA, or Raleigh NC.

Thursday, August 6, 2009

Thankful Thursday

Today I am thankful...

  • for this cooler, rainy day. It's a nice respite from summer's heat.

  • for the incredible spaghetti sauce I made this week from my garden tomatoes

  • that finally we have an IEP date to develop Ash's IEP for the upcoming school year - oh yea, and to decide where she will attend school. I really don't know what the rush was since SCHOOL STARTS IN THREE WEEKS!

  • that Rocky dog is learning to love staying outside during the day. His chewing of TV remotes, books, etc got him banished there beginning last week.

  • for the beautiful job Chip has done painting some old furniture. It looks like I bought a whole bunch of new furniture.

  • that my family is no where near as dysfunctional as some I know

  • for reconnecting with an old acquaintance last night on the phone - an adoptive mom of two beautiful little girls

  • that I will be participating again this year in the VaLEND program at Virginia Commonwealth University. I love the opportunity to show professionals what life is really like being a parent of children with disabilities.

Wednesday, August 5, 2009

Special Exposure Wednesday

For a child who is blind like Ashley, the world becomes a very tactile place. Ashley loves creating art, and her works always have a tactile component. Here is her latest - She took Legos and put them in the holes of the baby/pet gate at our back door. Look closely and you will see that they form a heart.

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

Tuesday, August 4, 2009

Day Off

Today brings the final farewell for Mr. B. It's a tough day for me, and I have decided to take the day off from blogworld. Hope you understand. See you all tomorrow for Special Exposure Wednesday.

Monday, August 3, 2009

Diner Part Deux

Last October, I wrote about an unexpected and wonderful experience my children and I had while having lunch at one of our favorite restaurants. Well, it seems this particular restaurant is chock full of ‘experiences’ for us because something else happened this past Saturday.

We decided to have lunch at the River City Diner again. It was quite crowded but the server was agreeable to seating us in a quiet location away from the hustle and bustle of the lunch crowd. Ashley, understandably, does much better with meals when we keep the stimulation and distractions to a minimum, especially on this particular Saturday because she wasn’t feeling her best.

As the server approached our table to take our orders, Ashley hit the side of her head with her hand. It’s something she does when she is distressed, and although it doesn’t happen often, when it does happen it can be quite disconcerting. The server stopped in her tracks, a few yards from our table, and had a look of shock and horror on her face. She recovered quickly though, and came to the table to take our drink orders.

When the server returned with our drinks and to take our food orders, she immediately apologized for her earlier actions. She said that she had a nephew with Autism, and that she should have behaved better. She convinced me that she understood such behaviors, and she seemed genuinely contrite. I told her I appreciated her apology, and then just gave her our orders.

She was quite an attentive server, a young mother she told us, and a very typical diner sort of waitress. While the reaction initially annoyed me, the result, I believe, was positive. And, I’m hoping that some of the other customers seated nearby also were aware of the exchange, and perhaps had their minds opened a bit also.

What do you think? What would your reaction have been, and would you have handled things differently? I’m really interested in your comments, because as parents of children with special needs know, this sort of situation is common.