"One can never consent to creep when one feels an impulse to soar." - Helen Keller
Friday, August 29, 2008
Trying To Find A Balance
One of the things I have always struggled with as a parent is how much of a right to privacy my children should have? Now that I have 4 teenagers, that question is on my mind constantly. So I'd like to know what you think? How have you dealt with the following issues:
Do you think your teenager has a right to privacy?
Are there some things you believe that teenager should be able to keep private and some things that you as their parent should have a right to see?
Do you check their email – reading what they send and receive?
Do you check their list of visited sites on the Internet?
Do you have any parental control software on their computers?
Are your children allowed to use their computers alone in their rooms?
Do you feel as a parent you have a right to go through anything in your child’s room, school locker, school notebooks, etc?
Are your children allowed to use the phone in a private place in your house?
Does your child have a cell phone with no use restrictions?
Do you review a detailed bill of their cell phone usage?
Do you know all your child’s friends, or are they allowed to go to houses of people you have never met?
Have you met the parents of your child’s friends?
If your child drives, do you check the car’s odometer?
Does your child have a curfew, and consequences for missing that curfew?
Do you feel your are more strict or less strict as a parent than your parents were with you?
What is your biggest fear as it relates to you children?
Thursday, August 28, 2008
Thankful Thursday
Today I am thankful...
- for rain - finally we are getting rain, lots of rain. It's too late for my garden and my flowers, but it's good for Mother Earth
- for brownies filled with chocolate chunks, walnuts and dried cherries - yummmm!
- for the news that the next season of Dancing With The Stars, beginning in late September, will once again feature professional dancer, Maksim - like the brownies, yummmm!
- for the little stretch of cooler weather we are enjoying. The leaves are falling from the trees and it is beginning to feel like Fall
- for my clean house, healthy kids, and the full refrigerator
- that my friend, Sara, is marrying the love of her life this weekend
- for cucumber melon scented shower gel. It's such a refreshing way to begin the morning.
- that I had enough money to pay all the school fees for my four children. Of course that money could have also bought us a long weekend at the beach, but who am I to complain about the FREE education my children are getting.
- for long holiday weekends and time off from work
- for people who care - Stephen, the contractor, Jonathan and Sophia, the legal team, and everyone who helped them along the way to securing an accessible bathroom for Ashley
Wednesday, August 27, 2008
Where Have You Been All My Life?
I mentioned in yesterday’s post about my bathroom renovation that the new bidet toilet seat deserved a post of its own. I admit I was a little squeamish about using it the first time, but after one try, I’m sold on the concept, and wonder where this thing has been all my life.
If you’ve traveled to Europe, you are probably familiar with bidets. They usually sit beside the toilet and provide cleansing to the privates. Of course, as Americans, we often have no clue what a bidet is when we first see one. I have heard stories of young travelers believing the appliance was meant for hand washing or to substitute as a water fountain (yech!). But when the concept is finally explained, you will notice an imaginary light bulb above the head of most people and hear the ‘oh yea’ come out of their mouths.
In America, bidets never really caught on. More often than not, there is not enough room in our bathrooms for a second ‘throne’. That was definitely the case in my bathroom. My house is 48 years old. When it was built, emphasis was placed on large living areas and bathrooms remained small. So when I was reviewing options for our bathroom renovation, I was quite excited to find something called a bidet toilet seat. In September 2007, the New York Times ran this article on the subject of bidet toilet seats.
The one I settled on for our bathroom is manufactured by a company called CleanButt. Really. I’m not kidding. But setting aside the giggle-inducing name, this thing is incredible! I can adjust the temperature of the toilet seat. I can adjust the temperature of the water. I can change the position of the spray and can even have the spray pulse. The adjustments can be made to make sure every part of one’s privates are cleansed. And then after the warm water spray, I can turn on the air dryer – yes, I can blow dry my butt! And the best thing – I can do all those things with a remote control!! My toilet has a remote control!
Seriously, I sought out this solution because Ashley’s lack of fine motor control means she doesn’t always get as clean as she should after toileting. That problem is now solved and she also loves the bidet seat. After sharing this information with some of my friends, they immediately began brainstorming about others for whom this seat would be beneficial – one friend’s mother with rheumatoid arthritis who requires assistance in the bathroom, another friend’s young child who is working on toilet training, and another friend’s family member who has lost an arm.
I urge you to visit the CleanButt (giggle, giggle) website and take a look for yourself. They even have a video you can view, but don’t worry, they don’t have a real person using the bidet in the video.
Beach Memories
Where did the summer go? In less than a week, my children will all be back in school, and memories of our times at the beach will be just that - memories. But, when I start to miss those summer days of sun, salty lips, and sand in places I would rather it not be, I can just go back and look at all the pictures we took.
This is a picture of my lovely niece, Melody, during our stay at the Outer Banks of North Carolina.
Tuesday, August 26, 2008
Grab Bars and Bubble Baths
(Make sure to check out the pictures at the end of this post.)
Ashley took a bath Sunday night for the first time in two years. Before you say “EEEWWW”, she has been taking showers. But she really loves to take a bath. Unfortunately, the main bathroom in our house was not accessible, and as Ashley has grown and her seizures have increased, she really was not safe trying to move in and out of the bathtub.
If you’ve been following my blog, you know that I requested that Ashley’s insurance, Virginia Medicaid, pay for accessibility modifications to the bathroom. That was 2.5 years ago. After my initial request, a struggle ensued that took us in and out of hearings, including a couple in Federal court, through denials and requests to recuse, and finally to victory. This post from June provides a little more detail into the wranglings we encountered. Today, however, is our day of celebration. The bathroom renovation is complete, and Ashley just can’t stop smiling!
So many people played a role in our success. At the end of June, I wrote a post toasting the attorneys whose persistence and commitment ensured that success. Today, I want to thank the person who actually did the bathroom renovation – Stephen Curtin of Curtin Brothers Contracting (curtinbrothers@yahoo.com).
I don’t know how many of you have dealt with Medicaid providers in the past, but my experience has seldom been positive. Medicaid programs are notorious for underpaying for services, and as a result, service providers are often not the high-standard professionals we expect. When I have found a Medicaid provider that does an outstanding job, it is because that provider has a real heart and commitment for service to people with disabilities. And Stephen Curtin definitely has those things.
Stephen’s work is true craftsmanship. He was a professional in the fullest sense of the word, and I knew just from watching him work that our bathroom was going to be exactly what Ashley needed. He listened to my concerns. He offered suggestions. And when he realized that I was overwhelmed to the point of indecision with all the choices that had to be made (paint color, tile color, shiny or brushed silver, etc, etc.), he offered to have his sweet wife help me.
Stephen was considerate of my family’s schedules. He was extremely neat and had you visited our house, you probably would never have known a major renovation was underway. In short, he was a perfect guest as well as a contractor. In fact, I was reminded of the old TV show, Murphy Brown. Murphy had a painter that was always around, and was an integral part of her life. The painter was there from the first show to the last. While Stephen was working, I wanted to be Murphy Brown. I would like him to always be around, and if I win the lottery, I will make sure he is!!
So thank you, Stephen. You are the reason that Ashley couldn’t stop smiling during her bubble bath last night. You are the reason she will be safe and able to progress in her self-care, and you are the reason I can rest easier now knowing my daughter has what she needs and deserves in a bathroom. Those things are so very important to me, and I know you know exactly what I mean…
Passageways are wider and the vanity is rounded - no more g-tubes caught and pulled out on sharp vanity edges.
Grab bars help Ashley in and out of the tub, and with moving from a sitting to standing position. All faucet handles are ADA compliant, and the shower controls were placed at just the right height for Ashley.
A grab bar by the toilet helps with Ashley's stability, and the bidet toilet seat - oh my, the bidet toilet seat!! That deserves its own post tomorrow!!
Ashley took a bath Sunday night for the first time in two years. Before you say “EEEWWW”, she has been taking showers. But she really loves to take a bath. Unfortunately, the main bathroom in our house was not accessible, and as Ashley has grown and her seizures have increased, she really was not safe trying to move in and out of the bathtub.
If you’ve been following my blog, you know that I requested that Ashley’s insurance, Virginia Medicaid, pay for accessibility modifications to the bathroom. That was 2.5 years ago. After my initial request, a struggle ensued that took us in and out of hearings, including a couple in Federal court, through denials and requests to recuse, and finally to victory. This post from June provides a little more detail into the wranglings we encountered. Today, however, is our day of celebration. The bathroom renovation is complete, and Ashley just can’t stop smiling!
So many people played a role in our success. At the end of June, I wrote a post toasting the attorneys whose persistence and commitment ensured that success. Today, I want to thank the person who actually did the bathroom renovation – Stephen Curtin of Curtin Brothers Contracting (curtinbrothers@yahoo.com).
I don’t know how many of you have dealt with Medicaid providers in the past, but my experience has seldom been positive. Medicaid programs are notorious for underpaying for services, and as a result, service providers are often not the high-standard professionals we expect. When I have found a Medicaid provider that does an outstanding job, it is because that provider has a real heart and commitment for service to people with disabilities. And Stephen Curtin definitely has those things.
Stephen’s work is true craftsmanship. He was a professional in the fullest sense of the word, and I knew just from watching him work that our bathroom was going to be exactly what Ashley needed. He listened to my concerns. He offered suggestions. And when he realized that I was overwhelmed to the point of indecision with all the choices that had to be made (paint color, tile color, shiny or brushed silver, etc, etc.), he offered to have his sweet wife help me.
Stephen was considerate of my family’s schedules. He was extremely neat and had you visited our house, you probably would never have known a major renovation was underway. In short, he was a perfect guest as well as a contractor. In fact, I was reminded of the old TV show, Murphy Brown. Murphy had a painter that was always around, and was an integral part of her life. The painter was there from the first show to the last. While Stephen was working, I wanted to be Murphy Brown. I would like him to always be around, and if I win the lottery, I will make sure he is!!
So thank you, Stephen. You are the reason that Ashley couldn’t stop smiling during her bubble bath last night. You are the reason she will be safe and able to progress in her self-care, and you are the reason I can rest easier now knowing my daughter has what she needs and deserves in a bathroom. Those things are so very important to me, and I know you know exactly what I mean…
Passageways are wider and the vanity is rounded - no more g-tubes caught and pulled out on sharp vanity edges.
Grab bars help Ashley in and out of the tub, and with moving from a sitting to standing position. All faucet handles are ADA compliant, and the shower controls were placed at just the right height for Ashley.
A grab bar by the toilet helps with Ashley's stability, and the bidet toilet seat - oh my, the bidet toilet seat!! That deserves its own post tomorrow!!
Monday, August 25, 2008
Awwww, Thank You!
My buddy, Allie, over at A Day In The Life of The Whittinghams, sent me an award and said some very sweet things. How did she know I was sorely in need of that virtual hug?? Here's what she said:
Ashley's Mom is an incredible, inspirational woman. A true woman who provides the voice for special needs individuals. She shows you that individuals who have special needs are just like us and we as a society should recognize that. She has an incredibly beautiful, special family and captures that beauty and shares it with the world. I would be incredibly honoured to meet Ashley and Ashley's Mom one day and my biggest wish is that it will happen.
We will meet one day, Allie, I really believe that!
Giving New Meaning to the Term "Tongue In Cheek"
One of the reasons I pursued a career in technology is that I find the advances so exciting. It's never been a boring job. And knowing that we as a society have just begun to mine the potential of technology is even more exciting.
Check out this story and you will see what I mean:
Tongue computing Aids Disabled
Next Steps
This weekend, Ashley took another step away from little girl and toward young lady. The bunnies, the pastel pink and mint green, and pictures of kittens and puppies left her room. They were replaced by a more sophisticated color (teal green), floral fabric, and her own artwork. She now has a teenager's room, and she loves it and wants to share pictures with all of you!
Ashley discovered that painting was fun - no more sponge-glazed purplish pink...
Floral fabrics replaced childhood prints and grown up sayings adorn the wall above her bed...
She loves having her own artwork hanging in her room, and her sweet brother, Chip, made sure her TV, DVD player, and VCR were all set up just right for her!
Life is good!!!
Ashley discovered that painting was fun - no more sponge-glazed purplish pink...
Floral fabrics replaced childhood prints and grown up sayings adorn the wall above her bed...
She loves having her own artwork hanging in her room, and her sweet brother, Chip, made sure her TV, DVD player, and VCR were all set up just right for her!
Life is good!!!
Friday, August 22, 2008
Son Shine
How can this be? Just yesterday, I sat in my rocking chair, my tiny son at my breast, and wondering how I would ever cope as a single parent. I had finally convinced my abusive, alcoholic husband to leave, but in my darkest moments I wondered which was worse – staying in the abusive relationship or being a single parent. The answer came as I watched my dear son, Chip, grow and mature.
Today Chip is almost 18 years old. He will be graduating from high school this year, and he is excited at all the options his future holds. He is a really good man – kind, generous, intelligent, caring, and compassionate. He has grown up with three adopted siblings with disabilities, and he feels he is a better person for that experience. I agree with him.
I believe I made the right decision almost 18 years ago. Single parenting has been very difficult, but I need only look into my oldest son’s eyes to know that his peace is my peace.
I am so very proud of you, Chip, and I love you more than life itself.
The absolutely gorgeous photo of Chip was taken by the best photographer in the world - my brother, Carl, of Hampton Roads Photography.
Thursday, August 21, 2008
Thankful Thursday
Today I am thankful...
- that my bathroom renovation is almost complete. I know, I know - I've been saying that for a while, but this time I really believe it. Grab bars, a towel rack, a little more paint and caulk, and then we'll have the ribbon cutting ceremony!
- that my 17 year old son actually said, "Do you think I need to get a haircut before school starts?"
- that Ashley's speech therapist is back from maternity leave. We missed you, Ms. Alex!
- for bubble bath
- for double coupons at the Kroger
- that Corey had a good time with his grandparents last week, and that they approve of the way I am raising him.
- that Ms. Pennington, a teacher at Ashley's summer school, brought her wonderful dog, Henry, to visit Ashley.
- for all the great pictures my brother took of my son, Chip, for his senior portfolio
- that the conciousness of many, many people has been raised by all the blogs condemning the movie, Tropic Thunder.
- for the reed scent diffuser next to my bed - ahhh, the relaxing smell of the ocean.
Wednesday, August 20, 2008
Special Exposure Wednesday
Every Wednesday over at 5 Minutes For Special Needs is Special Exposure Wednesday. I love seeing everyone's pictures, and decided to share one of my own today. For this particular week, the theme is SOOC - Straight Out Of the Camera - no photo editing, in other words.
Here is my entry. Someone please tell the blind kid (my lovely Ashley) that the cow is not real....
The Cost of Education
Okay, I can’t put it off any longer. I’ve got to buy Ashley some new socks, get the boys those super giant notebooks to give the illusion of organization to their school work, and pull out the IEPs so I can gently(?) remind teachers what they are supposed to be doing this school year.
I’m really not ready. Although I long for the routine and predictability that the school year brings to our daily schedules, I’m not ready to put on my smiling, cooperative face and pretend that my school district is trying its best to educate my children.
While there are individual teachers and aides who sincerely care about my children, my school district as a whole could care less if we stay or go. My four children will again don their student numbers and become part of the mass called ‘student body’. They will have lunch line numbers, schedules with their class room numbers, and grades reflecting their performance numbers. But will they have names?
How many battles will I have to fight this year? Will Jessica get her laptop computer that the school district promises every student? Will Corey be challenged in his classes or just written off as a not-too-bright kid, a kid who is easier to ignore than to put forth effort to figure out? Will Ashley receive the communication support she needs or will the same struggles I have faced since she started school at age three continue to surface?
I think this year I will keep a running list of all the battles – those that are small and those that aren’t. I’ll record how much time I spend fighting for an appropriate education for my children with disabilities. Then maybe at the end of the school year, I will present my school district with a bill for my services as their ‘watchdog’. Surely they would want to pay it, don’t you think?
Tuesday, August 19, 2008
How Dare He?
Ashley had a dentist appointment this morning. The dentist is one she has seen for several years, and one who touts himself as a dentist for children with special needs. Until today, Dr. Karl had done an adequate job of caring for Ashley’s teeth even though his manner was a little brusque and rushed. But today things did not go so well. In fact, they went horribly wrong.
Ashley did not want to get into the chair to have her teeth cleaned by the assistant. But with some major ‘encouragement’ from both Amy and me, she eventually did agree and then put her head back and cooperated through the cleaning. When Dr. Karl came in, she became a bit more anxious. She didn’t want to cooperate with him, and for whatever reason, he seemed quite impatient. He spent all of thirty seconds looking at her teeth and declared she had no cavities. He then turned things back over to the assistant.
Before he left the room, I asked him about braces. I wanted a referral to an orthodontist that would take Ashley’s Medicaid insurance. He scoffed and said braces probably wouldn’t work. I agree that braces will be a challenge, but with the technical developments in recent years, I wanted to at least ask an orthodontist some questions.
Dr. Karl, however, said with a very definitive opinion that he didn’t think braces would be possible. I asked why. He said, “Well, you know, the tumors she has” referring to her three brain tumors. Then he said, “Does it really matter?” which I took to mean does it really matter if Ashley’s teeth were crooked. I stared in shocked silence as he walked out of the room.
How dare he assume that it not matter to Ashley if her teeth are pretty. How dare he assume that I should care less about the health and appearance of her teeth just because she has disabilities? I have absolutely no doubt that he wouldn’t even consider asking a 13 year old girl without disabilities if it really mattered.
I got angrier and angrier as I drove to work. I will be changing dentists for Ashley. I will be writing a letter to Dr. Karl and his partners to let them know exactly why I am leaving their practice. I sure the small amount of money he gets from Ashley will not make a difference, but I refuse to subsidize his discriminatory and insensitive attitude for one more minute.
And I will share this story with as many people as I possibly can.
Monday, August 18, 2008
A Very Big Deal
Pictured - Special Olympics Virginia athletes Frank Stephens (left) and Paul Marretti (right) with Quincy Jones
Although the disability blog world has been full of posts and outrage at the Tropic Thunder movie, I haven't had a chance to express my personal feelings of disgust. However, even though I was consumed with the issues and challenges of the severe disabilities conference I attended last week, that didn't mean I wasn't thinking about Tropic Thunder.
I decided Sunday morning that I would compose my post on the subject, but then I found an article in my morning newspaper that spoke to the subject better than I ever could.
John Franklin Stephens, a 26 year old man with Down Syndrome, wrote a piece for the Sunday commentary section of the newspaper. John is a Special Olympics Virginia athlete and a global messenger for the Special Olympics. He is also a young man with a voice that needs to be heard...
The Term "Retard" Is a Big Deal to People Like Me
Although the disability blog world has been full of posts and outrage at the Tropic Thunder movie, I haven't had a chance to express my personal feelings of disgust. However, even though I was consumed with the issues and challenges of the severe disabilities conference I attended last week, that didn't mean I wasn't thinking about Tropic Thunder.
I decided Sunday morning that I would compose my post on the subject, but then I found an article in my morning newspaper that spoke to the subject better than I ever could.
John Franklin Stephens, a 26 year old man with Down Syndrome, wrote a piece for the Sunday commentary section of the newspaper. John is a Special Olympics Virginia athlete and a global messenger for the Special Olympics. He is also a young man with a voice that needs to be heard...
The Term "Retard" Is a Big Deal to People Like Me
Friday, August 15, 2008
TGIF and TG It's Over
I survived - just barely. The conference and family retreat for which I was a planner and and attendee ended Friday at 2pm. The sessions were excellent - the speakers first class - but the hotel facilities were horrible.
Yes, we were right on the beach, but I had no time to enjoy it once the conference started. I had to spend way too much time asking for our childcare rooms to be cleaned, for furniture to be moved, and trying to balance being a parent as well as one of the planners.
Thankfully, Amy was the childcare supervisor and she did an EXCELLENT job of organizing and managing one of the most important aspects of our retreat. The comments from the families were glowing! Our childcare workers, with a couple of exceptions, were outstanding, and the parents all wanted to take the workers home with them!
But, more important that the sessions, the speakers, the planners and the workers were the Dreamcatcher children. Even at my lowest moments, when I was feeling completely overwhelmed with the problems of accessibility at the hotel, all I had to do was visit the childcare rooms for a few moments and my spirit was refreshed. Here is a movie we made of the children and presented at the closing ceremonies of the conference. There were quite a few misty eyes among the 300 attendees...
Yes, we were right on the beach, but I had no time to enjoy it once the conference started. I had to spend way too much time asking for our childcare rooms to be cleaned, for furniture to be moved, and trying to balance being a parent as well as one of the planners.
Thankfully, Amy was the childcare supervisor and she did an EXCELLENT job of organizing and managing one of the most important aspects of our retreat. The comments from the families were glowing! Our childcare workers, with a couple of exceptions, were outstanding, and the parents all wanted to take the workers home with them!
But, more important that the sessions, the speakers, the planners and the workers were the Dreamcatcher children. Even at my lowest moments, when I was feeling completely overwhelmed with the problems of accessibility at the hotel, all I had to do was visit the childcare rooms for a few moments and my spirit was refreshed. Here is a movie we made of the children and presented at the closing ceremonies of the conference. There were quite a few misty eyes among the 300 attendees...
Wednesday, August 13, 2008
Day Three - Virginia Beach Adventure
Adventure just doesn't seem like the right word to describe the day. To me the word adventure brings images of fun times - and fun times were definitely not happening last night and this morning.
The conference that I am attending and that my family support group is playing a small role in, got underway officially this morning. Our family support group, Dreamcatchers, tries to make the experience as positive as possible for our families. Sometimes these retreats and conferences are the closest thing to a vacation our families will get. We provide childcare services for the family while the parents attend the conference sessions. We provide one-to-one support for each child, and always plan fun activities like swimming, field trips, arts and crafts, and pretend play. My staff and I do everything we can to make the families feel welcome and cared for. But doing so this time has been an exhausing challenge. Without going into all the reasons for the challenge, here is a list of some of the problems we have encountered:
- the childcare rooms set aside for us were very small - not at all conducive to children in wheelchairs
- the rooms weren't ready for us last night, or this morning. So parents had to take their children into the keynote address - not a good thing for children with as many sensory issues as ours
- the hotel itself is not very accessible. Children must be wheeled across two busy driveways to make it to the childcare rooms or to the pool
And that is just a very small smattering of the issues. I believe we have some handle now on things and we have started accepting children into childcare, but I am physically and emotionally exhausted. Yet there are two more days left for the conference....
But, the smiles on the children's faces right after lunch made it all worthwhile. Here's hoping those smiles will continue for the next two days...
Monday, August 11, 2008
Day Two - Virginia Beach Adventure
Dolphin and shrimp - yes, it was a good day. Even though the line to our favorite breakfast spot (Pocahontas Pancakes) was too long to wait, we did find another typical beach pancake house and filled up before heading to the dolphin boat tour.
As I anticipated, Ashley was VERY anxious about actually boarding the boat. I had hoped the boarding would go a little more smoothly than last year's trip because I had called ahead and asked if the boat trip was accessible. I was told that it was, but what that meant was that two strong men would lift Ashley in her wheelchair onto the boat. If you are familiar with people in wheelchairs and understand how they feel when someone puts their hands on the chair, you know that more often than not, it is not well received. And believe me, it was not well received by Ashley either.
Once Ash had settled down from the men-handling, she did seem to really enjoy the trip. While she is unable to see the dolphin, she loves to feel the wind on her face, smell the salty sea air, and feel the rhythm of the rocking boat. She even seemed to enjoy licking the saltiness off her lips.
After a short nap back at the hotel, Ashley and I went for a walk by the beach, and that was followed by dinner with my brother and niece. While Miss Amy took Ashley back to prepare for bed, Chip and I headed to the beach with my brother - the photographer - so Chip could have his senior year pictures made. I think we will have so many good ones to choose from that I will have an extremely hard time choosing!
Tuesday begins the preparation for the conference and family retreat. The hotel facilities are in no way what we need for a successful family retreat, but that is a subject I will address in my next post. Suffice it to say that if you are planning a conference on the subject of severe disabilities, AND you know you will have attendees and family members with severe disabilities, perhaps checking out the facilities before the actual start of the conference would be a good idea.
Day One - Virginia Beach Adventure
Traveling with children is difficult at best. Traveling with children with significant special needs is a Herculean task. I feel like I was instructed to pack up one third of my house, fit it all into the family MINIvan, and arrive at our destination with happy, smiling faces. Oh, and in the process – don’t forget anything important. Well we didn’t and we did – we didn’t arrive with happy, smiling faces and we did forget some important things.
Then throw into that stressful situation a deafblind child who understandably gets a little anxious in strange places, and you can count of the first day of any such trip to be more than just a little stressful.
We left home yesterday morning for our trip to Virginia Beach. I am part of a conference planning committee which is hosting a conference called Pathways to Possibilities. The conference is targeting professionals a family members who support children with significant disabilities, and in particular, deafblindness. The conference doesn’t officially start until Tuesday evening, but we came to the beach a couple of days early for a vacation, the only vacation we will get this year.
So assuming I can find Internet access somewhere (and my hotel room is unfortunately not one of those places), I will still try to post every day this week. In the meantime, we are going to try a dolphin watching trip today if we can get Ashley onto the boat. Last year, she loved just such a trip once we got her on the boat – and that required the strong arms of the boat captain hoisting her aboard while she screamed like a wounded coyote.
My only other mission today is to find shrimp – lots and lots of steamed, spiced shrimp!
Friday, August 8, 2008
Hard to Watch - Hard to Understand
If you have a child who engages in self-injurious behavior, you know how terribly upsetting it can be. Watching a child slam their fist into their head, pick at their gums or fingers until they bleed, or even bite themselves and break the skin is something no one should have to endure. But many of you know that this is common behavior for a child with significant disabilities.
My experience with the school system and with many medical professionals is that they would rather try to control the self-injury with medication - and sometimes that is really strong medication with significant side effects. For years I have fought my school system to assist me in finding the reasons for Ashley's self-injurious behavior, and even though they agree to do their version of a functional behavior assessment, the result has usually been restraint. And that restraint does nothing but increase Ashley's frustration which causes the self-injurious behaviors to increase.
For years, I have insisted that the behaviors were a direct result of lack of communication. The school system and many of the doctors scoffed at that idea. Yet, when Ashley did finally get a teacher who believed in her, and a school setting that was appropriate, the behaviors all but stopped.
With each new school year, with each new school placement, with each new teacher - I wonder if the behaviors will resurface. If they do, my campaign to educate the educators will again kick into high gear. And last night, I found one of the best articles on self-injurious behaviors I have ever read.
Written by a gentleman who is autistic, the article on stopping self-injurious behavior is excellent. I urge all parents and educators to take just a few moments to read the article I have linked to below. I promise you will come away with a much better understanding and approach.
Stopping Self-Injurious Behavior
Thursday, August 7, 2008
Thankful Thursday
Today I am thankful...
- for the little food cart on the corner near my office. I love their sesame pasta!
- that I have just one more day to work before leaving for the Pathways to Possibilities conference in Virginia Beach. That will be work also, but work I love.
- that I now have a bathtub, a ceiling and walls in my being-remodeled bathroom.
- for machines that laminate. I don't know, there's just something so slick about it for an anal retentive person like me.
- for manila file folders - back to that anal retentive stuff again
- that next week I will get to see Lynnette and the beautiful Brooke. I have really missed you guys.
- for times when I get to just sit and watch the birds play in my birdbath. My two cats are usually sitting next to me, but I can almost guarantee we are not thinking the same thoughts.
- for root beer floats.
- for neighbors who check on each other.
- for friends who surprise you with a text message when you least expect it.
Wednesday, August 6, 2008
Another Crash Test Dummy Family
When I read Melody's post at 5 Minutes For Special Needs yesterday morning, I felt as if she had been reading my mind. In her post, The Crash Test Dummy Family, Melody shared her pain at being verbally and physically attacked by her 13 year old son who is diagnosed with FAS (fetal alcohol syndrome). Although my 17 year old daughter, Jessica, is not diagnosed with FAS but rather RAD (reactive attachment disorder), the scene Melody described is all too familiar to me. And I had spent my night and morning worrying about Jessica.
Jessica still has frequent outbursts of rage and aggression. She still hurts people. Even after 8 years of a stable home, a loving family, and many many hours of therapy, Jessica still is scarred by her early life in foster care. While school systems and after school care facilities must learn to help her and find ways to help others in Jessica's world of aggression, I worry what will happen when Jessica enters the job market.
Employers will have no obligation to help Jessica control her aggressive tendencies. They will not have to offer therapy or train other co-workers on how to get out of her way should she begin to rage. They will simply refuse to let her work. So in my worries, I was seeing Jessica move from job to job, always being asked to leave when the aggression surfaced, and her depression growing deeper with each rejection.
Melody's words which really hit home for me were "You spend the life of your child trying to encourage his brain to re-wire itself to function with a smidgen of impulse control. Nothing changes. It only escalates. You keep praying. You keep loving him."
I felt Melody's despair yesterday because it is my despair. And like Melody, I will love and support Jessica no matter what. But the thought of what most likely will come in her future, does indeed deepen my despair.
Tuesday, August 5, 2008
Growing Dreams
Ashley loves plants and flowers. From the first days she was able to wobble across our yard, she has headed straight for bushes and flowers. She seems to have an innate ability to know which plants are edible and which are not. So, just in case you were wondering – pansies are fine to eat, azaleas taste bitter, and honeysuckle is the best!
Because of Ashley’s enduring interest in plants and flowers, her school team and I have discussed the possibility of Ashley working in a greenhouse. So imagine my delight in finding the following website:
One of my favorite things about the website – the statement in the upper left corner – “We honor the concepts of humanity, dignity, respect, hard work, fellowship and friendship.”
I guess I am either going to have to move my family to Chicago or try to start a similar enterprise here!
Monday, August 4, 2008
They Asked - I Answered
A company called Pinhole Glasses Direct contacted me and asked if I would do a review of their product. Pinhole glasses, they claim (incorrect spelling and grammar is directly from their website):
Are effective and helpful in restoring vision for a number of eye disorders like myopia, hyperopia, cataract and astigmatism.
It is also useful over all distances. Whether it is for reading, for watching TV, or for working on the computer, one pair suits all purposes.
Allows only direct and coherent light rays to pass through. It does not allow indirect rays from distorting the true images formed by the direct rays entering in your eyes. Find out more about how pinholes work and the science behind its working here...
Do not employ concave lenses in correcting your vision. This prevents your eyesight from weakening due to wearing lenses, a common opthalmologic phenomenon called Acquired Myopia.
Increase brightness of image of objects. This allows you to see better in norma circumstances.
Are made with laser technology. They are highly effective, quality tools.
Are sturdy and long lasting. You need not worry as its performance does not get affected by scratches and marks on the lenses.
Unlike prescription eyeglasses, are a one-time investment. It saves you trouble and the money you would otherwise spend on changing your eyeglasses every now and then.
At $14.99 a pair, they are highly affordable. They are much cheaper than your prescription eyeglasses.
Although their claims reminded me of snake oil salesmen from the past, I decided to consent to the review, and so they sent me a pair of their glasses. And, while waiting for the glasses to arrive, I did a little research.
According to the website of one of their competitors (I assumed), was this explanation of how pinhole glasses work:
Pinhole glasses (also known as stenopeic glasses from the Greek words for "little opening") are not made of glass at all but of an opaque substance such as metal or plastic. The user looks through any of the many small holes in the material. These holes have the effect of reducing the width of the bundle of diverging rays (called a "pencil of light") coming from each point on the viewed object. Normally, the full opening of the pupil admits light. It is the improper bending of the outermost rays in that pencil of light which causes refractive errors such as myopia, hyperopia (farsightedness), presbyopia (diminished focusing range with age) and astigmatism to be noticeable. Pinholes can bring about clearer vision in all these conditions. By blocking these peripheral rays, and only letting into the eye those rays which pass through the central portion of the pupil, any refractive error in the lens or cornea is not noticed as much. The pupil may be wide open, but only the central portion is receiving light. The improvement in visual acuity can be striking.
Okay, still sounding a little snake-oilish to me, I checked Wikipedia. Here is what I found:
Pinhole glasses, also known as stenopeic glasses, are eyeglasses with a series of pinhole-sized perforations filling an opaque sheet of plastic in place of each lens. Similar to the workings of a pinhole camera, each perforation allows only a very narrow beam of light to enter the eye which reduces the size of the circle of confusion on the retina and increases depth of field. In eyes with refractive error, the result is often a clearer image. Unlike conventional prescription glasses, pinhole glasses produce a clear image without the pincushion effect around the edges (which makes straight lines appear curved). While pinhole glasses are useful for people who are both near- and far-sighted, they are not recommended for people with over 6 diopters of myopia. It should also be noted that pinhole glasses reduce brightness and peripheral vision, and thus should not be used for driving or when operating machinery.
Pinhole glasses have been marketed by various companies on the claim that - combined with certain eye exercises - they could permanently improve eyesight. These claims have been analyzed, but no scientific evidence has been found to support them, and they are no longer allowed to be made in the United States under the terms of a legal settlement with the Federal Trade Commission.
Well, that would explain why the glasses were mailed to me from Europe.
The glasses finally arrived, and they were very much like the company’s website described. They are made out of plastic with plastic inserts where the lenses usually are, and there are lots of little pinholes on those inserts.
I tried them with several activities – eating dinner, watching TV, using the computer. My family members, all of whom have a vision impairment, also tried them. I brought them to my office and several of my co-workers tried them.
And I’m sorry to say that the unanimous decision was ‘snake oil’.
I’ve provided some links for the company’s website below. Personally though, I wouldn’t waste my time.
This may be the last time I am asked to do a product review, eh? Unless…the company really wants an honest review…
Company Main Page
Ordering page
Frequently Asked Questions
And Alternative to Prescription Eyeglasses
Friday, August 1, 2008
Body Art
If your child has ever received occupational or physical therapy services, especially for a sensory processing disorder, you’ve probably heard of and seen Body Sox. They are like a very large pillowcase, and usually are made of a stretchy lycra-like fabric. Your child climbs into the Sox, and can then stretch all around. The stretching against the fabric provides sensory feedback, and can help some children get a better awareness of their body is space.
Ashley used one in therapy for a while, and she really enjoyed it. It was almost as if she was making an art piece while wearing it. She would pose herself in lots of different positions, hold the pose and look to her therapist for applause. I always thought I would like to have one at home, but when I found out how much they cost, I couldn’t afford it. But that little fact didn’t slow Ashley down.
While she was in her bedroom getting ready for bed one night last week, she decided to create her own Body Sox using her nightgown. When I returned to her room with her nighttime meds, there she was – posing once again. So, here she is in her own Sox creation, and quite pleased with herself as you can see.