"One can never consent to creep when one feels an impulse to soar." - Helen Keller
Thursday, September 30, 2010
The Next Phase
The struggles to ensure a future for our children with disabilities never ends, does it? First we have the school battles, fighting for the things we know our children will need to succeed in the future. Be it a special reading program, instruction in how to travel with a cane, or extra school time – it often seems that we have to fight for everything.
Then there are the medical issues we face. The search for a diagnosis and proper treatment. Sometime we get lucky and find doctors who share our commitment to children with disabilities, but more often than not, we endure long waits, doctors who don’t ‘get it’, and other medical staff who act like we and our children are a nuisance.
And I would be remiss if I left out the struggles for community acceptance, finding a church home, and all things surrounding physical accessibility.
I am now, however, moving into a new realm of struggles – the fight to ensure my Jessica can find a job that she likes and which she feels is something she wants to do with her life.
I had sincerely hoped that the school system would do an adequate job of preparing Jessica for employment. IDEIA says they have to. Well, I don’t know about you, but that hasn’t happened yet. The school has worked on things like cooking, doing laundry, and hanging up clothing. But what about filling out a job application, showing up for work on time, getting along with co-workers, and specific skills that Jessica would need to find a job?
I knew I couldn’t count on the school system to completely prepare Jessica, but I had an ace in my pocket, or so I thought. Our state has an agency called the Department for Rehabilitative Services. Their published mission is to help people with disabilities find employment.
Since our last two meetings with that agency involved me taking an attorney with us to the meeting, you can imagine how well that is going.
I won’t go into too many details yet, but this agency that is supposed to help Jessica seems to grossly underestimate her abilities, and in fact, will only speak to me when Jess is in the room.
I’m going to keep trying. I’m calling for an IEP meeting and inviting the DRS staff. My hope is that the two organizations will work together for the common goal of preparing Jessica for employment.
Shall we start taking bets now on how well that will go?
Wednesday, September 29, 2010
Special Exposure Wednesday
When Ronnie's wish to meet a Washington National's baseball player couldn't be scheduled, he had to come up with a second wish. And he did! He decided he wanted an IPhone so he could text all his friends, both Deaf and hearing.
Yesterday Make A Wish made his dreams come true!
Here is Ronnie opening his presents, including an IPhone 4!!
Make sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Yesterday Make A Wish made his dreams come true!
Here is Ronnie opening his presents, including an IPhone 4!!
Make sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Tuesday, September 28, 2010
Basketball Star!
Ronnie really has recovered fully from his surgery! How do I know this? Because last Thursday night he started playing on a wheelchair basketball team!
An organization in our town called Sportable has lots and lots of different sports activities and teams for people with physical disabilities. These aren't wimpy, made-up activities just to make someone feel like they are making a difference. These are wheelchair ramming, spectator screaming, sweat inducing sports activities!
There are special chairs and soon there will be uniforms. And the star of the team - why, Ronnie of course!! Here's the proof:
An organization in our town called Sportable has lots and lots of different sports activities and teams for people with physical disabilities. These aren't wimpy, made-up activities just to make someone feel like they are making a difference. These are wheelchair ramming, spectator screaming, sweat inducing sports activities!
There are special chairs and soon there will be uniforms. And the star of the team - why, Ronnie of course!! Here's the proof:
Monday, September 27, 2010
Sleeping Beauty
Ashley had yet another MRI under anesthesia last Friday. She was already having them twice a year to check the status of the three brain tumors she has, but this time, her neurosurgeon ordered an MRI of her spine to make sure no tumors were present on the brain stem or the cervical spine. Ashley has been experiencing some slight right-side weakness, and the neurosurgeon said he would rather be proactive about checking.
I agree with that approach, but still don't like it. The MRIs under anesthesia are incredibly difficult for her.
She knows what is going to happen as soon as we pull into the hospital parking lot. She tries really hard to be brave, but her anxiety kicks in after just a few minutes. It doesn't help that the MRI staff seem to move in super slow motion. The longer she sits, the worse the anxiety gets. But the time the staff is ready for her to get on the stretcher, she is in all out refusal mode.
We've tried a couple of things to try to make the process easier. One thing we have tried is giving her Versed via her G-tube. According to the manufacturer, "Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep."
Sounds good, doesn't it? Well, it doesn't work all that well for Ashley. If it reduces her anxiety, I'm not seeing it. She still fights for all she is worth when it's time to move to the stretcher. Friday, it took two strong men and a nurse to get her in what appears to be a great wrestling hold, and then move her to the stretcher. Another nurse had the mask for anethesia on the ready, but Ashley still ripped it off her face and broke it. In addition, whenever we use the Versed, she is slow - really, really slow - to wake up after the procedure. And that scares me beyond words.
The other thing we have tried is Ketamine. According to Wikipedia, "Ketamine has a wide range of effects in humans, including analgesia, anesthesia, hallucinations, elevated blood pressure, and bronchodilation. Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with some sedative drug. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to other anti-depressants."
Ketamine knocks Ashley out in less than 30 seconds, but the side effects frighten me.
I want there to be another solution...
Here are some photos from Friday (sorry for the poor quality. I was using my cell phone):
Ashley is waiting in a small room adjacent to the MRI room and watching TV while we wait...and wait...and wait. This is early on so she is not too upset yet.
Ashley is in the recovery room. This is exactly how she looked for 4 straight hours. See why I am so scared?
Even on the trip home, she is still half asleep. And, she stayed 'out of it' for the rest of the day and night.
Now we have to wait until Tuesday to see if the MRI revealed anything :(
I agree with that approach, but still don't like it. The MRIs under anesthesia are incredibly difficult for her.
She knows what is going to happen as soon as we pull into the hospital parking lot. She tries really hard to be brave, but her anxiety kicks in after just a few minutes. It doesn't help that the MRI staff seem to move in super slow motion. The longer she sits, the worse the anxiety gets. But the time the staff is ready for her to get on the stretcher, she is in all out refusal mode.
We've tried a couple of things to try to make the process easier. One thing we have tried is giving her Versed via her G-tube. According to the manufacturer, "Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep."
Sounds good, doesn't it? Well, it doesn't work all that well for Ashley. If it reduces her anxiety, I'm not seeing it. She still fights for all she is worth when it's time to move to the stretcher. Friday, it took two strong men and a nurse to get her in what appears to be a great wrestling hold, and then move her to the stretcher. Another nurse had the mask for anethesia on the ready, but Ashley still ripped it off her face and broke it. In addition, whenever we use the Versed, she is slow - really, really slow - to wake up after the procedure. And that scares me beyond words.
The other thing we have tried is Ketamine. According to Wikipedia, "Ketamine has a wide range of effects in humans, including analgesia, anesthesia, hallucinations, elevated blood pressure, and bronchodilation. Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with some sedative drug. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to other anti-depressants."
Ketamine knocks Ashley out in less than 30 seconds, but the side effects frighten me.
I want there to be another solution...
Here are some photos from Friday (sorry for the poor quality. I was using my cell phone):
Ashley is waiting in a small room adjacent to the MRI room and watching TV while we wait...and wait...and wait. This is early on so she is not too upset yet.
Ashley is in the recovery room. This is exactly how she looked for 4 straight hours. See why I am so scared?
Even on the trip home, she is still half asleep. And, she stayed 'out of it' for the rest of the day and night.
Now we have to wait until Tuesday to see if the MRI revealed anything :(
Thursday, September 23, 2010
Wish #1 - Fail, Wish #2 - We'll see
I told you last May that Ronnie had been approved for a wish from the Make A Wish Foundation. It took a while to get him to understand that this was all for him – something special. And, he finally settled on a wish – to meet Adam Dunn, the first baseman for the Washington Nationals baseball team.
The Make A Wish folks got working on that but their efforts were stalled because of Ronnie’s surgery and subsequent recuperation. And, baseball season is drawing to a close, and Mr. Dunn may or may not stay with the Nationals.
Since this coming Monday is the last game for the Nationals, and we hadn’t heard from Make A Wish, we assumed they were not able to work things out. But then the call came – last night about 5pm while I was standing in the checkout line at Kroger. The arrangements were made and we would be traveling this weekend for a meet and greet on Monday or Tuesday.
Sounds great, eh? Well, except for one big thing, it did sound perfect.
The call came at 5pm on Wednesday, and Make a Wish wanted us to travel in two days for a stay through the first of next week. I’m an extremely organized person but even with that there is just no way I can make arrangements for the rest of family in two days.
Ronnie has a small medical procedure scheduled for Monday. Ashley has an appointment with her neurosurgeon on Tuesday. Ronnie is supposed to attend his girlfriend’s birthday party on Saturday. I have no arrangements for someone to stay with Ashley while the boys and I travel. Chip can’t miss his college classes, and I’m not wild about taking Ronnie and Corey out of school so soon after the start of the semester.
This wish is not going to work.
The Make A Wish folks seemed a little miffed with me. I told them that if they could have just told me 2-3 days earlier that it was a possibility, I might have been able to pull things together. But 48 hours – I just couldn’t do it.
So, I talked to Ronnie, and he has adjusted his wish. Now we’ll wait and see if the Make A Wish folks aren’t so annoyed that they give up on us.
Exciting Times
It seems to me that technology to assist people with disabilities has really taken a huge step forward recently. Almost every day, I read a new article or blog post about a technological advance that is improving the lives of people with disabilities.
Since I have both a Deaf child and a Deafblind child, I am always interested in things that can help them. I've been keeping a list of articles when I find them, and today have decided to share them. It really is an exciting time! Although we have a long, long way to go, I truly believe my childrens' lives will be greatly enriched by the application of technology.
Read how Austin Seraphin believed his life changed the day he bought his new IPhone.
Visit the Alabama School for the Deaf, and it's impossible to miss the signs of a revolution that many hearing people simply never noticed.
Can the Deaf enjoy music? Indeed they can!
Do you think a Braille GPS device would help a Blind person as they travel through city sidewalks? The jury is still out on this one, but hopefully it is just the starting point for futher product development.
I do most of my shopping online these days, especially during busy holiday times. Will my Blind daughter ever be able to do the same thing? Just maybe...
And finally, some Korean designers have crafted a Braille Stapler that they claim will revolutionize the way a Deafblind person communicates with the world. Ashley is Deafblind, so this piqued my interest. But, sorry Korean designers, I'm just not seeing it yet...
Wednesday, September 22, 2010
Special Exposure Wednesday
When your daughter starts looking like Justin Bieber, it's time for a haircut!
Justin
Ashley
Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Justin
Ashley
Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Tuesday, September 21, 2010
We Proclaim...
Please take a moment to read the piece below, and then visit the ADAPT blog, Defending Our Freedom. Also, at the end of this piece is a short video about ADAPT.
A DISABLED MANIFESTO
By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc
We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.
We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.
We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.
We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.
We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.
We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.
We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.
Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.
All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.
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Who is ADAPT?
A DISABLED MANIFESTO
By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc
We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.
We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.
We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.
We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.
We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.
We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.
We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.
Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.
All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.
-------------------------
Who is ADAPT?
Monday, September 20, 2010
Starting Early
The kids and I decided to visit the Williamsburg outlet stores this weekend and do some Christmas shopping. With the economy, more specifically my economy, being in the shape that it is, Christmas purchases must be spread out over several months. Of course, the primary reason Ashley wanted to go was to visit the Converse Shoe Outlet!
Chip had decided that he would get Ashley a new pair of Converse sneakers (pair number 14!) for Christmas, and he wanted her to pick out the color she wanted.
Of course, she wanted them all!!
But she finally settled on orange, and they are now safely tucked away in the Christmas present hiding place!
If only everyone was so easily pleased...
Chip had decided that he would get Ashley a new pair of Converse sneakers (pair number 14!) for Christmas, and he wanted her to pick out the color she wanted.
Of course, she wanted them all!!
But she finally settled on orange, and they are now safely tucked away in the Christmas present hiding place!
If only everyone was so easily pleased...
Friday, September 17, 2010
John and Michael
So many times I have seen and heard people with disabilities being discouraged from having loving and intimate relationships. Sometimes that discouragement has sounded suspiciously like forbidding.
Never have I understood the reasons why.
I stumbled across this video clip from the National Film Board of Canada. This animated short pays tribute to two men with Down's syndrome who shared an intimate and profoundly loving relationship that deeply affected the filmmaker, Shira Avni. Narrator Brian Davis, also intellectually challenged, brings the men alive with great sensitivity, and I absolutely love his laugh.
I understand that the subjects in this video and their relationship may make some of you uncomfortable. Not only because they are disabled, but also because they are of the same sex. I just ask that you set those uncomfortable feelings aside for a moment so you can drink in how very special a relationship these two people found in each other. I wish everyone could be as blessed and as happy.
Never have I understood the reasons why.
I stumbled across this video clip from the National Film Board of Canada. This animated short pays tribute to two men with Down's syndrome who shared an intimate and profoundly loving relationship that deeply affected the filmmaker, Shira Avni. Narrator Brian Davis, also intellectually challenged, brings the men alive with great sensitivity, and I absolutely love his laugh.
I understand that the subjects in this video and their relationship may make some of you uncomfortable. Not only because they are disabled, but also because they are of the same sex. I just ask that you set those uncomfortable feelings aside for a moment so you can drink in how very special a relationship these two people found in each other. I wish everyone could be as blessed and as happy.
Thursday, September 16, 2010
The Wrongest of the Wrong
I have crossed paths with way too many people who form an opinion about a person with severe disabilities based on what they see when looking at the person. The opinions usually center around pity and even more abhorrent, the belief that the person with the severe disability is incapable of learning, communicating, and loving, to name just a few things.
What is particular distressing is when that person forming the opinion is in a position of responsibility in a school system.
I’ve written many, many times in the past about not understanding how educators start their careers with the belief that all children can learn and are capable but after a few years, begin to ‘turn off’ those beliefs when it comes to students with severe disabilities. It seems to me (and this is based on my personal experiences and the personal experiences of other parents with whom I have spoken) that this switch to feeling differently about students with severe disabilities comes when the teachers move into administrator roles.
The administrator’s justification, again in my experience, is that the severely disabled student costs a whole lot to educate with very little return on the investment. When that attitude comes down from the administrator to the classroom, the results, as you may imagine are disastrous for our children with significant disabilities.
Let’s look at one example that happened just this week.
Brooke started middle school this year. Everyone in her school environment is new to her and she is new to them. Brooke’s mom did an excellent job of introducing her daughter to the new staff. She emphasized Brooke’s special skills and shared an immense amount of information about the progress Brooke has made in the past and is anticipated to make in the future. But Brooke does have severe disabilities.
Brooke uses a communication device – a very expensive communication device that her mother did not ask the school to provide. Brooke’s mother provided it herself and makes sure Brooke has it every day when heading off to school. This particular device has been a real boon to Brooke’s communication, and Brooke loves using it.
The assistive technology guru for Brooke’s school visited Brooke’s classroom this week and observed Brooke using her communication device. His comment? The device was way too complicated for Brooke and a waste of taxpayer money. (The device was provided by Medicaid after a long and difficult fight to justify it as the correct device for Brooke).
Mr. assistive technology guru made this comment in front of other school staff, the same school staff that Brooke’s mom had worked so hard to convince that Brooke was indeed capable. The pressure and opinions from above are again making their way into the classroom. Opinions and beliefs will be altered and Brooke will be the loser in this game of one-upsmanship.
This, in my opinion, is just one of the things that is so very wrong with our public school systems. However this one affects the most vulnerable of students – students who have to work incredibly hard every minute of every day just to prove their worth to people like Mr. assistive technology guru.
To say this is wrong is one of the biggest understatements I have ever made.
Wednesday, September 15, 2010
Special Exposure Wednesday
These little critters are devouring the parsley in my herb garden. If they weren't so interesting looking, I might not be too pleased. They didn't mind having their pictures taken a bit!
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs.
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs.
Tuesday, September 14, 2010
In On The Secret
I stumbled upon a story the other day which is written by the mother of a child with very significant disabilities. Her story put to paper the thoughts that have been tumbling around in my head ever since adopting my daughter, Ashley, over 13 years ago.
Here’s a short excerpt:
Not everyone is so nervous around disability, of course. On that same walk with Clemmie one woman asked what condition my daughter had, stroked her hair and told her she was gorgeous. The woman told me she used to work with disabled children. Ahh, now it's clear – she knows what the others don't; she's in on the secret. She knows that the profoundly disabled can change your life and whole world view not through achievement, not by doing, but just by being.
If you want to brighten your day, take a few moments and read the entire article.
Monday, September 13, 2010
Holistically Speaking
This weekend my family and I attended the kickoff picnic for another year of Va LEND mentorship. Va LEND is a program of study at our local university in which professionals team with families that have children with special needs. It is a year long program that affords the trainees the opportunity to see really in-depth what life is like on a daily basis when one is raising a child with special needs.
We’ve been participating as a mentor family for 10 years, and have had a pediatrician, an occupational therapist, several teachers, and a physical therapist, just to name a few, as our trainees. I think it is really a wonderful opportunity for the trainees to see the bigger picture and for the families to understand the stresses and viewpoints of the professionals. But all this got me to thinking….
When Ronnie recently went through his bladder surgery, the doctors told me a lot about the surgery itself, but they didn’t tell me what life was going to be like for the six weeks following surgery when Ronnie was recuperating at home. The doctors didn’t intentionally leave out that information – they just didn’t know it. Their perspective is clinical. My perspective included sleeping, eating, bathing, bandaging, going to appointments, and dealing with catheters that failed hourly.
I believe that if I had a glimpse into what life was going to be like post-surgery, my stress level and Ronnie’s would have been lower. I could have made arrangements for the things I would need before the surgery, not after. I could have worked out a nursing schedule that made everyone more comfortable. I could have stocked up on easy-to-prepare meals, and done as many errands as possible.
Even while Ronnie was in the hospital, I wished someone had told me what to expect – not the surgery details – the doctors did a great job of that. But things like packing pajamas for Ronnie was a waste of time because he wouldn’t be able to put them on due to all the catheters. Or, preparing myself and Ronnie for the fact that he wouldn’t be able to eat for a long while after the surgery. Or, making sure I had an easy way to get him home when he was discharged. Even knowing that I could get a week long parking pass from the hospital at a reduced rate.
So, I think the doctors need a mentor family for their patients that will be going through similar surgery.
If another family was facing bladder augmentation surgery, the doctor could refer that family to me. I could help them understand the daily challenges, the emotional toll, and the needs to expect once they returned home. I could even be at the hospital holding their hand if they liked.
Doctors are often not as warm, not as comforting as another parent can be. The doctors do their jobs very well, but don’t have the time or perspective to go that next step of providing the day-to-day support a family needs.
It’s time, in my opinion, to treat the family, not just the patient. What do you think?
Friday, September 10, 2010
How To Move Past Hypocrisy
When my family goes anywhere, we usually don’t go quietly or unnoticed. We’re not Kate Plus Eight, but everyone’s attention is usually diverted, at least for a short period, to my family. And, being someone who is more comfortable not being noticed, this situation has been quite an adjustment for me.
For the most part, I’ve moved past caring too much about the stares of strangers when we shop, go to the park, go to the movies, or other community activities. But there is something that still troubles me, and I don’t know what to do about it.
Because I am a single parent, where I go, so go my children. Tonight, a memorial service is being held for the recently deceased mother of one of my co-workers. My co-worker and I have been with the same employer for over 25 years now. I am expected to be present at the service and I want to be present. What I don’t want is for my family procession to take anything away from the decorum of the ceremony. And that’s just one example.
About every two months, all my co-workers get together at a local restaurant for dinner. Families are included, and very often attend. But my family is a little different than most – okay, a lot different. My co-workers don’t understand my children and don’t know how to interact with them. In fact, some are probably uncomfortable around my children.
My children and I should not have to spend our lives only moving in social circles of families like our own. While I love every moment I spend with my friends that have children with disabilities, and I am so grateful for their support, I really don't want to impose limits on my children.
I espouse inclusion to anyone who will listen. But here are situations where I could choose inclusion for my children, and I don’t. I guess that makes me a hypocrite. But how do I move past the uncomfortable feelings for others as well as for my family to get to that state of inclusion?
Thursday, September 9, 2010
Students Who Cared Enough to Take Action
"I would do anything for them. And you have to look at a child for just who they are, and not just for their disability.”
That statement was made by a high school student - a high school student who fought to have students with severe disabilities included in the school's homecoming court.
If you need something to lift your spirits - if you need to believe in hope for the future - if you need to be reminded that there are some really special teenagers in this world - read this story. I promise you will not be disappointed.
That statement was made by a high school student - a high school student who fought to have students with severe disabilities included in the school's homecoming court.
If you need something to lift your spirits - if you need to believe in hope for the future - if you need to be reminded that there are some really special teenagers in this world - read this story. I promise you will not be disappointed.
Wednesday, September 8, 2010
Special Exposure Wednesday
I probably should have done a better job of hiding the catnip!
Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Tuesday, September 7, 2010
Your Experience?
Do you or your children take the medicine Risperidone? It's sometimes called Risperdal. Ashley has been taking it for many, many years, and I believe it was first prescribed to help with what we viewed at the time as aggressive behaviors.
Risperidone is often prescribed to children diagnosed with Autism. Ashley is not diagnosed with Autism but many of the behaviors related to Deafblindness are very similar. Here is a better description from the National Institute of Health:
Risperidone is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions) in adults and teenagers 13 years of age and older. It is also used to treat episodes of mania (frenzied, abnormally excited, or irritated mood) or mixed episodes (symptoms of mania and depression that happen together) in adults and in teenagers and children 10 years of age and older with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Risperidone is also used to treat behavior problems such as aggression, self-injury, and sudden mood changes in teenagers and children 5-16 years of age who have autism (a condition that causes repetitive behavior, difficulty interacting with others, and problems with communication). Risperidone is in a class of medications called atypical antipsychotics. It works by changing the activity of certain natural substances in the brain.
And here is a list of some of the negative effects of Risperidone:
The most common adverse reactions observed in all clinical trials with RISPERDAL® occurring at a rate of at least 10% were somnolence, increased appetite, fatigue, rhinitis, upper respiratory tract infection, vomiting, coughing, urinary incontinence, increased saliva, constipation, fever, tremors, muscle stiffness, abdominal pain, anxiety, nausea, dizziness, dry mouth, rash, restlessness, and indigestion. Tardive Dyskinesia (TD) is a serious, sometimes permanent side effect reported with RISPERDAL and similar medications. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk of developing TD and the chance that it will become permanent is thought to increase with the length of therapy and the overall dose taken by the patient. This condition can develop after a brief period of therapy at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if therapy is stopped.
Obviously this is a pretty powerful medication. What worries me is not the weight gain that Ashley experienced from taking Risperdal, or to some degree some of the other side effects such as urinary incontinence, and a general appearance of being 'foggy' most of the time. My biggest concern is the chance of Tardive Dyskinesia.
With ever increasing frequency this summer, I have noticed facial grimacing and other uncontrolled movements. Although Ashley is on a very low dose (.5 mg), she has been taking Risperdal for many years, and often the TD will appear after several years.
We don't see Ashley's neurologist again until early October, but I have made the decision to reduce her dose slowly. I'm just curious what other's experience with this drug might be.
Monday, September 6, 2010
Take Your Pity and Stuff It
"Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"
--Jerry Lewis, CBS Sunday Morning, May 20, 2001
It’s that time of year again when Jerry Lewis goes on television to make money for all the poor disabled children with muscular dystrophy. As Mr. Lewis and his promoters learned a long time ago, pity makes money.
As writer Anne Finger wrote in her memoir “Elegy for a Disease”:
"Jerry Lewis’s MDA Telethon, rather than working for equality and social inclusion of disabled people, portrays us as hopeless, pathetic, eternal children. Lewis has said, “My kids cannot go into the workplace. There’s nothing they can do.” He has said that a disabled individual is “half a person,” and [If] you don’t want to be pitied because you’re a cripple in a wheelchair, stay in your house!” His telethon reinforces the notion that cure and prevention are what disabled people need, not social change."
Needless to say, I will not be watching the telethon, and I urge you to also boycott it. My children do not want pity, and they do not need Jerry Lewis, the supreme panderer of pity.
Oh and Mr. Lewis, my children will NOT stay in their house. They will, along with me, be out in the world fighting people like you.
Friday, September 3, 2010
A Good Day
Today was a good day...
Ronnie had his weekly post-surgery follow-up appointment with the urologist. He is doing really well, and we won't have another appointment for six whole weeks!
I finally received the correct feeding bags from my new medical supply company.
Ashley and I took a short nap this afternoon.
The high school bus driver for the upcoming school year called, and he will pick Ashley and Ronnie up at 7:52 am - which will work out perfectly for me to get to work on time.
I had a wonderful Cobb salad for dinner.
I booked the vacation home on the Outer Banks of North Carolina that we will travel to over Winter Break from school.
I don't have to iron clothes because I don't have to go into the office tomorrow.
Big Brother is on TV tonight and then I will be able to read for about an hour before calling it a night.
Nothing really eventful - but a good day, nonetheless.
Happy Friday, everyone!!
Thursday, September 2, 2010
I Don't
- need new windows. If you know anything about new windows, you should have been able to tell I just had mine replaced not long ago.
- want to buy any magazines from a teenager who claims to be disadvantaged and was dropped off with 12 other teenagers
- wish to have my driveway repaved
- want to have my trees trimmed even if they are, as you say, a major hazard during a storm
- want to change the company that monitors my home alarm. I know you say your service is better, but so did the three people who came before you.
- don't need to be picked up and taken to the Baptist church on Sunday. I have nothing against your religious beliefs but I am a member of the Catholic church.
- am not interested in the ministerings of the Mormon church. Nor do my Deaf children need to 'borrow' any of your movies on DVD. Again, I have nothing against your beliefs, but I really like nuns.
- am not in need of your lawn service. I have teenage sons who take care of that for me, thank you very much.
- don't care to see your meat or Avon or tupperware or jewelry catalog
- like, really don't like, you coming to my door uninvited. That's what the 'No Soliciting' sign is for.
Just call me the grumpy lady of the neighborhood, or better yet, don't call me - I'll call you if I have a need for your services.
Wednesday, September 1, 2010
Special Exposure Wednesday
Yep, it's time for school to start....
Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs.
Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs.