Dear Senator and Mrs. Obama,
How can it be? That words - so powerful, can also be so abusive and born out of such intense ignorance, that they threatened to send the disability rights movement back in time, and to a place so chilling, I shudder to think of it? The image of Laconia State School New Hampshire, in the 1960’s comes to mind. I am naive if I think this image is the past. Sadly, in many States in the US and across the globe abuse of the rights of individuals with disabilities is the present and their horrific future.
The words I am referring to, are that of the radio talk show host Michael "Weiner" Savage who made extremely offensive and denigrating remarks concerning children with autism, labeling them as "brats," "idiots" and "morons." In addition, he places the blame on poor parenting and lack of paternal interaction in families to correct what he perceives as misbehavior.
As a parent of a child with Autism, of course I was outraged by Savages words and shocked at his level of ignorance, and arrogance. Is this really how people (8 mil listeners) think? I shuddered once more.
I write to encourage you act in support of many originations and individuals who have spoken out against Savage’s ridiculous and ill-informed rant. I know that your voice would encourage the sponsors of his radio show to pull their funding. I hope that Savage will then be forced to reconsider standing by his words as his did so today. I try not to be curious as to why his brother died in an institution, I just want him to appreciate how out of line he is.
Like many, I work to ensure that more people with challenges stay living in their communities, loved and cared for by people who have an understanding, and invest their time in seeking out better ways to support all individuals in our community. As you know, ordinary people, every day, choose to educate and inform themselves, broadening their understanding and empathy for those living with differences, rather than feeding fear and prejudice, but they do not have a radio show.
You are our voice. Please speak loud for us.
Yours sincerely, Elizabeth Macdonald, mother of two quite distinguished, and different children - I truly hope.
Thursday, July 24, 2008
Sunday, December 30, 2007
Christmas Past Present and Future
Bi Polar Christmas.
The holidays are certainly hectic, but there is time for quiet reflection. Through the melee of shopping for gifts, or the opening of parcels there are continual flashbacks of past times.
As each season passes, we see the growth of our children. Every Christmas we add 2 more notches to the old barn post at the end of our kitchen and our experiences and recollections of Christmases pasts provide a festive milestone for their development and give us hope for the future.
Three Christmases ago, we were all sleep deprived, as our son would have struggled to be calm from Halloween ‘till New Years Day. Any change in his life would keep him up at night. We invested hours of planning, verbal preparation, picture schedules, and social stories to help him cope, in the hope that we would all get some sleep. Most children get excited around this time of year, but for a child with Autism needing the stability of a predictable routine each day, the holidays unfold into a nightmare of change and unpredictability.
Transition trauma.
After starting school in April, and a summer of Extended School Year, our 3-year-old son relied upon the regularity of a school day. Following a consistent routine would help him sleep, and we would see less teeth grinding, mouthing, and a decrease in his frustration levels meant less tantrums and screaming fits. Our family would dread long weekends and school holidays, as we knew he would become unbalanced, and literally fear sleep. In September of that year he completed a successful transition into a new classroom, with prior visits to take pictures of the classroom and meet hi new teachers, we were confident that we had done all we could to help him adjust. But the holidays are full of surprises, and he literally froze at the door of his newly ‘spookified” classroom. From there on we could read his sleep diary and see that any unexpected change be it seasonal decorations, fire drills, or 4 days out of school, would be enough to keep him awake for weeks. Now, our son is 6 and his sister is 5, and like many families with ‘typical’ children, we plan for the new school year by counting the ‘home’ days, and minimizing the impact of the return to school.
They both love ‘home’ days, but once back at school seeing their friends, they’ll love that too. We still rely on social stories and continual verbal reminders to help us all get through the days and nights, but in 3 years, the change is miraculous.
Extreme Gimmies.
Our son like many kids with Autism Spectrum Disorder (ASD), the pursuit of his “objects of desire” or obsessions are at times, extremely intense. Both our children sometimes display the shopping isle meltdowns, but we have a plan, which involves maintaining a wish list. Each child has a wipe-able pad on the fridge, items are written up, and requests are relayed to friends, family, and even Santa! Our reply to unreasonable demands is “Is it on your wish-list?” We know it’s not a long-term solution, and when they’re are older we’ll need some sort of reward chart for earnings and deficits toward their allowances, but for now the wish list works, and ‘toy-isle-tantrums’ are avoided.
Food barometer.
Mealtimes with folk on the spectrum can be tricky at the best of times, and “special meals” are viewed with absolute suspicion. The holidays are traditionally times when friends and family gather around the table, and enjoy home cooking with special recipes handed down through generations. “I don’t like fancy food,” said our son as we laid the table with red and green placemats this Christmas. Over the years, we have had many issues with food, and like many ASD kids, our son hated to try new food, and would become nauseous if exposed to foods with certain textures or smells. We had planned a ‘slightly festive’ meal; as we have learned from previous at-the-table experiences that we need to take small steps toward a ‘typical’ Christmas feast, but we are determined to ‘de-sensitize’ our whole family in order to allow us all the experience the traditions together.
We pulled crackers, told jokes while wearing paper hats, and our son amazed us by just by asking for many second helpings of the roast lamb, but refused to eat the brussel sprouts.
Yep, ‘typical’ feels good.
HAPPY NEW YEAR TO ALL!
The holidays are certainly hectic, but there is time for quiet reflection. Through the melee of shopping for gifts, or the opening of parcels there are continual flashbacks of past times.
As each season passes, we see the growth of our children. Every Christmas we add 2 more notches to the old barn post at the end of our kitchen and our experiences and recollections of Christmases pasts provide a festive milestone for their development and give us hope for the future.
Three Christmases ago, we were all sleep deprived, as our son would have struggled to be calm from Halloween ‘till New Years Day. Any change in his life would keep him up at night. We invested hours of planning, verbal preparation, picture schedules, and social stories to help him cope, in the hope that we would all get some sleep. Most children get excited around this time of year, but for a child with Autism needing the stability of a predictable routine each day, the holidays unfold into a nightmare of change and unpredictability.
Transition trauma.
After starting school in April, and a summer of Extended School Year, our 3-year-old son relied upon the regularity of a school day. Following a consistent routine would help him sleep, and we would see less teeth grinding, mouthing, and a decrease in his frustration levels meant less tantrums and screaming fits. Our family would dread long weekends and school holidays, as we knew he would become unbalanced, and literally fear sleep. In September of that year he completed a successful transition into a new classroom, with prior visits to take pictures of the classroom and meet hi new teachers, we were confident that we had done all we could to help him adjust. But the holidays are full of surprises, and he literally froze at the door of his newly ‘spookified” classroom. From there on we could read his sleep diary and see that any unexpected change be it seasonal decorations, fire drills, or 4 days out of school, would be enough to keep him awake for weeks. Now, our son is 6 and his sister is 5, and like many families with ‘typical’ children, we plan for the new school year by counting the ‘home’ days, and minimizing the impact of the return to school.
They both love ‘home’ days, but once back at school seeing their friends, they’ll love that too. We still rely on social stories and continual verbal reminders to help us all get through the days and nights, but in 3 years, the change is miraculous.
Extreme Gimmies.
Our son like many kids with Autism Spectrum Disorder (ASD), the pursuit of his “objects of desire” or obsessions are at times, extremely intense. Both our children sometimes display the shopping isle meltdowns, but we have a plan, which involves maintaining a wish list. Each child has a wipe-able pad on the fridge, items are written up, and requests are relayed to friends, family, and even Santa! Our reply to unreasonable demands is “Is it on your wish-list?” We know it’s not a long-term solution, and when they’re are older we’ll need some sort of reward chart for earnings and deficits toward their allowances, but for now the wish list works, and ‘toy-isle-tantrums’ are avoided.
Food barometer.
Mealtimes with folk on the spectrum can be tricky at the best of times, and “special meals” are viewed with absolute suspicion. The holidays are traditionally times when friends and family gather around the table, and enjoy home cooking with special recipes handed down through generations. “I don’t like fancy food,” said our son as we laid the table with red and green placemats this Christmas. Over the years, we have had many issues with food, and like many ASD kids, our son hated to try new food, and would become nauseous if exposed to foods with certain textures or smells. We had planned a ‘slightly festive’ meal; as we have learned from previous at-the-table experiences that we need to take small steps toward a ‘typical’ Christmas feast, but we are determined to ‘de-sensitize’ our whole family in order to allow us all the experience the traditions together.
We pulled crackers, told jokes while wearing paper hats, and our son amazed us by just by asking for many second helpings of the roast lamb, but refused to eat the brussel sprouts.
Yep, ‘typical’ feels good.
HAPPY NEW YEAR TO ALL!
Thursday, August 30, 2007
Update to New Hampshire Leadership
My Name is Liz Macdonald, and I am a ’05 Leadership graduate.
This is my first update since graduating from the Leadership training, and truthfully, I thought I did not have much to share. Not that leadership did not give me the tools I needed to “go out and make a difference” for it surely did. I just thought my life was not worthy of note. ‘I’ll write when I’ve done something’ I said to my self each time I received the prompt email from devoted Beth Dixon.
This year is different, and in comparison to most of the updates I have been reading, especially Laurie Mc Cray ( wow!) – my contributions are not on the same scale, Yet since 2005 I have accomplished many things – and so has my son.
John will begin 1st grade next week, and in the midst of new construction at his school, I met with the new principal sharing with him my vision for my son, the school and our community. I also uncovered his “self interest” and established the beginning of what I hope will be a fruitful relationship.(I wouldn’t have done that before Leadership!)
Leadership introduced me to post graduate learning. Now I ‘need’ to keep learning and have attended several conferences, workshops, and last year I studied at Antioch New England, completing the Autism Spectrum Disorder Certificate Program. It was a brilliant opportunity to work with such high-liners in the field as Stephen Shore, Larry Welkowitz and Teresa Bolick. I met many people dedicated to the education of those on the spectrum, and was able to apply everything I have learned to my own situation, with many positive results.
This is my first update since graduating from the Leadership training, and truthfully, I thought I did not have much to share. Not that leadership did not give me the tools I needed to “go out and make a difference” for it surely did. I just thought my life was not worthy of note. ‘I’ll write when I’ve done something’ I said to my self each time I received the prompt email from devoted Beth Dixon.
This year is different, and in comparison to most of the updates I have been reading, especially Laurie Mc Cray ( wow!) – my contributions are not on the same scale, Yet since 2005 I have accomplished many things – and so has my son.
John will begin 1st grade next week, and in the midst of new construction at his school, I met with the new principal sharing with him my vision for my son, the school and our community. I also uncovered his “self interest” and established the beginning of what I hope will be a fruitful relationship.(I wouldn’t have done that before Leadership!)
Leadership introduced me to post graduate learning. Now I ‘need’ to keep learning and have attended several conferences, workshops, and last year I studied at Antioch New England, completing the Autism Spectrum Disorder Certificate Program. It was a brilliant opportunity to work with such high-liners in the field as Stephen Shore, Larry Welkowitz and Teresa Bolick. I met many people dedicated to the education of those on the spectrum, and was able to apply everything I have learned to my own situation, with many positive results.
Earlier in 2006 I gathered members from school and community to form a playgroup here in Hinsdale. My motivation was to be a local version of ‘Child-Find’, to help us identify children that may be at risk for developmental delay. The play dates continue to be successful and parents report smoother transitions into school for their youngsters who regularly attend and tell us they have made lasting friendships with folks they met at one of the play session. Our efforts were recognized by the Family Support Council (Affiliated with our area agency- Monadnock Developmental Services) who presented the playgroup with a check$ last spring to help sustain the group. The playgroup is also supported by the Hinsdale Prevention Coalition, who are invested in prevention of drug abuse along with Family Strength. We also team-up with New Hampshire Healthy Kids, and Cheshire Smiles who use the playgroup setting to educate children and their parents.
In retrospect, I realize that my family has moved from isolation to involvement through collaboration. And Leadership bought about this change.
Back in Feb. 06 The Collaboration for Autism initiative from New Hampshire Connections gained momentum here in the Monadnock region, and in June 07 a group of us completed the first stage of ‘Camp Inclusion’. Representatives from MDS, Antioch, New Hampshire Connections, and the Family support council, Monadnock Family services and more coordinated a full days training for over 50 local and regional camp directors and personnel. We are delighted at the success of the training that featured Cathy Apfel and surrounded the issue of how to increase the opportunities for AS kids in a multitude of recreation environments.
Recently, The Parent Information Center provided me with the training needed to become a surrogate Parent, and as I wait to be of service, I have become a parent advocate for families who need support to navigate the world of special education. My second advocate IEP meeting is next week, and I hope to be of service to more families as we head into the school year.
As the summer ends we the Macdonalds ‘brace ourselves’ for the transition back to school, we plan our next action,,,, which is to apply for citizenship and then to vote!
Thank You Leadership for making me more accountable.
Best to all, Liz Macdonald
Thursday, May 24, 2007
parents supporting parents
In response to -:
Observation of a Parent Support Group Antioch University New England
Advocacy Applications for Working with Individuals on the Autism Spectrum
5/14/2007
Elizabeth Macodnald May 18, 2007.
Everything we do as parents and educators has a tremendous impact on outcomes for our children. Educators and families are fortunate to have the resources to give their utmost to the children in their care, and should give thought to the sustainability of those resources. It seems all too common that the parent, predominately mothers have "put everything on hold" while they ‘fight’ for their child. As a parent with a child who has Autism, I know there is little choice in how we spend our time. No other parent however invested will do for our children what we do, and no teacher however dedicated is held accountable in the way that I hold myself responsible for the well being of my child.
The parents in the support group you experienced are undoubtedly relentless in their pursuit of the best education for their children, but they as individuals themselves may be in a holding pattern, waiting to return to the person they used to be before the diagnosis, before the challenges of behaviors, before the stakes became so high. In these circumstances families may be vulnerable; relationships may be under pressure and children might feel that they are at the center of the stress and anxiety. The support group is hopefully part of a larger wrap-around network of family, friends, educational and other professionals coming together for the good of everyone, but especially for the good of the child. It saddened me to hear that the group was not well attended, and I hope that the two are not discouraged and continue to find support from one another at the very least.
Observation of a Parent Support Group Antioch University New England
Advocacy Applications for Working with Individuals on the Autism Spectrum
5/14/2007
Elizabeth Macodnald May 18, 2007.
Everything we do as parents and educators has a tremendous impact on outcomes for our children. Educators and families are fortunate to have the resources to give their utmost to the children in their care, and should give thought to the sustainability of those resources. It seems all too common that the parent, predominately mothers have "put everything on hold" while they ‘fight’ for their child. As a parent with a child who has Autism, I know there is little choice in how we spend our time. No other parent however invested will do for our children what we do, and no teacher however dedicated is held accountable in the way that I hold myself responsible for the well being of my child.
The parents in the support group you experienced are undoubtedly relentless in their pursuit of the best education for their children, but they as individuals themselves may be in a holding pattern, waiting to return to the person they used to be before the diagnosis, before the challenges of behaviors, before the stakes became so high. In these circumstances families may be vulnerable; relationships may be under pressure and children might feel that they are at the center of the stress and anxiety. The support group is hopefully part of a larger wrap-around network of family, friends, educational and other professionals coming together for the good of everyone, but especially for the good of the child. It saddened me to hear that the group was not well attended, and I hope that the two are not discouraged and continue to find support from one another at the very least.
Thursday, May 10, 2007
Why Lable?
The week started with an article in New Scientist Tech “When sociable computing meets autism”
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.
Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.
Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”
As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.
In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.
Research links-:
http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007
http://amanda.autistics.org/ Accessed 2.19.2007
http://www.autistics.org/ Accessed 2.19. 2007
http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007
http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.
Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.
Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”
As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.
In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.
Research links-:
http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007
http://amanda.autistics.org/ Accessed 2.19.2007
http://www.autistics.org/ Accessed 2.19. 2007
http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007
http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007
Perception is Everything
Autism on the air.
Building on last year's successful campaign, Autism Speaks and retailer TJ Maxx partnered again this April on a month-long fundraising and awareness program. From April 8 through April 28 at 800 TJ Maxx stores nationwide, customers were be invited to purchase an Autism Speaks puzzle piece at the checkout for a donation of $1, with all proceeds benefiting Autism Speaks. A store casting voice stated that every 20 minutes a family receives the ‘devastating’ news that their child has Autism.
4 years ago, we were one of those families. Our son’s development had halted, and then rapidly regressed. He was withdrawing from the world, and our family. For us, not knowing what was happening was devastating, followed by a mix of relief and grief on receiving the diagnosis. It was the beginning of our journey to understanding autism and our son’s autism. Early interventions enabled him to ever so slowly progress into an amazing young man with a passion that drives him to succeed, vastly different from our initial perception of someone with autism. As our children mature, our own knowledge of the varying perspectives and approaches to their education mature too. We document our journey and we have witnessed a transformation over the years, and we consider how our son would react to being told that he ‘devastated’ us.
Voices of Autism.
According to the Center for Disease Control the incidences of autism have increased to one in 150, and the numbers of people with autism finding their voice is on the rise too giving us plenty of opportunity to listen and understand. After all, how better to learn about autism than from an autistic. Adults, clinically or self-diagnosed with autism, have found many avenues to share their opinions. Stephen Shaw, and Phil Swartz both confirmed that most people with autism do not object to the term ‘autistic’. Indeed they may prefer “autistic”, to “person with autism”, explaining that they are unable to separate or distinguish themselves from their autism or in Phil’s case – Asperger’s. Through the discussion in class, I now appreciate that it is not the label, or language that is used to identify an individual that is contentious, rather, it is the assumptions that can accompany the labeling that can be infuriating to ‘autistics’ or ‘aspies’. Some autistics make huge efforts to re educate society on the positive aspects of their differences, and they point out that many of terms used in association with autism are disrespectful and insulting to those on the spectrum. In an essay titled Autism, Genius, and Greatness written by Frank Klein an adult with autism, he objects to the term “intervention” stating that is … “offensive to autistic people that do not hold that they are the result of something awful. Indeed, there is good that comes from autism, even though the distraught parents of newly-diagnosed autistic children may not be able to see it”. Some web sites of organizations claiming to be a “voice of Autism” host postings where the ‘A’ word is aligned to the ‘C’ of Cancer. The ‘search for a cure’ continues and as parents and families consider extreme measures such as ‘chelation’ to “ rid their child of autism” and many of them have plunged themselves into debt following the promise to ‘defeat autism now’. Others have a more fatalistic approach, and prescribe limited interventions and maximum respect and tolerance. Such sites like neurodiversity.com, and the Blogs of people like autism diva have some extreme reactions to society’s treatment of their population. I believe it’s easier for our family to promote acceptance and tolerance because our son seems on the surface to be better adapted that many on the spectrum. I would be wary of asking the same acceptance from a parent that struggles to engage their child who demonstrates severe self-injurious behaviors, a parent who is exhausted, barely coping with the daily challenges.
Disclosure for a child.
When asked when at what age a child should be told that they have autism Stephen said that he could not recall exactly when he was told. Autism was a familiar word in his home and one that he grew-up with. I was relieved to hear that Stephen supported early parent-to-child disclosure. Autism is a word my son, who has just turned 6, knows very well. We discuss autism as a possible explanation as to why he was so good at knowing his shapes when he was little, and why he could spin almost anything. We tell him what we think explains his autism and what other people think about it, in an attempt to expose him to the variances of society’s perception of autism, and the individuals who live with exceptional challenges everyday. Our daughter has who has ‘Princessism’ is younger, but emotionally her brother’s equal, She competes for attention, so we list the strengths that accompany the diagnosis. We hope that both children understand that their individual qualities are perceived, evaluated and attributed. We teach them self-determination.
By describing our own strengths and challenges we reinforce their understanding of us, while sending a message of acceptance. We see every moment as a teaching opportunity, giving examples like how most people do better when they know what to expect, or what’s expected of them.
Fighting the fear.
We review the studies that investigate such topics as complex brain function or heavy metal retention. We have learned to be sensitive to the facts, rather than the news grabbing headlines. Our son’s regression into autism might well have been caused by an array of separate or combined environmental triggers. Research into the cause of autism continues and it seems that each week findings shift from confirmation to denial. There is no doubt that our family’s heritage contributed to the genetic pre cursive or susceptibility in our son. I have 2 nephews diagnosed with ASD, and other members in both families have many of the exceptions associated with autism. Their strengths have served them well. The adults in our families live interdependently; some are over achievers, and many have some unusual characteristics that the English may describe as mere eccentricities. Our family grew up in a world where we did not purposely uncover our weaknesses or vulnerabilities; we could be ‘a little quirky’, but we had to overcome any challenges often without support. My nephews family have not disclosed their children’s disability. They tell the stigma attached with formalized diagnosis is too great, and may prevent their children from getting a job in the future. So far I have not found a way to advise that unless they have access to all the services that a formal diagnosis would yield, they may not gain the skills needed to maintain employment.
The fear of being different, standing out or being singled-out is understandable. In the book Perfect Targets, Rebekah Heinrichs explains why the bullying of asperser kids in almost inevitable; involving power balance issues, challenges with social interactions, emotional vulnerability, anxiousness, inability to easily adapt to change, and clumsiness add to the likelihood that children with AS will become targets for bullying. But these issues alone are not necessarily contusive to bullying. It takes two or more to bully. The reaction of others unaware or not accepting of autism or Asperger’s creates the setting for bullying.
Disclosed futures.
Society’s attitude toward autism may be changing for the better, but the progress is sensitive to setbacks. I refer to Virginia Tech incident where many were killed at the hands of a loaner reported to be autistic. Generally, people understand that exceptional people archive exceptional feats but any individual strengths can be outweighed by another’s poor perception of autism. Autistics may struggle to make a ‘sure thing’ judgment about disclosure. How can they effectively assess their peers, their boss, and their bank manager when their ‘veil’ obscures their perception? During the informal interview session with Andy – a member of the panel at Antioch, we discussed Internet and e-mail security. When Andy realized that his e-mail exchanges at work may be monitored he said, “ Then I may have already disclosed” He looked concerned, and unsettled. His work environment was not safe. He was not secure. He may have lost the choice to disclose or not.
For our son the teaching of self-determination and self-advocacy has already begun. We use modeling, and social narrative in our every-day-life family classroom. These subjects are a challenge to teach, and we know it may take him a while to learn when to disclose and to whom. Using tools like the self disclosure worksheet from Ask and Tell (Shore, Ruth Elaina Joyner Hane 2004. page 25) will certainly help. There are social goal on his IEP that involve building an understanding of what makes a goof friend, and which remarks are meant as a joke, and which are intended to be hurtful. Our son also needs to begin learning about disclosure, and we have to begin with respecting his individual choice. Stephen’s class made me realize that we should find means to advocate for our son, without disclosure. Up until now, we had ‘used’ his autism to promote awareness, but we can no longer make that choice for him.. Today I asked him if he wanted people to know about “His Autism” I asked if he wanted me to tell people, or if he wanted to choose. He said that other people autism was better than his, that he’s six, maybe when he was 7/8/9, maybe. His words drifted off, and I could tell he was really considering it, but that he also wanted to get home to play. I said that we could talk about it again some time.
References -:
Autism Speaks TJ Maxx, In-store Fundraising CampaignApril 8 - April 28
Center for Disease Control
Frank Klein, 2001 Autism, Genius, and Greatness http://home.att.net/~ascaris1/index.html accessed May 5, 2007 12.48 am
Parent Information Center’s ( PIC)
Rebeka Heinrichs, Perfect Targets review Jan 2003 http://www.socialworktoday.com/archive/swnov2006p18.shtml
accessed 5/8/07 10:15 pm
Shore,S. Ask and Tell: (2004) Self-Advocacy and Disclosure of people on the Autism Spectrum Autism Asperger’s Publishing Co
Building on last year's successful campaign, Autism Speaks and retailer TJ Maxx partnered again this April on a month-long fundraising and awareness program. From April 8 through April 28 at 800 TJ Maxx stores nationwide, customers were be invited to purchase an Autism Speaks puzzle piece at the checkout for a donation of $1, with all proceeds benefiting Autism Speaks. A store casting voice stated that every 20 minutes a family receives the ‘devastating’ news that their child has Autism.
4 years ago, we were one of those families. Our son’s development had halted, and then rapidly regressed. He was withdrawing from the world, and our family. For us, not knowing what was happening was devastating, followed by a mix of relief and grief on receiving the diagnosis. It was the beginning of our journey to understanding autism and our son’s autism. Early interventions enabled him to ever so slowly progress into an amazing young man with a passion that drives him to succeed, vastly different from our initial perception of someone with autism. As our children mature, our own knowledge of the varying perspectives and approaches to their education mature too. We document our journey and we have witnessed a transformation over the years, and we consider how our son would react to being told that he ‘devastated’ us.
Voices of Autism.
According to the Center for Disease Control the incidences of autism have increased to one in 150, and the numbers of people with autism finding their voice is on the rise too giving us plenty of opportunity to listen and understand. After all, how better to learn about autism than from an autistic. Adults, clinically or self-diagnosed with autism, have found many avenues to share their opinions. Stephen Shaw, and Phil Swartz both confirmed that most people with autism do not object to the term ‘autistic’. Indeed they may prefer “autistic”, to “person with autism”, explaining that they are unable to separate or distinguish themselves from their autism or in Phil’s case – Asperger’s. Through the discussion in class, I now appreciate that it is not the label, or language that is used to identify an individual that is contentious, rather, it is the assumptions that can accompany the labeling that can be infuriating to ‘autistics’ or ‘aspies’. Some autistics make huge efforts to re educate society on the positive aspects of their differences, and they point out that many of terms used in association with autism are disrespectful and insulting to those on the spectrum. In an essay titled Autism, Genius, and Greatness written by Frank Klein an adult with autism, he objects to the term “intervention” stating that is … “offensive to autistic people that do not hold that they are the result of something awful. Indeed, there is good that comes from autism, even though the distraught parents of newly-diagnosed autistic children may not be able to see it”. Some web sites of organizations claiming to be a “voice of Autism” host postings where the ‘A’ word is aligned to the ‘C’ of Cancer. The ‘search for a cure’ continues and as parents and families consider extreme measures such as ‘chelation’ to “ rid their child of autism” and many of them have plunged themselves into debt following the promise to ‘defeat autism now’. Others have a more fatalistic approach, and prescribe limited interventions and maximum respect and tolerance. Such sites like neurodiversity.com, and the Blogs of people like autism diva have some extreme reactions to society’s treatment of their population. I believe it’s easier for our family to promote acceptance and tolerance because our son seems on the surface to be better adapted that many on the spectrum. I would be wary of asking the same acceptance from a parent that struggles to engage their child who demonstrates severe self-injurious behaviors, a parent who is exhausted, barely coping with the daily challenges.
Disclosure for a child.
When asked when at what age a child should be told that they have autism Stephen said that he could not recall exactly when he was told. Autism was a familiar word in his home and one that he grew-up with. I was relieved to hear that Stephen supported early parent-to-child disclosure. Autism is a word my son, who has just turned 6, knows very well. We discuss autism as a possible explanation as to why he was so good at knowing his shapes when he was little, and why he could spin almost anything. We tell him what we think explains his autism and what other people think about it, in an attempt to expose him to the variances of society’s perception of autism, and the individuals who live with exceptional challenges everyday. Our daughter has who has ‘Princessism’ is younger, but emotionally her brother’s equal, She competes for attention, so we list the strengths that accompany the diagnosis. We hope that both children understand that their individual qualities are perceived, evaluated and attributed. We teach them self-determination.
By describing our own strengths and challenges we reinforce their understanding of us, while sending a message of acceptance. We see every moment as a teaching opportunity, giving examples like how most people do better when they know what to expect, or what’s expected of them.
Fighting the fear.
We review the studies that investigate such topics as complex brain function or heavy metal retention. We have learned to be sensitive to the facts, rather than the news grabbing headlines. Our son’s regression into autism might well have been caused by an array of separate or combined environmental triggers. Research into the cause of autism continues and it seems that each week findings shift from confirmation to denial. There is no doubt that our family’s heritage contributed to the genetic pre cursive or susceptibility in our son. I have 2 nephews diagnosed with ASD, and other members in both families have many of the exceptions associated with autism. Their strengths have served them well. The adults in our families live interdependently; some are over achievers, and many have some unusual characteristics that the English may describe as mere eccentricities. Our family grew up in a world where we did not purposely uncover our weaknesses or vulnerabilities; we could be ‘a little quirky’, but we had to overcome any challenges often without support. My nephews family have not disclosed their children’s disability. They tell the stigma attached with formalized diagnosis is too great, and may prevent their children from getting a job in the future. So far I have not found a way to advise that unless they have access to all the services that a formal diagnosis would yield, they may not gain the skills needed to maintain employment.
The fear of being different, standing out or being singled-out is understandable. In the book Perfect Targets, Rebekah Heinrichs explains why the bullying of asperser kids in almost inevitable; involving power balance issues, challenges with social interactions, emotional vulnerability, anxiousness, inability to easily adapt to change, and clumsiness add to the likelihood that children with AS will become targets for bullying. But these issues alone are not necessarily contusive to bullying. It takes two or more to bully. The reaction of others unaware or not accepting of autism or Asperger’s creates the setting for bullying.
Disclosed futures.
Society’s attitude toward autism may be changing for the better, but the progress is sensitive to setbacks. I refer to Virginia Tech incident where many were killed at the hands of a loaner reported to be autistic. Generally, people understand that exceptional people archive exceptional feats but any individual strengths can be outweighed by another’s poor perception of autism. Autistics may struggle to make a ‘sure thing’ judgment about disclosure. How can they effectively assess their peers, their boss, and their bank manager when their ‘veil’ obscures their perception? During the informal interview session with Andy – a member of the panel at Antioch, we discussed Internet and e-mail security. When Andy realized that his e-mail exchanges at work may be monitored he said, “ Then I may have already disclosed” He looked concerned, and unsettled. His work environment was not safe. He was not secure. He may have lost the choice to disclose or not.
For our son the teaching of self-determination and self-advocacy has already begun. We use modeling, and social narrative in our every-day-life family classroom. These subjects are a challenge to teach, and we know it may take him a while to learn when to disclose and to whom. Using tools like the self disclosure worksheet from Ask and Tell (Shore, Ruth Elaina Joyner Hane 2004. page 25) will certainly help. There are social goal on his IEP that involve building an understanding of what makes a goof friend, and which remarks are meant as a joke, and which are intended to be hurtful. Our son also needs to begin learning about disclosure, and we have to begin with respecting his individual choice. Stephen’s class made me realize that we should find means to advocate for our son, without disclosure. Up until now, we had ‘used’ his autism to promote awareness, but we can no longer make that choice for him.. Today I asked him if he wanted people to know about “His Autism” I asked if he wanted me to tell people, or if he wanted to choose. He said that other people autism was better than his, that he’s six, maybe when he was 7/8/9, maybe. His words drifted off, and I could tell he was really considering it, but that he also wanted to get home to play. I said that we could talk about it again some time.
References -:
Autism Speaks TJ Maxx, In-store Fundraising CampaignApril 8 - April 28
Center for Disease Control
Frank Klein, 2001 Autism, Genius, and Greatness http://home.att.net/~ascaris1/index.html accessed May 5, 2007 12.48 am
Parent Information Center’s ( PIC)
Rebeka Heinrichs, Perfect Targets review Jan 2003 http://www.socialworktoday.com/archive/swnov2006p18.shtml
accessed 5/8/07 10:15 pm
Shore,S. Ask and Tell: (2004) Self-Advocacy and Disclosure of people on the Autism Spectrum Autism Asperger’s Publishing Co
Friday, April 27, 2007
Interview with an educator
Interview with A special Education Professional. March 29th 2007.
Why did you choose to become a special educator?
I was 11 when I saw the movie “The Miracle Worker” and I wanted to be Ann Bancroft
I began working with the Death and taught myself finger spelling.
YMCA Perkins school for the blind and I was a coordinator for the homeless. It was way back in1974 before the days of IEP’S. I remember when IEP’s were 3 page carbon copied.
What is the best part about your work? Seeing people empowered by the small things I do.
What is most frustrating? Each week it changes. The biggest issue is the anti special education attitude which is due to limited funds and resources. Trying to get school board members to accept and understand the needs of Special Education is a challenge. The “duel system” is tough and a daily frustration.
What does your daily schedule look like? It varies – sometimes I am in my office fielding questions and other times out visiting school in the district, but the rise in responsibility means I spend more time in the office.
How much preparation time and time to consult with colleagues do you have in your schedule? Yes, I do have some preparation time, but not so much consultation with individuals. We tend to work as a group.
What would you want your students’ parents to know? How to advocate properly. The parents have a lot of information but they need to know how to advocate effectively for their children – it’s not about ego.
What is your experience of IEP meetings? In the past, I have been in all positions- Teacher, Special educator, and now as the Local Education Authority (LEA).
What might parents do to improve their relationship with their child’s educator and school system? The school needs to continue to work with partnering – do not take ‘No’ for an answer – and while some parents refuse to come to IEP meetings, we need to work to bring those who may need a little help to join the circle, over time.
How might the relationship with parents be improved? (As discussed above) – refer to a book by Ruby Payne, A Framework for Understanding Poverty. In considering what makes communication difficult we need to understand their own experiences, establish their strengths and their limitations. We need to appreciate that developmentally parents go through a process to understand, and accept their child. Communication can be difficult at times due to their degree of acceptance for who their child truly is, it is important for educators to take readings on this and realize they might be in one place and the parents in another, it is not a bad thing, just a thing to note when communication flow stalls.
Parents of spectrum kids may also be on the spectrum. We need to establishing were parent’s are developmentally – just as we would a student – that’s a great idea.
Continued on page 2
What might parents do to improve their child’s education? Some parents need more skills, others have an attitude of entitlement and there is some lack of responsibility. Parents need education too, so we need to find a way to empower everybody.
Why do you think educators and parents often have an adversarial relationship?
We have to consider that the parents own educational experience has a bearing on how their view school “ I had trouble at school” a parent may eventually admit after several difficult meetings. For some parents school is very authoritative and coming to school brings back memories.
How might this be improved? These cases need constant tending and we need to reaffirm that their voices are heard.
How do you feel you contribute to the improvement of education for all children in New Hampshire (Qualified – how do you affect education, at state level)?
I attend regular meetings with all Special Education officials and collaborate with others – we all have the same concerns and address them through advocacy to the state. I was involved in the Brail bill and ongoing we need to lay the groundwork for people to come into the profession and replace the outgoing teachers who will be retiring. There will be great drain very soon.
Other comments -: Planning trip to Galway University to complete a study comparison on education.
Hope to find ways to reach those parents I describe as “catchable” those who with (just a little more time, educations or one more successful approach) would come on board to support their child’s education.
Easy IEP – It will improve over time.
Questions for the interviewer.
Can we collaborate? Yes absolutely!
Code of ethics for IEP teams (work in progress from educational interventions course at Antioch)
Keep me up to date with proposed parent support/action group, and the Person Centered Vision Planning services
Why did you choose to become a special educator?
I was 11 when I saw the movie “The Miracle Worker” and I wanted to be Ann Bancroft
I began working with the Death and taught myself finger spelling.
YMCA Perkins school for the blind and I was a coordinator for the homeless. It was way back in1974 before the days of IEP’S. I remember when IEP’s were 3 page carbon copied.
What is the best part about your work? Seeing people empowered by the small things I do.
What is most frustrating? Each week it changes. The biggest issue is the anti special education attitude which is due to limited funds and resources. Trying to get school board members to accept and understand the needs of Special Education is a challenge. The “duel system” is tough and a daily frustration.
What does your daily schedule look like? It varies – sometimes I am in my office fielding questions and other times out visiting school in the district, but the rise in responsibility means I spend more time in the office.
How much preparation time and time to consult with colleagues do you have in your schedule? Yes, I do have some preparation time, but not so much consultation with individuals. We tend to work as a group.
What would you want your students’ parents to know? How to advocate properly. The parents have a lot of information but they need to know how to advocate effectively for their children – it’s not about ego.
What is your experience of IEP meetings? In the past, I have been in all positions- Teacher, Special educator, and now as the Local Education Authority (LEA).
What might parents do to improve their relationship with their child’s educator and school system? The school needs to continue to work with partnering – do not take ‘No’ for an answer – and while some parents refuse to come to IEP meetings, we need to work to bring those who may need a little help to join the circle, over time.
How might the relationship with parents be improved? (As discussed above) – refer to a book by Ruby Payne, A Framework for Understanding Poverty. In considering what makes communication difficult we need to understand their own experiences, establish their strengths and their limitations. We need to appreciate that developmentally parents go through a process to understand, and accept their child. Communication can be difficult at times due to their degree of acceptance for who their child truly is, it is important for educators to take readings on this and realize they might be in one place and the parents in another, it is not a bad thing, just a thing to note when communication flow stalls.
Parents of spectrum kids may also be on the spectrum. We need to establishing were parent’s are developmentally – just as we would a student – that’s a great idea.
Continued on page 2
What might parents do to improve their child’s education? Some parents need more skills, others have an attitude of entitlement and there is some lack of responsibility. Parents need education too, so we need to find a way to empower everybody.
Why do you think educators and parents often have an adversarial relationship?
We have to consider that the parents own educational experience has a bearing on how their view school “ I had trouble at school” a parent may eventually admit after several difficult meetings. For some parents school is very authoritative and coming to school brings back memories.
How might this be improved? These cases need constant tending and we need to reaffirm that their voices are heard.
How do you feel you contribute to the improvement of education for all children in New Hampshire (Qualified – how do you affect education, at state level)?
I attend regular meetings with all Special Education officials and collaborate with others – we all have the same concerns and address them through advocacy to the state. I was involved in the Brail bill and ongoing we need to lay the groundwork for people to come into the profession and replace the outgoing teachers who will be retiring. There will be great drain very soon.
Other comments -: Planning trip to Galway University to complete a study comparison on education.
Hope to find ways to reach those parents I describe as “catchable” those who with (just a little more time, educations or one more successful approach) would come on board to support their child’s education.
Easy IEP – It will improve over time.
Questions for the interviewer.
Can we collaborate? Yes absolutely!
Code of ethics for IEP teams (work in progress from educational interventions course at Antioch)
Keep me up to date with proposed parent support/action group, and the Person Centered Vision Planning services
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