A Challenge For You

The video below has been making the rounds of Facebook the last couple of days, and it is absolutely wonderful. Maddox and her Mom say so much without uttering a word. And through their efforts, more and more people may come away with a new understanding, a new acceptance, a new view.

So here's my challenge. I think all of us parents of children with disabilities need to produce a similar message - be it through video or pictures. Let's begin to educate others in ways that we haven't used before. Let's grab the attention of this generation of Facebookers/Bloggers/YouTubers/and Tweeters. I know we have all blogged and tweated our stories, but let's see if we can increase our audiences and include people whose lives have yet to be touched by disability. Let's model it after Maddox's message and create a library of information for the digital world. Let's use the tools that the world is using, and let's spread our message of understanding and acceptance.

I would be glad to coordinate the effort, help compile the library, and then market our stories to people who need to see them. What do you say??

Spenser and Dayton

Want to read something to make your day? Want to feel the joy of true inclusion? Want to be inspired by someone who feels he is too young to be an inspiration?

Check out this story and also make sure to watch the video at the end of the story. It will make your day!!

Special Exposure Wednesday

I love the colors of Christmas! Great picture, Chip!

One

I may be way out in left field with this post, but it sometimes seems to me that some parents of children with disabilities seem jealous that their child is not ‘as disabled’ as their friend’s child.

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

What I have seen several times is that the parent might slightly exaggerate their child’s disability. Or, the parent will accumulate the trappings (high tech wheelchairs, special vans, etc) that might admit them to their group of choice. They will pattern their daily experiences (“Mary was up four times last night, and I am so exhausted today”), after the others in the group to which they wish to belong. They will adjust their lives to place more focus on their child and that child’s disability if doing so will admit them to the group.

Here’s an example without using real names, of course:

Sue is a young 30-something parent of a little girl with CP. On one of her visits to the hospital, she met another parent, a parent of a child whose survival depends on a trach, tube feeding, and constant suctioning. That other parent talked about her friends, other parents who shared a similar life and who got together regularly for birthday parties, lunches, and other such outings. Sue, feeling a little isolated in her life, exaggerated the level of her daughter’s issues just a bit to wrangle an invitation to the next group meeting. And from there, the exaggerations continued, but she was admitted to the group.

It saddens me that parents might feel a need to do this. It saddens me that we parents of children with disabilities isolate ourselves with others in similar situations just to find the support we need. We talk about inclusion all the time, and all the while, we often unknowingly are excluding.

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

We may not be able to change the world as one, but if each of us makes small inroads, I have to believe that one day the world will change and be universally accepting.

It's a Launch!

Many years ago, I would go shopping or out to a restaurant without a thought about accessibility. I would walk up curbs without thinking about people in wheelchairs. I would get annoyed with store aisles that were so packed with merchandise that I couldn’t find what I wanted. But, it would never occur to me that some people wouldn’t even be able to move around that same store. And like a lot of other people, I would stare at a blind person using a cane, but I wouldn’t ask if I could assist or direct them to the checkout register.

All that changed when I adopted four children, two of whom are in wheelchairs, one who is blind, and one who doesn’t handle too much sensory input very well. Although those adoptions began 14 years ago, I’ve not seen much progress related to accessibility in my community or other communities my family visits.

So I decided to create a website as a way to raise awareness about accessibility and inclusion. My new site is called US TOO PLEASE.



As my children and I travel through our community, I will review the places we visit. I will write about how physically accessible they are – how welcoming they are to people with disabilities – how inclusive a product or service they offer – and whether or not they make reasonable accommodations for people with disabilities.

I do not mean US TOO PLEASE to be an exercise in bashing. I will share the good as well as the not so good, but I will always let each establishment know the results of my review. I will offer to publish any comments they may have, and I will inform them of resources that are available for improving their accessibility and inclusive practices.

My sincere hope is that this endeavor will help to improve my community, as well as all communities, for people with disabilities. I want to leave a legacy of inclusion for my children. I want to make a positive difference in the lives of all people, especially those with disabilities.

Please visit my new site and let me know what you think! And if you have any specific places you would like me to review, just send me an email.

p.s. Having a new website does NOT mean I will devote any less time to this blog - my baby that has allowed me to find my voice, to make special friendships, and to keep me sane! I will still be writing here every Monday through Friday as always!

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.
-------------------------

Who is ADAPT?

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?

Coming Home

Because of my school district's lackluster performance at including students with disabilities in extracurricular and general education activities, I had pretty much given up on Ashley ever participating in school dances, PTA performances, or school clubs. In fact, the first and last time I did request that Ashley participate was way back in 2004, and it was a total disaster. That story of Ashley's token acceptance into a holiday school performance was what inspired Jonathan Mooney, author of Short Bus Stories - A Journey Beyond Normal, to include Ashley's story in his book.

So here we are many years later, and maybe, just maybe things are different.

Last Friday was Homecoming at Ashley's high school. There was to be a parade before the football game, and Ashley, along with the Circle of Friends club, was invited to participate in the parade. I agreed that Ash could participate, but deep in the pit of my stomach was a worry that once again tokenism would reign over inclusion.

I was wrong.

Ashley was welcomed - her Circle of Friends regular education students included her just as everyone else - disabled or not - was included - and Ashley had a absolute blast!

She showed up in her wheelchair decorated with ribbons in the school colors. She wore clothes in the school colors, and her smile rivaled even the cheerleader's smiles.

She lined up with the other students. She 'listened' to the band practicing right beside her. She clapped and hooted, and she walked around the entire football field with her peers.

The world shifted that evening, and I hope it never goes back.



Today I am thankful for a day off from work - a day when the laundry is done and the house is clean - a true day off!

Thankful Thursday on Wednesday

Today I am thankful for the Virginia Board for People with Disabilities and their new campaign...

Today, in my state (Virginia), people are making a difference for Virginians with disabilities. Today, is the official launch of the ABLE TO CHOOSE public awareness campaign.

“The ABLE TO CHOOSE campaign invites Virginians to join in making all aspects of community life inclusive and welcoming to people with disabilities,” said Heidi Lawyer, Executive Director of the Virginia Board for People with Disabilities (VBPD).

“The Commonwealth has a promising opportunity to reform its historical focus on large state institutions and fully transition to a true community-based system of support for its citizens with disabilities, said 83% of Virginians in a recent poll funded in part by VBPD as part of the planning for ABLE TO CHOOSE.”

The campaign’s launch will take place at the Virginia General Assembly. Lawmakers, in town for 2 months, were offered coffee at 8am this morning, but they had only one choice – black coffee, no cream, no sugar, and no lattes. This lack of choice was intended as a friendly reminder that everyday options for person with disabilities in Virginia are still limited. The campaign asks legislators and the general public to imagine how they’s feel if they visited a coffee shop or restaurant and were offered few choices. This unimaginable situation, involving something as simple as coffee, represents the reality for many people with disabilities who have limited choiced in more important matters such as where they live and the services that they receive.

Lunch will also be offered to legislators, consisting of a menu with only one choice – item #46 – to represent Virginia’s standing as 46th among all states for community-based services for people with disabilities.

Over the next year, this outreach effort will continue, with Virginians taking part in community events, press coverage, public service announcements, online activity, educational material distribution, and other activities to motivate the community to become more involved in guaranteeing civil rights and equal opportunity.

I’m very excited about this campaign and will share more information about it as the year progresses. In the meantime, please take a moment to view this video:

Where?

While I was out running errands this past weekend, something struck me as strange. I didn't see any adults with disabilities. In fact, as I thought back over the many errands I have run in the past year, I realized that I almost never see an adult with disabilities in my community.

I see lots of children with disabilities, and even a few teenagers. They are usually with their parents, and never with a group of other children.

I have seen one group of adults with obvious cognitive disabilities having lunch at one of our local malls. The adults, 5 of them, were with caregivers - women who appeared to me to be group home staff. The adults didn't seem to care that they were in the community - they were just doing as their carers directed. None of the adults looked happy.

So where are the adults with disabilities? I live in a medium-sized city, a city which is the capital of our state. I am in many different stores and community locations, places like grocery stores, malls, Target, WalMart, the library, and many medical facilities. I don't know why I haven't noticed before, but this weekend it was like I woke up to the fact that there were no adults with disabilities in my community.

Why is that? Our school systems spend most of the educational time supposedly preparing our children with cognitive disabilities for as independent a life as possible. I know for a fact that our schools take the children to the mall and grocery store multiple times each school year. I am told it is to help prepare the children for adulthood.

So what's happening? Are our school systems failing in their preparation? Are our other support organizations not achieving their goals of making communities inclusive? Are parents not doing their part to prepare their children? Have the parents of the adults with cognitive disabilities passed away and the adults are now lost - unable to function in the community?

This situation saddens me and frightens me. Will society not include my children as adults? Am I doing enough - to ready my children and to ready my community?

I'm very worried.

Music to My Ears

I wouldn’t call my family the most musical of families. The kids have had to endure my bad singing since they were very little. Otherwise they would have had no lullabies sung to them at all. And forget the ABC song and Itsy Bitsy Spider. So they learned to love my off-key presentations.

Because of my lack of musicality, I did try to encourage my children to explore theirs. When Chip was 5 years old, I signed him up for violin lessons. I had read that an early introduction to music would help a child academically. I still believe that, but I never could tell with Chip because after just a few short months and one recital, he was done with the violin. He then moved on to the guitar, but that lost out to an IPod. At least Chip appreciates music even if he doesn’t want to actively participate in a musical endeavor.

Jessica sings very well and is taking chorus in high school. Corey goes to a performance-based camp for two weeks each summer, so I guess there is still hope for the two of them to commit to a more musical life. Ashley, on the other hand, loves to bang on our piano or play her small accordion while the dog howls along, but the skill is sorely lacking.

Because of my failures to instill music-making in my children, I read with interest both a post on another site for which I write twice a week, 5 Minutes for Special Needs, and a link to a post that my friend, Jane, sent me.

The post at 5MFSN relates what a positive experience music has been in the life of the author’s daughter with autism. As the author writes, “Children with autism have been shown to respond remarkably well to music therapy, making it a great tool to use at home and in the classroom. Research shows that listening to music can help brain function. Music with a strong beat can stimulate your brain to try and keep up with it, helping boost concentration and alertness. By contrast, listening to music with slower tempos can help relax you. These benefits continue even after you stop listening. Music therapy can help with stress management (something I find particularly beneficial), pain management, and recovery from illness or injury.”

Soon after reading that post, Jane sent me a link to an organization in my area that is offering music training for children with special needs. Jane’s son has participated in the past, and loved it. The Da Capo Institute describes themselves as more than a music school. Rather, they consider that they are part of an emergent musical community. Their website contained a list of their guiding principles, designed after the first letters of their name:

• Develop the whole person through opportunities for self-expression, discipline, creativity, and teamwork.


• Achieve excellence through challenging experiences.


• Create, build, and strengthen new and existing communities through the common language of music.


• Appreciate all types of music.


• Provide an opportunity for everyone, where all are valued as individuals.


• Outfit individuals with the power to share music and impact their world

Another statement from their website, I believe, sums up the power of music in anyone’s life, but especially that of a child with special needs:

Music creates a backdrop of self-examination, determination, joy, and acceptance that fosters the positive development of a student with autism. Through music, we can be ourselves; there is no right or wrong! We can each achieve excellence at our own rate, given our own set of circumstances and be affirmed by a community.

Perhaps it’s time for me to re-examine my family’s musical experiences, or lack thereof. How about your family? Does music play an important role for you?

Doing It Right

About a year ago, I posted a blog about Walgreens Drug Stores and their commitment to hiring people with disabilities. In that earlier blog, I wrote, “I do have to wonder if Walgreens would be making such a strong effort were it not for the fact that the son of the senior vice president had autism. Would the company have been so progressive if no one at the top had a life touched by disability? When we move to the next level, when companies do something similar because it is the right thing to do and not just a response to a personal involvement, then real progress will have been made.”.

I attended a training session earlier this week, the subject of which was making the workplace accessible for people with many different kinds of disabilities. During the training session, Walgreens was presented as a company that was ‘doing the right thing.’ Specific examples were cited and interviews with Walgreen’s employees were presented as evidence.

Now I’m convinced that Walgreens’ efforts are sincere and not just a response to the experiences of one senior vice president. After hearing the interviews of employees, I sense a real commitment throughout the entire organization. It’s amazing to witness the cultural change in the organization, and the words I heard were more than just words – they are solid beliefs in the ability of every person to contribute to the whole.

I’m including the original link I shared on the Walgreen’s story. Please take a few moments to view the two video clips included with the story. If today is a day that you need reaffirmation that there is still ‘good’ in this society of ours, you will find it in this story.

Freedom Hopes

This Fourth of July I’ve been thinking a lot about the word ‘freedom’ as it pertains to my children with significant disabilities. It’s not flags and fireworks I’m thinking about, but rather the freedom of choice. I want my children to be able to make choices, to live life their own way. I want them to have the freedom to…

• Choose where they want to live and how they want to live
• Choose the type of job they want
• Make choices about the type of social life they want
• Choose their friends, fall in love, enjoy a sexual relationship, and know the comfort and joy of sharing life with the person of their choice
• Speak their minds, have opinions, and have those opinions respected
• Vote
• And the list could go on and on….

In other words, I want them to have all the rights and freedoms that people without disabilities have.

What does freedom mean for your children?

Forget Forgetting

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

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

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

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

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

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

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

The Eyes

By now I should be immune to the stares when Ashley and I are out in public. Ashley's left eye is very, very small and is a strange, cloudy green color. When I first adopted her, I would get upset when people stared at her. Sometimes people would even ask what was wrong with her, and that would make me even angrier. But, over the last 11 years, I have learned to make the best of those situations by explaining how Ashley was just like everyone else except for a few vision and hearing problems. I tried to view each question as an educational opportunity, a way to help people accept Ashley. I wasn't always successful, but there were times I was. But the staring still bothers me, especially the staring without any questions asked.

Yesterday, all the kids, Amy and I had lunch at a local restaurant. Ashley loves to go out to eat, and since our winter vacation was drawing to a close, we decided to celebrate. As we entered the restaurant, we were ushered to a large booth that was connected to another large booth. There was a short panel between the two booths, but it didn't afford much privacy. From the moment we arrived at the booth, an older woman in the adjoining booth stared unabashedly at Ashley. This older woman was having lunch with an equally-aged friend and two children who appeared to be someone's grandchildren. I could almost read the thought bubble over the women's heads - "I'm so glad my grandchildren aren't like that."

Sometimes I will force the issue and ask the staring person if they have any questions I can answer. That will usually stop the staring or open a positive dialogue. But I decided not to do that this time. I wanted our lunch to be a family affair without the intrusion of others. But I don'tknow if that was the right decision because I was uncomfortable during the entire lunch.

I tried my best to make the lunch a positive experience for my family. The wait staff person helped tremendously by assisting with all the special food requests for Ashley. And, it was so noisy in the restaurant that Ashley's happy noises didn't bother anyone. However, I hardly remember what I ate because I was so obsessed with the staring woman.

Why do I still let people's staring get to me? Shouldn't I have been able to move past all that by now? Does anyone have any strategies for dealing with the staring and comments? I haven't made any New Year's resolutions yet, but if I do, I would like to resolve to handle situations like yesterday's lunch in a more positive way.

The Illusion of Inclusion

Esbee at the Life in Forsyth blog sent me this link, and asked what I thought about it. The story is about parents of children with autism who decided to start a charter autism school because they did not feel the public schools were meeting their childrens' needs, especially as their children entered their teens. Like a lot of parents, in fact probably most parents, of children with disabilities, the school time clock seems to move in double speed. Before we know it, our children are in high school and fears for their futures loom. Even if parents begin fighting school battles early in their child's educational journey, those battles take a long time to resolve. Valuable years can easily be lost - and skills fall further and further behind. But is the answer to pull our children with disabilities out of public school and start a new school which serves just one disability?

The story Esbee sent me was from Minneapolis, but the story is not unique. I believe in communities across the country, parents continue to struggle with a similar decision. Several years ago in my city, parents did the same thing the parents in Minneapolis are trying to do. Faison School was established to serve children with autism, children whose parents believed the public school system had failed them. There is now a waiting list for students to attend Faison, and several of the parents who have children at this school feel the change made a successful difference in their child's life. My concern is that such schools promote segregation, and I'm not sure that segregation is a good thing for our children with disabilities.

My children go to the same shops and stores that everyone else does. They go to the same church. They go to the same YMCA and the same childcare facility. They go on the same vacations and to the same restaurants as the rest of my family. They live in the same house and check books out of the same library. So what is so unique about schools that those same children must be segregrated from their peers? Yes, they need to be educated in different ways sometimes, but those different educational techniques do not, in my opinion, require them to be physcially kept apart from others.

The parents in the article that Esbee sent me spoke of the "illusion of inclusion", and I agree with them that inclusion has failed in most places. School districts say it is because of low funding, but to me it seems low commitment to the concept is the bigger problem. Also, I'm not sure that our university teacher preparation programs do a good enough job of showing that inclusion can work and instructing new teachers how to make it work.

With that said, I do understand why the parents in Minneapolis and other cities across the county are looking outside their public school systems for a better choice for their children. As parents, we always strive to do what is in the best interest of our children - especially looking to their future. And, if a school existed in my area that specialized in children with deafblindness, I probably would look into it as an option for Ashley.

I do believe, however, that as parents we must consider the whole of our childrens' futures, not just their educational needs. While those needs are extremely important, so too is the ability to live and function in a society that is composed of many different people and places. If we want our children to be fully included as adults, we must strive to have them fully included as children. Segregation in any form frightens me...

No Soup But a Talking Bus

Many gains have been made in my community around physical accessibility. Even my neighborhood, probably because it has an elementary school planted in the middle of it, has curb cuts on all the sidewalks. Most government buildings are now physically accessible, and most shopping centers and malls have been built with or modified with accessibility in mind. A few of the older standalone or strip mall stores have missed the mark by not having handicapped parking and curb cuts close to the store, but overall things aren’t too bad – that is, until you go into one of the stores or buildings.

I wanted to do some Christmas shopping with Ashley this past weekend. Although Ashley can walk, if we have to walk long distances, we usually use her wheelchair. Maneuvering the wheelchair at the grocery store was no problem. The aisles were wide, and store clerks were always around to help should we need it. Target wasn’t too bad either. Most of the Target stores in my area have recently been remodeled, and it appears that accessibility was considered for the remodeling. Again, the aisles are wide and usually unobstructed. The restroom facilities were very accessible and clean, and even the Starbucks in the front of the Target store had lots of open space for a wheelchair to travel. But as we left Target and traveled to smaller stores, we discovered major difficulty with Ash’s wheelchair.

I wanted to go into World Market to pick up a soup mix that I can’t find anywhere else. Unfortunately, just trying to get in the front door of the store meant having to move in and around displays of furniture. I had to move one chair out of the way just to get Ashley’s wheelchair into the front door. After stepping through the door, I immediately realized we couldn’t go any farther with the wheelchair. There were no aisles, only displays placed helter skelter, and packed in so tightly that even walkers had a tough time getting through. The World Market clerks saw my dismay, and everyone one of them turned away. Needless to say, I’ll be changing soup mixes.

After World Market, we tried Pier One. Again, although it is one of my favorite stores for unique Christmas gifts, it was arranged very similar to World Market, and we couldn’t get past the front door. Then it was on to Borders Book Store. They had close parking and curb cuts but aisles so narrow that it was impossible to get the wheelchair through them. At that point, I gave up.

It truly is time, in my opinion, for retailers to make necessary accommodations for physical accessibility. Just having parking spaces and curb cuts is not enough. While many stores are worrying about making their holiday sales predictions, they are effectively excluding a large market of buyers. But then again, maybe that is one of the reasons online shopping is flourishing…

One a more positive note – I heard a bus talking today. As I was crossing a downtown street, a bus pulled to the curb and announced where it was headed. Maybe larger cities have had these talking busses for a while, but it’s a first for my city. What an incredible idea for bus riders who are blind.

Mall Strolling and Bowling

I’ve written once before about community-based instruction (CBI) trips that our children with significant disabilities have as part of their educational curriculum. As you can tell from my previous posting, I am not of fan of how the majority of the CBI trips are done.

Today Ashley is going to the Dollar Tree and to McDonalds for lunch. Trust me, Ashley already knows how to shop. She doesn’t need any further instruction in that skill! She also doesn’t eat anything McDonalds has to offer. We’re still working on her feeding program, and unfortunately, that program doesn’t include double cheeseburgers and fries. So what is Ashley going to get out of this particular CBI trip?

Yes, there will be opportunities for practicing language skills – and maybe even some orientation and mobility skills. There certainly won’t be many models for appropriate meal manners. Nothing against McDonalds, but it’s just not a place where most of us learn to use the correct utensil, where to put our napkin when the meal is finished, and how not to gulp our food. At Dollar Tree, she is not going to learn how to find ingredients for a meal she can prepare, nor will she be likely to find any necessary clothing items she may need. She and her classmates will be shopping for classroom decorations. I agree that might be a fun way to spend a couple of hours of her school day, but I believe every hour counts when it comes to actual academic skills for Ashley and her classmates.

One of the largest gaps between education of children with significant disabilities and their regular education peers centers around this issue of community-based instruction, in my opinion. Regular education students may take one field trip a year. Those regular education field trips strongly support the academic curriculum. The students prepare throughout the school year for the trip and normally have worksheets or testing which follow the field trip. Children in special education, particularly those with significant disabilities – those who need the most time on academic pursuits just by virtue of the fact that it usually takes them a little longer to absorb the material – spend hours outside the classroom every week or every other week on trips that do not support their curriculum (or supports it just incidentally).

I researched the Virginia Alternate Assessment Program, and explored the Aligned Standards of Learning, the items on which children with significant disabilities are assessed. I chose several of those ASOLs to see if a community trip could be used to support that curriculum, and of course, I discovered that it easily could. Following are some examples:

ASOL #1
E-RW 12 The student will demonstrate comprehension of information in reference materials.
(SOL 2.9) a) Use a table of contents.
b) Use pictures and charts.
c) Use dictionaries and indices.

The library seems a perfect spot for a community trip to support this ASOL.

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ASOL #2
M-G7 The student will identify, describe, and sort three-dimensional (solid) concrete figures,
(SOL 2.20) including a cube, rectangular solid (prism), square pyramid, sphere, cylinder, and cone,
according to the number and shape of the solid’s faces, edges, and corners.

A museum, specifically a museum with an exhibit of modern art, seems tailor made to support this ASOL

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ASOL #3
S-R 1 The student will investigate and understand that materials can be reused, recycled, and
conserved. Key concepts include
(SOL K.1) a) materials and objects can be used over and over again;
b) everyday materials can be recycled;
c) water and energy conservation at home and in school helps preserve resources for
future use.

How about a trip to a recycling plant in support of this ASOL?

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ASOL #4
S-R 3 The student will investigate and understand that plants produce oxygen and food, are a
source of useful products, and provide benefits in nature. Key concepts include
(SOL 2.8) a) important plant products (fiber, cotton, oil, spices, lumber, rubber, medicines, and
paper);
b) the availability of plant products affects the development of a geographic area;
c) plants provide homes and food for many animals and prevent soil from washing
way.

A trip to a nursery or farm could easily be arranged to support this ASOL.

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ASOL #5
S-IE 3 The student will investigate and understand basic types, changes, and patterns of weather.
Key concepts include
(SOL 2.6) a) temperature, wind, precipitation, drought, flood, and storms;
b) the uses and importance of measuring and recording weather data.

Most of the meteorological staff at local news stations welcome visits from school children.

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ASOL #6
HS-C9 The student will recognize why government is necessary in the classroom, school,
and community by
(SOL 3.10) a) explaining the purpose of rules and laws;
b) explaining that the basic purposes of government are to make laws, carry out
laws, and decide if laws have been broken;
c) explaining that government protects the rights and property of individuals.

Virginia has a beautifully redesigned state capitol and Governor’s mansion that are open for tours daily. In addition, the current Governor of Virginia is very welcoming of people with disabilities. Why not a visit while the General Assembly is in session next Spring?

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I really think it is time for teachers to take a fresh look at how to support their students with significant disabilities, especially in the area of community-based instruction. At least in Virginia now, there is a curriculum for those students, and it is time, in my opinion, for that curriculum to move to the forefront of the educational day for students with significant disabilities.

Madame Secretary

The words are all the right ones. The voice is the voice from the top. Why then do our children have to fight for their every right to an appropriate education?

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PRESS RELEASES
U.S. Secretary of Education Margaret Spellings Delivers Remarks at the 2007 Special Olympics Global Policy Summit in Shanghai

FOR RELEASE:
October 3, 2007 Contact: Samara Yudof or Rebecca Neale
(202) 401-1576


Leading a presidential delegation to the 2007 Special Olympics World Summer Games in Shanghai, China, U.S. Secretary of Education Margaret Spellings today delivered remarks at the Global Policy Summit on the Well-Being of People with Intellectual Disabilities. Following are her prepared remarks:

Thank you, Andrew Williams, for introducing me. It's an honor to be here with you and so many other athletes and supporters of Special Olympics. I'm also honored to be leading a global delegation of so many talented people from the worlds of sports, academia, and business.

I'd like to thank China for hosting this first-ever Global Policy Summit on the Well-Being of Students with Intellectual Disabilities. It's hard to think of a better setting for this event than the Special Olympics.

This morning, I had the honor of meeting the Team USA athletes, including golfer Jason Plante. In addition to competing here today, he is an honor-roll student, and he also plays on his high school golf team, which is among the best in the state. In Jason's opinion, "there is virtually no difference" between learning a sport and learning in school. He's absolutely right. Both take discipline, focus, practice, and high expectations. This summit is a great opportunity for all of us to work together to help more students around the world succeed and thrive as Jason has.

By celebrating the shared joy and mutual respect that sports can foster, Special Olympics have helped people around the world learn to think more in terms of capability than disability.

For example, at the first International Games in 1968, many people thought that swimming pools were dangerous places for people with disabilities. So American Red Cross lifeguards stood shoulder to shoulder around the pool to make sure all of the swimmers were safe. But they never had to jump in. All of the 325 athletes in the pool were perfectly able swimmers.

I think everyone who was there that day probably learned a valuable lesson—don't underestimate what people with disabilities can do.

Unfortunately, when it comes to education, it's taken a long time for people in my country to learn that same lesson. For many years, a lot of well-intended people have done a whole lot of standing by the edge of the pool, worrying whether students with disabilities would sink or swim.

In the late 1960s and early 1970s, when Special Olympics was just getting started, most schools in my country closed their doors to young people like the athletes who are competing here in Shanghai.

More than a million children in the U.S. were excluded from school because of their disabilities. In many states, families faced the stark choice of keeping children at home or sending them to institutions. As a result, many children with intellectual disabilities lived far from their families in conditions that no person should have to endure.

Today, we're still far from perfect. But my country has seen the kind of progress that all of us should strive for and that all of us can achieve. In the last half-century, we in the United States have shifted our national conversation. Instead of asking whether students with disabilities can learn, we are now talking about how to make sure all students achieve. Not in institutions or special facilities, but in their own neighborhood schools, right alongside their peers.

That's a dramatic change in a very short period of time. And we owe much of this progress to people like Eunice Kennedy Shriver, the founder of Special Olympics, who is a longtime champion for people with disabilities.

Just last week, President Bush signed an executive order to continue and expand the responsibility of the President's Committee for People with Intellectual Disabilities. Mrs. Shriver and her brother, President John F. Kennedy, were driving forces in creating this committee, and I'm proud to be a member today. I'm also honored to have both Mrs. Shriver and her son, Special Olympics CEO Tim Shriver, with me on President Bush's delegation to this year's summer games.

In 1962, an exhausted mother called Mrs. Shriver on the phone. She said she didn't know what to do. No summer camp would accept her child because of his disability. Mrs. Shriver told her, "You come here a month from today. I'll start my own camp.

Just like that, she started a free camp right in her own back yard. That camp for 35 kids has grown into this year's largest sporting event in the world: the Special Olympics International Games. As you've heard, nearly 7,500 athletes are competing here in Shanghai. Together, they represent more than 2.4 million people who participate in 15,000 events year-round, worldwide.

As Tim Shriver says, from its very first days, Special Olympics has sent out the message that people with disabilities "deserve the right to participate and compete, on the playing field and off." Tim, you've clearly been listening to your mom's good advice! I'm sure you also learned a thing or two from growing up with that camp in your back yard. I learned the same lessons from working at the Handy Andy grocery store when I was growing up, where several of my co-workers had intellectual disabilities. We worked hard, we got a lot done, and we had a great time together in the process.

So, how can we work to make sure that people with disabilities can participate and compete in school, just like in Special Olympics?

First of all, policymakers and educators like us must take responsibility for educating every single child, instead of picking and choosing. Second, we must think in terms of inclusion—starting with the assumption that students should learn side by side in the same classroom, whether they have disabilities or not. And finally, in addition to including students with disabilities, we must make sure they're learning, too. In other words, it's not OK to tell some kids they can finger paint while everybody else learns how to read.

"In the United States, two landmark laws have helped us put these ideas into action. The first, now known as the Individuals with Disabilities Education Act, or IDEA, was signed into law by President Gerald Ford in 1975. This law guarantees that students with disabilities have access to a free and appropriate public education. It also requires parents and teachers to develop a customized plan to meet the unique needs of every student in special education, which can mean providing help in the form of speech therapy, a classroom aide, or other kinds of assistance."

Research shows that when schools separate students with disabilities from learning alongside their peers, their teachers and even their parents are more likely to see them as "more disabled." But when you put everyone together in the same classroom, both teachers and parents are more likely to see students with disabilities as the capable people that they are. Most importantly, the students themselves are more likely to see themselves for the capable people they are and so are their peers.

Want to know what else happens when you put everybody together? Students with and without disabilities both do better in school.

In sports terminology, you might say that thanks to IDEA, students with disabilities can get in the game. But as any athlete can tell you, access to the field will only get you so far. To reach your full potential, you need to have high expectations for yourself. And you need people around you who are dedicated to helping you achieve the highest possible goals. We've all seen many examples of that here at the Special Olympics.

When it comes to education, we can put high expectations into action but not only ensuring every child has access to the classroom, but by making sure every student learns. That's what my country's most recent education law is all about. It's called No Child Left Behind.

Families of children with disabilities are among the greatest supporters of this law. Why? First off, it requires schools to measure every child's achievement and to publish results for every student group, including students with disabilities. As a result, educators are focusing on these students more than they ever have before. They are also developing better ways to measure student achievement, and better ways to help every child achieve his or her potential.

Most importantly, No Child Left Behind is proving that if we raise our expectations, our children will rise to the challenge. As my mother used to say, nothing sells like success. In other words, once people see one student with a disability who is succeeding in school, they realize that other kids can achieve the same results.

In fact, our latest national report card confirms that No Child Left Behind is making a significant difference for children with disabilities. Results released just last week show that between 2000 and 2007, the percentage of U.S. fourth graders with disabilities who have basic math skills doubled, from 30 to 60 percent. That's 140,000 more kids with fundamental skills! In many cases, students with disabilities are outpacing their peers who do not have disabilities.

Now that we're making strong progress in K-12 schools, the next frontier is college. Especially now that higher education is becoming more and more essential for everyone in our global knowledge economy. That's why I'm pleased to announce that my department will provide 1.5 million dollars to create a Technical Assistance Center to help colleges and universities develop and expand programs for students with intellectual disabilities. By collecting and sharing information about effective coursework, supports and services, and community outreach strategies, the center will help more students enjoy a meaningful and rewarding college education.

Just like Special Olympics, we in education must always seek new adventures and challenges for what we can achieve, and for what our children can achieve. Any athlete here will tell you that is the only way to improve. And every competition here proves just how right they are.

Over the last few decades, Special Olympics has started to transform the way people around the world think about what people with disabilities can do. Together, we can work to do the same in education.

Thank you.

Color Me Happy

My school district is not big on inclusion for children with significant disabilities – not even for the ‘easy’ subjects like art and music. In elementary school, a child’s IEP may reference inclusion in art, music, and lunch, but by the time middle school rolls around, most children with significant disabilities spend their time in segregated classrooms. Their lunch is eaten either in the classroom or at a special table in the lunchroom, and physical education becomes adaptive PE, which means only the kids with significant disabilities participate. Parents can advocate for inclusion during their child’s IEP meetings, but they are often given dozens of reasons for not trying inclusion. At the most recent IEP meeting for Ashley, I insisted that she be allowed to join a regular education art class. I believe that because we had much more immediate issues to address in that IEP meeting, my request was granted so we could move on to the real fight of the day. So yesterday, Ashley went to art class for the first time – ever.

An inclusion attempt usually goes one of two ways – both of them extreme. The attempt can be a success for everyone involved, or it can be a dismal failure for the child who should be included without even a request being made. I believe inclusion cannot be successful without the proper supports in place. Yesterday’s inclusion attempt for Ashley was successful because her wonderful aide made sure the proper supports were in place.

Amy, Ashley’s aide, did everything right yesterday in art class, and as a result things went well. Amy introduced Ashley to the class just as any other child joining a new class after the start of the school year would have been introduced. She told stories about Ashley and the things that Ashley enjoys doing. She emphasized the ways in which Ashley is like the other students in the class, yet she also very matter-of-factly shared Ashley’s differences with the class. She showed the utmost respect for Ashley, the teacher and the other students, and as a result, I believe respect will be the cornerstone for everyone’s interaction for the future in the class. Amy explained how some of the art activities and materials will have to be adapted for Ashley due to her vision impairment, and she encouraged the other students to be comfortable asking questions.

When the class was over, Ashley walked proudly back to her segregated special education classroom, held her artwork out for her teacher to see, and smiled her biggest smile of the day.