Posts Tagged ‘Handicapped’
Every day we read about good people planning charity events for people with disabilities.
I’m not sure how I feel about this.
Wait! You are wondering how I can be an advocate for people with disabilities and not just jump up and down when two caring people are trying to raise funds for people with disabilities?
Let’s just say, “It’s complicated.”
My first fundraiser was when Tommy was an infant, Aaron was 20 months old and still not sleeping through the night. Two hours a day, I would drive them across town to Stepping Stones Center for the Handicapped. Perfect time for me to volunteer to lead the fundraiser, eh?
What pushed me into action was there were about 30 babies in the Stepping Stones program and no teacher. Sure there were amazing volunteers. But these children, who needed so much help, did not have a qualified teacher. I found that unacceptable. I could sleep in a couple years.
The local shopping center was having their annual charity craft show. At the organizational meeting, I gave my impassioned speech, we were chosen the “designated charity” and then for the next month all the parents, grandparents, friends and neighbors of the “Tiny Tots Program” spent our free time making items for our booth. We raised about $3,000 which was then matched by the organization and an official “teacher” was hired.
After that there were the fundraisers for The Mother’s of Special Children and the Arc (formerly known as the Association for Retarded Children), and TASH (formerly known as The Association for People with Severe Handicaps) and on and on.
I met other mothers (mostly) and we had many good times, but I started asking why we had to have charity drives to fund important services other children in the community took for granted.
Regular Inclusive Fundraisers
After our court case and Aaron was finally allowed to go to public school, I got involved in the regular school PTO fundraisers. There were spaghetti dinners, White Elephant sales, Dances, Raffles, Magic Shows, Motorcycle Rides, Bake Sales, Races for… and saving boxtops, cans… It goes on and on.
I learned about inclusion (click here) and realized we didn’t need a “special track team” we only needed an extra support person to help Aaron to participate in the track team events.
“Disability World” Fundraisers
This led to more committees, grant writing, working for levy’s for the County Board of Mental Retardation and Developmental Disabilities as well as the regular local school district.
Other parents got to have jobs and earn money to help their families. I got to be the only non-paid person at numerous committee meetings.
Now, we did some great things that wouldn’t have happened without the volunteer parents. We began an after-school club and a summer school program so our children would have something to do and not lose all the skills they gained during the school year. We started four non-profit groups and incorporated. Yes, indeedy, sleep would have to wait.
But it never ends.
It is my feeling many of these organizations spend their energy insuring their own jobs and pay and giving lip service to the support of people they are supposed to be serving.
Autism Speaks, March of Dimes… are currently under fire because one of their main reasons for existence is to raise money to wipe out people with autism and developmental disabilities. They want a cure and spend much of their funds on sending Medical Doctors to conferences and conducting research.
But what about the people who are here now? These professionals, who make good salaries, have their way paid to conferences. Parents, who volunteer, not only pay our own way–we are supposed to donate to send the doctors? Plus, their executive directors make big big bucks. When I learned what some of the executives of these charities were making–that was it.
When it is all about charity, then it is all about the person who is giving the money. When it is about a person’s life and rights, it is about the person with the disabilities.
There are some large organizations who understand this, but most don’t. Here’s a post on my experience outside my grocery store (click here).
Everyone wants to help babies and young children
I know Aaron’s life was more interesting because of my leadership and volunteer work. But now he is an adult, and there are even fewer opportunities. Babies are cute and helpless and of course we want to help. But the majority of our lives we are adults. That’s 20 years as a young person and maybe 50-60 years as an adult.
So, I don’t do much volunteering for charitable organizations any more.
I spend every moment of my life working directly with the people with disabilities or the caregivers on the front lines. The ones who make little more than minimum wage. The people who take Aaron to the bathroom and clean up his messes. The people who celebrate Aaron’s diversity and think he’s a pretty neat guy. There is no tax write-off, no non-profits. Just people who care and need resources.
Segregated Charity–charity gone wrong
I don’t believe in onetime events like, “People with Disabilities Come to Church Sunday” where the church rents a ramp for the weekend (I couldn’t make this up). I don’t believe in Special Olympic Golf Fundraisers, when they won’t let Aaron even ride in the golf cart (“Oh, honey we just raise money for these poor children, we don’t actually want them on the course.”–couldn’t make that up either.) I don’t want Girl Scouts showing up at my door saying they want to play with my child because it is Lent and they have to do penance (some day I’ll share the details on that one.)
As Joe Shapiro wrote in his classic book, “NO PITY.” People with disabilities don’t want to be the object of other’s charity. People with disabilities have needs, but they are citizens with rights. They don’t want the handicapped parking place because you are having pity on them. They want the handicapped parking place because as a citizen and consumer, they need the extra wide space so they can get out of their car. And, as an American, I’m proud our country recognizes that right to equal access.
If we really want to help people with disabilities–don’t give them your dimes. Instead make room in your lives and give your love..and your friendship. That is the best gift and, I believe, closer to the Biblical definition of “charity.”
Like I said, this is complicated.
What are your experiences with charity models? With helping people with disabilities? What does it feel like when you are the giver? When you are the receiver? When do you feel pity? Charitable?
Don’t these chocolate covered strawberries look delicious?
For the Holidays, or any day, what about making chocolate covered treats or gifts for the people you love?
Chocolate Covered Fun for ALL AGES and Abilities
Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.
Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course if you want to go gourmet, hey, yum.
“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)
Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.
For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.
Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.
When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.
There are lots of things Aaron can do to partically participate in every activity.
When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.
This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.
If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile 🙂
Be Creative: Lots of Ideas
Dip White or Dark Chocolate Ideas:
Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods of any size
Rice Krispie Treats
How to Make Chocolate Covered Pretzels:
Things You Might Need:
Microwave-safe glass or measuring cups
Bags white and dark chips (12 oz.)
Bag of pretzel rods (12 oz.) or other food
Small candies or sprinkles
You Tube Video Demonstration
Task Analysis or Recipe
Chocolate-Covered Pretzels with Sprinkles
Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.
Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)
Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved
Gifts and Favors, Holiday Variations
President’s Day, Halloween, Easter, 4th of July, Christmas Variations
Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?
Have you any ideas on this or other projects?
Keep Climbing: Onward and Upward
All my best,
Other Related Articles:
Helen Otten, my mom, died April 3 at the age of almost 93. I’m posting this in her memory. I’m also reminded of the importance of family.
The twelfth day of Christmas is Jan. 6th–Little Christmas, The Feast of the Magi.
Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.
Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)
I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.
My mother is 89.
Recently she’s had hip replacement surgery and has trouble shopping for herself.
Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT
Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT
She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.
I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT
She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8’s and 9’s and 10’s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT
She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT
The next three stores didn’t have black or whole foot slippers. But they did have navy.
You know where this is going, right?
Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.
So, it makes you wonder.
Was the gift really about slippers at all?
Grandma and the Thong
The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT
She also gave one to Grandma.
The gift became an urban legend in our family. It brought down the house.
Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.
Which again makes me wonder about gifts.
Aaron’s Christmas Gift and Charity
This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.
This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.
There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.
At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.
Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.
Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT
The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT
The slippers were size 11.
Aaron wears a size 9.
Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.
And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?
Is “Just getting something to open” the point? Even if they can’t use it?
What is Charity?
If you plan a charitable event and are giving gifts:
Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.
Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.
Don’t give them things you couldn’t sell or are broken.
Don’t make your interaction a one-time-event.
Do have a party with chairs and refreshments for everyone.
Do get to know people as individuals
Do think about what YOU would want to get
Do think about normalization, age-appropriate entertainment and gifts.
Do think about transportation and staff and family members
Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.
Keep Climbing: Onward and Upward
All my best,
Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????
Thanksgiving Week: Day 1
I love the story of Thanksgiving. It is a story of inclusion (click here) and interdependence.
A group of pioneer families risk it all and travel to a strange land. They gratefully accept the help of the Native Americans who look different, speak a different language, have different cultural and religious beliefs. At first they are fearful of the differences, eventually they peacefully trade, share and learn from each other. The Native Americans welcome them into this new people and environment. But the Native Americans save the pilgrims from starvation (yea, corn, pumpkins, turkeys…) and disease (yea, the cranberry). Both groups still value their own cultural beliefs and traditions, but as neighbors they become an interdependent community which shares the hard work and sacrifice. Then, after a successful harvest, they do what every culture since the beginning of time does, they are thankful and celebrate.
As an early childhood teacher and special education professional I looked for ways to teach about cooperation, collaboration, and community. I looked for ways to include my students with special needs into the “normalized” (click here) holiday school programs and activities. I looked for ways to differentiate the curriculum so even the students with the most severe disabilities could partially participate.
Inclusion success stories for ALL children:
White Gifts for the Food Bank:
The entire school sponsored a “white gift” program for Thanksgiving. Each child brought in a non-perishable food item for the local food bank. The children decorated and wrapped the gifts in white tissue paper and put them into donated laundry baskets to distribute.
Thanksgiving Day Program:
I paraphrased and adapted the songs and dances so everyone could participate. We used the songs below in both large whole school programs and our individual class programs.
Bringing in the Community:
These were always crowd favorites. We would sing the songs, have someone dress up like a turkey and strut around. (One time it was the principal, one time a favorite music/gym teacher, sometimes a parent or a student from the high school drama club.) The turkey also lead the rhythm band for a couple songs. When we had a music teacher, she taught the rhythm band, after the cutbacks the teacher did it.
Each student made a picture for their families. If they were able, they wrote and read a sentence of what they were thankful for to the group. If the student couldn’t read, write or talk, they had a picture or the actual object they were thankful for (A picture of their family or a grandparent, a flower…) They might use a tape recorder, or ask their friends to say it with them.
For the grand finale, the class would line-dance to the traditional music of Turkey in the Straw and Old Joe Clark (the gym teacher helped teach the dances).
Finally, we ask the parents, brothers – sisters to join in for the Turkey in the Straw square and Old Joe Clark square dance classics.
The students created and colored/painted the programs, created unique tickets if we had limited seating, and they collected the tickets at the door. The words to all the songs were in the program so the children and parents could read and sing them together at home.
The day before the program we had everyone bring in a piece of fruit for each person who was coming, the class made fruit salad, corn bread and cookies for the refreshments. Extra parents volunteered the day we made the fruit salad, corn bread and cookies. We had about 6 different kinds of fruit and vegetable peelers. We set up “stations” with a parent as supervisor of each station. Everyone participated, or partially participated according to their abilities.
Disabilities were not the issue, it was how can this person participate.
The students decorated the room and bulletin boards. We made several large murals of fruit cornacopeia, or a farm or grocery fruit and vegetable stand, or garden….
During our group story time, we used poster board to plan what we would do, and who would be responsible. We divided up the chores. The children chose how they wanted to do it. We usually combined the farm,Thanksgiving, food and/or autumn thematic units so the bulletin boards and room were decorated at least a week ahead of time. All learning activities focused on the thematic unit, were tied to standardized goals and IEP goals.
Children Giving the Tour:
Before the program, the students gave their parents and guests a tour of the classroom explaining what we were doing, what they were learning.
After the program, the parents got to take all their child’s work home to show grandma and grandpa or other friends on Thanksgiving day.
On Thanksgiving Day
Many families told us the whole family sang the songs and some used the “On Thanksgiving” song as part of the grace at Thanksgiving dinner. It really was a nice way of bringing the families into our program and letting the children be the experts and teach the songs, games to their families.
Ole Mr. Turkey
Who’s that struttin’ round lookin’ mighty perky?
Looks like it might be old Mister Turkey.
Strut Mr. Turkey that’s a fancy way to walk
Strut Mr. Turkey that’s a fancy way to walk.
Gobble, Gobble, Gobble
I’m a mighty fine turkey and I sing a fine song,
GOBBLE GOBBLE GOBBLE, GOBBLE, GOBBLE, GOBBLE
I strut around the barnyard all the day long and my head goes
BOBBLE BOBBLE BOBBLE.
TUNE: FRIERE JACQUES – Round
(In our school program, I took a song the children knew, rewrote the words, and chose one child to be the “conductor” for each part of the round. Another time in a whole school program, three different classes each sang a different part of the round.)
On Thanksgiving, on Thanksgiving
We are glad, we are glad.
For all the special blessings, all the special blessings
That we have, that we have.
(repeat 3 times)
TUNE: Turkey in the Straw
(I paraphrased the words so we could act it out.)
Oh, a turkey is a bird, just as proud as can be.
He struts around with his tail in the breeze.
He makes gobble noises at everyone he sees.
But thanksgiving is coming, and that’s not make-believe!
RUN TURKEY, HIDE TURKEY
Turkey in the straw, turkey in the hay,
Where oh where will the turkey be
When the table is set Thanksgiving Day? (rub tummy)
(Transition verse- putting on coats, getting in line….)
In winter when it’s cold and snows
I have to wear a lot of clothes.
If only I were like a bear
I wouldn’t have all this to wear.
Whatever weather she is in,
She grows her coat right on her skin.
What are some of your memories? How did the teacher include ALL students, including the students with disabilities in their activities? What were some of the lessons of that first Thanksgiving that apply to building community and celebrating diversity?
Keep Climbing: Onward and Upward
All my best,