Posts Tagged ‘special education’
BACK to SCHOOL Article 2
Why Do We Go to School?
A New Year of Learning
This is one of my favorite stories–an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!
It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity.
And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, all the moms were sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.
Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince charming and the younger children Eric, Patrick, Tricia, and my son Tommy were assorted other characters.
The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs.
After a while, the large cardboard box from Allison’s new stove changed from being used for the stage scenery for dwarfs to a cool hideout for cowboys.
Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June.
The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer, including a heated discussion about, “Who would be picked for the cookie passer?”
It was so much fun to be watching the kids and hanging out with other mothers but the beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son.
Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.
But maybe because it was too hot and maybe because I was surrounded by friends, I continued to sip my ice tea and enjoy the normal conversation of my neighbors.
Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?
Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?
Moments that make parenting fun
Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears.
I pointed to the counter and its rows of labeled cups and told him everyone—even grownups–had to do this.
Sobbing he said, “Okay—but I won’t drink it.”
Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”
My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.
We laughed, reminisced about summer and shared the thunderstorm warnings.
Eric’s Mom passed out popsicles.
All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.
Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing.
Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.
Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears? Would they allow us into their community?
There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind.
Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.
As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.
We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.
School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.
Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”
Keep believing, keep dreaming and a Happy School Year to All.
Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.
And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.
What dreams are we still wishing for? What lessons are we still learning?
Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?
Keep climbing–onward and upward.
All the best,
“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planned for you? Not much.” – Jim Rohn
Today is my 64th Birthday. I used to think 64 was old. Now I just think 64 is experienced with a lot of living yet to do.
I wonder what the world will be like when Aaron, Tommy, Ana and even little Isabella turn 64? When I blow out my candles, I’m wishing with all my heart the world will be inclusive. And, we’ll all be part of a caring community who values diversity and individual contributions because together we are stronger.
In Part 1: 1981 Aaron was 6 years old and we outlined a vision of what a happy, successful quality of life would look like for Aaron as an adult. (click here).
In Part 2: 1989, Aaron was 14 years old and we were moving forward. The Plan was updated to take into account the changes in our family, but also the changes in special education, disability services and the world. (click here)
In Part 3: 1998 Aaron is 23 years old and moving out of his parent’s house into his own place with a roommate and 24 hour assistance from caregivers. (Click here)
In Part 4: 2010:
How did we do?
All Dream Plans were built on the concepts of family, community, normalization and inclusion.
Original 1981 Dream Plan for Aaron
Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.
Current 2010 Dream Plan for Aaron
Aaron was educated in a public school with his brother and the neighbors. After we won our lawsuit with Cincinnati Public Schools, the school district was vindictive and since Tom (Aaron and Tom’s father) was a teacher in the district we decided to move to Lakota School District. Aaron rode the bus to school with the neighborhood kids, he received a functional community based program with some excellent teachers and therapists who used best practice. His out-of-school activities evolved around his family and his own friends, interests and talents. Aaron went to the prom with his friend Jenni, he was on the Jr. High Track and Cross Country team where he earned school letters, he rode horses, swam, went to camp and took summer vacations with his family. He went to family reunions, holiday parties and the high school basketball and football games. He was on an inclusive bowling team and made some friends with the Baseball Team players. He was in the Key Club and had a circle of friends. He received extended school year services. He attended graduation (see related article) and had a celebration for all his family and friends. Aaron went to age-appropriate schools and had a job coach to help him in his job at the police station (vacuuming) and amusement park (watering plants) when he left school. When Aaron was 23 he moved into a house with another person (though he was older) and they have lived together for over 12 years. Aaron is still totally dependent but he has self-esteem and confidence in the things he does. He is loved and is a contributor to his family which now includes a niece and sister-in-law as well as his extended family of grandma and cousins. Aaron votes and is a consumer in our society.
Each one of these sentences is filled with years of work and advocacy. There are a whole lot of buts, buts, and more buts that happened when Aaron turned 21 that we didn’t foresee at age 6….
But considering the mountain we climbed to achieve all of the goals—WE DID IT!
1981 Dream Plan for Tommy
Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.
Current 2010 Dream Plan for Tommy
Tommy went to school with his brother and neighbors. He had a functional curriculum that met his needs. He participated in wrestling, theater, cross-country and track, he went to all the school functions. He was in age-appropriate settings and shadowed adults in careers he was interested in. He began a couple career directions and graduated from Morehead State University with a job in the telecommunications field. He is now a Radio Frequency Engineer working on the new G4 systems. His work experience includes setting up the telecommunications for the Super Bowl and NASCAR events. His bride, Ana, is from Brazil and now they have a baby girl who is 18 months old. Tommy sees Aaron and his extended family every week. He is remodeling his house with his friend. He has self-esteem and confidence in the things he does and is a contributor to his family, his extended family and society.
Tommy is on his own. He has his own responsibilities and we help him every way we can. He is interdependent only because he wants to be. Now he makes his own dream plans for himself and his family. Here is a related article about Tommy and Aaron (Click here)
Aaron… well another post we’ll talk about life after age 22 and adult services.
How are Aaron and Tommy’s dream plans different? At age 6 and age 22 and age 35? How did they turn out? Were they much different than the plans your parents made for you? Much different than you make for yourself? What would you say is the lesson?
Keep Climbing: Onward and Upward
All the best,
Here is one of our most popular posts. Relax and make an individualized ENJOYMENT plan for your best holiday ever.
Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan
Want to enjoy the holidays?
Easy as I.E.P.
Don’t laugh. I.E.P.’s were developed because they are good planning tools. Some people are intimidated or challenged by the I.E.P. in Special Education. One way to demystify the I.E.P. process is to use it in our everyday lives. So, stick with me for a minute while we look at how this can work in real life.
Let’s use the Individualized Education Plan to create a holiday planning guide.
The first part is to create your Dream Plan of what you want. Then we plug in the basic parts of the I.E.P.: Evaluation, Annual Goals, Short term objectives, Related Services, Placement, and circle back to the Evaluation for the next I.E.P. for next year.
Dreaming of YOUR perfect holiday
Everyone’s perfect holiday looks different: Grandma’s turkey feast, or make that a roast goose, or Uncle Bob’s ham and sweet potatoes, or a vegetarian, or Kosher, or vegan, or gluten-free …
Everyone has different expectations, traditions, time and money constraints. So forget the Women’s magazines, forget what your Mother-in-law wants, forget what happens on the Food Channel and Martha Stewart show.
We don’t care about “Everybody.”
The beauty of the I.E.P. is it is individualized. It is for You. Not your mother, your children, your boss…YOU! This is YOUR moment, your freedom, just YOU–what do you want?
Action Step 1: Visualize a Dream Holiday
Take a deep breath and picture a smiling yourself surrounded by your favorite people, doing what you really want to do. Ahhhhh.
Are you skiing down a mountain? Are you sitting by the fireplace listening to Bing Crosby? or Lady Antebellum? ….
What would make this a joyous holiday for you–with just the right balance of work and relaxation?
What were the strengths and weaknesses of previous holidays?
Do you want to start any new “You” traditions, new family traditions?
Define your dream plan (see related post)
Feel empowered to do it YOUR WAY. This is your holiday gift to yourself. You deserve it!
Don’t you feel better already? This holiday is going to be the best.
1. Take a sheet of paper and fold it into four squares: Wants, Needs, Likes, and Dislikes.
2. Fill in the boxes based on YOUR Individualized choices.
If you are feeling pressure because others are trying to get you to do something you don’t want to do, be polite but tell them to make their own IEP. Empower yourself! I know this is hard for me and most Moms.
3. Circle your five top priorities and they will become your goals.
For example: Want live tree. Need family to be together for dinner. Loved shopping with Aunt Ruth. Hated the last minute rush….
One Priority goal: Need family to be together for dinner.
Making a decision is the first step. What do YOU want? What would bring YOU joy?
Since there is no standardized tool to measure the
holidays–no HFA (Holiday Fun Assessment) or HQ (Happiness Quotient)–we will create an informal evaluation tool based on ecological assessments.
LONG TERM GOAL I: To have a traditional, homemade turkey dinner with family members on Christmas Day.
Do we want to raise the turkey and grow the corn for the stuffing? Serve the strawberry preserves from your summer garden? Do we want to skip the preparation and order in? Or go out to eat? So many choices?
If we decide to keep this as one of our goals, then we must break down our long-term goal into measurable, observable steps.
Mom decides she wants to cook the Christmas dinner and eat at home.
SHORT TERM OBJECTIVES:
“Short term objectives are merely small steps that enable us to get from where we are now to where we want to be by a certain date.”
A. Mom will finalize the menu by December 10.
B. Mom will make the list and complete the shopping by December 15.
C. Mom will prepare the dinner by December 25.
Each of these short-term objectives can be “task analyzed” and broken down into smaller parts.
We know these are important steps to reaching our goal so they must be completed with 100% accuracy. (75% completion of the meal may leave some family members hungry.)
LONG TERM GOAL II: To have the gifts wrapped and under the tree by December 24.
SHORT TERM OBJECTIVES:
A. Mom will purchase all supplies by December 10.
B. Mom will supervise the gift-wrapping by December 15.
Task Analysis example:
Mom will supervise:
1. Billy will cut the paper.
2. Dad will wrap and tape the gifts.
3. Susie will add the bow.
4. Tommy will place the presents under the tree.
Notice in the Task Analysis, family members with different skill levels can all partially participate.
—“Developmental, corrective and other supportive services to enable you to reach your goals.”
To achieve Goal IC –“Mom will prepare the food by December 25”—Mom will need the following supportive services:
Consultant: Grandma has the expertise to bake and bring perfect pumpkin pies.
Consultant: Aunt Jane will come early to help in the kitchen.
Community Resource: We will purchase the local bakery’s famous dinner rolls.
Now that we have written our IEP we must determine the least restrictive environment for accomplishing our goals.
We could cook and wrap the presents at Aunt Sara’s and bring
everything home, but to meet Mom’s goals on this particular IEP, her own home is the least restrictive environment.
Remember any IEP can be revised or modified at any time. For instance, if Paula Deen wants to invite my family for a holiday dinner, I would change these goals in one butterfat minute.
I hope using the I.E.P. process not only makes it easier to understand, but I hope it can be a tool for you to have a magical holiday season.
Well, what do you think?
1. Do you better understand the IEP process?
2. Would this process be useful for everyone?
3. Does anyone raise turkeys?
Keep Climbing: Onward and Upward
All my best,
Other posts you might enjoy:
The first time Aaron brought home a hand-print turkey he was 3 years old and I thought it was adorable.
When Aaron was 25 years old and brought home the same hand-print turkey, I was livid.
What’s the difference? Same kid, same activity. Why is one turkey a treasure, another only fit for the garbage?
The difference is the educational and philosophical debate between “developmentally age-appropriate” and “chronologically age-appropriate” activities for people with autism and developmental disabilities.
In a previous post, I introduced Dr. Lou Brown’s ecological assessment tool the “Life Space Analysis” (click here) This planning tool for people with disabilities helps identify the when, where, who and what fills a person’s day and gives clues on a person’s quality of life–though this tool can be useful for all of us.
1970s: The Birth of Special Education
Back in the 70s when IDEA was passed and people with disabilities first got the right to go to public school, everyone was trying to figure out how people with disabilities learned? What were the appropriate activities and curriculum? If you want more information about this time period click here: Parallels in Time II.”
Dr. Lou Brown and his colleagues found adolescents and adults across the country playing with infant toys. The “what” in their Life Space Analysis consisted of meaningless activities repeated every day like: coloring, stacking blocks, putting colored rings on tubes, playing with wooden puzzles and generally keeping Fisher Price in business.
The rationale was these students were eternal children. It didn’t make any difference what they did. There were no expectations. They had low IQs and were functioning at a preschool or early childhood developmental level. So teachers used materials and activities matching the student’s developmental levels. For example: If a person had an IQ of 50 and a developmental age of 5.2 (6 years and 2 months), then the person with the disability should do activities that matched what a normal 5.2 month old child would do. It didn’t matter if the “child” was actually 19 or 35, or 70 in chronological years.
2010: Adult Services
I have to admit, I thought the idea of developmental age was long dead. Aaron went to public school and had plans for his future as an adult (click here). He had a functional community based curriculum, he had a transition plan, and he had work experiences. Plus, the research in the whole field of special education and adult services, strongly supports the idea of chronologically age-appropriate activities.
So, again: What’s the Problem?
In my recent round of looking at adult day care for people with disabilities and the elderly, I have been shocked out of my mind to find rooms with Fisher Price toys. I know the toys are indestructible, but come on. They are NOT AGE-Appropriate! If the toy package says ages 3-6, then if you are over 6 years old, it is not age-appropriate.
Schools vs. Adult Day Care
The difference between best practice in the schools and best practice in adult services is the fact that the staff and teachers are licensed. They have training and have studied the research literature about best practices. They have done student teaching and got first hand experiences under mentor teachers.
The people who run and work in the adult day care systems are lovely people who have high school diploma’s (or GEDs) and because the job pays little more than minimum wage, they get no inservice, no vision of what CAN happen. They have the reality of too many people with disabilities, not enough help, and no training. So making preschool turkeys, or paper plate pilgrims makes sense to them. The materials are cheap and the activity matches their developmental ages.
I am thankful Aaron has some place to go during the day. (Some states have nothing and the people sit at home.)
I am thankful these kind people don’t abuse and hurt Aaron.
I am thankful they take him to the bathroom, wipe up his messes, help him eat his lunch, and do their best.
But, they send home a paper plate bunny, toilet paper firecracker, macaroni Santa… And I am not thankful.
I don’t have an answer. I have tried to send in more age-appropriate materials and resources. I have tried to show alternative activities. And they are not thankful.
What do you think? Is my age-appropriate rant just silly? What do you think I should do the next time Aaron brings home a preschool craft? Do you think the types of activities makes a difference to the people with disabilities?
If this makes sense and you want to spread the word, please retweet or link to Facebook. We have a whole lot of people to reach before the Christmas and holiday crafts begin.
I would be thankful.
Keep Climbing: Onward and Upward
All my best,
Brown, L., Branston, M., Hamre Nietupski, S., Pumpian, I., Certo, N. & Gruenewald, L. (1979). A Strategy for Developing Chronological Age Appropriate and Functional Curricular Content For Severely Handicapped Adolescents and Young Adults. Journal of Special Education, 13(1), 81 – 90.