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Archive for the ‘Ulrich Family’ Category

St. Nick Meets the Disney Princesses?

St. Nick and the Batman socks

St. Nick and the Batman Socks

St. Nick and the Batman Socks

I shared my story about St. Nick and the Batman socks. I told you I would give the Batman socks to our granddaughter when she went to kindergarten.

Well, as you can see in the picture above, Isabella picked the Batman socks right off our tree, made a face…and a new family tradition began.

As we learn in early childhood and special education, we take our cues from our children, right? Use those “teachable moments.”

New St. Nick Traditions

I don’t know if Tommy and his family will decide to put Isabella’s worn socks on their Christmas tree, but I’ve been trying to figure out how to continue our St. Nick’s tradition of fun plus lessons in diversity, inclusion and building community.

I’m not sure it will work, because two year olds are pretty young to understand sharing, but I’m thinking of giving Isabella two sets of Disney Princess socks for St. Nick’s.

One for her, and one to share.

I don’t want this to be a “charity” or “pity” model, but rather a gift of joy. I have read research which says giving is the best present you can give yourself.

Charity is tricky. I want Isabella to learn that she is giving a gift. It is something she would like, it is pretty and new (or gently worn), she can try to envision what the new little girl will feel like when she gets it.

If all goes well, this can be our new tradition.

Who doesn’t need a new pair of socks?

And even though the Disney Princesses are all young and beautiful, they are from different cultures and had to overcome some diversity, right?

Hopefully, the story of “St. Nick and the Batman Socks” will become a cherished tradition…and will continue to teach about diversity, community building and inclusion. And hopefully, our precious little Isabella will also learn about giving and sharing with others.

Comments:

Want to take bets? How will this little experiement work? Do you have any holiday traditions that promote community building? Do Disney Princesses rock?

Keep Climbing: Onward and Upward

All the best, Mary

Check out these other posts about the Holidays:

Grandma Gets a Thong

What is Charity and Love?

Thanksgiving: A song about autism

Kill the Turkeys: Life lessons for people with disabilities.

Thanksgiving: Inclusion and Interdependence

Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Here is one of our most popular posts. Relax and make an individualized ENJOYMENT plan for your best holiday ever.

Mary

Happy Holidays Everyone

Easy as I.E.P.


Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Want to enjoy the holidays?

Of Course.

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.

Dream Plan:

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?

EVALUATION:

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.

GOALS:

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.)

Goal Two:

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.

RELATED SERVICES:

—“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.

PLACEMENT:

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.

Happy Holidays

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,

Mary

Other posts you might enjoy:

Celebrating St. Nick and two special sons.

Balancing My child’s needs and my needs

Kill the Turkeys! Life lessons for people with disabilities.

Preschool turkey handprint

Isn't this cute, I'll save it forever

Hand-Print Turkeys

The first time Aaron brought home a hand-print turkey he was 3 years old and I thought it was adorable.

HOWEVER

When Aaron was 25 years old and brought home the same hand-print turkey, I was livid.

Kill the Turkey!

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.

Thankful?

Being Thankful

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.

Comments:

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,

Mary

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.

What is Charity and Love?

I’ve fallen, and I can’t get up
Creative Commons License photo credit: djwhelan

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.

Community Fundraisers

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.

Special Fundraisers

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.)

Rights–not Pity

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.

Thoughts?

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?