Posts Tagged ‘eternal child’

Helping or hurting?

I am going to update some of the better articles I’ve written for my classes, parent newsletters and magazines. Hope you enjoy them.

Since Aaron was young, the language has evolved. When this story took place they used the words, “mental retardation,” then the words become “developmental disabilities” now it would be “intellectual disabilities.” I’m using the original words as I experienced them.

“Help the mentally retarded! Help the mentally retarded!”

I had just bought some 99 cent grapes, a pound of hamburger, loaf of bread and a couple other items to make dinner for my family when I was met at the door to the grocery by three older men wearing brightly-colored vests and hats with tassels. They were holding little cans and urging shoppers to “Help the mentally retarded!”

I grabbed my groceries and, not even looking up, hurried to my car. As I passed, one man said (in a very superior) voice, “Not all babies are born healthy.”

I felt my face flush and when I paused, he went in for his killer argument, “We aren’t ALL blessed with normal babies, you know!”

Well, that did it. Turning, I said, “I have a child who has the label of autism and I think it is very condescending to have to beg to raise money for quality services.”

Well, the men and their swinging tassels all stopped and circled me. They were aghast. “What do you mean?”

I thought about just grabbing my bags out of the cart and running to my car, but instead looked him right in the eye. “People who are retarded need real opportunities. They can be valuable workers and contribute to society. Retarded people as objects of the mercy of others reinforces the negative stereotypes of the past. In fact, now we call them people with intellectual challenges and don’t even use the word retarded.”

“But honey, last year we raised over $300,000 in our state.” The man straightened his hat and looked like I had sucker-punched him in the gut. “One-third of that money is going toward adding a retarded adult wing onto Children’s Hospital. Also we began a new women’s group home. We stand here in the rain and cold to help. We are volunteers. We don’t get anything out of this.”

At the entrance of the store a crowd was now gathering. I knew he was probably a nice man only trying to do his Christian duty. He was sincere and dedicated, only ignorant of the principles of normalization and inclusion. The staring and frowning faces of the crowd told me they were on his side. I half expected flying can goods to start stoning me. After all, who takes on God’s Knights right in front of Krogers?

I certainly didn’t plan on making a scene. So, giving the man a smile, I just said, “Well, I serve people who have developmental disabilities in other ways” and tried to push my grocery cart around him.

He gently put his hand on my shoulder and assured me God would take care of me and my son. Then, to show no hard feelings, he put three Won’t you give an extra inch? wooden rulers into my bag.

Well, once again I had done it. My husband is always telling me to lighten up and get a new hobby. For Pete’s sake, here I was in a confrontation in front of the grocery store.

Perhaps next time I’ll just drop a quarter in the cup and make the man happy… but… in the meantime, I’ll work “inch by inch” to replace the poor helpless eternal child stereotype with an image of a citizen with real value, dignity and rights.

Share Your Thoughts

How would you handle this? Have you had similar experiences?
The kicker is that Children’s hospital no longer even wants to serve adults with disabilities. Do you think that is a good or bad thing? Also, in 2012, the Knights would be saying, “Help the children with intellectual disabilities,” right?

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

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.