This is how Amanda looked when my parents tried to mainstream her in the public school system. She started kindergarten with the other local kids…. Until she had an unfortunate run-in with her teacher.
The following is an excerpt from our book, “The North Side of Down.”
Dad served on the school board and when Amanda was six years old, she was inducted into kindergarten with some fifteen other children her age. Every day, I walked her to school, holding her pudgy hand the entire mile. She always made me late. I was in high school by that time and I always had to go to the principal’s office and ask for a late slip. I didn’t mind. I was a terrible introvert, encumbered by crippling shyness, and I would do anything to avoid the crushing social obligation that was school. Besides, the first hour was gym. The only thing worse than ducking the onslaught of round, red, bouncing missiles in dodge ball, was the humiliation of being picked last for every team, every time.
Amanda and I took our time getting to school, and the morning walk became our own pleasant little ritual. In the afternoon I would rush straight home to watch Grizzly Adams reruns with her while our mother napped. We would sing the theme song and I would help her practice pronouncing her words. “Ceecee,” she called me.
“Nannn-see,” I would say, exaggerating my lip movements.
“Ceecee,” she repeated dutifully.
Amanda’s hair fell in golden ringlets around her pink face. Combined with her navy eyes, this gave her an exceptionally angelic look that belied her bouts of stubbornness. Once she made up her mind to sit down, we couldn’t move her. She would turn to rubber. We would grab her rib cage and try to pick her up, and she would slide limply out of our hands like jelly.
Unfortunately, when it came to Amanda’s tantrums, the kindergarten teacher exhibited even less patience than I did. Amanda came home with bruises on her arms where the teacher had pinched her black and blue. “She pulled my hair,” Amanda said to Dad. There was a volatile school board meeting that evening. He nearly came to blows with the superintendent. After that, Amanda was withdrawn from the mainstream program and was bussed to a Special Education class in Rudyard some forty miles away.
Sadly, I don’t believe this teacher was ever reprimanded, and I think she kept her job. Dealing with people with Down syndrome can take a lot of patience and I have seen my sibs lose their cool with Amanda more than once. I am no exception.
However, we are now all in mid-life, and it’s time to start thinking of the bigger picture. I would welcome any one of my siblings who wanted to re-establish a relationship with me, based on Amanda’s best interest. The gesture would have to be genuine, putting Amanda’s well-being first and foremost.
This would require setting aside personal agenda, dominance issues, misogyny, wealth discrimination, slanderous behavior — just normal interaction on behalf of a sister who loves her family.
I am capable of this. Are you?
I know, fat chance.
Amanda has Down syndrome and is currently being held by her guardian, a sibling who is not allowing us to have contact. On March 27 it has been 8 months since I have spoken with my sister. I am doing a portrait of her every day until I hear from Amanda.
“I’m the guardian and you’re not.” That’s the reason her guardian gave when he refused Amanda’s request to visit me in summer 2016.
A few warning signals of guardianship abuse:
1. The guardian and/or conservator treats you as an outsider instead of a relative, friend, or loved one.
2. The guardian/conservator sees to it that your loved one doesn’t have a phone.
3. When you visit, the guardian “hovers” or even employs someone to hover so you’re not alone with your loved one.
4. You are denied input about your loved one’s care – the doctor won’t talk to you – you are shut out.
5. The guardian/conservator refuses to take your call or answer your questions.
6. Your loved one doesn’t get his/her mail.
7. If your loved one is in a nursing home, you’re only allowed to visit in the dining room or recreation room.
8. You start seeing questionable documents and realize financial accounts are closed or changed and the statements have been diverted to the guardian/conservator.
9. You discover the taxes haven’t been paid — or even filed.
10. The nursing facility tells you when you visit, you “upset” your family member or upset the staff.
11. Items are missing from your loved one’s home.
12. Your loved one appears to be more sluggish, perhaps even dazed.
The days of guardians running the show are coming to an end. There is help available. Click the link below: