The Rush to Judgement - See The Capability Not The Disability
By Kim Rossi
Several months ago, I came across this story on Facebook. It's attributed to a Dave Hingsburger, so I'll include that. I've had every single member of my daughters' team read it. When you have adult children with autism, life is different from the childhood days. As parents, we have to make a conscious shift from thinking of (and treating) our children as.... children. Education, including advanced degrees, focus on early childhood. People who go into adult services learn as they go. And bring their pediatric mindset with them. I've worked hard - sometimes NOT very nicely - to tell day program staff that my daughters are bright, intelligent ADULTS who need appropriate engagement. Anyway, I hope this story speaks to you as much as it did to me, and you can share with your child(ren) and team. It also applies to the elderly. XOX Kim
He was slowly cutting a piece of his pizza. It was clear that whole he would be unable to ear it by picking it up with his hands, he would be able to do so bu cutting it up into pieces and spearing those pieces with his fork, and then taking the food to his mouth.
He was with a staff who had turned her back to him to text a message or otherwise use her cellphone. Her thumbs flew as she did what she did. She then turned to see that he had started his meal and a look of "this is hard to believe" annoyance crossed her face.
"I told you to just wait a moment, she said. I couldn't hear his answer, as he spoke very softly. "Well, never mind," she said, and she took the knife and fork from him against his small protest, and began to cut up his food. "Don't fuss, " she said. "This will make it much easier for you to get at the pizza faster." Then she laughed. He didn't. He looked deflated.
When a piece of pizza went astray, he picked up his napkin to wipe his mouth. She saw this and took it from him. She didn't say anything this time, and neither did he. But he hung onto the napkin and it ripped. She grabbed another one and went for his mouth. She had a firm, "I'm HELPING you" look on her face. Again, he looked defeated.
She hovered over him.
She took what belonged to him.
A kind of theft of his independence and his self-esteem.
We've all heard about helicopter parents who hover over their children. Who do for them what belongs to them. Who try so hard to be there at every moment that initiative and skills are slowly smothered. It doesn't matter how soft the pillow is that takes the breath from one's self. It only matter that it kills.
I have no doubt that the staff was trying her best to do her best. I have no doubt that her intention was to give him wht he needed. The only problem was, it's what SHE THOUGHT he needed.
The goal in service is to "respect the disability while not disrespecting the ability."
She saw his disability, but she did not see his capability. She did not give him room to grown, to use what he had.
He protested her interference with his independence. He still had a spark in him.
I hope she puts the pillow down, and realized it's not her job to snuff out that spark, but to fan it until it bursts into flame.
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This One had us in stiches laughing !
We saw their menu before they peeked ours !
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Posted by: High Tea at Aunty Morag's | October 24, 2023 at 03:27 PM
California is trying to get red food coloring banned.
Being really informed would be better. and let everyone make their own choice.
So far they just muddy the waters and inform with fake information.
Nothing about aluminum's role in causing Parkinson, or Alzheimer, and ALL food colorings has aluminum in them.
Just the other day there was some article that stated that scientists could transfer gut microbes of mice that had Alzheimer to younger mice. The younger mice developed Alzheimer. Is Alzheimer in mice the same as in humans? I am sure there are microbes out there that can cause the immune system to start tangles of plaques just like aluminum. Muddy the waters.
Red food dyes also has chitin from Mexican beetles so many people are allergic to. I don't see if they are willing to ban red food dye how they are going to get us all to eat the bugs?
My experiments in the kitchen ; and yes eventually you do stop low carb and eat some icing and cakes.
Beet powder really turn icing red, with just a little. . Yes, you can taste it somewhat. But is that so bad? I can taste that red food dye too by the way.
Berberine; just one little pill turns everything really, really yellow. Don't get excited though cause it has real, real, real bitter taste that the sugar just can't over come. It was terrible.
Turmeric is great, it turns it a slight yellow,, and I can't taste it unless I add a lot more to turn it more yellow.
Saffron- I did not see much change in the food coloring.
Hawthorn; powder; I hoped would turn stuff red, but it just turned it brown.
I did get an orange on the pumpkin pound cake by using hawthorn, turmeric, and beet powder together.
I wonder carrot powder will do?
Posted by: Benedetta | October 21, 2023 at 10:21 AM
Feeding or not feeding some one struck my nerve. I am sorry, I might have missed the point, well not really, it just was too close to too much trauma over recent years about feeding and not feeding for me let it go.
but more to point: Food as our medicine has been such a focus for so long in this house hold.
However; an adult human being is going to have to take responsibility for choices of what they put in their mouths, and when to put it in their mouths.
I am a walking encyclopedia about diet. My gosh I even read the entire college, nursing book on nutrition that belonged to my daughter. Oh my all that information iI have read as they all roll those eyes. If they don't know what I know by now they never will.
Posted by: Benedetta | October 21, 2023 at 09:46 AM
Being disabled is hard. Being a care giver is hard.
If some one is feeding themselves and slow -- Oh, not a problem here! Let them be.
There is however it al going the other way. That might be more common. The hospital staff hates having to feed their patients. I am double sure some kind of care giver, and nursing home staffers are not going to go much out of thier way to feed someone.
As a matter of fact, I have witnessed nursing home staff just passing by a patient cause they were presently in the bathroom, or therapy. Nothing broke my heart more than to come by a nursing home and find my mother-in-law sitting by her table waiting for her plate that was not coming. Not a place we let her stay for long.
I have been through hospice twice now. I loved the nurse, and the assistant but as far as their literature, and maybe the doctor- I did not like the doctor, I guess. well they are big into not feeding their patients. They say it can make them more clear headed. Well I have witnessed that, it is true. We are into some heavy (bad word here) If they are sick, or have no appetite and you can't get it down them that is one thing. But if you have a feeding tube and it is left to your judgement, and you really can't trust to ask them.
Life is just too hard, how to make the right choices every time. When do you wrap your arms around them and hug them, or it hurts so bad for the care giver that they have to walk away for a little bit till the moment has passed. Maybe never walk away and hug every time.
Posted by: Benedetta | October 20, 2023 at 01:36 PM
A lot to be said for helping the adults along as above Kim totally agree.A very good idea came from Social Work recently, and a very clever lady had the idea of making a social day for the adults who have long left school to reunite them each Wednesday for colouring etc. So every Wednesday now, for the past 3 weeks, he goes to meet his old classmates who are mostly the same as him and like to colour,walk,swim etc Its been a real good one for him seeing his old pals again..instead of his two old farts of parents all the time.
Pharma For Prison
MMR RIP
Posted by: Angus Files | October 19, 2023 at 05:07 PM