Aaron, my son with the labels of autism and developmental disabilities, had a doctor’s appointment so I brought him late to his adult day program.
A Visit to the Jungle—Jungle Jim’s that is.
Thanks to cell phones, I connected with his group on their community outing at Jungle Jim’s in Hamilton, Ohio This is a mega grocery store with a jungle theme: animated monkeys, giraffes, and other animals spread throughout the store. It’s a pretty neat place and features foods from around the world.
Like most people, Aaron and I got a grocery cart when we entered the store.
Adults with Disabilities in Large Groups
We found the group–immediately.
Coming down the meat aisle, two women in their 30s were holding hands walking in front of three people in wheelchairs. Both woman had Down syndrome and were about 5’6” and weighed about 200 pounds. Another man (about 50) was holding hands with a female staff person. The second staff person was pushing one of the people in a wheelchair. They did not have any shopping carts.
Gosh, I wonder how we found them so easily.
When one of the staff people saw Aaron pushing a grocery cart, she said she was surprised he had those skills and could tolerate the noise and confusion of a grocery. I assured her Aaron was fine and in fact, since he was in second grade, grocery shopping was part of his functional curriculum (click here).
Plus, when he lived at home, he went with me to the store 4-5 times a week. I expected Aaron to do well in the grocery and even expected him to participate in the shopping and make choices for the items he liked. Aaron actually met some of his former classmates at our community store (click here).
The staff person didn’t really pay attention to what I was saying. Since she was the professional in charge, and I am clearly just the mother, she politely said I could leave and she would watch Aaron (along with the other six people).
To her surprise, I smiled at her and said there was NO WAY I was going to leave. (What I actually said was a lot nicer–what I was thinking was actually not a lot nicer.)
A group of preschoolers was also visiting Jungle Jim’s that day. The teacher had prearranged an instructional tour. A store employee, dressed like a jungle safari guide, was explaining how cheese comes in huge round blocks from many different countries. Even with the guide in her camouflage pants and a netted hard hat, and the teacher saying “Who can tell me what shape that is?” all the kids were gawking at our group.
Our two aides, of course, just kept herding the group of adults with disabilities down the aisle. They talked to each other about the general prejudice of our society toward people who are different, and young children who just didn’t know any better. After all, they are Christian women who care about the “least of God’s children” and they are the enlightened ones earning their crown in Heaven.
Purpose of the Grocery Trip
Unlike the preschoolers who were making the trip to the grocery an educational experience, I asked one of the aides what our group was buying at the grocery. She shrugged her shoulders and said, “Oh, it is the end of the month, we are out of funds–so we are just looking around, enjoying the air conditioning.”
Shock in Aisle 4
I was with Aaron and our group for about 15 minutes and I was on the edge of hysteria. I literally had to do calming breaths. I felt like I was in a time warp from the ‘80s. I kept thinking of the years Aaron’s occupational therapist, speech/language pathologist, physical therapist, teachers, and instructional assistants taught Aaron to plan his purchases, buy items, make choices, use his picture communication book, use his wallet, push the cart without hitting anyone, maneuver around kiosks and displays set up in the middle of an aisle…. Aaron even worked at a grocery store, with his job coach, stocking shelves as part of his work transition plan.
I also thought about everything I knew about normalization–to go to the store in small groups (no more than two) and blend into the population. To have the skills and behaviors of a consumer so you were a valued customer and respected member of the community.
I remembered Alison Ford’s presentation about, “There is so much more at the grocery store” and the Syracuse Functional Curriculum. And Marc Gold, Lou Brown, and Sharon Freagon’s slides used the grocery store for a teaching environment because it was a community environment that would be used for a lifetime–multiple trials over multiple years.
Inclusion and the Jungle
One of the lessons of nature is that for animals to survive, they need to blend in, or be camouflaged into the environment. That is why polar bears are white, and alligators look like logs floating in the river. It is why the female cardinal, who carries the young, is dull brown and her male partner is bright red to attract the attention of predators.
The history of man also tells us about the power of in and out-groups. We segregate criminals in orange jumpsuits so they stand out and everyone knows there is danger. The Nazis forced the Jews to wear Stars of David armbands to clearly stigmatize and identify their enemies. Police uniforms identify people who we can ask for help.
The history of people with disabilities also includes the stigma and isolation of people as being so different, so dangerous that parents would point to strangers and urge their children away.
I talk about some of these stigmas in my story about America the Beautiful (click here).
Because Aaron does not communicate like other people. Because Aaron has some bizarre behaviors. Because it takes people a while to get to know him. Because of his labels… we make sure Aaron is well-groomed, wears stylish clothes, and can survive by blending into existing groups.
We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, and a loving uncle.
Like the jungle, “the survival of the fittest” belongs to those who can camouflage themselves into the natural world, or in disability-speak, be included in the community.
Obviously, none of these aides had read about this, or anything else. In fact, these loving caring aides who work for minimum wage do the job as a labor of love. They are not trying to stigmatize Aaron and his group–they just don’t know any better. They are not trying to alienate and waste the people’s time and let their skills deteriorate—they really, really, really just haven’t been trained.
So, of course, Tiger Mom took over.
That day I decided to stay and try to teach some skills. I have trained parents and teachers, I have a lifetime with Aaron so Tiger Mom went into action.
I figured the normalization lesson would have to wait because there was no way our group was ever going to blend in. (How could two aides handle seven people with significant disabilities, three who used wheelchairs?) We also did not have enough staff to divide up into small groups and spread out in the store.
Let’s Buy Something?
So I suggested, “Let’s buy something, and I will treat you. What could we make for a snack? Or what do you need?” (MAKING CHOICES—giving dignity to the people.)
One person suggested we make smoothies. Great, smoothies! (That is AGE-APPROPRIATE. People of all ages like smoothies. It was hot outside so it was appropriate for the time of year.) Smoothies it is!
I ask the group what ingredients we needed to make the smoothies. Each of the seven people had a particular item to find on the shelf and put in the cart Aaron was pushing (FUNCTIONAL SKILL: IF THEY DIDN’T GET THE ITEM, SOMEONE ELSE WOULD HAVE HAD TO GET IT.)
Aaron pushing the cart was a balancing and behavioral technique to keep Aaron on task and keep him from running off down the aisle. It also put Aaron in a valued position because he was needed for each item. It also required each of the people to (SOCIALLY INTERACT) with Aaron.
Teaching “Learned Helplessness”
The people with disabilities all got into it. But the kind, but totally clueless aide was doing everything for them–even putting the item in the cart for them. And, obnoxious me, I would return the item to the person, put it in their hands, and ask them to put the item in the cart. (LEARNED HELPLESSNESS.) Geesh!
Since Aaron was pushing the cart, he was like the leader of the safari. He did great, but I swear, the others had either lost their skills or hadn’t had much opportunity to learn about PARTIAL PARTICIPATION and practice being an active participant in the shopping environment.
We had a hard time finding the frozen juices, but guess what? Near the ceiling, there was a big sign that said “JUICE” – which I, of course, pointed out so the group could read CONTEXT CLUES.
The aides–actually, I don’t know what the aides were thinking—they looked at me like I was nuts to point out a sign to these people who they knew couldn’t read.
The safari ends with checkout and the group being loaded into the vans.
I let Aaron leave with the group. I said goodbye and I hoped they enjoyed their smoothies, and then… I sat in my car and cried for 20 minutes and was depressed for the next week.
All of our fight for inclusion in a regular school, fight for a functional community-based curriculum, all the research and knowledge we have acquired for the last 30 years in special education–and here is Aaron in the middle of what felt like a freak show.
Even if I tried to feel some redemption about the functional shopping experience with the outcome of them making a smoothie, and even if I tried to ignore my overstepping boundaries and staying, “Just a mother.” The low expectations (click here) and lack of skills felt hopeless. All the skills that Aaron had, and now was losing.
I haven’t resolved this. The aides were good people doing a tough job. Imagine lugging 7 adults in and out of vans, and not having the funds to buy anything on a trip to the grocery?…. but my heart just breaks for Aaron. His dream plan, years and years of work–and it is like it never happened.
Children have value and hope. The adult world has no mandates, no IEPs or due process. Where are the people who certify these programs? How can these good aides have so little support and resources?
Thanks for listening, I know you don’t have the answers either. I stopped in Aaron’s day program again yesterday and the group was making ladybugs on green construction paper leaves from a preschool activity book. Geesh!
Deep breathe, in-out-in-out.
Lady bugs are supposed to be good luck, right?
I feel like I should end with a joke or something to lighten this up, but I feel betrayed by the paid “Professionals” in our county who know better. Where are they?
Am I really supposed to just “feel grateful” that Ohio has any programs at all, and Aaron’s developmental twins in Tennessee and South Carolina are just sitting at home doing nothing?
Of course, last year was worse and at least now, Aaron is out of the crowded back room with no windows in the sheltered workshop.
He is surrounded by kind people who care about him. It could be worse. But wow, it certainly could be better.
Keep Climbing: Onward and Upward
All my best,
Please chime in:
What would you have done? Would you just watch it? Would you just leave Aaron and go? Would you go back to the grocery for a bottle of scotch? Any suggestions? In this jungle, what would a “normal” shopping trip look like for people with severe disabilities? What message do you think the preschoolers got? What would be better?
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I know I’m several years late on this, but I had to chime in anyways. I work at an adult day program and we go out into the community a lot. My co-workers and I are always trying to fight the stigma and make these outings have a purpose. If I had been Aaron’s staff, we’d have been there to buy ingredients for something we’d cook later (and that they’d helped to choose), and you’d have seen one supported individual with a list letting the group know what we needed, one keeping track of the total cost, one comparing brands to see which one is the better buy, and me moving items closer to someone in a wheelchair so that he could be the one to put them in the cart. Why more programs don’t see this as a matter of course is beyond me.
You’re right Alexandra, adult day programs need more training on how to involve people with real-life tasks. These are NOT field trips like they did in Kindergarten. These trips to the community are part of living everyday adult lives. Thanks for your comment.
I think it is awesome that Aaron and his friends were able to go on a trip to Jungle Jims. It is one of my favorite stores to go to! Unfortunately it is far away from my house so I can go as much as I would like. Aaron probably felt so excited that he could go to a grocery store and shop around without any questions to his disabilities. It is a great place to go to learn from such a big shopping environment with many people and a lot of different activities. I think it was an awesome idea to do that an they will remember going there for a long time.
It is a fun place and no one notices Aaron’s verbalizations because the place is so loud. It might not work for others who have sound or audio sensitivities, but it’s great for Aaron.
This article was very eye opening. It is awesome that Aaron and his friends were able to go to Jungle Jims, a fun trip for most people, (the bathrooms are my favorite) and do an average task for most people. I bet he felt like the leader going there since he had worked at a grocery store and knew what he was doing. I was very shocked however when one of the aids, whom I assume has been working for a good amount of time with the, was doing all of the work for them. Wasn’t the idea of going there letting them do their own thing? I probably would have done the same thing you did, put the item back and let them get it for themselves.
Good for you Lexi–you’re going to be a great advocate. Many people think it’s the big things–the people who get the big awards. But, it’s the little everyday changes that make the most difference.
Wow, this is an incredible story that shows how important advocates can be in society and how important inclusion is. You acted as a great advocate, mother, and friend to Aaron and the other members of his day program. One very influential quote from the blog is as follows, “We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, a loving uncle”. This quote explains the importance of having a supportive family, support system, and great advocates. It is amazing how you were able to give Aaron and the other members of his day program the dignity they deserved. They were able to make their own choices, problem solve, and practice working together in a group. I also thought it was very interesting realizing that it is impossible to be inclusive in society in a big group like Aaron’s group was. I think it would be fair and more inclusive to allow more aids to allow Aaron and the other members more freedom and dignity. You did a great thing by helping to advocate in this situation while staying clam and focused on the situation.
Thanks for your kind words Anne. I wish I could be with Aaron more often. When Aaron was in high school, they did grocery shopping the right way. Just a couple students went at a time. They worked it out. They also showed me it could work. It was a team effort. The speech, OT and PT were involved and that gave them the extra support they needed so they could split up. I will always thank Mr. Valdini and the staff at Lakota for giving Aaron an opportunity. 🙂
It’s crazy to me that the ladies shopping with the group basically did everything for these adults. In my opinion, the ladies should let the adults at least try to do tasks, like grocery shopping, without having everything done for them. I liked that you turned the trip into a group activity where each adult had a task, and that you let the adults pick out their item by themselves instead of doing it for them. I feel like if you wouldn’t have stepped in like that that the adults wouldn’t have had any interaction in the trip to the grocery store, which I feel like should be the main reason of them going to the grocery in the first place — to mainstream these adults into every day life. As for the group of preschoolers that just stared at the group of adults at first — I feel like because they are that young that they really don’t know any better. However, I feel like parents aren’t really doing enough today to educate their children about disabilities and that just because a person may look different from us doesn’t mean they should be made a spectacle of or treated differently.
HI Megan, it was crazy. The really sad part is that the staff really didn’t know any better. But I’m sure Aaron and the others in the group did. They knew the reason you go to a store is to buy something. And they knew, in such a large group, they looked like a spectacle.
I don’t blame the young children at all. I would have stared too. It was not a normal scene at the grocery. It was out of the ordinary and not normal.
The hope is that there will be professionals like yourself who will not let this happen in the future. That is the good news.
I really enjoyed how you made it an activity where everyone picked out what they would need for smoothies and got the ingredients and made them, I love working with children and I always make activities like that for them. It’s always a more fun and enjoyable learning experience when you’re not telling other people what to do. I would have been so mad is someone had talked about or to my child like that. Like it was so unheard of that he could push a grocery cart and that he use to go with you to the grocery all the time. And the way she ignored you like you didn’t know anything about the situation, you’re his mother! Of course you know! I can’t even begin to tell you how involved my mother got, people would think she was my lawyer or something. Just because you don’t treat Aaron and his friends like they can’t do anything the way she does. But that’s unfair I suppose, it is very difficult to take so many adults on an outing while making it interactive and fun, and they didn’t have the funds to buy anything while there like you said. But still it’s hard, especially when it’s your kid. I laughed when she said you could go and you said there was “NO WAY” you were going to leave. And I agree most Christians do seem to act that way like it’s their ticket to heaven. Also it’s cool that Aaron stocks shelves at a grocery store, this one time my brother and I were grocery shopping a few years ago and the cashier was a man with an exceptionality, though I don’t know what, but he was very kind and asking us and people before us about more than our days, but about our families and our jobs or education. I remember my brother being so surprised he could “work a cash register” and I said something along the lines of “yeah I could never do that, I don’t understand all the buttons and math and everything you have to do, it’s too much” and he said “no I mean because there’s like, something mentally wrong with him” and I remember stopping and kind of looking at him and saying “why does that matter, it’s just a skill you have to learn, he probably more capable than I am at using a cash register.” I was reminded of that when the women was surprised he could push a cart. I think in the same situation I would have done the same thing as you and stayed and done like I said before what I do with children, I would defiantly not have left.
Helen, you’re terrific and You sound like you have an amazing family–even though your brother probably wasn’t too happy with you that day in the grocery. Love how you related the story to your real life. Share some of your experiences in class–this is wonderful.
It’s crazy to hear that the aides’ mindset, teaching,and training are so ignorant of the individuals and their goals and futures. It takes a lot for someone to step up and try to teach what they believe is right in the midst of the wrong. In my junior year of high school, we did a unit on mental disabilities, and we examined the past and present and the rights and freedoms that one should have. While in the past mental institutions with bad living conditions and lobotomies were the fate of those with mental disabilities, the present holds normalization and assimilation. Somehow we have also gotten to babying them and treating them differently rather than guiding them to our own normal lives. Maybe one day, we will not have to teach others how to treat those with disabilities, but society will automatically rule for their normalization.
Hannah, that is our hope and our dream. Now we know so much more than even 20 years ago. It’s up to each of us to take the possibilities to the next step–and as professionals to the next generation.
I think it is awesome how you handled the situation. If it weren’t for you stepping in they would not have been able to have the learning experience that they had. I feel that a big part of inclusion is giving individuals with disabilities the skills to handle themselves and be as independent as possible in everyday situations.
You’re right Jaden, it’s all about attitude and then giving them the skills to handle themselves and be independent. School has to lead to better skills AFTER graduation.
I think it was incredible how you responded to the situation here! I’m always amazed by people who are so passionate that they are willing to put themselves out there and try to make a difference, and it it not uncommon that these individuals turn out to be caring mothers. You seem like a great mom who not only wants the best for her child, but for others who are in a similar situation.
I can certainly see how this would be a frustrating situation, and if I had been in your place I probably would have lashed out at the aides. Still, I think you did everything you could.
This just goes to show that even “trained professionals” sometimes need a shift in perspective. I hope you opened their eyes, at least a little.
You kind words touched me Rachel. You just do the best you can do.
I’m not sure the aides were so excited at my intervention–I think they just roll their eyes whenever they see me coming.
I do try and send in some supplies every month and give them ideas for projects. I’m sure I’m annoying. But hopefully they will be like you and give me the benefit of the doubt and just chalk it up to being a caring mom.
This reminds me of the activity we did in class last week, where we looked at the questions “where are we?” “how did we get here?” and “where are we going?”
“Where are we?” This shows that, while we have definitely made progress compared to centuries ago when people with disabilities were severely mistreated, we are definitely not where we should to be.
The “how did we get here?” question is shown in this post, through the dedication and understanding of determined parents, or “mother tigers.”
“Where are we going?” is a question that I think is harder to answer, for we cannot simply hope and dream of a destination of equality and inclusion, but we have to have a plan. This plan must embrace what works and change what doesn’t. We need to be strong and brave enough to keep moving forward, even if it is into uncharted territory.
Andrea, it gives me hope that you see the awfulness of this scene.
I try not to get stuck in the past, in the journey because it was so hard and it still continues. So, we really need to just focus on the “Where are we going?”
I reread this article and it all came back like it was a minute ago.
You and your classmates will be Aaron’s future and the thousand other “Aarons” who are just now in those preschool classes.
That gives me hope and a brighter future–for everyone.
This is an incredibly touching, yet heart-breaking story all at once. The sincereness of a mother to help her child and a group of his peers demonstrates a dedication and passion to teaching people how to live, learn, and function correctly. I would not have watched either. I would have intervened or taken Aaron home with great frustration. (If I had the confidence I would have taken over as ‘tiger mom’ did, but I’m not so sure if I actually would.) I would most definitely have written a letter to the school and complained about the lack of structure the assistants require from the individuals with disabilities. I would have also written to the other parents to encourage them to visit at the school and see if they agree with the activities being presented. (Giving adults a lady bug picture to color is not treating some of them with the respect they deserve.) A “normal” shopping trip would look as if the aides were assisting the individuals with disabilities, not treating them like children. To the preschoolers, the individuals with disabilities probably looked incompetent of doing simple tasks when in reality they have much more potential than even doing simple things. I believe more training or supervising over the aides should be enforced. Individuals with disabilities should not be punished for not having the right kind of support when they go there to learn skills and interact with others.
It is hard to admit how truly vulnerable our children (even when they are adults) are to the people in the general culture, and even worse those who are supposed to be in the helping role.
Thanks for your empathy and concern–it touches me deeply that you could see to the deeper issues. Our hope is in you–the next generation of professionals… and “helpers” …and the general public who are just starting to see their potential in everyday life because they are now going to school with people who are different than they. And the hope is that the gifts of people with disabilities will be recognized and cherished.
Great article! It is very upsetting to see that all of the time and effort people have put into school programs to promote normalization diminish once they enter into the real world. The next step will have to be informing society (the aides) on how to help people with disabilities to go about a normal life. With this next step, hopefully they realize that making lady bugs out of construction paper is not a necessary skill to have in society, and shopping for groceries is.
Hannah, you made me laugh. “hopefully they realize that making lady bugs out of construction paper is not a necessary skill to have in society” why is that so obvious to us and so damn hard to explain to these other people.
I’m guessing one of the main issues is that there are no laws that protect adults, like school-age children. So, the people providing the adult services are just nice people, with no training. They really truly do not know any better and especially for the adults like Aaron who can’t communicate very well, the adults without disabilities have all the power and control. Sigh!
The part about you and Aron at the grocery I can defiantly relate to. As an employee for Angels 4 Life I am required to take my client, Tony, out to do normal things that someone would do everyday. Therefore, Tony and I would go grocery shopping and she would bring her own money and make her own decisions. One time, some one stopped me and asked why I was not helping her and I respond with…” I am not her babysitter, I am her friend and I am just here to keep her company. Don’t you enjoy shopping with company from time to time?” The lady was a little thrown off but Tony is 22-years-old, that is 3 years older than me. Tony has down syndrome but she is perfectly capable of making her own food decisions..especially when it comes to pizza!!
It’s good you spoke up Victoria. I’m sure that other woman just didn’t understand because she saw Tony (I hope you changed her name for confidentiality) as a young child who needed help.
Your answer was perfect. It gave dignity to Tony as an adult, a decision maker, a consumer who can pick out her own items and pay with her own money.
I hope the lady learned something in the process. But, the biggest victory probably came from Tony–inside she must have been proud and happy to have a friend like you.
In my course here at Miami with Kathy McMahon-Klosterman, we have talked about ‘learned helplessness’ several times. As obnoxious as it may have made you seem, it was wonderful that you took the item out of the cart, returned it to the person with a disability, and had him/her put it in the cart on their own! As much as people try to belittle and devalue people with disabilities, they are not completely helpless. In actuality, they are often very smart people in their own unique ways.
I also found the “Purpose of the Grocery Trip” to be very interesting. The aide said that they were just there to look around and enjoy the air conditioning. Make it a worthwhile trip! You do not have to spend money to make it worthwhile. The aides could have challenged each person to find two items in the grocery store that begin with the same letter as their first name or some other task.
Thanks for your thoughts Austin. You are right, there is so much you can learn at a grocery store. Hopefully, “learned helplessness” isn’t one of them and “partial participation” and “inclusive attitudes” are!
This was a fascinating read, Mary. I had no idea such thought and judgment can come into a shopping trip for people with disabilities. It has opened my eyes. Really. I will pay much more attention in future to these possibilities. It has also informed me about why I get so infuriated when I am constantly ‘rescued’ and what more I can do to help my own kids grow to be fully functioning adults. An extremely valuable post. (Hugs)
Alison, as always, thanks for the hugs and support.
There are whole curriculums written about going to the grocery store. I know people get tired of me talking about school, but Aaron (and others) spent one day a week at the grocery as part of their curriculum.
Mary, you have a gift to write the sad stories and make a life lesson come out of it. I know things will turn out for the better. This week is just a storm, but you are a Tiger that can weather it well. Love!
Thanks Ana for all your support and your love.
Aaron is the real hero here. People with autism are supposed to be so rigid and demanding and here Aaron just goes along with it. I know he must wonder about the different expectations and events in his current life. He is really very smart.
This story really hit home for me. It is so sad that in today’s society people are still judged and pointed out for being different like Aaron was by the employee. It is not ok to assume that just because he has a disability he is going to be dysfunctional. I am sure it was extremely hard for his mother to see him go through that. At home I work at my local Mcdonalds and my friend James is my co-worker and just happens to be autistic. James is the hardest worker I know. He is always on task and will remind me and others when we forget to complete a job or task. He excels at his job and him being a little different does not affect him at all. He is always so happy and cheerful and never has a care in the world. I admire and wish I could be the warm-hearted kind of person James is.
Jayne, what a wonderful comment. Thanks so much for telling us some good news about you, James and McDonalds.
If you want to share more about this, I’ll make it a guest post. Contact me [email protected]
You remind us that inclusion is working for many people and there is still hope. Thanks.
Mary, the story made me laugh and cry at the same time, and I know you know why. The “aides” in the story may be good people, but they are nonetheless guilty of imposing the tyranny of low expectations. Not only does their attitude rob people… of their lives, but it also actually robs them, too, of the excitement and satisfaction of partnering with people so they can take control of their lives in every way possible. My heart hurts….for Aaron, for you, and for the others in the smoothie group. You all deserve so very much more. And, speaking from authentic personal experience, I know that so very much more is definitely doable if only people will believe in possibilities, use ONE yardstick for us all (not a separate one for people with disabilities), believe in and live the “Golden Rule,” and not be afraid to exercise their creativity muscles, and accept nothing less than full civil rights for people with disabilities. Sending a hug from the mountains…..
Welcome Marsha and thanks for your comments. They get to the heart of inclusion and community and dignity. You might want to check out another post on https://climbingeverymountain.com/drinking-beer-and-the-dignity-of-risk/ It has more humor, plus Aaron’s drinking a beer which would probably put these aides in the hospital.
The aides are sweet people. It would be easier to get mad at them if they weren’t so sincere and so clueless.
Hope you’ll sign up for the “get notice of new posts” in the top left corner of the home page. Thanks again. Mary
Thanks, Mary. In your beautifully descriptive and undoubtedly restrained telling of this story, you captured many of the feelings and experiences I have had with the current lack of training, support, and resources for staff who work in adult services. You did admirably to turn such a disheartening situation into one where learning, participation and respectful interactions could happen. I love the way you included in your narrative here the principles behind what you were doing (so familiar to me and yet so foreign to many direct support workers these days), turning this distressing event into a very instructive story.
It is so good that Aaron had inclusive instruction in school. He will be stronger and more resilient for having had it, even though his experiences and opportunities in adult services have been seriously lacking. I’m hopeful (as always) that the preschoolers will some day figure out that sometimes “big people” (teachers, parents, etc.) are clueless and don’t understand things that should be obvious–like treating everyone with respect and understanding.
Thanks again, Mary. Hang in there. Wish I could help.
Thanks Judy. And, you do help by reassuring me I am not crazy.
What I don’t understand is: Where are the other parents and professionals who worked so hard for inclusion and skill-building in the schools? All kids graduate. It’s like the adults become invisible (or as in this case very visible in a negative way.)
My son’s name is Aaron…and hes autistic too. Hes 4 and a half. I really liked your article… I would of done excactly the same thing 🙂 You go momma Tiger! We go to the grocery store at least 2 a week…. He helps me put things in the cart as we count, talk (well I talk) about colors, textutrs shapes and sizes…oh and the purpose of each item…anyway..thanks again for writing this. Best wishes to u and ur family
Welcome Christi, glad you’re here. Give a big hug to your Aaron. I really do believe the skills we teach our child when he is 4 and 5 and 15 and 30 make them feel more empowered and self-assured. Best wishes to you. We have learned so much in the last 30 years. In some ways, I wish I could start over with my Aaron.
Mary I was livid reading this. I know myself and the fact that I also had to learn to do things. I wouldn’t have cried, NO!! I would started on a lecture which in all likelihood would have included Christology. They are supposed to be Christian right? This of course assumes I somehow managed to be that civil(I’m scotch/Irish by descent). After witnessing similar wastes of time in a high school/adult class this whole idea of just babying them makes my Irish temper flare.
I’m glad you worked to at least show the adults that they can participate. That was much more constructive then I ever could have been.
I think some form of training would be useful. It does not have to be the overpriced garbage of a S.S or B.A degree. Just simply showing them how to truly help is all that is needed.
As for the message the preschooler got. My first reaction was “Great one more generation will be taught that to be disabled is to be a baby for life.” Not exactly the kind of message I would want them to receive.
As for the paid “professionals” They are living well and not doing the real work of bringing inclusion to the real world.
So I’m proud that at least one mother besides mine actually is trying to genuinely make a difference.
One last confession. I strongly suspect I would have actually started cussing them out and perhaps being so enraged by such “Christian “arrogance I might have started punching something or some other physical display a disgust.
Well I’m done for the moment. Glad my dear little Maria can’t read this. She would be head butting my arm to make me mellow out.
I’m truly sorry for Aaron and the other people like him and Maria. That makes me very sad. Plus I should have been just like them and that makes me madder and sadder. I’ll say a prayer for you and Aaron along with his programmates.
Have a great day.
I have learned (from experience:)) it doesn’t help much to make a scene in the community. Plus, in some ways these poor aides are just as much the victims as Aaron and the others.
Think about it. Who is going to change the underwear of grown men and women when they have accidents and only make minimum wage?
They are good people who are doing the best they can. One aide even told me other shoppers will sometimes stop her and tell her “You will have a high place in Heaven.” She thinks they are admiring her. And, I’m sure some of them are.
Everything is a matter of perception.
This shoppin experience upset me, but nothing like the current residential issues we have. So–I’m trying to follow my own advice and see the bigger picture and my perceptions.
I think it was awesome how you advocated for these adults with disabilities. Truthfully, I probably would have tried to help the group make this shopping trip better and an opportunity to learn, but probably would have ended up being very discouraged. My crying most likely would have started inside the store instead of inside my car. I agree with you that the biggest thing that needed to be done here was for the aides to be trained. Education changes people, so if these aides could be trained in these steps that you have learned, I think frustrations like this trip could be avoided. The message the pre-schoolers received was most likely that “those people” should be avoided and no adults will speak and explain to them why they are different. The message is ignore “them” and do not look at “them”. It is not a message of equality and inclusion, which is what the message should be.
Great comments Leah. You’re right, education is the key and makes all the difference. Sometimes my crying jags don’t make it to the car either. That’s a problem for us sensitive types:)
The preschoolers made me really sad. It’s not possible to go back and redo their first impressions. We can only hope they go to school with people with disabilities and their personal relationships will make the biggest impact.