"I'd like to meet your son," I asked.
"But you won't get anything out of him," she said.
"Nevertheless, I'd like to meet with him anyways," I insisted.
She had brought her son to an intake meeting and waited with him in the reception area until we were ready. We could hear him making sounds and moving around. We could hear mother, voice desperate, trying to get him to sit quietly. When we met with mom he waited in the lobby with the assistance of another staff. She spoke quickly, answering our questions with efficiency. She'd done this before. This was an intake meeting and she wanted to impress us with her son's needs and the stress he presented to the family.
Then, done, I wanted to meet him, alone.
She almost told me that he couldn't manage it, but stopped herself after protesting that it was pointless, and called him to the room.
He took a seat, she took a worried look at him and left.
Communication is not a skill he has in great abundance. He only says a word or two and makes vague gestures. I drew a couple of pictures but could not get him to attend to the pictures enough to point to either one of them although he'd dutifully place his hand on the page. He sat quietly as I talked to him, inattentive to my words but unworried by being alone in a room with two strangers (myself and the agency staff). After a few minutes trying we called mom back to the room.
I told her that she was right, he didn't communicate much to us.
But I didn't feel like it was a failure and I wanted her to understand that.
It was still important for us to meet him on his own.
She nodded and said, "No one has ever wanted to try to talk with him alone before. I didn't know what to think. But thank you for trying."
How do people serve those they don't meet? He may not have said anything to me. He may not have pointed to a single picture. But I learned about him.
I learned he does not suffer extreme anxiety when separated from his mother.
I learned that he has enough autonomy to exist on his own.
I learned that he did not have a fear of strangers.
I learned that he could control his anger and aggression in strange new circumstances.
I learned that he could understand the request to point even if he didn't follow the request to look.
I learned that he could engage in eye contact when asked, and that he smiled appropriately at little jokes.
I learned that there was someone in there, behind the pretty massive disability.
That was worth a few minutes of my time.
I'd say.
15 comments:
Just as you wrote in First Contact.....there is so much more than meets our eyes when we meet people with such different ways of being in the world. I hope mom heard this after your brief connection with she and he...
...so much hidden treasure and so little time to dig....
I hope this boy's mom takes some time to look deeper inside to find all the gold that is there waiting to be discovered....
The very heart of what we do should always be human connection, I think too often people forget that. There are plenty of people who are "helpers" who attempt to "help" without laying eyes on a person, I find that to be pretty astonishing. The consultants I work with not only meet the person but also ask them what they think the problem is and how we might be able to help. Sometimes we find that the person really knows what will be helpful for them, even when someone can't articulate it, I believe it's probably pretty powerful to be asked.
Dave, just for me I have to say I don't like the word "comply." I know you don't mean it the way other's use it, but I cringed when I read it.
I'm always amazed at how misleading the appearance of "not looking at" something can be. I think that even when people don't appear to look at such things as a picture on a piece of paper, they can actually be seeing and noticing great detail. I have a friend who does that all the time! You know who you are. :)
The point is, it was wonderful to offer the opportunity of direct connection and there was probably more than it seemed.
Fab, you are absolutely right, that's the trouble with writing early in the morning - old habits slip into my writing. I'm going to go change it now. Thanks for the heads up.
Bless you Dave! The thing is we know your heart, you spill it out for us everyday, I don't think anyone could think you mean anything but respect and equality.
Ummm...please excuse my ignorance. What is wrong with "comply"? It means acquiesce, yes? I seriously didn't know it was offensive.
In the context Dave used it, it seemed to me that he wasn't making a judgment about whether the boy could do what Dave requested, only that he didn't and that was that.
liz, the field of intellectual disability has a long history of 'compliance training' in which those with disabilities were taught to do what they were told when they were told to do it without question ... disobedience led to punishment. Systematically people with disabilities were rewarded for acquiescence and punished for independance. It's the history of the word, not the word itself.
Belinda: I agree! I once worked with a boy who had several different disabilities, one of which was that he had blind spots in his vision field. This meant that he was actually LESS likely to see things if he was forced to "look" directly at something (i.e., in a way that the rest of us would visibly recognize as him "looking at" something), because apparently the very center of his field of vision was affected. For him, he could only SEE whatever we wanted him to look at if he was allowed to look at things through his PERIPHERAL vision, i.e. out of the corner of his eye, or by facing down but turning his eyes upwards, or vice versa.
Once we were talking about an upcoming party in class (this was all in sign language because all the kids in class were deaf, including the boy I worked with). I thought the boy I worked with wasn't paying attention at all because he didn't seem to be looking while the teacher was signing. But afterwards I happened to see him talking to himself about the party and the things he could expect to see there. So he had clearly seen the whole explanation--in his own way.
Dave...thank you...you always said it exactly as it is!! I learn so much from you...
Too often people with impairments of what ever kind are seen as "the bi-polar" or "the appendectomy" or "the mentally challenged" or fill in the blank. You get what I mean. I will repeat what I said the other day, until we start seeing people as fully HUMAN, before and beyond everything else they may be, we can not even approach equality. If "I" am the care-giver then "you" must be the care-receiver and we will always be separated and therefore not equal. We need to acknowledge the fact that the relationship is mutually beneficially and mutually educational. Everyone comes to us with lessons in their hands. Gifts, if you will. That is the point of relationships after all, so we may learn those life lessons. At least that is how I see it. It is like an unspoken contract. I will teach you this if you will teach me that. The care team concept is based on the idea of partnership with everyone, including the "client", having input rights. Even if that person can't fully articulate his needs it is so important that he is consulted. Dave, I love the way you think. It makes me less anxious about someday leaving my daughter here on this planet without me. Maybe by then more people will understand these things. I think you are doing a great job with your little corner of the world!
Wow, just wow. This brought tears to my eyes. Too often we don't attempt real communication with *anyone*, not reading their body language or facial expressions but relying only on words that may just express the way someone thinks they're expected to respond.
I saw this late... got to the computer so late yesterday I couldn't read anything.. so I hope you'll still see this.
I couldn't agree more. So many times I have seen people say that someone doesn't communicate, only to realize that there is a lot going on around. Almost a sherlock holmes finding things out round-about....
a very informational post
Thank you for the explanation! I get it now.
Dave, I am thrilled to have discovered your blog...thanks to Tammy of Praying for Parker.
I am a mom of four sons, three with a variety of special needs. Two of my sons live with disabilities which are "invisible", and they are often harshly judged by people who do not know them.
Thank you for what you do and for what you write here.
I'm always taken by surprised when we have big, important meetings to discuss the shortcomings of my daughter Paige. You know - those meetings that assign a chronological age to her skills, or level her at a functional level - low, average, high...
Every time I get asked how she communicates, as she is basically non-verbal, with perhaps 4 or 5 spoken words.
Every time I have to stop and think, to try to identify how she communicates, because I forget that she doesn't speak. She has such a wide vocabulary of communication skills that have nothing to do with her mouth and the noise it makes.
In some ways, its almost freeing to not use words to communicate - she has a beautiful soul that shines right through.
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