Read My Lips

Our friend Sammi has become somewhat of a permanent fixture in the Kewl family unit. Ever since the Freak Fest ended and we said goodbye to Baby Warrior, Sammi and her girlfriend Mary Poppins (our once nanny now great friend) have been living with us.
I have known Sammi for 10+ years and I love her dearly - but as a house guest, I have to be honest - she's pretty shocking. She leaves her undies from one end of the house to the other, can't wash dishes to save herself, would rather starve than set foot in a kitchen, stirs the girls up at the most disruptive times possible, is demanding, bossy, more stubborn than the three Kewl girls put together and is constantly finding new ways to annoy the *bleep* out of "hearing people".

Did I mention that I love her dearly? ... I know - Go figure!!!

Another thing about Sammi is that she speaks with her hands. Literally, I mean. Sammi is deaf and uses AusLan (Australian Sign Language) to communicate. She doesn't speak verbal English, but she silently mouths words as she is signing, she can read lips and write about a million words per second!! Her deafness is just one part of who she is though, and by no means does it define her.

As a diverse ability advocate myself, one of the reasons why I keep Sammi around is so the Kewl girls can benefit from her diversity. Lucky for Sammi (she ate the last of my chocolate yesterday and was very nearly thrown out of the house immediately!!), the Kewl girls are benefitting from her presence in even more ways than I imagined they would.

Upon adopting Aunty Sammi, one of our favourite expressions became, "Read my lips!"... Because, well - she does.. And the Kewl girls find statements of the obvious absolutely, hysterically funny. I found it quite amusing myself! I also quite enjoyed being able to mouth things to Sammi without actually speaking them, and so being able to have 'adult' conversations with the girls in the room. Kewl, right?

Well, yes - but this is where the 'diversity benefit' comes in.

Yesterday, Mary Poppins and I were talking when Miss J came over to sit with us. Mary wanted to say a filthy swear word something adult, so she covered Miss J's ears and finished her sentence.

Miss J rolled her eyes, and said, "I can read lips, you know. And that's not a good word choice, Mary."

Woah.

Thinking that this was a fluke - more of an educated guess than a lip reading ability - I silently mouthed to Miss J, "Oh really?"

To which she replied, "Yes. Really."

Woah!

It's not just Miss J, either. Both of her sisters appear quite capable of reading lips - and I am absolutely blown away by it!!! They can all speak Sign well, but as I have used signs with them all of their lives this isn't really surprising. Lip reading though - that's a whole other story!

I always assumed that lip reading was a difficult skill, learned over a period of years, in a class room or 'speech therapy' setting. When I expressed my amazement to the girls and asked them how they'd learned to lip read, Miss F replied, "Oh mum! It's easy! Sammi does it all the time." This makes me think that maybe my assumption has a lot to do with why I am (as yet) unable to read lips!

To help the girls develop their lip reading abilities, Sammi suggested I speak the first part of a sentence (audibly) in order to give them a context to work from, then finish off mouthing the sentence (silently). We have been doing this with much success ever since!

Although I am a big believer in the Kewl girls' learning ability, I have to admit that my amazement played a trick on my mind and had me thinking that maybe the girls were really just very good at guessing. I decided to 'test' this thought this morning and in response, Miss V essentially threw it back in my face.

When it was time for breakfast, I said to her (audibly), "Miss V, could you come to the table please, (then silently) it's time for dinner."

She laughed and replied, "No mum, it's time for breakfast."

Then as an afterthought, she added, "You're not very good at lip speaking, are you mum?"

Touche, Miss V.

So, as much as Sammi did the unspeakable, and ate the last of my chocolate - in light of the most incredible ways in which she is enriching our lives - I think we'll keep her.

(But Sammi, if you ever put your hands near my chocolate again - read my lips woman - I know where you live.)

Friends

The kewl girls and I went to a Special Education School today. I had to drop in to pick up some equipment I left behind last time and the girls wanted to come too. We got there just before lunch and even though I did what I needed to do in 5 minutes, the kewl girls stayed and played happily with their friends all the way through lunch break and into the next lesson!

As we were leaving we bumped into Mrs. E, a teacher and ex colleague from the State School next door. We exchanged how are yous and then she turned her attention to the kewl girls.
Even though Mrs. E was the certified 'teacher' in the group, I think the kewl girls did most of the teaching in their conversation today...

Mrs. E: "Aren't you lucky girls, going to work with mum?"
Miss J: "We didn't go to work. We went to school."
Mrs. E: "Of course you did! Silly me! Do you like going to school with mum?"
Miss F: "Yes, it's fun."
Mrs. E: "How lovely. And do you play with the little disabled kiddies?"
Miss F: "No."
Mrs. E: "No?! Don't you play with any disabled children at special school?"
Miss J: "No."
Miss V: "No."
Mrs. E: "Well what do you do then?"

Miss V: "We play with our friends."

Miss F: "Yeah.. We play with our friends."

Of course. Silly Mrs. E.

People First

The kewl girls and I were in town today and we bumped into L, the manager of the community centre where we do music. We stopped to chat and during our conversation I mentioned that we were shopping for a birthday present for the girls' friend R, who also comes to music.
It took L a moment to remember R from the 20 other children in the group.. When she did, she said, "Oh yes, the little down-sie girl."

In response, Miss J frowned and said, "Her name is R, and she's not a down-sie girl, she's my friend."

I couldn't have put it better myself.

R is a person, not a diagnosis.
Down syndrome is what she has. It is not who or what or all that she is.

We are all people first. No matter what our abilities, no matter what our diagnosis, no matter how smart our brains or how agile our bodies, we are all people first.

To only see a label is to be, in Miss J's words, "A big smelly bum".

More of Joey's words on Wednesday

It has been almost a month now, since Joey discovered Facilitated Communication and he has graciously given me permission to post this update... He says, "That's just the kinda guy I am. Kind, generous, caring, sharing, unpretentious, modest, humble..."

A quick bit of info, to paint the picture...
The 'flapping' referred to in this post is one of the ways that Joey expresses any kind of heightened emotion. His description of flapping is, "like a mad one handed clap going on in both hands."
And here is a look at the communication board we use. I hold one side with my left hand, Joey holds the other with his right hand, then my right hand supports his left hand to form a point and make the backwards movement away from the board. Joey makes the forward pointing movement and spells out his words on the board, which I read and then speak.
Kewl, huh?




The update...
The very first thing to tell you is that Joey has not been near a horse again! After getting the message (in no uncertain terms) that horse riding was not his thing, Joey's parents took him out of the program.
A week later I asked Joey about his first communication and he reflected, "I said I hate horses and people got it. Like, they got it."
Joey went on to explained that his obsession with the tack room came from his attempt to delay having to get on the horse. He also explained that his flapping was not because he was excited or even happy to be there, but because he was "shit scared" and couldn't wait to get off. He had been communicating this for 12 years but no one had "got it".

The next first...
When Joey's parents heard that he'd been successful in using FC as a method of communication, they were eager to facilitate with him. His mum asked if I would teach her and I couldn't agree fast enough. Joey was a little more apprehensive.

When I arrived at their house he was pretty wound up and flapping all over the place. He could barely even look at us, let alone the FC board. We took the pressure of straight away and said we'd have a chat, if he wanted to, but he did not have to try FC with mum today. This helped a little, and after we moved outside and sat on the grass he calmed down enough to sit beside me. Another 10 minutes and he could handle eye contact. Another 10 and we could pick up the board.

His hand was shaking and his movements were wild and intense. He stopped quite a few times to flap out some steam and I started to worry that this was causing him too much stress. I suggested we leave it for today and come back to it another time. Hit must have hit "NO" about a hundred times!
So we persisted, and after being assured that we would continue to persist until he had said what he wanted to, Joey calmed down enough to continue. I asked a couple of simple questions to try and ease our way into things and we got there eventually.
Here is what was said:

Me, "You have a beautiful garden, Joey. Do you prefer the shrubs, or the trees?"
Joey, "Trees, please."
Me, "Do you enjoy their smooth leaves, or rough bark?"
Joey, "Bark. It feels real."
Me, "Real is a great description. What else do you feel, Joey?"
Joey, "Boring question, Al."
Me, laughing, "OK. Do you have a question?"
Joey, "No."
Me, "Is there something you would like to say?"
Joey, "Yes."

We then had quite a few rounds of Joey making huge, random and uncontrolled movements, getting frustrated and then shoving the board away before he finally managed to say what he wanted to say.

"Hi mum. It's me. Joey."

She cried, I cried, and Joey flapped so much we thought he was going to take off.

Since then, Joey and I have talked about why it was so difficult for him to speak to his mum. He says, "Thoughts are always in my head and they've never got out before. When I think about her (mum) there is so much thought there that it all got stuck and nothing could get out the exit. Like a traffic jam, only freakier."

Joey's mum asked if he still wanted her to learn to facilitate with him and he said, "Yes. But I think we jumped too much in the deep end. Let's not drown next time, OK?"
Mum agreed, and they have now decided to go right back to basics and design their own communication board together. They will also look for a support person who will be able to facilitate with him in the mean time, as currently I am the only person who is able to do this and the time we share is limited. In relation to this Joey says to me, "When you leave with that board, you take all my words with you.... Nothing personal."
After he stopped laughing, he added, "The more I can say, the less traffic will be there to get jammed up. Then I can be traffic controller."
"That'll be sweet, that will."

Wordless Wednesday of a different kind

I have recently had the pleasure of working with an amazing young man named Joey, who has kindly given permission for me to share this story.

Some background...

I met Joey two years ago at a horse riding center. I was new, but he had been riding for over 10 years! The first thing that struck me were his fabulously good looks - He is the very essence of tall, dark and handsome. He has one of those infectious grins, that has everyone around him smiling, too.
He has an impeccable memory and often he laughs at me forgetting people's names. If anything goes missing, Joey will know where to find it. He keeps the tack room absolutely immaculate - Helmets and boots lined up in order of size, saddles and bridles neatly arranged in the same formation that the horses are tied up in outside and everything else in it's rightful place.

He also happens to have a disability. Please, do not get the "disability" confused with the person. Joey is Joey. He is 18, his favourite food is Mexican, his favourite band is Jet and he has a hat fetish. His disability is just one layer.

The words...

The nature of Joey's disability means that he is unable to communicate verbally, or by writing or signing. That doesn't leave much. Essentially, Joey has been wordless not just on Wednesday's, but everyday, for all of his life thus far.

Unfortunately, being silent has made Joey a spectator in his own life. His choices are usually made for him, his likes and dislikes decided by which ever support person is working on the day, and although many assume that Joey doesn't really understand much, or think about anything in particular, this couldn't be further from the truth. Joey has a lot to say.

Two weeks ago I talked to Joey about Facilitated Communication, and last week he spoke via a communication board for the very first time. Since then we have had many conversations, but this was the very first - and boy, did it knock me off my feet.

After 18 years of silence and 12 years of horse riding, the first words he communicated were,

"I hate horses!"

When asked if he wanted to add anything else, he said,

"Nothing personal."

Sexuality education

This morning while we were in town a friend who happens to have a disability came to give me a hug, then went to hug the man (Dude's trainer) standing next to me, whom she hadn't met before. I asked her to remember what sort greetings are OK to use when we don't know a person, and she shook his hand instead.
Afterwards the guy said to me, "It's just a hug, it's no big deal", to which I responded with "Would you hug someone you were meeting for the first time?". He said that HE wouldn't, but SHE is 'special' and it's not like a hug means anything to her. We continued to have a conversation about people with a disability and sexuality, during which he admitted he doesn't see these people as sexual beings and couldn't understand why I do sexuality education programs when "they don't have sex anyway".

Just to be clear, by 'sexuality' I don't mean the act of having sex. Sexuality is who we are, not what we do and sexuality education is not just about sex - It's about relationships, emotions, how to express ourselves, public and private body parts, public and private acts and places, good touch and bad touch, self protection and so many other things.
If nothing else, surely sexuality education in the form of self protection is important. I understand that not everyone is willing to see all people as sexual beings, and that's OK. What I don't understand is why we can't acknowledge that EVERYONE has a right to knowledge and education, and most importantly, to be safe. This is currently not the case. In fact, here are some vary scary stats:

• People with a disability are 3 times more likely to be physically assaulted.
• People with a disability are 10 times more likely to be sexually assaulted.
• Almost one third of perpetrators are service providers (people working as carers, teachers, staff in respite centres etc).
• Up to 83% of women with a disability will be sexually assaulted. That's more than 8 in 10.
• It is likely there are more cases of abuse that have not been reported.

How can we pretend there isn't a need for education (if nothing else) with these kind of statistics?