Gastrostomy resource

New Resource and it is Australian!

There is a new resource out on supporting people who receive nutrition through gastrostomy. I haven't had a look at it yet, but the short snippet on the website looks good. Will let you know more when I've had a good look.

http://www.disabilityenterprises.com.au/content/well-enteral-nutrition-resource

Nate Hajdu's poem on friendship

I read this poem in a book (which I'll talk more about soon). On many levels in resonated with me (whilst not being religious) and thought I'd share it. It came from the Jubilee Association of Maryland website: http://www.jubileemd.org/template/page.cfm?page_id=45

My Friend Charlie
Nate Hajdu shared this heart-felt poem at the Interfaith Disability Pre-Summit in Washington, DC on September 22, 2005.

My Friend Charlie

He is my friend: I am his friend
I help him out: He helps me to learn
I help him to learn: He helps me to grow
I help him to grow: He teaches me to accept

His struggle: Is my struggle
His vulnerability: Leads to my respect
My respect: Leads him to trust
His trust: Leads to my devotion

His availability: Feeds my desire to be needed
I keep his secrets: He keeps mine
We have an arrangement
His lack of self-consciousness: Leads to my tolerance
His constant need for stimulation: Leads to my patience
His discomfort: Sharpens my sensitivity
His unhappiness: Is my challenge
His presence: Eases my isolation
His loyalty: Leads to my loyalty
Which leads to mutual appreciation

His brokenness: Makes me accept my own brokenness
Which leads to healing
His humanity: Leads to personal connection
His steadfastness: Centers me

His smile: Is my reward
His joy: Lifts my spirits
His happiness: Gives me a sense of purpose
His struggles: Expose my anxieties
Which tests me
Then strengthens me
And in turn bolsters my faith

In guiding: I am guided
In helping: I am helped
In teaching: I am taught

In his laughter: There is joy
In that joy: There is energy
In that energy: There is spirit
In that spirit: There is grace

New book

Music for Children and Young People with Complex Needs is a new book through Oxford University Press by Adam Ockelford.

Not being a muscian, I can see that this book is going to be a bit tricky for me to comprehend, however flicking through it, I know I will get a lot out of it. Ockelford breaks down taken for granted skills into meaningful chunks. For example, in his Sounds of Intent framework he looks at the various levels in reactive, proactive, and interactive stages of sound knowledge. In reactive, he starts with encounters sounds, then goes to shows emerging awareness of sounds, then to recognizing and reacting to simple patterns in sound...

I have long thought that a good langauge for describing the subtle interactions that occur with a person with a disability may best be described used musical terms - the build up, the burst, and the roll down are my gross terms, which I am sure map onto to more elegant and precise terms in music.

I look forward to reading this book and think that it will be a useful tool for music therapists, musicians, and people interested in cognition and communication.

Interaction shame???

I've been noticing lately how many people seem a little apologetic when they tell me or show me what they do when they are interacting with people with PIMD. I hear things like "we just muck around", "just have cuddles and stuff", "we don't do much", "I probably baby her a bit", "you'll think I'm a bit of a loon". But the person knows that those are the things that work in interactions: playfulness, fun, repetition, quiet being together, tickles. Why is that people are apologetic about doing these things, when they are the things that contribute to a person's quality of life? Why can't people stand up and be proud (in the home, day service, and out and about) and say this is what being with this person in a meaningful way is all about?
So many great quality interactions happen in bathrooms and bedrooms behind closed doors (often people are more vocal, move more, and are most alert) where people won't be embarrassed by their playful interactions - can we get playfulness out of the closet?!?

Strengths and Needs

In 2006 I heard Penny Lacey (University of Birmingham) talk about working with people with PIMD. Penny talked about a simple approach of doing a strengths and needs profile of the person. The way I remember it (though I am not sure it is 100% correct), needs was NOT a euphamism for weakness, but "what does this person need in order to be the best person they can be". So somebody with a vision impairment may have a need for people to sit 25 cm from the person's face, or need objects to be held to the left or right side, or interaction partners not to sit in front of bright windows in order to avoid looking into glare. I really like this approach of looking at what we need to do to support a person best.
David Wareing spoke last week at the ASSID Conference in Melbourne about his "shaking up the house" work. He also talked about a strengths and needs model, but he used a more systematic, but dynamic, means to determine the person's needs in the areas of cognition, communication, movement and other areas.
I think both of these approaches have much to offer for supporting high quality services for people with PIMD.

New resources

Susan Fowler has just published another great resource for supporting people with PIMD.

Multisensory Rooms and Environments: Controlled Sensory Experiences for People with Profound and Multiple Disabilities. Susan Fowler: Foreword by Paul Pagliano.

This book focuses on ways to use equipment bought, or considered for purchase, for creating multisensory environments. It also offers hand hints on less expensive options for working towards the same goals.

This book follows Susan's very successful 2006 publication. In this book she offers a treasure trove of activity ideas for rich sensory-focused interactions.
Sensory Stimulation: Sensory-Focused Activities for People with Physical and Multiple Disabilities. Susan Fowler: Foreword by Hilary Johnson.

Both are enormously useful publications filling a gap in the market for activities for people with PIMD. Both are published by Jessica Kingsley.

First printed in ECAPSS Newsletter April 06.

Many people may believe that it is not possible to have a conversation with somebody who does not use or understand speech. However it is possible to have wordless conversations.
The following article describes one of the types of wordless conversations that can be had.

• “Pro-vocation”
pro-1 prefix 1 favouring or supporting …. 3 forwards… 5 onwards.
vocation n. …. 2 a a person’s employment, esp. regarded as requiring dedication. (Employ 3 … keep (a person) occupied.)
provocation – provoke v.tr. 1a rouse or incite … b incite to anger …. 2 call forth; instigate …. 3 tempt; allure. 4 cause, give rise to.
The Australian Concise Oxford Dictionary (4th ed.).(2004). New York: Oxford University Press.

It’s an interaction seen often between adults, children, and infants. We tease, we tempt, we joke, we encourage. We generate a response from another person. We bring forward (pro-) and a state of being occupied (vocation) in another person. We engage them. Sometimes we engage by asking questions, telling stories, sharing successes. Sometimes we engage by provocation. We may tempt a response from somebody or even incite a small anger.

Pro-vocation can be a valuable way to enhance communication and participation.
Consider the following scenarios:
Scenario 1
1. X shows an object to Y.
2. Y demonstrates an interest in the object.
3. X holds the object just outside Y’s reach.
4. Y demonstrates frustration and more effort to reach the object.
5. X grades the distance so Y can successfully reach the object.
Scenario 2
1. Y is enjoying an object.
2. X removes the object from Y.
3. Y demonstrates frustration or pleasure with the removal.
4. X tempts Y to reach for it.
5. Y reaches out for the object and successfully gets it.
Scenario 3
1. Y is enjoying an object.
2. X reaches towards it.
3. Y pulls the object away.
4. X grasps the object.
5. Y continues to pull the object toward themselves.
6. X pulls at the object with a little force, but not enough to remove it.
7. Y pulls to hold it.
8. X lets go.

There are lots of different names for these conversations. We could call it “tug-of-war”, “you can’t-get it”, or “ooh… ooh… ooh… you got it!”. These are all conversations that may be useful for adults who have early communication skills.
Two types of responses of the person may occur:
1. The person may demonstrate a behavioural (or emotional) response such as surprise, agitation, pleasure.
2. The person may be provoked into action towards you or the object, such as looking at you or reaching to the object.

There are some important rules in pro-vocation.
• Incitement of frustration must be used sensitively. Do not incite the person if you feel that they may become angry.
• Pro-vocation must be balanced with the feeling of success. Celebrate when the person successfully gets the object from you. “You’re so strong!”
• Balance pro-vocation with other interactions, like just quietly sitting together or playing unchallenged.
• Only use pro-vocation with people that you have built a trusting relationship with. An important feature of tease is that the person knows that it is play and that you are
conducting the interaction with respect and good faith.
• Do not do pro-vocation with ill-thought, or if you believe that the person may believe that you are doing it with ill thought. This is not encouraging participation.

Has this article pro-vocated you?

Sheridan Forster

sit down and have a chat

In the process of recruiting for my research, I have been popping into more residential services. Everywhere I go the first thing I notice is if the main living area has height adjustable stools or not. I am a huge fan of the height adjustable stool. If you see height adjustable stools, you see people sitting down with people with PIMD. If you don't see stools you don't see people sitting down with people as much.

I love height adjustable stools (ones that have a small round seat and a gaslift) because:

- you can move them in really close to a wheelchair and if you a bit flexible you can move your legs around the wheelchair too and get your face nice and close to people who need it

- you can get the height right (although yesterday I was interacting with somebody who was very small, in a very small wheelchair, and in order to get my face under hers I jsut had to resort to the floor)

- the stools are brilliant for helping people with eating, reducing the twisting, turning, reaching, and stimulate optimum chin position in the person you are assisting because they don't need to look up at you

- they can move easily in or out when interacting with people (which can be very useful with people with startle reflexes)

Things to think about when you are looking at stools.

- look at the range of height (some don't go down far enough to get your head level with the person you are interacting with)

- look out for the broadness so you can get in close

- look out for foot rests (these can make it harder to get in close)

- look out for smoothness of movement - you want them to move around easily so you can get to where you need to and you can push them aside when not needed.

In the photo you can see Leendert and Afke, two great people I met in Noordenhaven, an institution in the Netherlands. Stools were available everywhere so staff could sit down and spend time with people.

Transition to adulthood

One of my favourite presentations at IASSID was by Krysti DeZonia, from the USA. Krysti presented her doctorate work looking at school to adult transition for people with PIMD. She asked parents and teachers, separately, how they conceptualised the person's adult life. She also looked at the relationship between various expectations and the sort of reports people write.
Many of the parents and teachers thought that adult life was going to be sad, lonely, and hard, with a fear of students being warehoused, underchallenged, and unable to find appropriate supports. Parents' priorities were for the person to have personal fulfilment, be with people who love them, and be part of life, not an observer. Whereas teachers were more about getting into services, and their in-class goals reflected laws and artifacts governing education. Given this different priorities the expressed goals in plans often did not match.
In her thesis, Krysti notes parents thoughts around the preferred activities of their transitioning child: "These varied depending on the child, but all children had activities that the parents believed bring them pleasure, and parents were not concerned about how functional or age appropriate these activities are" (p. 80).
This research has implications for families, educators, and for adult services. I work one day a week for adult services, and reading the despondency expressed by these parents and educators (although in USA), effected me. Firstly, are services giving the message to schools that all is not dark and horrible upon finishing school? Secondly, are services delivering on what people really want? In Krysti's study parents "simply discussed their desire that their child has a place in the world where he is respected, happy, and loved". Where are these priorities sitting in service provision?
I would love to see a study similar to this conducted in Australia looking at adults with PIMD in services.

PIMD IASSID Cape Town

My apologies for no blogs recently. The problem has been that I've not known where to start and I'm also experiencing some post culture shock from being in South Africa. Two weeks ago I was at the IASSID (International Association for the Scientific Study for Intellectual DIsability). At the conference the PIMD special interest research group managed to pull together a pre-conference workshop and numerous symposiums specifically looking at people with profound intellectual disabilities. Now selecting what to share is difficult, so I thought I'd side-step and instead share some quotes from Nelson Mandela that are relevent to people with PIMD.
"We accord a person dignitiy by assuming that they are good, that they share human qualitites we ascribe to ourselves"
"People are human beings, produced by the society in which they live. You encourage people by seeing good in them"
"It is what we make out of what we have, not what we are given, that separates one person from another"
"I am what I am both as a result of people who respected me and helped me, and those who did not respect me and treated me badly"
sheri