Wednesday, 15 October 2008

Back from the conference

I have created a short video (~4 mins) to commemorate our visit to the Christchurch conference. This can be seen here:

I also took a number of notes that I'll be using to give a presentation to Early Childhood Intervention Australia next week. Here are the notes that I took (for anyone who may be interested). If you are one of the speakers and you feel that I have misrepresented what you have said then please comment on this post and I will gladly rectify any issue that you raise.

Charge Syndrome New Zealand 2008 Conference

One on one clinics

Tim Hartshorne (Psychologist and parent of 19yo CHARGE child)
“Try not to spoil CHARGE child... but I don’t know how to avoid it???”

Rob Last (Teacher of deaf and blind) 30y CHARGE experience
Use everything to communicate: pictures, signs, speech, sounds. If someone says that CHARGE child with mild-moderate hearing loss doesn’t need sign language, it’s “bullshit”.
Looking back on his career, there are some children whom he firmly believes would have significantly better communication if he had pushed the parents to do sign language from a young age.
The best way to get family to pick up sign language as a second language is to hire someone (Child of deaf Adults – CODA) to be with you in the home for a day per week and have no speech times.

Is BAHA (bone anchored hearing aid) worth investigating for Raphael?


George Williams (Paediatrician with special interest in CHARGE)
· Keep good records
· Use people that you trust
· Recognise the child’s disability but:
o Don’t let other people put limits on you because of the disability
o Decide on what intervention is worth doing
· CHARGE kids need help to enter puberty (seems like 100% of cases)
· At lease some CHARGE adults have a drive to get married and have kids.

Kasee Stratton (psychology PhD student from USA)
Pain and learning in schools
· CHARGE children can appear to be Resistant to pain and display bursts of aggression:
o Bullying is commonplace for children with disabilities.
o CHARGE kids may suffer from post traumatic stress disorder because of the early medical intervention. This in turn can lead to aggression, self destruction and the loss of self regulation.
o When suffering chronic pain, pain can build up unnoticed until it is excruciating, seeming like it is all of a sudden. This can look like someone flying off the handle for no reason.
o Children with developmental delays express pain less clearly.
· School is hard for children with disabilities.
o Sensory deficits make doing normal things exhausting because of the high concentration that is required all of the time.
o Lack of special treatment in schools makes it hard to perform at optimal level. It is important to get OT, PT and speech pathologist input in the classroom design for CHARGE children. (and I would add orientation and mobility consultant)
o Many people don’t recognise the fact that multiple disabilities do not just have an additive effect on learning difficulties but rather are multiplicative:
Learning difficulty factor <> +
Learning difficulty factor = x x x x
o CHARGE children need specific teaching with communication and social skills. You cannot assume that they will just pick them up like other children.

Tim Hartshorne
Parenting a child with CHARGE
· Questions with no good answers:
o How do we know that we are doing the right therapies?
o How do we know if we are prioritising the right areas?
o What professional advice should we defy?
o Do we have the right doctors and health professionals?
o How hard should we push to get our way with what we think is best?
· Hearing impaired and vision impaired is deafblind
· You will have to fight for services because either:
o He’ll never ... so there’s no point in trying
o He seems fine so he doesn’t need services
o Can only get therapy up to the lower end of “normal” even if skills in other areas are lacking
· Recognise the behavioural issues of CHARGE syndrome
o Poor ability to inhibit emotions
o Trouble shifting from one activity to another
o Obsessive compulsive especially in organising materials
o Inability to notice how own actions are affecting other people
o Inability to self calm/stimulate
o Inability to pay attention
o Can exhibit extreme behaviours to try to self stimulate but can go overboard and meltdown
· All behaviour has a purpose.
· Let the child know that you know what they want even if the answer is no.

James Townshend
CODA - only hearing family member, parent of child with Down syndrome, and teacher of the deaf.
Siblings of children with disabilities
· Alarm bells should ring if you see siblings showing signs of:
o Powerlessness to protect the disabled child from other’s ridicule or impatience.
o Fears that the disabled child’s needs will absorb much of the family resources
o Isolation caused by limits on the family’s social life.
o Diminished self-esteem.
o Real confusion about the disability
o Extra pressure to succeed in school
o Resentment about the role of always being ‘the helper’
· Strategies for siblings:
o Talk to others
o Read about your brother or sister’s disability
o Learn from other siblings who have had similar experiences
o Be willing to teach your parents
o Recognise that your disabled brother or sister has more similarities than differences to you
o Be proud of what your family experience provides you with
o Don’t be afraid to ask for help
o Teach your friends and others
o Keep your sense of humour and a positive outlook
o Remember that your brother, like you, needs to make his own way in the world
o Be the best person your can be
o Get involved in some way
· What can parents do?
o Recognise the uniqueness of your family
o Recognise, value and appreciate each child’s individuality
o Insist that extended family show no favouritism
o Be fair
o Arrange regular special times/ quiet time with hearing siblings
o Be alert for signs of stress in hearing sibling as well
o Limit responsibility
o Praise efforts
o Provide opportunities for siblings to express their feelings
o Have appropriate expectations of siblings. No saints thanks!
o Give siblings strategies
o Listen to siblings
o Admit you do not have all the answers
o Schedule family discussions
o Avoid comparing siblings
o Let siblings settle their own differences wherever possible
o Acknowledge and reinforce positive interactions
o Invite siblings’ friends over often
o Allow the siblings to be involved in activates designed to support the disabled child
o Provide opportunities to meet other similarly disabled children, siblings and adults.

David Brown (Consultant teacher for deaf blind)
· Recent study in USA looking at deafblind school leavers found:
o ½ have no formal communication system – recommendations to deal with this issue are not being actioned.
o 1/3 display Problematic behaviour
o Large majority are not working and are living with parents with little hope for independent living
o ½ have few friends outside their families

Social skills and Emotional Maturity
· Social skills are very important
o People offering residential housing, further education, and employment are looking for people who will fit in and are able to deal with the social demands.
o Education systems in US and UK don’t seem to place much priority on social skills.
o Challenging behaviours are usually tackled punitively without anything being offered to teach appropriate social behaviours.
o Get child involved in the community rather than schooling the child to be “ready” for the community.
· Emotional maturity is not being:
o Totally compliant
o Very quiet
o Very obedient
o No problem
· Emotional Maturity also involves:
o Making demands
o Asserting oneself
o Making one’s presence known
· Teaching emotional maturity involves these steps:
o The ability to identify own emotions (the ability for the child to label their own emotions)
o Understanding why they are having the emotion
o Self regulation - managing the emotion, keeping it under control
o Using emotions to aid ones own situation, ie intentionally summoning up an emotion that will be helpful for a coming situation.
· The adult child relationship is critical in developing emotional and social maturity.
· Emotional and social maturity gives someone skills to guard against:
o Loneliness
o Depression
o Feelings of isolation
o Panic
o Stress

Teaching and assessing
· Too much focus on establishing discreet skills
o eg can stack two 1” blocks, can stack three 1” blocks,
o Why not go on till they can stack 45 1” blocks to keep the child busy until they leave school [sic]
· Little interest in the process of acquiring skills
o When did the child learn this
o How did the child learn this
o Teachers change and records aren’t kept with this kind of information
· What about:
o Problem solving
o Rate of learning
o Generalisation of skills
o Combining skills spontaneously without being taught
o These skills are real independence, real functioning
· CHARGE kids need significant individualisation of the curriculum
o Schools are not good at doing this
o Even in cases where it is recognised that a student needs to have an individualised curriculum/communication and language programme David sees that they kids are still just doing the same as the rest of the kids in the classroom. Even when 1 on 1 assistant available this still doesn’t work properly.
· Consider the value in following the child’s interests as an aid to motivation for learning
o “Where is the joy in this child’s IEP?” – Individual Education Plan

CHARGE syndrome tips and traps
· Therapy in schools:
o Teachers are often unaware of what the child’s therapists are working on
o Therapy only seems to happen when the therapist is present
o Therapists should be embedding the required systems/equipment into the child’s every day environment
o Self regulation issues are not normally addressed at all in schools
o There can be lots of focus on vision and hearing but usually no focus on the other sensory systems (eg taste, smell, touch, balance)
· Consider the mental health issues for the child considering the medical intervention that they endure and the sensory impairments that they suffer from.
· Consider self regulation issues present in CHARGE
o State of arousal ranges from highly agitated to deep sleep.
o It is important for people to be able to move up or down based on their current situation
o CHARGE kids often don’t know what their current state is
o And the don’t have strategies to move themselves up or down by themselves
o You might need to intervene by taking away overstimulating environment or giving a calming activity
· “Feeling safe, secure and understood makes successful learning possible”
· CHARGE kids seem to have rapid turn arounds in emotion. David theorises that this could be put into words by saying “I had no idea I was:
o in pain until I was in agony”
o scared until I was terrified”
o angry until I was furious”
· Use Whatever works.
o If it works then it is good teaching, if it doesn’t work then it is bad teaching
o Don’t blame the child and don’t blame the tools, if it doesn’t work then it is just bad teaching
o Don’t do what is conventionally acceptable, do what works
o Don’t be afraid to make a fool of yourself it works

· CHARGE kids need to be in special positions to maximise sight eg:
o Lying down
o Head well supported
o Maybe even upside down
· People see with their brains, not with their eyes
o When providing visual information, provide context. Eg: “what animal’s head is this?”, not “what is that?”
o Point our important features to provide a reference to what is being seen.
Schooling CHARGE children
· Reducing stress needs to be a high priority because kids with CHARGE are constantly in stress to start with.
· Watch out for sensory defensiveness (for Raphael he hates people holding his arms/hands, but he is willing to initiate the contact if offered)
· CHARGE children have to contend with true multi sensory impairment: vision, hearing, smell, touch, empathy.
· CHARGE children have high developmental potential with therapists.
· In school environment, good outcomes are achieved with:
o 1 to 1 support
o Sensory impairment consultants (vision/hearing)
o Physiotherapist
o OT
o Speech pathologist
o Adapted furniture
o Individualised motivators
o Appropriate communication systems (eg added audio or visual support)
o Individual pacing
o Facilities for rest
o The right teacher (willing to explore for the benefit of education)
· An example of someone, who could not get a supported environment at school, created a home schooling environment by utilising distance education and support time to provide the in home care.

Rob Last
Developing Communication
· CHARGE kids with Mild-moderate hearing loss may not pick up speech as expected. Other senses play a role aswell
o Need to be able to breath well
o Have to have a clear mouth
o Facial muscles have to work well
o Cleft pallet (not Raphael)
o Eating issues
· It may be necessary to support spoken language with a visual language.
o All kids with CHARGE should be given spoken and sign options
· For teaching communication you need the following people:
o A teacher of the deaf who is fluent in sign language
o Paediatric audiologist
o Speech pathologist
o OT trained in sensory integration

Transitioning to school
· Start planning a year ahead
· Go to schools and speak to the principal
· During the year leading up Have thorough assessments made in the areas of:
o Vision
o Hearing
o Communication
o Physical development
o Orientation and mobility
o Occupational therapy
o Cognition
· Consider the Inclusion support workers and therapists that child will require
o Inclusion support worker
o Visiting teacher of the deaf
o Visiting teacher of vision
o Speech pathologist
o Occupational therapy
o Physiotherapy
o Be sensitive the teacher because this is a lot of people that have to come into their classroom
· Will the school welcome visiting role models eg Jasmine, Belinda, Ellen
· Is the school willing to offer Auslan as a second language.
· Will the school be willing to make modification eg
o moving classroom around
o erecting blinds
o highlighting edges in yellow
o clearing danger areas
o add lighting to passages
· question the schools policy on:
o diversity
o bullying
o discipline (relevant to your child’s potential behaviour and also the behaviour of other kids to your child)
· Consider the funding that is offered to the school (may differ public/private)
· Consider independent travel to school
· After the meeting with the principal offer a PD session (collaboratively with a teacher that already knows the child well and the parent) on your child to his new teachers
o Can do practical simulations eg stand on a wobbleboard, put bluetack in ears and put on vision reducing glasses. Now “write your name”
· Look at school environment (inside and outside) to find possible difficult navigation spots for child that might need modification.
· May need to redo all of the work if school gets a new principal