CHARGE Syndrome Association of Australasia - Resources

By: Charge Syndrome  05-Apr-2012

The following are some notable articles that have been published in the Families in CHARGE newsletter or other sources.

Hint and Tips for Sourcing Funding Grants

Published Winter 2007

Rotary, Lions, local church groups. Variety Club, Very Special Kids, Make a Wish Foundation.

Your local council member or member of parliament.

Your child's medical specialist/s (they may belong to an organisation that provides funds for conference attendance).

Have your story published in your local/national newspaper and ask for donations.

Run a trivia or quiz night, or a sausage sizzle.

If you work in a large firm, hold a special day such as Loud Shirt Day or Coloured Hair Day and ask for a gold coin donation.

Approach a local theatre company and sell tickets for an evening performance and get a cut of the profits.

New Zealand Specific

Visit your local Disability Resource Centre, Internal Affairs Department or Library and access the Fundview programme. Fundview is an extensive computer programme which lists all NZ funders - what they fund for and closing dates etc. It is a free service.

If you have Maori ancestory you may be able to approach a specific organisation for support.

Centrelink $10,000 Ex-Gratia Payment

Published Winter 2007

In a recent interview on a Melbourne radio station, Prime Minister John Howard had granted the family of a young blind boy a one off payment of $10,000. This decision was based on the fact that the parent was receiving a Carers Allowance but had been rejected for the Carers Pension. A review is now underway to assess if other families and parents are eligible for this one off payment. An overall review of the Carers Pension and the eligibility criteria is underway but you need to register your interest with Centrelink.

Simply call them on 132 717 and register your intent to claim. You need to be receiving the carers allowance and have been rejected for the Carer's Pension.

NSW Funding Assistance for Families

Published Winter 2007

DADHC (Department of Aging, Disability and Home Care) provides and funds a range of services, programs and resources to support families to care for their child or young person with a disability. In 2005, the Department introduced the Supporting Families Care for Children and Young People with a Disability Framework which aims to provide a broad range of supports for children and young people with a disability and their families. One of the new programs developed under this framework is the Family Assistance Fund.

The Family Assistance Fund aims to increase family wellbeing and strengthen the capacity of families to provide ongoing care for a child or young person with a disability in their home. Through the fund, small amounts of discretionary funding are provided directly to families to help them address needs that cannot be met through the standard range of services or other funding. The primary purpose of this fund is to support the work that case managers are doing to assist families.

In Search of Behavioural Phenotypes

Published Winter 2007

By Tim Hartshorne

Unusual behaviour is often associated with genetic syndromes. And so it is not surprising that children with CHARGE syndrome express unusual behaviours. Sometimes the behaviours of individuals who have genetic syndromes are lumped into psychiatric categories such as autism, or obsessive-compulsive behaviour. As an alternative, many of us have become interested in identifying the truly unique features of these behaviours that are associated with different syndromes. The identification of a behavioral phenotype helps us to focus in on the specific and unique behaviours of a syndrome. A behavioural phenotype is "A pattern of behaviour that is reliably identified in groups of children with known genetic disorders and is not learned." (Harris, 1995). In other words, if a person shows this unique kind of behaviour, that is almost diagnostic of the syndrome. If they behave in that way, they probably have CHARGE.

Do we have a behavioural phenotype for CHARGE? That is what some of us have been working on. I believe we are making progress. This is what we have developed so far:

While working on the CHARGE behavioural phenotype I was struck by certainly commonalities I was observing in the behaviour of the mothers. I began to wonder if in truth there might be a unique behavioural phenotype for the CHARGE mother. After careful research and analysis, I believe that I can answer that in the affirmative. Here is what I have learned about the CHARGE Mother Behavioural Phenotype:

CHARGE Mother Behavioural Phenotype

By Tim Hartshorne

1. Above average cognitive functioning, and near genius when it comes to baffling medical terminology.

2. Persistently focused on advocacy for her child.

3. Experiences little need to be socially appropriate when facing difficult professionals.

4. Repeats things over and over because the professionals need extra reminders.

5. May experience sensory meltdowns after school meetings and medical appointments.

6. When confronted with difficult professionals may lose behavioural control.

7. Professionals may have a hard time getting them off track and shifting their attention to irrelevant perspectives.

Planning for the Future of People with a Disability & Special Disability Trusts

Published Autumn 2007

Two booklets produced by the Australian Government Department of Families, Community Services and Indigenous Affairs

Families (especially parents) of people with disabilities often ask: "what will happen when I can no longer provide care?". It can be hard looking after the interests of a person with a disability at any time, but making arrangements for the future can be even harder.

The Australian Government passed new legislation regarding Special Disability Trusts. This legislation will assist family members to put up to $500,000 into a Special Disability Trust for a person with a severe disability. The trust is for the current and future care and accommodation of that person with disability. The legislation is complex and the benefits of the trust will be different for each family.

The Department of Families, Community Services and Indigenous Affairs have produced two booklets: Planning for the Future, people with disability; and Special Disability Trusts, getting things sorted.

These booklets aim to assist families to plan future arrangements for the ongoing care of their family member with disability that is positive, sustainable, flexible and fulfils the wishes of both the person with disability and their family where possible. The booklets also explain how families can use trusts to help look after family members with a disability and how new income support (social security and veterans' entitlement) concessions for special disability trusts can help in providing for family members with a severe disability.

Welcome to Holland

Published Autumn 2007

By Emily Perl Kingsley

Our membership list is growing bigger with new families subscribing to the Association each year. The following piece by Emily Perl Kingsley is a heartwarming, honest and funny tale that will resonate with many and we have reprinted it for all to enjoy. For some of you, it may be your first trip to Holland, for others it may be an opportunity to revisit this wonderful country.

I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.

Emily Perl Kingsley

Welcome to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Colosseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says "Welcome to Holland".

Holland?!? you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And the rest of your life, you will say "Yes that's where I was supposed to go. That's what I planned".

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Family Mediation and Counselling Services

Published Autumn 2006

For Parents of a Son or Daughter with Severe Disability

As detailed on page 8 of this newsletter, the Australian Government has passed new legislation regarding Special Disability Trusts. This legislation will assist family members to put up to $500,000 into a Special Disability Trust for a person with a severe disability. The trust is for the current and future care and accommodation of that person with disability. The legislation is complex and the benefits of the trust will be different for each family.

Family Relationships Service for Carers is a service funded by the Australian Government through the Department of Families, Community Services and Indigenous Affairs. It offers needs assessment and referral, counseling and mediation. They listen to people's concerns and help clarify family needs, particularly the needs of the son or daughter with a disability.

Typical issues (though not limited to) can include:

Seven organisations throughout Australia have been selected to deliver this service and they are provided under the Family Relationship Services Program (FRSP). The organisations providing these services are:

ACT Centacare Canberra - Goulburn 02 6162 6100

TAS Relationships Australia Tasmania 03 6211 4056

NSW Interrelate Family Centres 02 4957 8888

VIC Eastern Access Community Health Inc 03 9871 1865

QLD Centacare Catholic Family and Comm. Services 07 5428 5062

WA Anglicare WA Inc 08 9263 2050

SA Uniting Care Wesley Adelaide Inc 08 8202 5111

10 Things Your Student with Autism Wishes You Knew

Published Autumn 2006

These ideas make sense for other kids too

© 2005 Ellen Notbohm

Author's note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. "Just what my daughter would say if she could," said one mother. "How I wish I had read this five years ago. It took my husband and I such a long time to 'learn' these things," said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child's voice, a voice not heard often enough. There is great need - and I hope, great willingness - to understand the world as special needs children experience it. Ten Things Every Child with Autism Wishes You Knew became a book in 2005, and now the voice of our child returns now to tell us what children with autism wish their teachers knew.

  1. Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow. Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from "bad" behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don't understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.
  2. Never assume anything. Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can't retrieve it today. Ask yourself:
    • Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.
    • Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished.
  3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don't understand what you are saying because there are too many noises "in between" - that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding. Ask the school occupational therapist for sensory-friendly ideas for the classroom. It's actually good for all kids, not just me.
  4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly.
  5. Tell me what you want me to do in the positive rather than the imperative. "You left a mess by the sink!" is merely a statement of fact to me. I'm not able to infer that what you really mean is "Please rinse out your paint cup and put the paper towels in the trash." Don't make me guess or have to figure out what I should do.
  6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I'd be better off helping the school secretary put together the newsletter.
  7. Help me transition between activities. It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes - and build a few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.
  8. on't make a bad situation worse. I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:
    • Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.
    • Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior.
    • Making unsubstantiated accusations
    • Invoking a double standard
    • Comparing me to a sibling or other student
    • Bringing up previous or unrelated events
    • Lumping me into a general category ("kids like you are all the same")
  9. Criticize gently. Be honest - how good are you at accepting "constructive" criticism? The maturity and self-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.
    • Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.
    • Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.
    • Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.
    • Practice or role-play - show me-a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away.
    • It helps me if you yourself are modeling proper behavior for responding to criticism.
  10. Offer real choices - and only real choices. Don't offer me a choice or ask a "Do you want…?" question unless are willing to accept no for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all. You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life.
    • Whenever possible, offer a choice within a 'have-to'. Rather than saying: "Write your name and the date on the top of the page," say: "Would you like to write your name first, or would you like to write the date first?" or "Which would you like to write first, letters or numbers?" Follow by showing me: "See how Jason is writing his name on his paper?"
    • Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can't. When this happens, I won't get as frustrated if I understand why:

    "I can't give you a choice in this situation because it is dangerous. You might get hurt."

    "I can't give you that choice because it would be bad for Danny" (have negative effect on another child).

    "I give you lots of choices but this time it needs to be an adult choice."

The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I "can do it." Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I've left your classroom.

New Resource for Young Carers

The Young Carers Pack

Published Summer 2005

Carers Australia has produced a wonderful resource and information pack for young carers. 'Young carers are defined as children and young people up to the age of 25 years of age who help care in families where someone has an illness, a disability, a mental illness or who has an alcohol or other drug related problem. The young carer might help out with cleaning or cooking, getting their relative around the house, helping with medicines, keeping them safe, showering or dressing or watching out to make sure that they're feeling OK' (Carers Australia, 2005).

The pack contains a booklet with information and tips on all aspects of a young teenage carer's life, a journal for recording thoughts and an emergency care plan, a relaxation CD, some lollies, a pen and a key chain.

Although it doesn't provide information about being a sibling, it is a great general resource for siblings to have.

To order a Young Carer's pack, contact the Commonwealth Carer Resource centre in your state or territory on freecall 1800 242 636.

When Parents Feel Guilty

Published Winter 2005

By Tim Hartshorne

The following was written by Tim Hartshorne in response to an online parent discussion surrounding the guilt that parents may feel when they have a child with additional needs. Tim has agreed to have this text reproduced.

…… I am reminded of a conversation I had with a parent in her kitchen about guilt. I have this huge sense of guilt at times about all of the things I do not do for my child, or have not done, and tremendous worry as to whether the decisions we have made as parents regarding his education and medical intervention have been the right ones. Was having him in an inclusion program for so many years right? Was the cochlear implant surgery right? Is allowing him to lie on his bed and just self-stim when he wants to right? Is his failure to learn sign language our failure? The problem is there is no control group for our child and so we have no answers. We can look at what other people do with their kids, and how their kids have developed and worry about why those kids do better than ours. Our child is very low functioning with CHARGE. I can comfort myself that there is so much variability with CHARGE that the reason someone else's kid is doing better is because that kid is different, but it is hard not to worry inside-that it is my failure.

What I tell professionals is that the decisions that we parents make every day about our kids with CHARGE are difficult and sometimes gut wrenching decisions. You decide what form of sign to use - that is huge, which is why so many of us struggle with the decision hoping that someone will tell us which is right for our child. But once we make the decision, I think professionals should stop questioning or second guessing us, and get to work helping us make the decision work. When we decided that our child should be included, it was not the job of the principal to keep second guessing our decision (which she did until she retired), but instead to say, "OK, now the school is going to do everything it can to make this inclusion program an outstanding success for this child." If you decide to use exact English signing, it is not the job of professionals to argue with you about whether that is the right choice, but to make that choice work for your child.

The fact is, no one really knows what will work best. And probably whatever you choose can work if effort is put into it. All of us work really hard to figure out what we think is best. I don't think we can ever get rid of the doubt and the guilt we feel about whether we have done the right thing, or enough of the right things (at least I can't). That is why it is the job of the professionals to support us.

I guess my point is to recognize and honor the struggle we are all engaged in - trying to find the right answers for our kids (and those without CHARGE as well).

Are You Being Heard?

Published Winter 2005

Information and Teaching Tips for Teachers of Students with a Hearing Loss

A 21 page information booklet has been produced, aimed at mainstream teachers of the deaf and hearing impaired students of all ages. The booklet provides an overview of the educational needs deaf students may have in the classroom.

This booklet is a must-have for any teacher working with deaf students, particularly those teachers with little experience of the impact of childhood deafness on learning. It will also be useful for those teachers with some experience, who need to re-fresh their knowledge.

Others who will find the booklet useful for its handy hints on communicating with deaf children and young people are sports coaches, scout and guide leaders etc.

Topics are grouped into four sections; Teaching and Learning, Social and Emotional Well-Being, Team Work and About Hearing Loss. Each section covers a number of sub-headings, including many handy hints for teachers .

This booklet was produced jointly by Deaf Children Australia and the Deafness Foundation, Victoria.

Cost is $10 plus $2.50 postage:

Deafness Foundation (Vic)

PO Box 42

Nunawading Vic 3131

Ph & TTY: 03 9887 8683

Fax: 03 9887 8848

DVD - Beyond Ordinary: Growing Up Deaf

Published Winter 2005

Beyond Ordinary: Growing Up Deaf is a documentary DVD exploring the issues and challenges faced by young deaf and hearing impaired people and their families as they were growing up.

It features deaf and hearing impaired young people and some of their parents explaining the choices and the reasons for the choices they made, highlights their achievements and gives information on what it is like to be deaf or hearing impaired today.

This DVD will be of great interest to families of deaf and hearing impaired children and young people and will provide young deaf and hearing impaired people with excellent deaf role models.

This DVD was funded and produced by Deaf Children Australia.

Costs

  • Parents of deaf and hearing impaired children: $25
  • Deaf Children Australia members: $25
  • Other individuals: $30
  • Schools/Organisations: $50

Message from Tim Hartshorne, USA

Published Autumn 2003

Some children and young adults with CHARGE display interesting behaviour. I actually have been using it in my talks recently. There must be a reason to a child lashing out and it could be either a self-protective thing based on fear/anxiety, or anger about something. Has anything changed in the child's life or program right before this behaviour started? Following is a list of possible statements a child might be making when they strike out.

Justin - nine years old

- I hate surprises, therefore,…

- I don't like being touched,…

- I wanted to acknowledge your presence,

- I like you very much,…

- I need more warning before you approach me,

- I have been touched too much and I cannot tolerate it any more,…

- I was telling you that I'm ready for work,…

- I was asking you to come back later,…

The information in this article was current at 27 Mar 2012