Number 44 • June December 2009

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Air, Fire and WATER!!

With thanks to Anne Nafstad and “Ostlendingen” for this story

For deafblind Tormod Johnsgård in Sømådal in Engerdal and his Danish friend Peter Hangård this past year had a dream summer…

It all happened thanks to Marte Undseth Hagen, a 25 year old medical student from Elverum. Fearlessly, (but with careful preparation) she took the disabled classmates on the toughest tour – one that would take anyone’s breath away! It was with greatest of pleasure that mates, Tormod and Peter took to the outdoor life and tackled everything from rough, river-rafting to the mining tours.

Marte wished, so fervently, that Peter and Tormod would get a fantastic summer with outdoor activities as the main ingredient that she went ahead and planned together a14-day holiday, obtained sponsors and good helpers so that wilderness programme could happen!

According to Marte even if they do not hear or see, the boys have a very well developed sense of “feel”. For her it was brilliant to see how they enjoyed themselves – even though they had to be rescued several times! Their adventures were varied. One day they went white water rafting down the river Gløta which runs between the lakes. Tormod’s brother Jonas joined them for this very tough trip. It was simply amazing. Tormod and Peter threw themselves into the water to experience the feel of the cold water – it was “wicked cool”! Tormod was fearless into the foaming water and his brother Jonas brought him safely back into the canoe again. This was repeated several times, to Tormods great joy!

During a canoe paddle trip on Femunden they had beautiful weather. Tormod and Peter sat with their hand in the water for the whole trip and felt the power of the river. Peter smiled all day. The time had gone so quickly and he thanked the guide for their very special support!

The pictures tell it all!

These two young men have experienced the steep and uneven footways inside the mine with a cold damp air on their faces, and hiked the challenging terrain. They have tackled white water rapids, eaten charcoal blackened sausages and bathed in both heated water and ice cold mountain streams!

Marte made very comprehensive preparation and thanks everyone who helped make it come true!

SuperSibs – The Australian Experience

Karen Wickham, Social Worker at Senses Foundation in Perth, tells us more about the programme they have developed based on “Sibshop”…

In 2006 Senses Foundation established the “Super Sibs Program” to support siblings of children who are deafblind. The program is loosely based on the “Sib Shop” model with adaptations to incorporate the unique issues that can be related to having siblings who are deafblind. The Sibshop model was developed by Don Meyer of the Sibling Support Project and has been implemented worldwide. Mr Meyer offers this description of Sibshops:

Sibshops are lively, pedal to the metal celebrations of the many contributions made by brothers and sisters of kids with special needs. Sibshops acknowledge that being the brother or sister of a person with a disability is for some a good thing, others not so good thing, and for many, somewhere in between. They reflect a belief that brothers and sisters have much to offer one another – if they are given a chance. The Sibshop model mixes information and discussion activities with new games (designed to be unique, offbeat, and appealing to a wide ability range). Sibshops: Workshops for Siblings of Children with Special Needs – Donald J.Meyer & Patricia F. Vadasy

Siblings of children who are deafblind can experience both good and bad feelings about their brother or sister. Basically, siblings of kids with disabilities feel many of the same emotions and concerns that their parents can feel. However, because the relationship between siblings and their parents, as well as each other, is different from a parental relationship, they also have experiences and concerns different from others.

Brothers and sisters of children with a disability routinely face problems that are not experienced by other children and siblings generally have far fewer opportunities for peer support and education, compared to their parents. Common themes that siblings of children who are deafblind may experience are: feeling isolated, pressure to achieve, concerns about their siblings future, over-identification and fear that they will develop a disability, increased responsibilities, bullying, conflicting feelings of guilt, fear, anger, resentment, envy, loss, embarrassment and confusion. Brothers and sisters of children who are deafblind have a lot to teach one another, if they are given the chance. It is healing to be involved with others who are “in the same boat” and who understand better than anyone what it is like to be the sibling of a brother and sister who is deafblind.

“SuperSibs” seeks to provide siblings of children who are deafblind with opportunities for peer support and education, through activities designed to accomplish the following:

“Super Sibs” Goals are to:

• meet other siblings in an relaxed and supportive setting

• provide siblings with opportunities to discuss common joys and concerns with other siblings

• provide siblings with opportunities to learn how others handle situations commonly experienced by siblings of children with disabilities

• provide siblings with opportunities to learn more about the implications of their brothers and sisters unique disability

• enhance understanding of the importance of communication between siblings and their families

• have fun in a safe and non-judgemental environment

• provide parents and other professionals with opportunities to learn more about the unique concerns and opportunities frequently experienced by sibling of children who are deafblind.

Value and Benefits of “SuperSibs”:

The “SuperSibs Program” has been designed and developed to provide a safe and supportive environment for siblings to share their feelings, concerns, questions and problems. The group creates an atmosphere for positive change and adaptation whilst reducing sibling’s senses of isolation and creating opportunities for new friendships. “SuperSibs” encourages the growth of more positive attitudes and understanding toward siblings who are deafblind along with an increased sensitivity to their brother or sister’s unique disability. The program offers siblings a broad array of solutions and strategies from which to choose to cope with their own individual challenges living with a sibling who is deafblind. The group celebrates and maximises the unique opportunities that arise from having a sibling who is deafblind and siblings gain a sense of their own uniqueness knowing that the group had been developed just for them.

Fun and support

“SuperSibs” to date, has run many successful programs including: workshops based on the Sibshop Model –incorporating opportunities for siblings to meet other brothers and sisters of children who are deafblind, lots of games, learning opportunities, cooking and craft activities along with lots of laughs and fun!!!

SuperSibs has conducted discussion and peer support forums dedicated to the good and not so good parts of having a sibling that is deafblind – one example is the “Sound Off” game – giving siblings the opportunity to tell just one thing that is good, bad or so-so about having a sibling that is deafblind.

Dear Aunt Blabby is another firm favourite – letters to Aunt Blabby are placed in individual envelopes – each letter details a problem that a sibling may be experiencing i.e. bullying, embarrassment, sadness, the group is then invited to draw on their experience and reply to the letter with suggestions of strategies that might help.

“My Special Dream” gives the opportunity to siblings to write or draw about their own special dream for their sibling – the groups favourite so far has been “I wish my brother could be a racing car driver!!!.

SuperSibs has also held workshops to help siblings to learn more about the unique communication needs of their sibling who is deafblind – “Helping Hands” provided lessons in basic Auslan and discussions about the use of tactile signs. Siblings are encouraged to learn and embrace their siblings’ unique communication methods to strengthen their own relationships.

Senses Foundation has also hosted several family days in support of our siblings. Respite staff are provided on the day to look after the child who is deafblind giving the opportunity for siblings to have one on one time with their parents in a relaxed and fun environment. The opportunity for a family outing can be limited when a family is caring for a child who is deafblind. “SuperSibs” provides the forum where families can relax and enjoy all their children.

So it works for us…

Many of our earliest and most memorable life lessons in sharing, trust, patience, tolerance, jealously and frustrations have been learned through experiences with brothers and sisters. We should expect no less from siblings who have a brother or sister who is deafblind. In fact we need to acknowledge the sometimes subtle and hidden complexities a deafblind child brings to the relationship with siblings. Siblings provide the first and possibly the most inter connected relationships children will experience and we cannot disregard the incredible resource siblings of children who are deafblind represent – the art is in the balance.

Senses Foundation continues to works towards raising awareness of the issues that siblings can face reflecting our commitment to the family member most likely to have the longest-lasting relationship with the child that is deafblind.

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