Spina Bifida and Hydrocephalus Association of

Saskatchewan – North Chapter Newsletter

Summer 2012 Newsletter

Spina Bifida and Hydrocephalus
Association of Sask. North
c/o Laurel Scherr
351 Kenderdine Road,
Saskatoon, Sk S7N 3S9
(306) 249-1362
E-mail

 


Message from Our President

President’s Message: Laurel Scherr

It’s hard to believe another year has gone by! I will highlight some of the activities and programs our Association provided this year as well as some upcoming events. The SBHAC 2011 AGM and Conference was held in Edmonton in October 2011 and we had strong representation from our Association. The program was full of wonderful information and great speakers.

Swimming lessons were offered twice this year, during the spring and fall sessions. We had 6 participants in each session. We would love to see more members get involved in this great activity. We are grateful to the Saskatchewan Lotteries Trust Fund and the City of Saskatoon who approved us for a grant that was used towards the cost of swimming lessons. As the City is experiencing a staff shortage and is having difficulty-securing instructors for us, we are trying a new format this year. If they have a cancelled session at any of their facilities, we will get a call and be able to access that instructor for our participants. We will try this, but I would encourage families that if they wish, they can book their own lessons at a pool of their choice and then submit their expenses to the Association.

In January, we held a Winter Party that was enjoyed by all in attendance. The event was held at the Western Development Museum with a Silent Auction, meal and the Scavenger Hunt was a lot of fun! We participated in the Virtual Tree Campaign that SBHAC organized. This continues to be an annual fundraiser.

Spina Bifida and Hydrocephalus Awareness Month (June) has always been celebrated with a BBQ. The weather this year did not cooperate, and we moved indoors and enjoyed a meal at Schruyers. Visiting and games were enjoyed by all in attendance. We recognized the Spinal Cord Team at KCC in June as well with flowers and refreshments delivered to clinic.
We continue to support the wheelchair dance groups, wheelchair basketball teams, disabled ski group, wheelchair curling, day programs, and camps. We are very hopeful that the sledge hockey program will become a reality in the coming months. We are fortunate to have so many programs available to us, and invite everyone to get involved and share their information. The Saskatchewan Wheelchair Sports Association (SWSA) is a great resource for information.

A highlight for my family this year was that all three of my daughters, Carly, Christine & Chantel, made the Provincial Women’s Wheelchair Basketball Team, and we attended Nationals in Richmond, BC in May. It was an amazing experience. They played at the Richmond Oval where the Olympics were held! Their team had two wins and two losses, so it was a very exciting event.
Our newsletter as well as our website is very useful to keep everyone informed, and we invite all members to make submissions.

I would love to hear from our members if they have ideas for our Association or would like to get more involved. I’d also like to see new families get involved. The staff at the Kinsmen Children’s Centre offers our information to new families they see.

In closing, I’d like to thank Shawn Scherr, our bingo captain, for his efforts. Our bingo revenues support all the programs and activities that we provide, as well as funding for families. Thanks to all the Board Members, Cinnamon, Shelley, Gene, Linda, Jackie and Brenda who serve our members. Special thanks to Bev Turgeon for her work on the newsletter and to Dave Elder for maintaining our website.


Question Spot – in response to questions forwarded!

  1. How does the CPA (Canadian Paraplegic Association) program with cell phone coverage work?
    In order to access the services offered by the CPA you first must be a member. To become a member visit the Head Office, #3-3012 Louise Street, Saskatoon, Sk. S7J 3L8 or call 306-652-9644 or email Saskatoon@canparaplegic.org. We called ahead, booked a time and met with the very helpful staff. The services offered by the CPA include: peer support, rehabilitation counseling, vocational/employment counseling, case management, information services, and community advocacy. Benefits from becoming a member include: vehicle registration rebate program, Sasktel mobility cellular phone benefit (must be 16 years old), Saskatchewan Blue Cross/CPA Scholarship, and Uro Medical supplies reward program, and receive the provincial newsletter Parascope.
    Specifically in regards to the above question, (information taken from Information Sheet from CPA): *The intent of this program is to provide a lifeline in the event of an emergency*
    Cellular Benefits from Sasktel mobility CPA Member Responsibilities
    -Waive connection and monthly user fees -purchase your own phone
    -100 free minutes/month local call time -all long distance charges
    -free call transfer, call waiting, 3-way call -user charges beyond 100 free minutes
    -waive the annual cell license admin fee -9-1-1 telecom fee .21/month + tax
    -1 cell number/ member -9-1-1 call taking fee .38/month + tax
    -phone must be registered to member -membership in CPA must be kept current
    *Just so everyone is clear, with today’s technology this program does not cover any data plan or texting. For any further information please contact the CPA Office at the number given above, they are very knowledgeable and very helpful.
  2. What is the One-Person-One-Fare Policy?
    The One-Person-One-Fare Policy was ordered by the Canadian Transportation Agency to Air Canada, West Jet, and Air Canada Jazz. The policy can be read in its entirety on the following link: http://www.accesstotravel.gc/ncds/ncd_details-e.asp?cid=1. In short it says that the Airlines for domestic flights within Canada, cannot charge “more than one fare for person with disabilities who: are accompanied by an attendant for their personal care or safety in flight, as required by the carriers’ domestic tariffs; or require additional seating for themselves, including those determined to be functionally disabled by obesity. However, each Airline has its own policy of how to obtain this status. For both Air Canada/Jazz and WestJet, the attendants travel at no charge other than applicable taxes.
    To access the forms for applying to Air Canada/Jazz call the Air Canada Medical Assistance Desk at 1-800-667-4732.
    For the complete process and necessary forms from Westjet go to: http://www.westjet.com/guest/en/travel/special-arrangements/special-needs/one-person.shtml
    Our family used the Westjet One Person One Fare and was impressed with the simplicity and quick turnaround time. We paid our daughter’s full flight cost and I (mom) flew for the cost of the taxes. Definitely, worth checking out, once approved it is for 2 years before it is reviewed again.
  3. What is The Access 2 Entertainment™ Card?
    This card provides free admission (or significant discount) for support persons accompanying a person with a disability at member movie theatres across Canada. The person with the disability pays regular admission. This program was developed by an advisory group of nine national disability organizations, in conjunction with Cineplex entertainment. You can apply online at: www.access2.ca. There is a $20 admin fee to be paid. The website also lists more attractions besides theatres that now accept the Access card.
  4. What is the SAID program all about?
    SAID stands for “Saskatchewan Assured Income for Disability,” and is intended to be a long-term income support for people with significant and enduring disabilities. The program is a Saskatchewan Gov’t program operated through the Saskatchewan Ministry of Social Services. One important detail is the applicant must be 18 years old. I spoke with a representative over the phone and she clarified several points for me. The first point being that this is not a “welfare” program under the old definitions used, secondly the income is on a sliding scale depending on need and current employment, and third it is not a onetime sign up for life, it is monitored, and can be used for short periods or for the long run. The policy manual is available online at: www.socialservices.gov.sk.ca/SAID. The representative stressed that each person is an individual with varying needs so, first, call to talk to a representative from Social Services who will do an initial assessment and then book an appointment (1-888-567-7243). I learned that full time secondary students do not qualify, students remaining in High School after the age 18 qualify even if they are living at home, so basically it is a family decision so check it out.
  5. What can you do with old wheelchairs?
    Check out this website if you have an old chair to donate: http://worldaccessproject.org thanks to Shelley for the information. * Remember wheelchairs supplied by Abilities Council go back to the Council you cannot donate them.
  6. Looking for employment opportunities?
    Look at the employment information and opportunities through the Federal program, Partners for Workplace Inclusion Program online at: http://www.ccrw.org/pwip/index.php. There is also a program with the Abilities Council called Partners in Employment and SACL, also has Employment Opportunities Consultants to assist individuals with job searching.
  7. Where can I find current information on Folic Acid?
    Current information and research can be found on this very user-friendly website at: http://www.folicacid.ca/.
  8. Why do we support the activities of Rick Hansen Foundation?
    Scooters for Grant
    The Rick Hansen Foundation is pleased to share that as a result of generous donations during the 25th Anniversary of Rick’s Man In Motion World Tour, the Foundation will be granting Invacare Mobility Scooters for persons in need. If you, or someone you know, are in need of a mobility scooter, please visit the grants page on our website to learn more about eligibility requirements and the application process for this unique opportunity. The Rick Hansen Foundation is committed to addressing vital needs within the spinal cord injury (SCI) and disability communities by funding research that has provided better care and outcomes for those with an injury, and contributing to accessibility initiatives that foster inclusivity for people with disabilities. Check their website for more information: http://www.rickhansen.com/language/en-CA/Home.aspx.
  9. With the new Childrens’ Hospital of Saskatchewan, will the programs our children currently receive at KCC through the Alvin Buckwold Child Development Program remain?
    During the initial planning phase for the Children’s Hospital of Saskatchewan, a significant amount of work went into the review and development of the recommended scope of services to be included within the facility. Through this process, it was recommended that the Child Development Program would remain in its community-based location at Kinsmen Children’s Centre. One of the important considerations was the perspective of staff and clients who appreciated the current programming at KCC and its community location rather than located at a tertiary acute care facility.

Our Spinal Cord Team
Alvin Buckwold Child Development Program
@ Kinsmen Children Centre in Saskatoon

Dr. A. Dzus, Orthopaedic Surgeon

Dr. A. Vitali, Neurosurgeon

Dr. P. Weckworth, Urological Surgeon

Admin. Assistant/Reception – Kaitlynn Antonenko
Pediatric Habilitative Nurse – Lynn Onushko

 

Left to Right: Lee Jasieniuk – Physical Therapist, Erin Minogue – Physical Therapist, Ashley Thauberger – Physical Therapist, Judy Bayda – Equipment Specialist, Monique Deault – Occupational Therapist, JoAnne Toh – Social Worker

Missing from photo: Lori Mulholland – Occupational Therapist


Bingo Report

SBHAS-N is still carrying a bingo license and is scheduled 4 to 6 times a month at Club West Bingo Hall located at 15 Worobetz Place in Saskatoon. We are making a profit of about $1500 per month.

This year’s bingo license states that we must have expenditures approved before payments are issued.
Once again, thanks to all of you who do your part in our fundraising.Submitted by
Shawn Scherr

Through the success of Bingo fundraising our Association funds registration and equipment costs for many programs. Remember to submit registration cost receipts to our Association for funding support! Check out the following programs:

  • Abilities Council, Quality of Life Recreation Programs including Slyp-Out, Camp Easter Seal, and Summer Fun. Their website: http://www.abilitiescouncil.sk.ca.
  • Saskatchewan Wheelchair Sports Association(SWSA) offers Athletics, Basketball, Curling, Rugby, Para-alpine skiing, Para-Nordic Skiing, Sledge Hockey, Target Sports, Tennis, and Water-Skiing. Their website: http://www.swsa.ca.
  • The College of Kinesiology at the University of Saskatchewan offers the PAAL program as well as the University School of Dance offers Wheelchair Dance at two levels, the Kids in Motion program, and the Agility Ballet Company (ABC Dance). For information contact Michelle Weimer(966-1005) or visit their website:
    http://kinesiology.usask.ca/community-programs/school-of-dance .
  • CLASI (Community Living Association Saskatoon Inc.) Fall/Winter Programs: Kids, Teens of Young Adults – call 652-9111 or email programming@clasaskatoon.org.

Make it happen for your children!


June – Spina Bifida Month – BBQ

Thank you to Cinammon for organizing then quickly rearranging the BBQ to be moved indoors in June, 2012. Everyone able to attend had a great time visiting and playing the guess the weight activity (thanks Brenda)!!

Did you know…
There are now “latex free” Tensor Elastic Bandages. Finally! Check your local pharmacy for latex-free products available including TENSOR by 3M, and First Aid Elastic Bandaging! Be sure they say “latex-free!”


Milestone Reached for Children’s Hospital of Saskatchewan

This 3D model shows where the new hospital will be located next to Royal University Hospital in Saskatoon. Visit www.saskatoonhealthregion.ca/chs for more details!

After nearly a year of design work, on July 12, the Ministry of Health announced it had approved Saskatoon Health Region’s early (schematic) design for Children’s Hospital of Saskatchewan. This came after teams of families, patients, staff and physicians worked countless hours to create a basic layout for the new hospital focused on how services could be provided more efficiently, and more importantly, how the design could support an improved hospital experience for patients and their families.
The new maternal and children’s hospital will be located in Saskatoon and will be connected to Royal University Hospital. The early design includes all private patient rooms with natural light (windows) and space for family/parents/supportive partners to stay in the room with the patient. It will have numerous dedicated family spaces and play areas.
Work has continued through late spring and into fall with teams focusing on the details in each space. Heather Thiessen, a patient and family representative on the emergency department design team, was involved in creating the early design and has stayed involved through this next detailed design phase.
“I wanted to make sure when a patient arrives at the hospital (to the emergency department), they will not get lost in the chaos of triage and the waiting area. I know this can occur, but I feel so confident this is being looked after,” says Thiessen. “Everyone tried so hard to be there to make sure every little detail was looked at. I think Saskatoon will be proud of the work. And, just knowing patients and families were included in the design, will make the pubic rest assured all their needs will be remembered.”
To ensure the hospital meets the needs of families from across Saskatchewan, Saskatoon Health Region spent the past few months reaching out for ideas. The team worked to capture ideas from children and teenagers currently in pediatrics at Royal University Hospital. In May, the hospital’s project team travelled to northern Saskatchewan and worked with more than 200 children and teenagers in schools to get their design ideas. They also talked with local care providers and families. They then travelled to central Saskatchewan in June to capture more information. In addition, in late July, they held an open house in Saskatoon where more than 100 people, including many families, dropped by to share their opinions. This was further complimented by on-line interior design surveys, and hundreds of design ideas from children and teenagers across the province, many of which came from southern Saskatchewan. These ideas were received after Saskatoon Health Region invited school divisions and families to work with children and complete a few key design activities.
“We have heard clearly that this hospital needs to feel like home for patients and families, no matter where they live,” explains Craig Ayers, project director for Children’s Hospital of Saskatchewan, Saskatoon Health Region. “We know it needs to make small children feel safe and teenagers feel comfortable. We know it also needs to appeal to adults – pregnant women and new mothers and their families. We know it needs to reflect all of Saskatchewan.”
Through this fall, the project team will finalize the design details for the hospital. Construction is scheduled to start in early 2014 and scheduled for completion in late 2016.
Thank you for the update from :
Michele Bossaer, BComm., BJourn.
Communications Consultant – Children’s Hospital of Saskatchewan
Saskatoon Health Region

Children’s Hospital of Saskatchewan…

  • will be a hospital for newborns, children and teenagers.
  • will be a hospital where pregnant women are cared for and where babies are delivered.
  • will have a new emergency department with clear separation of adults from children and teenagers.
  • will have operating rooms dedicated to surgical procedures for children and teens.

We Are So Proud!!

This was a very exciting year for the Saskatchewan Women’s Wheelchair Basketball Team! After a very hectic season for the Hot Wheels, full of practices and travel to attend many tournaments, they competed at Nationals in Richmond, BC in May, 2012.The event was held at the Richmond Oval, site of the recent Olympic Games. Despite being such a young team, they had two wins and two losses, and their fans were so very proud of their performance! From the enthusiasm at the gym, to meeting incredible players, to learning more about classifications and true team spirit it was such a great experience. Coached by Lisa Franks, the provincial team was made up of six players from Saskatoon and four from Regina. Members from our Association who were part of the team included Carly, Christine and Chantel Scherr as well as Ashley Baerg.


Christine Scherr – Carly Scherr – Chantel Scherr

Jared and archery!

Sheri performing at Dance on the Saskatchewan

Sledge Hockey in the Saskatoon area!

Thanks to two grants we have received from Sask Sport, and with the help of the Sask Wheelchair Sports Association, there are hopes of a sledge hockey club in the Saskatoon area!
Recently SWSA put on a ‘Have a Go’ sledge evening at the Aberdeen rink with pizza and bowling following up the sledge hockey. Fun was had by all!
We are having another ‘Have a Go’ event on Saturday, November 3rd at the Aberdeen Rec Complex from 2:15 to 3:45. To register contact Brenda or Ted Carter tbjcarter@sasktel.net or call 306-382-5593.
Our goal is to get enough interested individuals so that we can have weekly sledge hockey sessions. We will email all members again with the information on any sledge hockey activities as they are planned. You need to be a member of our SB Association in order to get the emails.


Spina Bifida & Hydrocephalus Association of Canada National Conference
Dream – Live – Inspire: October 7 – 9, 2011 in Edmonton, Alberta

Congratulations and thank you to the Conference Planning Team from Northern Alberta for all the work and long hours they put into making the National Conference such a huge success. Thank you to their Organizing Committee and numerous volunteers and individuals that made the Conference so successful and worthwhile for everyone who had the opportunity to attend.

1

The Saskatchewan Group Photo
– What a Good Look’in Bunch!!
These were all the members from our Association and their families that were able to attend! A great showing from Northern Saskatchewan!

Coference Summary Reports submitted by Association Members

1) Executive Functioning Tips and Techniques
Presented by Dr. Petrina Pelletier, Clinical Neuropsychologist

Executive functioning -An umbrella term
– Identifies a specific set of cognitive functions
– Opinions of what these functions are
– Definition – Mental capacities to formulate goals, planning them and carrying them out
– Problem solving for attaining goals
– Goal directed behaviour itself
– Regulation of behaviour
Higher level thinking Skills – decision, planning, organizing and evaluating
Functionally – day – day
Awareness/self appraisal of one’s strength and weaknesses
Ability to set realistic goals for oneself, plan and organize to achieve goals, self initiating behaviour to pursure goals.
Self inhibit behaviour
-can be incompatible with goals
-self evaluate performance
-flexibility shift sets, strategies and solutions if necessitated by task demand
Component Function
Initiation, planning, organizing, problem solving, reasoning, mental flexibility/shifting, inhibition, self regulation and self monitoring
Executive functioning is a critical factor in life, social, academic, vocational and independence
Common area of concern with spina bifida and hydrocephalus individual with management of care
Literature –root of some of the difficulty with spina bifida and hydrocephalus individual
Never clear cut or just one thing
Consider developmental trajectomy
What is reasonable to expect
As brain grows and develops – connection with frontal lobe and other brain areas too
Late adolescence frontal lobe completes development
Precursor skills in preschool
Skills develop throughout childhood
Environmental demands/expectations shift as children reach teen years.
This is not always the case of individuals with developmental issues or medical conditions
Deficits -External brain
Individuals create an external brain
Modify environment to compensate for areas of difficulties
Change external world before trying to change internal world
Change environment, change task, and the way you interact with the individuals
Teach the skill, differing expectations for 5, 11 year old versus 15
Differing expectations for those that have other cognitive or learning issues
Identify a specific area to work on and concentrate on that provide just enough support for individual to be successful
Be positive, collaborative, make support part of everyday interaction
Keep support in place for as long as needed and gradually reduce supports as individual masters the skill.
What can we do about deficits?
-variety of strategies, need to try strategies to find a good fit.
Initiation – acting on idea, reinforce initiation throughout the day, make things routine so less initiation is needed. Smoother life will go. Break larger tasks into smaller components – less overwhelming. Ues cues – verbal, visual or electronic. Involve the individual and discuss what will work.
Planning-verbalize to individual how you plan, talk to them about what you are planning. Create step by step plans on paper.
Walk them through steps, prioritize, use a visible calendar or agenda, embrace routine.
Organizing – a place for everything and everything in its place. Keep expectations reasonable use routine.
What can we do about problem solving and reasoning?
Break it down into components, help individual brainstorm, teach an approach to problems.
Is this a problem, options or solutions, which is best option or solution., what are the steps to implement solution, implement the solution. Monitor progress – alter if necessary, evaluate outcome.
Evaluate different options, write them out
Mental flexibility or shifting, individual could be stuck, give choices when possible, discuss life chores, what alternative choices or actions might have been. Plan ahead or practice might provoke anxiety, Anxiety can lead to rigid thinking. Help the individuals realize when they are being inflexible.
Inhibition – most difficult to change, clear and consistent feedback, develop a signal or key phrase. Teach strategies to think first. Practice
Self regulation- recognize emotions and triggers. Emotional Control – Breathing and counting.
Provide feedback, use real life experiences, teachable moments, practice
Self monitor, provide clear feedback, observations, videotaping, do in the moment, provide structure for self evaluation.
ACCEPT THAT THRE IS A CAN BE A DISCONNECT BETWEEN ‘KNOWING AND DOING’
And that’s okay if that is all that you get from these scratch notes.
Submitted by Shelley Elder
2) Topic: Empowerment for Parents and Caregivers: Raising Up and Coming Adults
Speaker: Mia Fairley (parent of young adult with SB)
Key Points: Parents’ Roles
1. Be Your Child’s voice – you know their history, their pain, their symptons -remember you can learn more -remember you can teach others
2. Document and keep a binder – make notes during appointments -document feelings and observations -create and use surgery sheets, procedure sheets, appointment sheets -ask for reports and make copies for the binder -list the profession team and their secretary names and numbers
3. Ask Questions – check the internet for info (with caution) – ask a support group for info – have one other person at the appointments – at appointments slow down the info until you understand it completely
-listen to your instincts
4. Ask for Help – exhaust any means you can when seeking help – learn from others, gain strength from others, and join local associations, as there is strength in numbers
5. Know that You are Capable – surround yourself with positive, supportive people -mental and physical exhaustion can contribute to unclear perspectives, be sure to take care of yourself, your child needs you. Your Role in Relation to Your Spina Bifida Child
1. Share your knowledge with them, (give them the medical history binder you upkeep when they are ready for it, get them involved in putting in information)
2. If you want to help them overcome obstacles, DON’T be one!
3. Support their decision-making (at age 18 you need you and your child to sign information sharing and release forms with each doctor they see so you are privy to the information)
4. Be careful you don’t crush their dreams, don’t assume they can’t do something – they might not be a specific chosen career but may find another choice in a related field
5. Mia shared 5 Tips to guide your child to independence: – Identify all of their strengths and gifts and list them, Get involved in peer groups, sports, arts, associations, Get them on the computer, Educational assessment every 2 – 3 years, and Document and make copies of everything.
Summarized by Bev Turgeon ( I have created a medical binder for Sheri that has been so helpful this past year, if you are interested in seeing it, give me a call @ 933-0427).
3) Topic: What’s New on the Medical Side of Spina Bifida and Hydrocephalus Treatment
Speaker: Dr. Keith Aronyk

Dr. Aronyk shared what the future looks like for spina bifida, focusing on fetal surgery including endoscopic treatment of hydrocephalus, spina bifida and tethered cord. At a more futuristic level there is research and exploration of molecular genetics treatment of spina bifida being done. He also spent a considerable amount of time answering questions. We took special interest in his explanations of how hydrocephalus can affect the part of the brain that controls hunger and the relationship between hydrocephalus, tethered cord and syringomyelia. Although this is a short summary, it was a very informative, current presentation. Dr. Aronyk has a vast knowledge of spina bifida and is so eager to share.
Summarized by Bev Turgeon
4) Topic: Easing the Transition, Tips for a Rewarding Post-Secondary Experience
Speaker: Matt Davis (Professional Adult with Spina Bifida)

Matt spoke about his experience at Post-Secondary College and summed it up in 5 points.
1. Self-mastery/self-advocacy is Key. Learn to speak up, tell them what you need, tell them about your disability and when there is misinformation work together to make it right rather than complain about it. Get to know the Disability Services Office Well!
2. Cut the cord – independence is key, learn from your mistakes on your own. Dial 9-1-1 for emergencies; for non-emergencies – use your head!
3. College Survival Skills include visiting the College beforehand, meeting with the Profs beforehand, attend classes, keep up with assignments, get involved, ask for IT help if needed and above all know the 4 C’s –
Clothes (laundry and repair) Cooking (your own meals)
Cleaning (house and self)
Confidence (knowing you can do it and then do it).
4. TCPB (Taking care of personal business) as hygiene and meds are very important to yourself and others around you. Do your own bathroom care or arrange for an personal care attendant. Above all – stop, look, and pay attention to your body.
5. Tips for Getting Prepared – research school options, financial aid, ask questions, select a major, meet with the Disability Services well ahead of time, check out the accommodations and know your rights.
Matt shared a very powerful quote: “The only disability in life is a bad attitude!” ~ Scott Hamilton.
Two websites Matt recommended were http://www.ccdonline.ca (Council of Canadians with Disabilities), and http://www.neads.ca (National Educational Association of Disabled Students)
Summarized by Bev Turgeon


Spina Bifida and Hydrocephalus Association of Saskatchewan – North

Executive and Board Members

Laurel Scherr – President
351 Kenderdine Road
Saskatoon, Sask.
S7N 3S9
Phone: (306) 249 – 1362
Cell: 270-3488
Fax: (306) 249 – 1362 (phone first)
Email: lscherr2@sasktel.net
Term: 2010 – 2013
Cinnamon Martel – Vice President
711 Beechmont Lane
Saskatoon , Sask.
S7V lC9
Phone: 933-4501
Email: c.martell@shaw.ca
Term: 2009-2013
Shelley Elder
114 Waterloo Crescent
Saskatoon , Sask.
S7H 4H5
Phone: 477-0819
Cell: 220-62229
Email: d.elder@shaw.ca
Term: 2009-2013
Linda Renaut – Past President
215 Addie Crescent
Saskatoon, Sask.
S7N 3C5
Phone: (306) 249 – 0475
Email: lrenaut@shaw.ca
Term: 2001 – till present
Jacqueline Jewell, National Board Representative
P.O. Box 214
Kenaston, Sask.
S0G 2N0
Phone: (306) 252 – 2867
Email: jewell_23@hotmail.com
Term: 2009 – 2013
Bev Turgeon – Newsletter Editor
P.O. Box 873
Martensville, Sask.
S0K 2T0
Phone: (306) 933 – 0427
Email: bturgeon@sasktel.net
Mrs. Brenda Carter – Secretary
P.O. Box 2476
Martensville, Sask.
S0K 2T0
Phone: 382-5593
Cell: 380-5138
Email: tbjcarter@sasktel.net
Term: 2010-2013
Gene Layton – Treasurer
22 Britnell Crescent
Saskatoon, Sask.
S7H 3X8
Phone: (306) 374 – 7438
Email: glayton@sasktel.net
Term: 2009 – 2013
1 Our board is here to listen, learn, and represent you and your family! Please contact board members if you have questions, suggestions or are able to volunteer for any event or program!

Membership Form

Association Membership… Our Association is growing and new members are always welcome. We need to keep our membership current! The membership costs are: $25 per year or $65 for 3 years.

With your membership you also are registered with the SBHAC and receive our local newsletter, minutes, volunteer opportunities, voting privileges, funding opportunities, access to all programs, activities and social events. Please complete and return the following membership renewal today!!

To print a copy of the current membership form, click here.


Did You Know!

Spina Bifida Education Binder

If your child’s school needs a free Educator binder please contact:
Karen Baerg (306)254-2792 or Laurel Scherr (306) 249-1362

We are on the web!!
See us at:
http://www.sbhasn.ca/index.html

Thank you to our webmaster: Mr. Dave Elder!!

Be sure to check out the
National Spina Bifida website at:
http://www.sbhac.ca

There are many interesting features from research to news items to informative useful links!

Spina Bifida Association of Sask.  – North Chapter:

c/o Laurel Scherr
351 Kenderdine Road,
Saskatoon, Sk
 S7N 3S9
(306) 249-1362

e-mail: lscherr2@sasktel.net

symbol_lg3

Spina Bifida and Hydrocephalus Association of

Saskatchewan – North Chapter Newsletter

Summer 2012 Newsletter

Spina Bifida and Hydrocephalus
Association of Sask. North
c/o Laurel Scherr
351 Kenderdine Road,
Saskatoon, Sk S7N 3S9
(306) 249-1362
E-mail

 


Message from Our President

President’s Message: Laurel Scherr

It’s hard to believe another year has gone by! I will highlight some of the activities and programs our Association provided this year as well as some upcoming events. The SBHAC 2011 AGM and Conference was held in Edmonton in October 2011 and we had strong representation from our Association. The program was full of wonderful information and great speakers.

Swimming lessons were offered twice this year, during the spring and fall sessions. We had 6 participants in each session. We would love to see more members get involved in this great activity. We are grateful to the Saskatchewan Lotteries Trust Fund and the City of Saskatoon who approved us for a grant that was used towards the cost of swimming lessons. As the City is experiencing a staff shortage and is having difficulty-securing instructors for us, we are trying a new format this year. If they have a cancelled session at any of their facilities, we will get a call and be able to access that instructor for our participants. We will try this, but I would encourage families that if they wish, they can book their own lessons at a pool of their choice and then submit their expenses to the Association.

In January, we held a Winter Party that was enjoyed by all in attendance. The event was held at the Western Development Museum with a Silent Auction, meal and the Scavenger Hunt was a lot of fun! We participated in the Virtual Tree Campaign that SBHAC organized. This continues to be an annual fundraiser.

Spina Bifida and Hydrocephalus Awareness Month (June) has always been celebrated with a BBQ. The weather this year did not cooperate, and we moved indoors and enjoyed a meal at Schruyers. Visiting and games were enjoyed by all in attendance. We recognized the Spinal Cord Team at KCC in June as well with flowers and refreshments delivered to clinic.
We continue to support the wheelchair dance groups, wheelchair basketball teams, disabled ski group, wheelchair curling, day programs, and camps. We are very hopeful that the sledge hockey program will become a reality in the coming months. We are fortunate to have so many programs available to us, and invite everyone to get involved and share their information. The Saskatchewan Wheelchair Sports Association (SWSA) is a great resource for information.

A highlight for my family this year was that all three of my daughters, Carly, Christine & Chantel, made the Provincial Women’s Wheelchair Basketball Team, and we attended Nationals in Richmond, BC in May. It was an amazing experience. They played at the Richmond Oval where the Olympics were held! Their team had two wins and two losses, so it was a very exciting event.
Our newsletter as well as our website is very useful to keep everyone informed, and we invite all members to make submissions.

I would love to hear from our members if they have ideas for our Association or would like to get more involved. I’d also like to see new families get involved. The staff at the Kinsmen Children’s Centre offers our information to new families they see.

In closing, I’d like to thank Shawn Scherr, our bingo captain, for his efforts. Our bingo revenues support all the programs and activities that we provide, as well as funding for families. Thanks to all the Board Members, Cinnamon, Shelley, Gene, Linda, Jackie and Brenda who serve our members. Special thanks to Bev Turgeon for her work on the newsletter and to Dave Elder for maintaining our website.


Question Spot – in response to questions forwarded!

  1. How does the CPA (Canadian Paraplegic Association) program with cell phone coverage work?
    In order to access the services offered by the CPA you first must be a member. To become a member visit the Head Office, #3-3012 Louise Street, Saskatoon, Sk. S7J 3L8 or call 306-652-9644 or email Saskatoon@canparaplegic.org. We called ahead, booked a time and met with the very helpful staff. The services offered by the CPA include: peer support, rehabilitation counseling, vocational/employment counseling, case management, information services, and community advocacy. Benefits from becoming a member include: vehicle registration rebate program, Sasktel mobility cellular phone benefit (must be 16 years old), Saskatchewan Blue Cross/CPA Scholarship, and Uro Medical supplies reward program, and receive the provincial newsletter Parascope.
    Specifically in regards to the above question, (information taken from Information Sheet from CPA): *The intent of this program is to provide a lifeline in the event of an emergency*
    Cellular Benefits from Sasktel mobility CPA Member Responsibilities
    -Waive connection and monthly user fees -purchase your own phone
    -100 free minutes/month local call time -all long distance charges
    -free call transfer, call waiting, 3-way call -user charges beyond 100 free minutes
    -waive the annual cell license admin fee -9-1-1 telecom fee .21/month + tax
    -1 cell number/ member -9-1-1 call taking fee .38/month + tax
    -phone must be registered to member -membership in CPA must be kept current
    *Just so everyone is clear, with today’s technology this program does not cover any data plan or texting. For any further information please contact the CPA Office at the number given above, they are very knowledgeable and very helpful.
  2. What is the One-Person-One-Fare Policy?
    The One-Person-One-Fare Policy was ordered by the Canadian Transportation Agency to Air Canada, West Jet, and Air Canada Jazz. The policy can be read in its entirety on the following link: http://www.accesstotravel.gc/ncds/ncd_details-e.asp?cid=1. In short it says that the Airlines for domestic flights within Canada, cannot charge “more than one fare for person with disabilities who: are accompanied by an attendant for their personal care or safety in flight, as required by the carriers’ domestic tariffs; or require additional seating for themselves, including those determined to be functionally disabled by obesity. However, each Airline has its own policy of how to obtain this status. For both Air Canada/Jazz and WestJet, the attendants travel at no charge other than applicable taxes.
    To access the forms for applying to Air Canada/Jazz call the Air Canada Medical Assistance Desk at 1-800-667-4732.
    For the complete process and necessary forms from Westjet go to: http://www.westjet.com/guest/en/travel/special-arrangements/special-needs/one-person.shtml
    Our family used the Westjet One Person One Fare and was impressed with the simplicity and quick turnaround time. We paid our daughter’s full flight cost and I (mom) flew for the cost of the taxes. Definitely, worth checking out, once approved it is for 2 years before it is reviewed again.
  3. What is The Access 2 Entertainment™ Card?
    This card provides free admission (or significant discount) for support persons accompanying a person with a disability at member movie theatres across Canada. The person with the disability pays regular admission. This program was developed by an advisory group of nine national disability organizations, in conjunction with Cineplex entertainment. You can apply online at: www.access2.ca. There is a $20 admin fee to be paid. The website also lists more attractions besides theatres that now accept the Access card.
  4. What is the SAID program all about?
    SAID stands for “Saskatchewan Assured Income for Disability,” and is intended to be a long-term income support for people with significant and enduring disabilities. The program is a Saskatchewan Gov’t program operated through the Saskatchewan Ministry of Social Services. One important detail is the applicant must be 18 years old. I spoke with a representative over the phone and she clarified several points for me. The first point being that this is not a “welfare” program under the old definitions used, secondly the income is on a sliding scale depending on need and current employment, and third it is not a onetime sign up for life, it is monitored, and can be used for short periods or for the long run. The policy manual is available online at: www.socialservices.gov.sk.ca/SAID. The representative stressed that each person is an individual with varying needs so, first, call to talk to a representative from Social Services who will do an initial assessment and then book an appointment (1-888-567-7243). I learned that full time secondary students do not qualify, students remaining in High School after the age 18 qualify even if they are living at home, so basically it is a family decision so check it out.
  5. What can you do with old wheelchairs?
    Check out this website if you have an old chair to donate: http://worldaccessproject.org thanks to Shelley for the information. * Remember wheelchairs supplied by Abilities Council go back to the Council you cannot donate them.
  6. Looking for employment opportunities?
    Look at the employment information and opportunities through the Federal program, Partners for Workplace Inclusion Program online at: http://www.ccrw.org/pwip/index.php. There is also a program with the Abilities Council called Partners in Employment and SACL, also has Employment Opportunities Consultants to assist individuals with job searching.
  7. Where can I find current information on Folic Acid?
    Current information and research can be found on this very user-friendly website at: http://www.folicacid.ca/.
  8. Why do we support the activities of Rick Hansen Foundation?
    Scooters for Grant
    The Rick Hansen Foundation is pleased to share that as a result of generous donations during the 25th Anniversary of Rick’s Man In Motion World Tour, the Foundation will be granting Invacare Mobility Scooters for persons in need. If you, or someone you know, are in need of a mobility scooter, please visit the grants page on our website to learn more about eligibility requirements and the application process for this unique opportunity. The Rick Hansen Foundation is committed to addressing vital needs within the spinal cord injury (SCI) and disability communities by funding research that has provided better care and outcomes for those with an injury, and contributing to accessibility initiatives that foster inclusivity for people with disabilities. Check their website for more information: http://www.rickhansen.com/language/en-CA/Home.aspx.
  9. With the new Childrens’ Hospital of Saskatchewan, will the programs our children currently receive at KCC through the Alvin Buckwold Child Development Program remain?
    During the initial planning phase for the Children’s Hospital of Saskatchewan, a significant amount of work went into the review and development of the recommended scope of services to be included within the facility. Through this process, it was recommended that the Child Development Program would remain in its community-based location at Kinsmen Children’s Centre. One of the important considerations was the perspective of staff and clients who appreciated the current programming at KCC and its community location rather than located at a tertiary acute care facility.

Our Spinal Cord Team
Alvin Buckwold Child Development Program
@ Kinsmen Children Centre in Saskatoon

Dr. A. Dzus, Orthopaedic Surgeon

Dr. A. Vitali, Neurosurgeon

Dr. P. Weckworth, Urological Surgeon

Admin. Assistant/Reception – Kaitlynn Antonenko
Pediatric Habilitative Nurse – Lynn Onushko

 

Left to Right: Lee Jasieniuk – Physical Therapist, Erin Minogue – Physical Therapist, Ashley Thauberger – Physical Therapist, Judy Bayda – Equipment Specialist, Monique Deault – Occupational Therapist, JoAnne Toh – Social Worker

Missing from photo: Lori Mulholland – Occupational Therapist


Bingo Report

SBHAS-N is still carrying a bingo license and is scheduled 4 to 6 times a month at Club West Bingo Hall located at 15 Worobetz Place in Saskatoon. We are making a profit of about $1500 per month.

This year’s bingo license states that we must have expenditures approved before payments are issued.
Once again, thanks to all of you who do your part in our fundraising.Submitted by
Shawn Scherr

Through the success of Bingo fundraising our Association funds registration and equipment costs for many programs. Remember to submit registration cost receipts to our Association for funding support! Check out the following programs:

  • Abilities Council, Quality of Life Recreation Programs including Slyp-Out, Camp Easter Seal, and Summer Fun. Their website: http://www.abilitiescouncil.sk.ca.
  • Saskatchewan Wheelchair Sports Association(SWSA) offers Athletics, Basketball, Curling, Rugby, Para-alpine skiing, Para-Nordic Skiing, Sledge Hockey, Target Sports, Tennis, and Water-Skiing. Their website: http://www.swsa.ca.
  • The College of Kinesiology at the University of Saskatchewan offers the PAAL program as well as the University School of Dance offers Wheelchair Dance at two levels, the Kids in Motion program, and the Agility Ballet Company (ABC Dance). For information contact Michelle Weimer(966-1005) or visit their website:
    http://kinesiology.usask.ca/community-programs/school-of-dance .
  • CLASI (Community Living Association Saskatoon Inc.) Fall/Winter Programs: Kids, Teens of Young Adults – call 652-9111 or email programming@clasaskatoon.org.

Make it happen for your children!


June – Spina Bifida Month – BBQ

Thank you to Cinammon for organizing then quickly rearranging the BBQ to be moved indoors in June, 2012. Everyone able to attend had a great time visiting and playing the guess the weight activity (thanks Brenda)!!

Did you know…
There are now “latex free” Tensor Elastic Bandages. Finally! Check your local pharmacy for latex-free products available including TENSOR by 3M, and First Aid Elastic Bandaging! Be sure they say “latex-free!”


Milestone Reached for Children’s Hospital of Saskatchewan

This 3D model shows where the new hospital will be located next to Royal University Hospital in Saskatoon. Visit www.saskatoonhealthregion.ca/chs for more details!

After nearly a year of design work, on July 12, the Ministry of Health announced it had approved Saskatoon Health Region’s early (schematic) design for Children’s Hospital of Saskatchewan. This came after teams of families, patients, staff and physicians worked countless hours to create a basic layout for the new hospital focused on how services could be provided more efficiently, and more importantly, how the design could support an improved hospital experience for patients and their families.
The new maternal and children’s hospital will be located in Saskatoon and will be connected to Royal University Hospital. The early design includes all private patient rooms with natural light (windows) and space for family/parents/supportive partners to stay in the room with the patient. It will have numerous dedicated family spaces and play areas.
Work has continued through late spring and into fall with teams focusing on the details in each space. Heather Thiessen, a patient and family representative on the emergency department design team, was involved in creating the early design and has stayed involved through this next detailed design phase.
“I wanted to make sure when a patient arrives at the hospital (to the emergency department), they will not get lost in the chaos of triage and the waiting area. I know this can occur, but I feel so confident this is being looked after,” says Thiessen. “Everyone tried so hard to be there to make sure every little detail was looked at. I think Saskatoon will be proud of the work. And, just knowing patients and families were included in the design, will make the pubic rest assured all their needs will be remembered.”
To ensure the hospital meets the needs of families from across Saskatchewan, Saskatoon Health Region spent the past few months reaching out for ideas. The team worked to capture ideas from children and teenagers currently in pediatrics at Royal University Hospital. In May, the hospital’s project team travelled to northern Saskatchewan and worked with more than 200 children and teenagers in schools to get their design ideas. They also talked with local care providers and families. They then travelled to central Saskatchewan in June to capture more information. In addition, in late July, they held an open house in Saskatoon where more than 100 people, including many families, dropped by to share their opinions. This was further complimented by on-line interior design surveys, and hundreds of design ideas from children and teenagers across the province, many of which came from southern Saskatchewan. These ideas were received after Saskatoon Health Region invited school divisions and families to work with children and complete a few key design activities.
“We have heard clearly that this hospital needs to feel like home for patients and families, no matter where they live,” explains Craig Ayers, project director for Children’s Hospital of Saskatchewan, Saskatoon Health Region. “We know it needs to make small children feel safe and teenagers feel comfortable. We know it also needs to appeal to adults – pregnant women and new mothers and their families. We know it needs to reflect all of Saskatchewan.”
Through this fall, the project team will finalize the design details for the hospital. Construction is scheduled to start in early 2014 and scheduled for completion in late 2016.
Thank you for the update from :
Michele Bossaer, BComm., BJourn.
Communications Consultant – Children’s Hospital of Saskatchewan
Saskatoon Health Region

Children’s Hospital of Saskatchewan…

  • will be a hospital for newborns, children and teenagers.
  • will be a hospital where pregnant women are cared for and where babies are delivered.
  • will have a new emergency department with clear separation of adults from children and teenagers.
  • will have operating rooms dedicated to surgical procedures for children and teens.

We Are So Proud!!

This was a very exciting year for the Saskatchewan Women’s Wheelchair Basketball Team! After a very hectic season for the Hot Wheels, full of practices and travel to attend many tournaments, they competed at Nationals in Richmond, BC in May, 2012.The event was held at the Richmond Oval, site of the recent Olympic Games. Despite being such a young team, they had two wins and two losses, and their fans were so very proud of their performance! From the enthusiasm at the gym, to meeting incredible players, to learning more about classifications and true team spirit it was such a great experience. Coached by Lisa Franks, the provincial team was made up of six players from Saskatoon and four from Regina. Members from our Association who were part of the team included Carly, Christine and Chantel Scherr as well as Ashley Baerg.


Christine Scherr – Carly Scherr – Chantel Scherr

Jared and archery!

Sheri performing at Dance on the Saskatchewan

Sledge Hockey in the Saskatoon area!

Thanks to two grants we have received from Sask Sport, and with the help of the Sask Wheelchair Sports Association, there are hopes of a sledge hockey club in the Saskatoon area!
Recently SWSA put on a ‘Have a Go’ sledge evening at the Aberdeen rink with pizza and bowling following up the sledge hockey. Fun was had by all!
We are having another ‘Have a Go’ event on Saturday, November 3rd at the Aberdeen Rec Complex from 2:15 to 3:45. To register contact Brenda or Ted Carter tbjcarter@sasktel.net or call 306-382-5593.
Our goal is to get enough interested individuals so that we can have weekly sledge hockey sessions. We will email all members again with the information on any sledge hockey activities as they are planned. You need to be a member of our SB Association in order to get the emails.


Spina Bifida & Hydrocephalus Association of Canada National Conference
Dream – Live – Inspire: October 7 – 9, 2011 in Edmonton, Alberta

Congratulations and thank you to the Conference Planning Team from Northern Alberta for all the work and long hours they put into making the National Conference such a huge success. Thank you to their Organizing Committee and numerous volunteers and individuals that made the Conference so successful and worthwhile for everyone who had the opportunity to attend.

1

The Saskatchewan Group Photo
– What a Good Look’in Bunch!!
These were all the members from our Association and their families that were able to attend! A great showing from Northern Saskatchewan!

Coference Summary Reports submitted by Association Members

1) Executive Functioning Tips and Techniques
Presented by Dr. Petrina Pelletier, Clinical Neuropsychologist

Executive functioning -An umbrella term
– Identifies a specific set of cognitive functions
– Opinions of what these functions are
– Definition – Mental capacities to formulate goals, planning them and carrying them out
– Problem solving for attaining goals
– Goal directed behaviour itself
– Regulation of behaviour
Higher level thinking Skills – decision, planning, organizing and evaluating
Functionally – day – day
Awareness/self appraisal of one’s strength and weaknesses
Ability to set realistic goals for oneself, plan and organize to achieve goals, self initiating behaviour to pursure goals.
Self inhibit behaviour
-can be incompatible with goals
-self evaluate performance
-flexibility shift sets, strategies and solutions if necessitated by task demand
Component Function
Initiation, planning, organizing, problem solving, reasoning, mental flexibility/shifting, inhibition, self regulation and self monitoring
Executive functioning is a critical factor in life, social, academic, vocational and independence
Common area of concern with spina bifida and hydrocephalus individual with management of care
Literature –root of some of the difficulty with spina bifida and hydrocephalus individual
Never clear cut or just one thing
Consider developmental trajectomy
What is reasonable to expect
As brain grows and develops – connection with frontal lobe and other brain areas too
Late adolescence frontal lobe completes development
Precursor skills in preschool
Skills develop throughout childhood
Environmental demands/expectations shift as children reach teen years.
This is not always the case of individuals with developmental issues or medical conditions
Deficits -External brain
Individuals create an external brain
Modify environment to compensate for areas of difficulties
Change external world before trying to change internal world
Change environment, change task, and the way you interact with the individuals
Teach the skill, differing expectations for 5, 11 year old versus 15
Differing expectations for those that have other cognitive or learning issues
Identify a specific area to work on and concentrate on that provide just enough support for individual to be successful
Be positive, collaborative, make support part of everyday interaction
Keep support in place for as long as needed and gradually reduce supports as individual masters the skill.
What can we do about deficits?
-variety of strategies, need to try strategies to find a good fit.
Initiation – acting on idea, reinforce initiation throughout the day, make things routine so less initiation is needed. Smoother life will go. Break larger tasks into smaller components – less overwhelming. Ues cues – verbal, visual or electronic. Involve the individual and discuss what will work.
Planning-verbalize to individual how you plan, talk to them about what you are planning. Create step by step plans on paper.
Walk them through steps, prioritize, use a visible calendar or agenda, embrace routine.
Organizing – a place for everything and everything in its place. Keep expectations reasonable use routine.
What can we do about problem solving and reasoning?
Break it down into components, help individual brainstorm, teach an approach to problems.
Is this a problem, options or solutions, which is best option or solution., what are the steps to implement solution, implement the solution. Monitor progress – alter if necessary, evaluate outcome.
Evaluate different options, write them out
Mental flexibility or shifting, individual could be stuck, give choices when possible, discuss life chores, what alternative choices or actions might have been. Plan ahead or practice might provoke anxiety, Anxiety can lead to rigid thinking. Help the individuals realize when they are being inflexible.
Inhibition – most difficult to change, clear and consistent feedback, develop a signal or key phrase. Teach strategies to think first. Practice
Self regulation- recognize emotions and triggers. Emotional Control – Breathing and counting.
Provide feedback, use real life experiences, teachable moments, practice
Self monitor, provide clear feedback, observations, videotaping, do in the moment, provide structure for self evaluation.
ACCEPT THAT THRE IS A CAN BE A DISCONNECT BETWEEN ‘KNOWING AND DOING’
And that’s okay if that is all that you get from these scratch notes.
Submitted by Shelley Elder
2) Topic: Empowerment for Parents and Caregivers: Raising Up and Coming Adults
Speaker: Mia Fairley (parent of young adult with SB)
Key Points: Parents’ Roles
1. Be Your Child’s voice – you know their history, their pain, their symptons -remember you can learn more -remember you can teach others
2. Document and keep a binder – make notes during appointments -document feelings and observations -create and use surgery sheets, procedure sheets, appointment sheets -ask for reports and make copies for the binder -list the profession team and their secretary names and numbers
3. Ask Questions – check the internet for info (with caution) – ask a support group for info – have one other person at the appointments – at appointments slow down the info until you understand it completely
-listen to your instincts
4. Ask for Help – exhaust any means you can when seeking help – learn from others, gain strength from others, and join local associations, as there is strength in numbers
5. Know that You are Capable – surround yourself with positive, supportive people -mental and physical exhaustion can contribute to unclear perspectives, be sure to take care of yourself, your child needs you. Your Role in Relation to Your Spina Bifida Child
1. Share your knowledge with them, (give them the medical history binder you upkeep when they are ready for it, get them involved in putting in information)
2. If you want to help them overcome obstacles, DON’T be one!
3. Support their decision-making (at age 18 you need you and your child to sign information sharing and release forms with each doctor they see so you are privy to the information)
4. Be careful you don’t crush their dreams, don’t assume they can’t do something – they might not be a specific chosen career but may find another choice in a related field
5. Mia shared 5 Tips to guide your child to independence: – Identify all of their strengths and gifts and list them, Get involved in peer groups, sports, arts, associations, Get them on the computer, Educational assessment every 2 – 3 years, and Document and make copies of everything.
Summarized by Bev Turgeon ( I have created a medical binder for Sheri that has been so helpful this past year, if you are interested in seeing it, give me a call @ 933-0427).
3) Topic: What’s New on the Medical Side of Spina Bifida and Hydrocephalus Treatment
Speaker: Dr. Keith Aronyk

Dr. Aronyk shared what the future looks like for spina bifida, focusing on fetal surgery including endoscopic treatment of hydrocephalus, spina bifida and tethered cord. At a more futuristic level there is research and exploration of molecular genetics treatment of spina bifida being done. He also spent a considerable amount of time answering questions. We took special interest in his explanations of how hydrocephalus can affect the part of the brain that controls hunger and the relationship between hydrocephalus, tethered cord and syringomyelia. Although this is a short summary, it was a very informative, current presentation. Dr. Aronyk has a vast knowledge of spina bifida and is so eager to share.
Summarized by Bev Turgeon
4) Topic: Easing the Transition, Tips for a Rewarding Post-Secondary Experience
Speaker: Matt Davis (Professional Adult with Spina Bifida)

Matt spoke about his experience at Post-Secondary College and summed it up in 5 points.
1. Self-mastery/self-advocacy is Key. Learn to speak up, tell them what you need, tell them about your disability and when there is misinformation work together to make it right rather than complain about it. Get to know the Disability Services Office Well!
2. Cut the cord – independence is key, learn from your mistakes on your own. Dial 9-1-1 for emergencies; for non-emergencies – use your head!
3. College Survival Skills include visiting the College beforehand, meeting with the Profs beforehand, attend classes, keep up with assignments, get involved, ask for IT help if needed and above all know the 4 C’s –
Clothes (laundry and repair) Cooking (your own meals)
Cleaning (house and self)
Confidence (knowing you can do it and then do it).
4. TCPB (Taking care of personal business) as hygiene and meds are very important to yourself and others around you. Do your own bathroom care or arrange for an personal care attendant. Above all – stop, look, and pay attention to your body.
5. Tips for Getting Prepared – research school options, financial aid, ask questions, select a major, meet with the Disability Services well ahead of time, check out the accommodations and know your rights.
Matt shared a very powerful quote: “The only disability in life is a bad attitude!” ~ Scott Hamilton.
Two websites Matt recommended were http://www.ccdonline.ca (Council of Canadians with Disabilities), and http://www.neads.ca (National Educational Association of Disabled Students)
Summarized by Bev Turgeon


Spina Bifida and Hydrocephalus Association of Saskatchewan – North

Executive and Board Members

Laurel Scherr – President
351 Kenderdine Road
Saskatoon, Sask.
S7N 3S9
Phone: (306) 249 – 1362
Cell: 270-3488
Fax: (306) 249 – 1362 (phone first)
Email: lscherr2@sasktel.net
Term: 2010 – 2013
Cinnamon Martel – Vice President
711 Beechmont Lane
Saskatoon , Sask.
S7V lC9
Phone: 933-4501
Email: c.martell@shaw.ca
Term: 2009-2013
Shelley Elder
114 Waterloo Crescent
Saskatoon , Sask.
S7H 4H5
Phone: 477-0819
Cell: 220-62229
Email: d.elder@shaw.ca
Term: 2009-2013
Linda Renaut – Past President
215 Addie Crescent
Saskatoon, Sask.
S7N 3C5
Phone: (306) 249 – 0475
Email: lrenaut@shaw.ca
Term: 2001 – till present
Jacqueline Jewell, National Board Representative
P.O. Box 214
Kenaston, Sask.
S0G 2N0
Phone: (306) 252 – 2867
Email: jewell_23@hotmail.com
Term: 2009 – 2013
Bev Turgeon – Newsletter Editor
P.O. Box 873
Martensville, Sask.
S0K 2T0
Phone: (306) 933 – 0427
Email: bturgeon@sasktel.net
Mrs. Brenda Carter – Secretary
P.O. Box 2476
Martensville, Sask.
S0K 2T0
Phone: 382-5593
Cell: 380-5138
Email: tbjcarter@sasktel.net
Term: 2010-2013
Gene Layton – Treasurer
22 Britnell Crescent
Saskatoon, Sask.
S7H 3X8
Phone: (306) 374 – 7438
Email: glayton@sasktel.net
Term: 2009 – 2013
1 Our board is here to listen, learn, and represent you and your family! Please contact board members if you have questions, suggestions or are able to volunteer for any event or program!

Membership Form

Association Membership… Our Association is growing and new members are always welcome. We need to keep our membership current! The membership costs are: $25 per year or $65 for 3 years.

With your membership you also are registered with the SBHAC and receive our local newsletter, minutes, volunteer opportunities, voting privileges, funding opportunities, access to all programs, activities and social events. Please complete and return the following membership renewal today!!

To print a copy of the current membership form, click here.


Did You Know!

Spina Bifida Education Binder

If your child’s school needs a free Educator binder please contact:
Karen Baerg (306)254-2792 or Laurel Scherr (306) 249-1362

We are on the web!!
See us at:
http://www.sbhasn.ca/index.html

Thank you to our webmaster: Mr. Dave Elder!!

Be sure to check out the
National Spina Bifida website at:
http://www.sbhac.ca

There are many interesting features from research to news items to informative useful links!

Spina Bifida Association of Sask.  – North Chapter:

c/o Laurel Scherr
351 Kenderdine Road,
Saskatoon, Sk
 S7N 3S9
(306) 249-1362

e-mail: lscherr2@sasktel.net

symbol_lg3