Respite - it’s newer than you think!
Laura Schnellert

Thirty years ago, when my daughter was a young child, respite support was little more than an idea. Life was tiring. I was a single mom working full time. After a long search, I did find a wonderful child care centre for Karen. This was monumental at the time because kids with disabilities just didn’t attend day care.

After working all day I would pickup Karen and start our evening routine; Karen’s therapy, supper, often laundry and then get ready for the next day. Our evenings were stressful and exhausting. It seemed that I wasn’t getting a chance to just be Mom. Karen and I needed time to laugh and have fun but after our very long days and equally busy weekends there was little thought of a social life or time to myself. As much as I needed a break, there simply wasn’t a respite program for children that had physical disabilities.

At parent support meetings everyone was expressing a need for a break so a couple of parents from the Cerebral Palsy Association, Candice Phillips and Brian Stewart, along with representatives from the Spina Bifida and Muscular Dystrophy Associations agreed to take the lead and approached the provincial government about respite support. After letter writing, presentations and proposals, the parents’ request was successful. The government agreed to a pilot program. The intensive work that the parents invested had paid off. Candice volunteered to coordinate and track the respite hours for families. Once the funding was in place staff were hired and a schedule was created. Candice did an amazing job of coordinating the use of hours and all the families in the pilot were good about sharing hours. Cooperation was essential because government had to know the importance of this service to families.

The first summer the families shared 6 respite staff. We began receiving about 3 hours of respite a week. I used the time to attend organization meetings where I could gain information that would be beneficial to Karen and also to enjoy a movie.

Our first respite worker, Tracy, was wonderful. She would take Karen out, incorporate her therapy into play, and did all the sensory stuff that was so important for Karen’s development. It truly was a blessing to have the respite time and to have a great worker.

When the short term pilot ended the government was given the results and a new proposal to have the service continue on a regular basis. The planning efforts of the parents paid off and government agreed to provide an ongoing program. A coordinator was funded and this was the beginning of what is known today as Community Respite Service Inc. (CRS). A few years later the government formed the department of Children’s Special Services.

Having been involved with respite supports for many years I have seen some things change while others remain the same. The need has not changed. The respite program has really grown and it remains so important to families. It makes such a difference when families have a break and know someone is providing good care to their child. When families don’t have support they burn out. Governments seem to forget this from time to time so it is important for parents to rally passionately to save their supports - not just respite but equipment and medical supplies.

Families need to know that services (like respite) are not entitlements. Services are still susceptible to cutbacks, or worse. Families still need to continue the lobbying efforts that were started back in the late 70s and early 80s. Young parents and families can build on the work that has already been done by continuing to promote the rights of children. You have new ideas and new energy. Believe me, you can play a big part in building a secure future for your family and your children. Get involved for some amazing experiences.

FACEBOOK GROUP FOR CEREBRAL PALSY ASSOCIATION

Recently, the Board of Directors has discussed the possibility of setting up and maintaining a Facebook group for our organization. The benefits of such a group have been discussed as well as potential risks which may be involved. It was decided that the issue should be raised with the membership for consideration. Below are outlined very briefly the procedure under which this would happen as well as the above mentioned points which have been discussed.

PROCEDURE: A group would be set up on the Facebook social networking site under the name “Cerebral Palsy Association of Manitoba”. This would be a closed group which means people would have to request permission to join and a group coordinator would decide whether or not to let that person join. Once allowed to join, group members would be allowed to view notices on the group’s page as well as post notices or comments of their own to be viewed by other group members. Posted comments can be replied to on the group’s page which enables somewhat of a forum to be established where people can share ideas, advice and concerns.

BENEFITS: The benefits which have been discussed are as follows:

• A Facebook group could be a venue for posting CPAM events and notices.
• A Facebook group could offer a valuable social networking opportunity for our members who are familiar with and use Facebook.
• A Facebook group would have the potential to expose CPAM to and make connections with similar organizations across Canada and possibly worldwide.

CONCERNS: Some concerns have also been addressed as follows:

• Does having our members join such a group expose them to people who may attempt to exploit and/or take advantage of them?
• Is such a group really necessary for our organization?

PLEASE TAKE A MOMENT TO CONSIDER BOTH THE OUTLINED BENEFITS AND CONCERNS AND DECIDE IF YOU WOULD BE IN FAVOUR OR OPPOSED TO HAVING CPAM SET UP A GROUP ON FACEBOOK. CALL THE OFFICE WITH YOUR COMMENTS — 982-4842 — 1-800-416-6166.

SPENCER’S JOURNEY OF HOPE—OUR STEM CELL EXPERIENCE

Spencer was born Feb. 24, 2005 at 26 weeks gestation by C-section. He survived against all odds and spent 94 grueling days in the NICU. At age one when he was not hitting milestones that other kids were he was sent in for testing and was diagnosed with Spastic Dyplegia CP. After lots of research and treatments available we decided that Umbilical Stem Cell Therapy, available in China, was the best option available to us to improve Spencer’s quality of life.

Umbilical stem cells in China are donated from healthy full tern babies cord blood and are tested numerous times for diseases prior to being given to a patient. Upon consultation with the doctors in China and after they had reviewed Spencer’s medical history we decided on 6 stem cell treatments which consisted of 1 treatment stay at the hospital (we were able to stay with him), 2 physical therapy (PT) sessions per day as well as 2 occupational therapy (OT) sessions per day. OT in China is different than in Canada. For Spencer it consisted of acupuncture, massage and electro wave therapy (a tens unit).

The cost of stem cell therapy is quite a financial commitment so we fundraised for a year in order to cover the entire cost of the trip. The total cost does include everything related to the stem cell therapy as well as a hospital room for parents. Flights, food and laundry are not included.

Our experience in China began in Nov. 2009 and lasted until the beginning of Dec. Spencer did very well with all the treatments especially considering the number of times he had been given and IV and spinal injection in which he was put to sleep due to his age and inability to sit still long enough to have the treatment done. After each spinal injection the patient is required to lay flat for 6 hours to prevent having severe headaches. Spencer also did well with this and would just lay there watching his movies.

Daily life at the hospital in Qingdao China included PT every morning followed by electro wave therapy. A little bit of a break for lunch then PT again followed by acupuncture. The PT they provide is very intense and is second to none that we have ever received in Saskatchewan or Manitoba. If Spencer got nothing else out of the treatment he had it was worth the knowledge we were given regarding his physical therapy.

Acupuncture was another valuable thing. Spencer has had Botox injections in his legs numerous times but I always found they were not as helpful as the doctors said. Acupuncture was 10 times better than Botox and a lot safer too. Spencer did not like the treatment because he could see the needles but we plan to continue acupuncture here when he is mentally ready for it again.

To date we have noticed Spencer’s hearing and speech have improved as well as his balance with and without AFOs. We did not know if we would ever see the day when our son would be able to dance and jump around without braces on his legs but we have officially met that milestone. The doctors in China say that with CP most people do not see results until 6 months after treatment so we are hopeful that we will see more for our son although we are happy with what has happened so far. We were not expecting a miracle just a chance to help Spencer have a better chance at a “normal” life. We are excited about this treatment and benefits for people with CP.

We met so many amazing people in China who were there for similar conditions and completely different conditions. We have gained friends from all over the world. It was a place to help our loved ones in a way that our countries have not yet adapted. As for miracles we did celebrate many of them with other people with other problems and also disappointment with those that did not see any results.

If you would like more information on Spencer’s journey please feel free to check our websites. New website is spencersjourneyofhope.com and old website spencersjourney.shawwebspace.ca. You will find contact information on the websites if you have questions. Please contact us.

CODY ZANKOWSKI “LOVE OF SPORT” GOLF TOURNAMENT

CPAM extends many thanks for the donation of $2571.00 from the 2009 golf tournament.

Please enter the 2010 tournament taking place on Friday, August 20, Kingswood Golf Club, LaSalle, Manitoba. For info and to enter please contact Cal Zankowski at 479-3588

Laura Schnellert with member Cal Zankowski at
the first “Love of Sport” Golf tournament “It was great fun”

RETREAT WEEKEND 2010

"OUT OF THIS WORLD"
Jodie Ogibowski

How else would you describe the CPAM Retreat on Mother’s Day Weekend, May 7th - 9th? Taking place at beautiful Camp Arnes on the west shores of Lake Winnipeg, the weekend theme was “Star Wars Star Trek”- Battle of the Stars” and what a group of stars we had! Members enjoyed various activities including cards, games, swimming or soaking in the hot tub. The return of the newly repaired pool lift enabled members to once again enjoy the use of the pool. For the outdoor lovers, strolling the scenic grounds or a trip to the corrals to visit the horses, sheep, goats and even a very shy Al Paca were enjoyable past times.

On the evening of Saturday, May 8th, members put on a fashion show dressed as their favourite intergalactic personalities. Some of the models included the Purple People Eater, the Princess Leia Quadruplets (clones gone wrong!), the Orks from Orkan and Queen Canada. Even the world famous ET made an appearance. This event was followed by an impressive talent show that included karaoke, lip sync, poetry reading, clarinet solo and even an original radio play. The comfortable accommodations, good meals and enthusiasm of all made this an enjoyable entertaining weekend. Hope to see you back for more fun in 2011.

Hilary, Elsie and Brian enjoyed their visit to the corral.

Chantal and Jannie “on the rocks”

Michael received the most votes for his amazing costume the “Arbiter”.

Serge and Myles hot tubing. They received the second most votes for being Sergeant Slick and the Dude & for their great looking legs!!!

The “crew” of the Battle of the Stars Alien Fashion Show. Everyone’s costume was inventive and remarkable.

Board & Association News

All Board members contribute to the success of the organization by continuously developing and refining our methods of providing support. Their skills, energy, ideas and expertise are truly appreciated.

Thanks is extended to Board members who supported the Stationary Bike Race by collecting pledges, riding and volunteering. Director Kim Legal is to be thanked for taking on the role of Bike Race Captain for the CP Pedalers. Thanks also to President Rebecca Ehnes for assisting Kim on Race Day.

Although the Board does not meet in July and August, it has already started to plan for the fall and has set the Annual General Meeting, (commonly abbreviated as AGM) of the Association for Tuesday, November 16 in the evening. The meeting place is to be determined and you will receive information prior to the meeting through the mail.

What is an Annual General Meeting? It is a meeting that the official bodies, in CPAM’s case the Board of Directors, are required to hold in accordance with our by-laws that govern the Association. An AGM is held every year to elect the Board of Directors and to inform members of previous and future activities. This meeting is important for members to attend because it is an opportunity to hear reports and receive copies of the Association’s financial accounts for the fiscal year. It is also an opportunity for your voice to be heard by asking questions and offering suggestions. Members in good standing (paid or been gifted their membership fee for 2011) will receive notice of the AGM not less than 7 days prior to the date set for the AGM.

What is the Association’s Financial or Fiscal Year and Membership year? The Association’s financial year starts September 1 and ends August 31 of each year. This means that all financial transactions of the Association should be completed by August 31st. The Association’s membership year is the same as our financial year. Membership is due Sept. 1 of each year.

Who is a Member? Any person (individual/family) who applies for membership and who is willing to support the purpose of the Association, who has paid the required membership fees, and who has been accepted by the Board, is a member in good standing. The Board shall be authorized to establish such other Honorary or Lifetime membership categories as it deems appropriate. The annual membership fees shall be determined by the Board of Directors. There shall be one vote at the AGM per family membership and one per individual membership. Proxy voting shall not be allowed.