S P R I N G N E W S L E T T E R 2 0 1 1

Journeys Families Take pring is here and we are moving into summer, I ready for the AGM so we can discuss and vote. Thank can hardly wait for the sun! you Yves for working on these with me. S As we move toward the annual general The Toronto visit also gave us the meeting for this year I ask that the provincial contacts opportunity to visit with author, Claire Tacon. Her examine their commitment to CAWS and if they want information was included in the last newsletter. She continue, take a leave or have someone else fi ll their shared her experience of being able to speak with position. Ontario now has two contacts, a great way many folks since the publication of our last newslet- to share the work load! Thank you to those that have ter and is very appreciative with those of you for your committed. The AGM has been set for June 24th at willingness to share your stories. Claire has a book 3:00 p.m. mountain time. Please let me know if you coming out this fall, so watch for “In the Field”. are interested in participating as the AGM is held by This past March Sheena was in- conference call and I have to set up the connections. vited to speak at a conference in Toronto, of which While recently in Toronto I had her cousin Bradley and I had the pleasure of being a chance to meet up with Yves Theoret, one of the companions for the trip. Sometimes there just needs to Ontario contacts. We talked about how the families be someone younger in attendance during travel. You of Ontario are trying very hard to form a network that see, one of Sheena’s goals in Toronto was to attend will connect and support families on a provincial basis. the Much Music Live headquarters taping and the age We also talked about each province getting together to group is 18-25 and well - I just don’t quite fi t that age formalize and become a group that can provide input group so - thank you Bradley for coming with us - you and feedback to the provincial contact. What does that are a life-saver! look like: a society / a network in each province, that The conference was to encourage provides organized concerns and needs to our CAWS youth to look towards a future that is wide open as national organization? I ask that you think about our they choose to make it. There were about 100 partici- conversation so we can discuss at our AGM. We are pants including youth, family members, transition fa- also working to revise our Bylaws and will have them cilitators, teachers and many others. What a great way

3 CAWS Contacts 4 Across our Country Inside 6 Music in her Heart 8 Dream Makers this Issue... 10 Research 11 Youth Voice 15 Bulletin Board 16 Donation Form SPRING NEWSLETTER 1 APRIL 2011 to have our youth look at following their dreams when and Sheena was so frustrated that she closed the store. they hear the dreams of others and how those dreams It was Halloween day and not a good day to close the have taken on reality. Not only did Sheena share her store. So, with much conversation and understanding story of being an entrepreneur but also we heard about staff, who were waiting to go to work, we managed a young man who is a racecar driver and trying out to have the staff go and pick her up and get the store for his NASCAR license; an artist/ open before noon. Journeys families take! musician who has great ideas about Sheena’s brothers do not live close, how to carry those into the future, so are not there for immediate help and assistance but and a young woman who has her we have many friends who are close by. We now have level one in Child Care. What an a long list of family and friends who put their names inspiring conference for youth. on a list that I email out to everyone before we leave I am not sure if I and they are then connected if someone isn’t able to mentioned before but traveling is fi nd Sheena for a time or if she needs some help. They something Fraser and I avoided will take her out to dinner or pick her up after her unless Sheena was coming - it was night at Kinettes or evening at Gitter’s, take her shop- just too much planning to leave her ping or just watch a movie with her. We would not be behind and ensure that all would able to take our time away if not for the friends who go well. Two years ago we decided have become surrogate family! that we should be able to start and I send my thanks to Carol, Andrea, travel without Sheena in our company and she should Lisa, Tara, Brittany T, Lara, Bradley, Lionel and Mon- be able to survive at home - we would just work to put ica, Alise, Bonnie, Deb and Blake, Wade, Matthew, supports in place. So we planned a vacation in Hawaii, Verdeen, Grandpa Swayze. So after many years we not Canada where it would be easier to come home if do take a chance and we do leave the country and this we had to, but across the ocean. The fi rst time we went, time for three weeks with Sheena joining us shortly to we were just settling and just starting to relax when we celebrate her 24th birthday in Maui!. received a call from Sheena that she had H1N1. What With this newsletter, you will receive do we do? Do we pack up and go home or see what some Toonies for Time hearts. Please support CAWS we can put into place from Maui. We stayed. Sheena’s with this fundraiser. Proceeds will contribute to the wonderful store staff made the commitment to Sheena printing cost of our new brochure, this newsletter - closed the store and went to stay with Sheena for a and our 2013 family conference. It is great to see few days. Sheena was in quarantine for 7 days and she provincial contacts getting families together over the survived and so did we, with the commitment of the summer. Check out page 15 in this newsletter to see staff. what is happening in your province and don’t forget to The next time we went, there was a take lots of pictures to send to Gloria for our summer problem with loneliness and transportation to work. newsletter. We managed to get staff to take care of that issue by having them pick her up. Then the third time we Orvella Small thought we had the transportation issue all taken care President of as Sheena would only have to take the taxi once and Coming to you from Maui! what a disaster. The taxi came but didn’t wait for her

CAWS Annual General Meeting June 24, 2011 For details contact Orvella

SPRING NEWSLETTER 2 APRIL 2011 A S S O C I A T I O N C O N T A C T S

PRESIDENT MUSIC CAMP COORDINATOR Nova Scotia Orvella Small Basia Morawski-Bergeron Anne Louise Desrosiers Box 5025 102 MacDonald St. 1675 Cambridge St. High River, AB T1V 1M3 Kirkland, QC Halifax, NS B3H 4A5 (403) 649-5604 H9J 3Z7 (902) 422-0270 (403) 652-0716 (514) 697-0178 [email protected] [email protected] [email protected] New Brunswick PAST PRESIDENT Alberta Marianne Mepham Diane Reid Jaimie Tinling 44 Calais Crescent 209 Inverness Park SE 32 Cascade Place Lower Coverdale, NB E1J 2K9 Calgary, AB T2Z 3K6 Cochrane, AB T4C 1G6 H: (506)384-9426 (403) 257-3581 (403)855-1115 (403)837-7408 W: (506)860-2374 (403) 660-2155 [email protected] Marianne.Mepham-Newton [email protected] @horizonnb.ca British Columbia [email protected] TREASURER Cindy Sanford David Olson Box 26206 Newfoundland 248B East 21st. Street Richmond, BC April Williams North Vancouver, BC V6Y 3V3 1680 A Torbay Rd V7L 3B6 (604) 564 7779 Torbay, NL A1K 1H2 (604) 990-7718 [email protected] (709)437-7596 [email protected] [email protected] Manitoba EDITOR/SECRETARY Coralee Crowe Ontario Gloria Mahussier 27 Regis Drive Monique & John Plessas 19 Pereverzoff Place Winnipeg MB R2N 1J9 163 Wolverleigh Blvd. Prince Albert, SK. S6X 1A8 [email protected] Toronto, ON M4C 1S1 (306) 922-3230 [email protected] (306) 922-3457 (fax) MB Convenor for Family Events [email protected] Lucille Beaudin Yves Theoret Box 30 [email protected] MEMBERSHIP St. Eustache, MB R0H 1H0 Mike Mahussier (204) 353-2551 Quebec 19 Pereverzoff Place [email protected] Ken Brownridge Prince Albert, SK. S6X 1A8 514-823-1012 (306) 922-3230 Youth Correspondent (306) 922-3457 (fax) Sheena Small Saskatchewan [email protected] [email protected] Kelly Fraser 3434 Eagle Crescent VIDEO LIBRARIAN Nunavut/N.W.T. Prince Albert, SK S6V 7N5 Barbara Morawski-Bergeron Position Vacant (306) 922-3783 (514) 697-0178 Volunteer required [email protected] [email protected] Visit our website www.CAWS-CAN.org If you would like to fi nd out more about the role of a Provincial Contact contact Orvella Small, CAWS President If you would like to volunteer in your province, call your Provincial contact person.

SPRING NEWSLETTER 3 APRIL 2011 A C R O S S O U R C O U N T R Y Ontario Ontario Walk For Williams Discover! This is "Hugs For Williams Syndrome's" fi rst walk. On Sunday, June 5, WS families from across Ontario (and beyond!) will be holding an out- The walk is in support door gathering to connect with other WS families. En- of all individuals with joy a day in the sun and join us with extended family Williams Syndrome, by and friends. Activities for all! Bring your own lunch. raising awareness and donating to SickKids, Date: Sunday, June 5, 2011 the hospital that supports (rain or shine) many children that are Time: 10am – 2pm affected by WS. Location: Earl Bales Park, North York Children with Williams syndrome need Details: 4169 Bathurst Street (south of Sheppard; easily accessible from ongoing medical care, and early interventions (such as highway 401) speech or occupational therapy). As they grow, they struggle with things like spatial relations, numbers Interested? You can contact us and abstract reasoning, which can make daily tasks at: [email protected] or visit a challenge. Most people with WS need supportive http://CAWSontario.blogspot. housing to live to their fullest potential. com or follow us on Facebook:

facebook.com/cawsontario. Please join us for our fi rst Walk for Williams! Sheri Meadows (mother of 4-year old girl with WS) It is important that everyone who can, Yves Theoret (father of 2-year old girl with WS) please come out and support us on this day! There will Ontario contact be a $15 registration fee that can be paid the day of the event. Please email [email protected] for pledge forms. If you require any additional information Alberta please call Tina at (416)451-9894. Event Details Action to Inclusion June 5, 2011 10:00 AM - 1:00 PM It is an interesting time for families Address: 12287 10th Line City: Stouffville who have children in Education in Alberta as the Min- istry of Education moves towards the goal of inclu- Saskatchewan sion, “Action to Inclusion”. Families are anxious too see how this initiative will make education better for Join Us ! their sons and daughters in the system. Come join us at the Saskatoon Forestry Farm, So far there hasn’t been very much 1903 Forest Drive, in Saskatoon on July implementation in the school systems as they struggle 9 from 10:00 am to 4:00 PM. with funding cuts and the new initiative. We all under- And if you want to help or for stand that this will take time but hope that the invest- more information, give me a call at ment of money and time will not be for waste. 306-922-3783 or email at schmister@ This is the link if you are interested in hotmail.com. taking a look at where Alberta Education is heading. http://education.alberta.ca/department/ipr/ See you soon! inclusion.aspx

Kelly Fraser Saskatchewan contact

SPRING NEWSLETTER 4 APRIL 2011 A C R O S S O U R C O U N T R Y Ontario Manitoba Universal Children’s Day Manitoba Reunion November 22,2010 was Universal Our family gathering takes place in rural Manitoba! Children's Day. On this day, our daughter, Christabal, Hope to see all in Clandeboye, Manitoba participated in the Pride & Joy campaign for Sunday June 5, 2011 ErinoakKids. She did 500 hula hoops and raised $500 1:30 p.m. for the Campaign. Join us at the residence of Debbie & Albert Roy ErinoakKids is the largest children’s 928 Norwood Rd. (road 86 just east of #8 hwy) treatment centre in Ontario and supports over 9,000 Clandeboye , Manitoba families and their children with physical and devel- phone: 204-728-2256 opmental disabilities in our growing communities of email: [email protected] Halton, Peel, and Dufferin. Christa was only Each family is asked to bring 3 years old, when she a pot luck item to share a diagnosed with William meal and don’t forget to syndrome. ErinoakKids bring your lawn chairs. (or as I prefer to call it - the healing centre for Start practicing your songs Special Need Kids and for the Idol/Karaoke tal- their parents) was the fi rst ent show in the afternoon. treatment centre which Each family with a “participant”nt” is supported us through this asked to bring a gift card as gift for the entertainment diffi cult time. They taught winners. us (as her parents) to ac- cept the reality and showed us ways to include Christa For more info call Debbie 728-2256 or give Lucille a in the community as an accepted individual. This fund call at 353-2551. Come and join the fun! raising gave us an opportunity to give back for all they have done for us. About Christa: Christa is a very special child who only knows to love anything and every- thing. She loves to sing, dance, and of course hula hoop. Saskatchewan

She is our pride and joy. Family Conference

SACL’s family conference “When you meet a person “Their Lives - Our Vision” with a disability, if you see only the exterior, you may experience pity, but if you look deep inside, you will Come join us in Prince Albert, June 10 in discover the person’s strength, not just their weakness. the Prince Albert Inn. Learn about the Registered They have an uncorrupted pure soul. They want to be Disability Savings plan, supportive housing options in seen as beautiful in the eyes everyone.” SK, transitioning your children from school life in the community and much more! Jovani Ratnarajah Grants are available for families to attend. Parent Contact Kim at 955-3344 or [email protected] Inclusion ... Endless Possibilities

SPRING NEWSLETTER 5 APRIL 2011 M U S I C I N H E R H E A R T y name is Nancy Goemans. I am a mother Jack Singer, I was called and told she could not pre- of 4 wonderful children. Two of my daugh- form. Taya new every song, every word and did all the Mters are special needs, and my Taya who is 8 hard work that all the other little ones did. is Williameque. However genetic's aside after reading It was heart breaking for all of us to see her your web site, provided to me by Jennifer Buchanan, sitting in the audience singing while all the others Taya is totally Williams. were on stage. She was even listed in the program. If it were not disappointing it would be funny. Our 7 year old , Lane did preform but we have since I am the mom of the little girl who was not allowed to removed both girls from the program. Inclusive is not sing at the Calgary Girls Choir at the Christmas event. part of the Artistic Directors repertoire. I did not know or was not able to fi nd your site She has been named one of Calgary's "Women in all my searches when Taya was born. The world of of Vision" and will be receiving an award at the much search engines are a funny thing publicized YWCA Luncheon in and ever changing, but I am very the upcoming month honour- happy to fi nd you (CAWS)now. ing "women of vision". Sadly I am at a cross roads with this year I will be doing all the our Taya in terms of education, design and marketing work for social interaction etc. I was also the YWCA as they are a client of hoping to talk to you or other mine, but I will not be attending. mom's with children Taya's age in I am attaching a picture of hopes that we can develop some my family - I am sure you will friendships for her. have not trouble picking out out I am not sure what I can Taya. I guess my hope for this tell you - other then I have felt is that I can replace this missing very alone with our Taya for a event, that Taya so loved with long time and I am excited about another might involve the Wil- the opportunity to reach out for liams society. I had put Taya in Taya and myself. Taya has the Between Friends this summer but "cocktail personality CAWS she would not go back after the describes on the site. She is great fi rst week. with adults, not bad with her own age. Really strug- Taya felt given the group she was put with, gling to learn her letters and is the funniest person on that she had,"not one to play with". Taya was beyond the planet. She touches everyone. the ability of that group and yet she was not being Well not every one. Our Taya had preformed welcomed into the "average" world. Perhaps you can in earlier performances with the Calgary Girls Choir help me fi nd a place for my "dolly girl". Thank you! but when she came to the attention of the Artistic Director just in time for the Christmas program at the You can contact Nancy through Orvella at (403) 649-5604, (403) 652-0716 or [email protected]

SPRING NEWSLETTER 6 APRIL 2011 A M O T H E R ‘ S B L O G

hy do people feel the necessity to comment Experience life to the fullest, take risks and chances, and on everything that comes into their head, capture the memories as you go. do some people know no fi lter? I know W http://jesslynnhaydel.blogspot.com/ this isn't a necessarily bad question. But how should I answer, "oh is she too small, do you fi gure you because your child is bigger?" "Maybe your child's just big" "oh I'm sorry she has Williams syndrome" I am not apologizing, nor telling you her syndrome so you can automatically give me the "oh I'm sorry face, I didn’t know." Why when they auto- matically fi nd out they have a disability or have been formally diagnosed with something their whole de- meanour changes? So this is where the problem comes in with me, it’s basically like I have to explain it to anyone. Who wants to play with her, or talk to her, or expect them to answer her questions, because she Well REALITY check --- so are our doesn't have the noticeable different facial features of a kids. They can succeed, they can overstep the bound- once again "normal" child they think their shouldn't be aries that were set for them, they can prove wrong. wrong in the inside. Do not get me wrong, some children are defi nitely off It’s all exterior to people now a days. worse which is unfortunate some cases are devastat- It’s what you see on the outside, we do judge a LOT by ing, some are inspiration, some are all the same. But the cover. We don't think about the inside, their heart, they are all stories, stories that need to be shared be- their soul, their brain. Instead if you are larger you cause no matter what our children have accomplished automatically eat too much instead of maybe having a more in life than they were told they would be. I know problem, hereditary, genetically, or addictive. You're at some point a doctor put a permanent restriction on to think you must be anorexic, not maybe she has GI your child. problems, or maybe she does eat a lot and for some I know when Sky was born they reason doesn't gain weight. You see a kid with a wheel said there was no way that she would be out before 8 chair or walker and automatically think of they may weeks, well she was home and healthy at in 4 weeks. never walk poor child, I would hate to have to live I think if we hope, pray, love, and have faith all things life like that. But maybe these people suffer their own are possible. Do not let someone put a limitation or problems every day and don't need you to judge and treat you or your child differently. We are all the same come up with your conclusions on your own. That's whether, we look it or act it, we are Gods people and the problem today we are so quick to judge, put in our we all go through our daily life struggles some harder input, and think we know it all, when it’s not the case. than other, but there is no reason to compare. We have We don't have hope for people, we don't think they will to deal with what we are dealt with. get better, we always think their life must not be as Hand in hand, together. good as ours because they aren't "like us" So let’s throw out that word "normal, average" Because who is normal today? Who is aver- age? Everyone I know has some issue, whether it be fi nancially, physically, mentally, family related, friend Mark your Calendar related, there on some sort of medication, they are August 2013 seeing a therapist, they are in rehab, they have some sort of addiction. All these people have some sort of CAWS Family Conference disability to but they aren't labelled forever, they are thought to be able to overcome and succeed and be Saskatoon, Saskatchewan who they were supposed to be.

SPRING NEWSLETTER 7 APRIL 2011 Dream Makers

Helen Deckert Kitchener, ON Bronze sponsor Wandrienna Everdiena Shibley Calgary, AB Silver sponsor Fraser Small, High River, AB Silver sponsor Sharon McColl Edmonton, AB Silver sponsor Marianne & David Newton Lower Coverdale, NB Silver sponsor Jim & Diane Reid Calgary, AB Platinum sponsor

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Dream Maker Level of ______for a total of $______

__ in celebration of or __ in memory of (please submit your story separately with photos if possible and elaboration of the occasion )

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SPRING NEWSLETTER 8 APRIL 2011 FAMILY Dream Maker

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Hotel room for 2013 Family Conference 3 nights (Conference room rate)

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Sponsor on Conference T-shirt

Silver $1000 $200 a year for 5 years

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SPRING NEWSLETTER 9 APRIL 2011 R E S E A R C H

Researchers probe linguistic The researchers read aloud a one-sentence caption and asked participants to point to the cartoon patterns of Williams syndrome it matched. The scenes depicted characters from The Children with Williams syndrome are chatty, Simpsons television series. have rich vocabularies and love to tell stories. Yet they For example, the caption 'Lisa is pushed by have trouble learning certain complex rules of gram- Bart' goes with a cartoon showing Bart pushing Lisa, mar, according to a study in the October issue of the not one of Lisa pushing Bart. For 'Marge is remem- Journal of Speech, Language and Hearing Research. bered by Homer,' the correct cartoon shows a thought Williams syndrome is a rare genetic disorder bubble of Marge over Homer's head. that leads to intellectual disability, anxiety and an Delayed development: exuberant friendliness. Prevailing wisdom says that The researchers found a similar problem with Williams syndrome severely diminishes spatial and psychological passives in fi ve adults with Williams mathematical reasoning, while leaving language skills syndrome, Perovic says, bolstering the idea that the intact. The new work, however, fi nds that children with Williams syndrome brain is delayed for a certain pe- the syndrome do not understand passive sentences that riod, and then stops developing. use abstract verbs, such as 'love' or 'remember.' The new study also found that, for both Several groups are beginning to delve into spe- actional and psychological passive sentences, the Wil- cifi c linguistic abilities of children with developmental liams syndrome group performs signifi cantly worse disorders, such as autism and Williams syndrome. than do all three control groups. By comparing these groups with healthy controls, This contradicts previous studies, which found researchers hope to learn more about how language no differences between children with Williams syn- normally takes root in the brain. drome and IQ-matched controls in understanding ac- "Language is probably the most complex tional passives. The discrepancy could be explained by cognitive system we have," says lead investigator Ken the sophisticated matching methods of the new study, Wexler, professor of brain and cognitive science at the Perovic says. She also notes that although children Massachusetts Institute of Technology. "You can get a with Williams syndrome do not understand actional lot of insight into a system when you see what happens passives as well as controls do, their performance on when it breaks down in various ways." psychological passives is far worse. The new study found that children Other experts take issue with aspects of the with Williams syndrome have trouble understanding study's design. Actional passive sentences are more 'psychological passives,' which use more abstract commonly heard in everyday speech than are psycho- verbs, such as: 'The toy was remembered by Mary.' logical passives, which often sound awkward. "This The distinction is important in normal development. is something I think is likely to really infl uence the Healthy children learn actional passives by age 5, but results, particularly in kids with developmental dis- don't learn psychological passives until around age orders," says Inge-Marie Eigsti, assistant professor of 8 — suggesting that they use some mental shortcut to psychology at the University of Connecticut. process actional passives. Wexler and Perovic are testing comprehen- "Whatever typical kids fi nd diffi cult, sion of passive sentences in children with autism as you see the same thing in Williams syndrome," says well. The work is unpublished, but Perovic says the co-investigator Alexandra Perovic, a teaching fellow in 15 participants tested so far "showed an atrocious linguistics at University College London. "The pattern performance" on both kinds of passive sentences. This in Williams syndrome is just much, much slower, and is in stark contrast to children with 'pervasive develop- kind of never gets there all the way." mental disorder not otherwise specifi ed,' who do well Wexler and Perovic tested 26 chil- on actional but not on psychological passives, and to dren with Williams syndrome, aged 6 to 16 years, and children with Asperger's syndrome, who score well on three groups of healthy controls who were individually both types. matched to the Williams group based on test scores of Linguistic measures — such as how well a non-verbal intelligence, word recognition or grammati- child understands passive sentences, or the richness of cal understanding. their vocabulary — could be useful in genetic or brain

SPRING NEWSLETTER 10 APRIL 2011 Y O U T H V O I C E imaging studies as a way to subgroup individuals with A Life Time Dream autism. One of the things I always dreamed of doing "Once you've identifi ed linguistic subtypes, was going on a holiday on my own. I knew wanted to you could go back and see if there were different ge- go to a place where it was nice and warm. netic profi les for those groups," says Barbara Landau, When I heard about Cancun, Mexico I was professor of cognitive science at Johns Hopkins Uni- nervous and excited. I had saved some money from my versity, who studies Williams syndrome. income tax return and gift money, my pay from work She points out, for instance, that children who and then a little from my parents to help me pay for carry a duplication of the Williams syndrome region on this trip. So my girlfriend Cara, her mom and I went to chromosome 7 have trouble with language, a dramatic Cancun Mexico for a week. Cara has been my friend departure from the verbose children who carry the cor- for a very long time and I knew she would help me and responding deletion. keep me safe too. "The back and forth between linguistic testing The weather was soooo and genotyping will be very useful," Landau says. nice and warm. Sometimes the evenings were cool but the warm References: weather made me feel very good. 1. Perovic, A. and K. Wexler J. Speech Lang. Hear. The people were very caring and friendly. There was entertain- Res. Epub ahead of print (2010) PubMed ment every night, which I loved. 2. Clahsen H. and M. Almazan Cognition 68, 167- The food was awesome - the 198 (1998) PubMed beach was fantastic! I did some 3. Bellugi U. et al. Am. J. Med. Genet. Suppl. 6, 115- horse back riding and then I 25 (1990) PubMed got to swim with the dolphins, 4. Maratsos M. et al. Cognition 19, 167-191 (1985) which I have wanted to do for a PubMed very long time. Dolphins 5. Eigsti I.M. et al. J. Autism Dev. Disord. 37, 1007- are so friendly, they have 1023 (2007) PubMed ways to show signs that 6. Eigsti I.M. and L. Bennetto J. Child Lang. 36, they are friends with you 999-1021 (2009) PubMed and they even have ways of talking. We did an all https://sfari.org/news-and-commentary/open-article/-/ day tour to a Mexican ruin asset_publisher/6Tog/content/researchers-probe-lin- but I didn’t like it at all. It guistic-patterns-of-williams-syndrome was too long of a day and I didn’t fi nd it that interest- ing. Mom always says to try new things even if we might not like it. The cell phones don’t work very good and it is very expensive to use Mexican phones but I got to text my parents and they would text me back which was good for me and also I think good for them. I thank my Mark your Calendar wonderful parents for letting me go to Cancun, Mexico August 2013 with my girlfriend and her mom. The Mexican language was fun to try and so I learned “ Hola” means “hi” – CAWS Family Conference “Senorita” means “Miss or Girl” “Senor” means “Guy or Man”. Saskatoon, Saskatchewan Our last day was hard to leave because we didn’t want to leave the warm weather and beautiful surroundings. I would go back in a heartbeat to Cancun but now maybe I will try some other place. Maybe you will share your travel stories and that will give me some ideas. Jodi Reid

SPRING NEWSLETTER 11 APRIL 2011 Y O U T H V O I C E Update on my New Experiences Colby to sing in Prince Albert Hey everyone –well here we go again! EA Rawlinson Centre My store is done and I have been in operation PA Lions and PA Mental Health presents Colby for over 3 months now. It is great - Location, Location, Nargang. Colby is a Regina, Saskatchewan, based Location. Very busy! performer who pays tribute to both Elvis Presleand Roy I told you I would be going Orbison. to Much Music headquarters and I His performance at Telemiracle 27 in 2003 did. What a great time! My cousin opened the doors to many opportunities and he has been Bradley came to Toronto with us and increasingly busy performing ever since. He realized he came to Much Music headquar- one of his dreams when he performed as a special guest ters with me. We had a great time at Rory Allen’s Valentine Concert in 2004. In the fall - Emily Osment performed and I was of 2004 he had a wonderful opportunity to meet the on live TV – my family saw me and Jordanaires at an autograph signing session and sang my niece Abby thinks I am a “Rock Roy Orbison’s “Only the Lonely” Star” because I was on TV. Yahoo! with them. In February 2005 to And I am counting down the celebrate his 18 th birthday, he days until I go off to Maui. My folks traveled to Memphis, Tupelo, and tell me there are big waves and lots of surfers. I am Nashville and he recorded a demo thinking about trying out the surf - will see! at Sun Studios where Elvis and How about you? What does your summer look like? Roy Orbison started their musical Let’s talk! [email protected]. careers.

To purchase tickets on line visit: http://www.earawlinsoncentre.ca/events.htm#June My The MC for this exciting evening is non-other than new your CAWS Editor, Gloria Mahussier. store!

FAMILIES

Do you have a ququestion or concern? Call or email your Provincial contact person. They may be able to help.

SPRING NEWSLETTER 12 APRIL 2011 S U P P O R T C A W S

CAWS Annual General Meeting

June 24, 2011 For details contact Orvella

Thank you to those that renewed or purchased magazines! CAWS received a cheque of $408.99

Toonies for Time

Visit our website www.CAWS-CAN.org

Your gifts are what keeps us active and operating Interested in selling Toonies for Time hearts to help support CAWS?

Contact Orvella at 403.649.5604 or [email protected] CAWS Awareness week August 1 - 7 Th ank you for supporting CAWS.

SPRING NEWSLETTER 13 APRIL 2011 S U P P O R T F O R C A W S Your gifts are what keeps us active and operating. CAWS would like to gratefully thank individuals for their recent contributions. Thank you.

Our son Joshua was diagnosed with Williams syndrome when he was 2 1/2 years old. From a young age Josh was always smiling and wanting to In memory of hug everyone. Now that he is 11 years old he is that same smiley boy with Joyce Lois Nargang a twinkle in his eyes and so much to say to anyone who will listen. He is developmentally My darling grandma, delayed in all areas, but socially is really where he feels it. as you enter your new Individuals with Williams syndrome heavenly home, may have an extremely diffi cult time forming social bonds. They are very aware friendships are a 'normal' connec- you rest in peace for tion made between peers, but somehow cannot grasp which you truly deserve, the concept. This causes emotional distress at times and is very hard as a parent to watch. Health concerns For you will be truly missed and remembered for related to Williams syndrome are hypercalcemia and aortic stenosis. your love and honour in which we will preserve. SickKids has been a great support We love you always and forever and may over the years. Our son visits annually, but God be with you. unfortunately there are others that visit much from Irene and John Nightingale, Regina, SK more often. Please help us raise awareness and In Memory of Joyce Nargang, grandmother of Colby donate to SickKids by Nargang who has Williams syndrome. Joyce passed participating in our Walk away December 25, 2010. Grandfather Jim Nargang For Williams. requested CGI Information Systems of Regina, SK Warm Regards, send donation to CAWS. the Alas-Wilson Family Alec and Joshua

Tribute to Robyn Clair Seger from other Nanna (Helen Deckert), Kitchener ON, wishes her great granddaughter a Happy 6th birthday April 9th, 2011. other Nanna shares...We (our family) have a child with WS. She is my wonderful great grand daughter Robyn who has chromosome #7 missing. Robyn Clair has no fear and will walk and talk to anyone. Her mom, Sabrina, is very watchful and tells her what she has done is wrong. The rest of us wondered why she was so up-tight if Robyn, for example went out the door, without telling her mom where she is going. Now we understand more, why the lessons are like they are and have to be. It is for the child's welfare. The lesson as to be taught now because later will be too late.

Thank you so much Helen for sharing your wonderful stories as each experience teaches us all something new about our wonderful children with Williams syndrome. I am pleased that our newsletter is helping families.

SPRING NEWSLETTER 14 APRIL 2011 B U L L E T I N B O A R D

ADDRESS CHANGES COLUMN CONTRIBUTIONS Please send your contributions for future newsletter Please send your address changes features to : and corrections to: Gloria Mahussier Mike Mahussier 19 Pereverzoff Place Prince Albert, SK. S6X 1A8 19 Pereverzoff Place Phone: (306)922-3230 Prince Albert, SK S6X 1A8 Fax: (306)922-3457 phone: 306-922-3230 E-mail: [email protected] fax: 306-922-3457 [email protected] Across the Country: A column to share with families events across the country and encourage parents to write about accomplishments their child or sibling has made in regards to the individual with WS. Happenings Achievements, no matter how great or small, can be enthusiastically shared! June 5, 2011 Ontario family picnic [email protected] Helpful Resources: Resources such as video tapes, computer software, games, books, etc., that parents or “Hugs for Williams” walk the family’s interagencies have found to be helpful in Tina at (416)451-9894 assisting our children meet developmental milestones and achieve specifi c learning concepts. MB Family Gathering Clandeboye , Manitoba Medical/Educational information: Articles Debbie at (204)728-2256 concerning research and information pertaining to ongoing projects on medical and education issues.

June 7, 2011 Colby Nargang at the Youth Voice: A page to place and share works by AE Rawlinson Centre individuals with WS, be it an art sample, a photo, an Prince Albert, SK essay, poem, stories, etc.

June 11, 2011 SACL Family conference Website Bulletin Board: Ask a question or share Prince Albert , SK information. Please forward your bulletin board Kim at (306)955-3344 contribution to [email protected] with the words, “Bulletin Board” in the subject line of your email. June 24, 2011 CAWS Annual General Please allow one week for your posting to appear on the bulletin board. All questions to be posted will be Meeting conference call edited and reviewed before posting. To join call Orvella CAWS newsletter is published quarterly. Due to limited July 9, 2011 SK family gathering space, we may not be able to print every item received. Kelly at (306) 922-3783 We report items of interest relating to WS and will [email protected] provide a forum for other items of interest. CAWS does not promote or recommend any therapy, treatment, professional system, etc. We reserve the right to edit all August, 2013 CAWS Family Conference material. Saskatoon, Saskatchewan Visit our website What is happening in your province? www.CAWS-CAN.org Give your Provincial Contact a call! NEXT SUBMISSION DEADLINE June 30, 2011

SPRING NEWSLETTER 15 APRIL 2011 T H A N K Y O U from the editor: Thank you to Weyerhaeseur Canada, Prince Albert Division for the paper for this printing of the newsletter and to those that sent in contributions. The deadline for next issue is June 30, 2011. Gloria Mahussier

Your gifts are what keeps us active and operating. CAWS would like to gratefully thank individuals for their recent contributions. Thank you. Tribute to Alysia Roy on the occasion of her birthday from Barbara & Gordon Kizuik of Clandeboye, MB. Happy Birthday Alysia.

Tribute to Blair Ogilvie on the occasion of his 24th birthday from Raymond, Jesse, John and Joann Ogilvie of Hamilton, ON. Happy Birthday, Blair.

Tribute to Madeline Potier from Stanley & Dorothy Lawrence of Oshawa, ON

Thank you so much for our wonderful confi dential donors who contribute to our organization through: Employee donation made via United Way of Lethbridge & South Western Alberta Employee donation made via United Way of Central Alberta Employees & Pensioners Charity Trust via Ontario Power Generation of Toronto, Ontario Tribute to John Plante from Greg Plante, a Telus Team member who volunteered in the community and selected CAWS to receive this contribution. Greg would like this donation made on behalf of his son, John Plante who has William syndrome. Telus recognizes the volunteer efforts of their team members through the Dollars for Doers program. When a team member records a minimum of 50 hours of volunteer service in their community, Telus donates $200 to a registered charitable organization of his/her choice. C & C Landscaping & Construction of Pickering, ON donated to support sponsoriship to the Summer Music Camp from the Constantinou family. Thank you, so much for supporting this terrifi c camp as so much fun and joy is shared with each one who experiences it.

D O N A T I O N F O R M Attached is my cheque payable to CAWS in the amount of:

$100 $65 $35

AS A MEMORIAL TO ______

A TRIBUTE TO ______

ON THE OCCASION OF ______(Birthdays, Anniversary, Graduation, etc.)

Donations to the Canadian Association for Williams Syndrome are tax deductible. Canada Customs & Revenue Agency #879205516 RR001. All donations may be forwarded to: CAWS National Offi ce, P.O. Box 2115, Vancouver, B.C. V6B 3T5 Thanks for your support!

SPRING NEWSLETTER 16 APRIL 2011