coming together december 2015

inside

Continued on page 8

Build upon your child’sstrengths . . . . . . . . . . . . . . . . . .2Michelle Archer

Living in community iswithout boundaries . . . . . . . . . .4

Carole Chaisson

Tristen’s Story . . . . . . . . . . . . . .5Lisa and Tristen

Active Youth . . . . . . . . . . . . . . . .6Sue Horne

Helping create a life for herself . . . . . . . . . . . . . . . . . .7

Julie Smith

A National Family Leadership Series . . . . . . . . . . .9

...to create change

Coming Together is compiled andproduced by the CACL FamilyLeadership and Volunteer EngagementAdvisory Committee to highlight thepower of families to effect changeand advance Inclusion.

together

Chair, CACL National Family Agenda Task Force

I recently had the immense pleasureof attending the internationalconference “Claiming FullCitizenship—Self Determination-Personalization-IndividualizedFunding.” All critical elements ofeveryday life, if our sons & daughtersare to claim their right to live incommunity always. As a parent, itwas overwhelming at times, to hearall of the great progress from othercountries, including best practiceswithin Canada, knowing the wayservices have declined in my ownprovince of Nova Scotia. It is a wake-up call to me as a parent. I know mydaughter will not have a future of fullinclusion and citizenship if I do nottake action now. I also know that acollective community, no matterwhere we live, is more powerful thanone voice alone.

My daughter has enjoyed anincredible, inclusive lifestyle in hercommunity thus far. I desperatelywant the same for her future—afuture where she is living incommunity, interdependently on herown with the supports she requires tocontinue to be successful in her lifenow and always.

So, what did I learn? Within Canada,24% of the aging population will beover 65 by 2030 which impacts all ofus as the issue of disability &dementia follows us as we age, alongwith the looming legalization ofassisted suicide. That there isextensive inequality throughout ourcountry in how individuals withdisabilities and their families aresupported and there continues to behigh unemployment.

Michael Bach talked about the realityof government cutbacks and thewithdrawal of supports and servicesjust as the legalization of assistedsuicide is pending. What does thismean for our children’s future?Perhaps a little disconcerting. Sowhat needs to be done to revitalizefamilies and communities? This iswhat I heard...that a Vision for a goodlife for our sons & daughters is oftenlimited by lack of imagination &knowing what is possible. Thereneeds to be a renewal and a focus onfamily values, vision, dreams,aspirations. And that families mayrequire support in navigating andfacilitating inclusion, including

Message from Barb Horner, Chair

coming

A National Family Leadership newsletter Volume 8, Issue 2 December 2015

2 Coming Together • December 2015

I’d like to introduce you to ourbusy family. We are theArcher’s and are a family of five.My husband Drew and I havebeen married for 15 years. Ouroldest son is Connor, he is 12and has PDD NOS—a form ofAutism. We also have fraternaltwin boys Joseph and Jamesand they are 10 years old.

Connor is vey active in anumber of community activities– he is involved in a non-adapted Show Choir programwith his peers at Class Actstudios in Regina, and inseveral Special Olympicsprograms including peeweebowling, curling, athletics,bocce, and golf. He hasrecently started participating ina church youth group.

We became involved in theSpecial Olympics pee weebowling program when he was5. We needed opportunities toget him connected with hispeers and bowling was a greatfit. Recently he has expressedan interest in other SpecialOlympics programs so he hasjoined bocce, golf, curling andathletics.

Connor loves to sing and is verymusical. To build on thatstrength and interest weenrolled him in a learn to singprogram at age 9. He thentransitioned to a musicaltheater program that includeddance. Since the dance routineaspects of musical theater werebecoming increasingly difficultfor him, he then moved over toa show choir program which has

no dance component—singingis the focus. This has workedout great for Connor.

Along the way, the biggestchallenge were othersunderstanding his capabilitiesand also a lack ofunderstanding (or unwilling tolearn) of his disability—hisstrengths and challenges. Whenthere were challenges it wasoften because people wouldassume that he was doingthings on purpose when in facthe couldn't control it. Forexample, Connor will often‘stim’ in front of mirrors andblurt out things….these arebehaviors that he works hard tocontrol but they do make somepeople uneasy unless you knowConnor. Yet despite hischallenges…. at the end of it

Build upon your child's strengths By Michelle ArcherSaskatchewan

L to R: James, Michelle, Connor, Joseph and Drew Archer.

Coming Together • December 2015 3

all… he can sing! He is a greatsinger!

There have been some bumpsalong the way. Once, he wasasked to discontinue a program— not because he couldn't dowhat was required but becausethe teacher was frustrated thathe couldn't act like the otherchildren. One has to wonderwho has greater challenges…Connor or the teacher?

In helping us address situationslike this, the support of otherfamilies has been essential. Inaddition, the staff andadvocates of SaskatchewanAssociation for CommunityLiving (SACL) are always thereto listen and offer support andadvice. I am connected to over200 families through aFacebook group that Iadminister called theSaskatchewan Parents ofChildren with Autism SpectrumDisorders. Social media groupsare a wealth of information andsupport for families.

School has been challenging forConnor (and for us). He doesnot have school friends anddoes not socialize with any ofhis schoolmates outside theclassroom. He has not beeninvited to a schoolmate'sbirthday party in the entire 5+years he has been at his currentschool. This is incrediblyfrustrating for me as his mom!We haven’t been able toovercome that obstacle despiteseveral “What is autism”presentations in his class, to his

school peer group. You canshow people why reality is whatit is with autism but you can’tforce acceptance. So therecreational and social activitiesoutside of school are my son'ssocial network and provide hima place to be who he is and toform positive relationships withothers. We believe theseactivities and the relationshipshe will form will be critical tohis long term and full inclusionwithin community.

Just like with any child, I wouldrecommend to other familiesthat you start to enroll yourchildren in programs that theyare interested in—build uponyour child's strengths! Try outprograms offered by SpecialOlympics or a local arts orrecreation group. Inform theleaders if you feel that it'snecessary. Sometimes it isnecessary to disclose the natureof the disability and sometimestelling the group leaders aboutthe disability creates aperception of your child thatdoesn't allow your child toreally show who he can be.Only you know what's best. I'velearned that sometimes it's notworthwhile to disclose and itwas the wrong decision, but Ilearn from my mistakes! Now Iam more cautious about howmuch I share and to whomabout my son’s disability whenstarting a new program because

I don't want any limitationsplaced on him.

So my message here is that ourchildren with different abilitiescan achieve and succeeddespite any roadblocks! It takesa lot of hard work on your part,and a lot of advocating andeducating others on the abilityof your child. It takes thick skinfor those times when the battleis tough. But every battle scaris worth it when you see thesmile on the face of your childwhen they succeed, when theyare thriving in a group and whenyou see that they are becominga part of the greater community.My advice to you is to staystrong, reach out to otherparents and organizations forsupport and know that you arehaving a huge impact not onlyon your child, but on thecommunity you live in.Inclusion benefits us all!

Connor’s 11th birthday, celebrated atMagic Kingdom and Walt Disney World.


As the newly elected VP ofPEIACL, I am truly excited toparticipate in moving our Islandtowards a place where living incommunity is withoutboundaries to those withintellectual disabilities. Afterserving 30 years with theCanadian Military, in myretirement my desire to stayactive in community in ameaningful way led me to, workwith my brother Gordon todevelop a life where he wouldlive in a community and activelyparticipate.

Gordon was born in 1966 an erathat has stuck with him. Hispassions are music andcooking. He enjoys mostgendres of music with a bias for60s rock. The passion forcooking is in his blood, as bothhis father and sister were chefsin the Navy.

Born in a family of modestmeans and limited education,coupled with a diagnosis ofEpilepsy and mental (R word)by the age of two was thebeginning of many struggles forthe entire family. This stigmaleft our parents with manyconcerns and unansweredquestions about Gordon’sfuture.

School at five years old was nota given for Gordon as with otherchildren. Mom did not thinkthat she could register Gordonfor school, given his disability.A family friend told her that shecould not simply keep him

home and that he had to go toschool. Our father was ondeployment with the Navy atthis time and mother waited forhis return to discuss thesituation further. Together theybegan the process ofregistering Gordon in a schoolfor children with mental (Rword) disabilities. For Gordon itwas a terrible experience andafter two years in thiseducational facility, our parentswent to work to have himregistered in a public school ina “special class”. Gordoncontinued in special educationclasses to completion of HighSchool, graduating in 1984.

Following High School, and forthe next 20 years, theopportunities to develop lifeskills and experiences werelimited to what family andfriends were able to offer.There just seemed to benothing for him that our parentswere made aware of or werecomfortable with, given hisearly education experience.Gordon mainly stayed homewith family. In the mid 90s Iwas able to offer him the “tripof a lifetime”, he accompaniedmy children and I to Disney inFlorida. Shortly thereafter our

Living in community iswithout boundaries

father passed away suddenlyand a huge void was left inGordon’s life.

Gordon became the “man of thehouse” as he continued to livewith mom. In 2004, mom andGordon packed their belongingsand moved to Prince EdwardIsland. During the process ofregistering him for financialassistance, we were madeaware of Community Inclusionsagency. The staff came to mymother’s home for all themeetings and the outcome wasthat Gordon was employed on a“part time” basis for three daysa week at the Sandwich Factoryin Bloomfield. He even learnedto make a resume and developinterview skills to the point thathe was hired on his own merits.He continued this employmentuntil March 2007, when mom’shealth issues required them tomove back to Nova Scotia toreside with my husband and I.Subsequently, both of us weretransferred to Ontario and momand Gordon continued to residewith us. During our time inOntario we were able to showGordon many attractions,Niagara Falls, Toronto Zoo,Marineland, and of courseCanada’s Wonderland where

By Carole ChaissonPrince Edward Island

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Tristen’s Story As told by Lisa and TristenOntario

When Tristen was borneverything seemed to beprogressing normally and thenslowly he began to disappearinto his own world. We receivedthe diagnosis that that Tristenhad autism when he wasaround 18 months old and wewere told that he would nevertalk, that he would have noemotional attachment to peopleother than to use them for hisown for fulfilment, and that hewould be institutionalized bythe age of 13.

Tristen was silent for manyyears.

He had many meltdowns whichincluded flapping and moaningand he didn't make direct eyecontact.

We were living in Bracebridge atthe time and Community LivingSouth Muskoka was involvedright from the start. Theyhelped us get crucial resourcesin place.

When Tristen was four years oldwe moved to Huntsville andbecame involved withCommunity Living Huntsville.Tristen is now 19, so we havebeen receiving support for 15years.

Tristen was the first child inMuskoka to start intensivebehavioral intervention therapyknown as IBI. He really pavedthe learning path for manypeople to follow. It took years ofhard work and commitment and

then Tristen broke his silence atage 7.

I wouldn't be able to do all ofthis without Community LivingHuntsville. It takes a wholecommunity to raise a child.Community Living Huntsvilleassists me with piles ofoverwhelming paperwork thatneeds to be done on an annualbasis for the government.

As a parent I did a lot of fightingon Tristen’s behalf and wouldcome in with guns a blazing. Iwasn't going to take no for ananswer. Community Living stafflistened to our concerns andideas. They did the finessing tosoften and refine our approach.

Grade 8 was a very difficultyear. There was nothinginclusive about the end of thatgraduating year for Tristen. Thesupport we received throughCommunity Living Huntsvillehelped Tristen with thetransition into high school.Community Living Huntsvilleadvocates on Tristen’s behalf tomake sure supports are in placeand that his voice is heard. Highschool has been a blessing forTristen. There is absolutely100% acceptance andbelonging.

Community Living Huntsville iscurrently assisting us with thetransition into adult services.

Tristen is on a waitlist to receivesupports and is waiting forfunding for one-to-one supportswhich he requires. The futureafter high school is a littleuncertain right now.

Tristen enjoys computers,nature, swimming, fishing,canoeing, animals, books,movies, and is a faithful patronof the library. Tristen especiallyloves art and is an exceptionallygifted artist. He has had a fewart shows in Muskoka and hasbeen featured in Arts andEntertainment of What’s Upnewspaper this summer. We feltover whelmed with pride andcried tears of joy watchingTristen, the artist, working hisart shows.

The ultimate goal is to be ableto afford to make a living fromhis artwork one day and thevision is to develop a website tosell his work globally. Tristensays that he wants to be afamous artist.

There is an art critic in theToronto area who believes in

Continued on page 8


Hi ! My name is Suzanne Horneand I am the proud mother ofthree children. Along with abeautiful daughter who is 26years old I have 21-year-oldtwin boys, Daniel and David.Daniel and David were bornwith Down syndrome in St.John’s at the Grace Hospitalback in 1993.

At that time, I wasn’t sure whattheir future looked like, but Iknew that they would besurrounded by love andencouragement from family andfriends. As we navigated ourway through Janewayappointments and thenprimary/elementary schoolyears I began to allow myself tothink in advance about whattypes of lives they would leadas teens and then young adults.

Our first exposure to organizedactivities outside of our localDown Syndrome group was theMount Pearl chapter of SpecialOlympics which has blossomedinto a wonderful fulfilling wayof life for both boys.

Approximately five years ago,we were advised of a pilotproject entitled “Active Youth”that the City of St. John’sRecreation and ParksDepartment were hoping tocommence offering. They werelooking for 10 participants withmild to moderatedevelopmental disabilities toparticipate in recreation andleisure activities at variouslocations around the city. Ourfamily immediately signed up

and we have participated in thisprogram for five wonderfulyears. The program has allowedmy boys to develop newfriendships, increase their self-esteem in a friendly, relaxedatmosphere. Their activitieshave included indoor sports,exercise classes, socialactivities, t-ball, snowshoeing ,skiing and campfires etc.

This program is part of the Cityof St. John’s Recreationprograms and has offeredwonderful exposure to my twoboys along with 8 other youngmales and females ranging inage from 15 to 21 years of age.The caring, nurturingenvironment offered by theCity’s counsellors has onlyincreased the effectiveness ofthis program. Every week, myboys are greeted withenthusiasm and genuine

interest by their counsellorsand are made to instantly feelwelcomed and included in avery typical recreationenvironment. We went throughan initial application/interviewprocess to ensure that theprogram would be a good fit forour children. They were asked aseries of questions about theirlikes/dislikes and the type ofprogramming that wouldinterest them. Since that day,we haven’t looked back! Thankyou to the City for identifyingthe need for a program like“Active Youth”.

Parents should and must takethe time to exploreopportunities to have theirchildren enrolled in programsthat will help them grow andflourish. Our communities arethere to help us achieve ourgoals.

Active YouthBy Sue Horne Newfoundland


Helping create a life for herselfBy Martha MacLeanPrince Edward Island

One of the first things I worriedabout, as I lay in hospital,recovering from an emergencyCaesarean section, was:

HOW WOULD MY DAUGHTER BETREATED?

You may think that I was puttingthe cart before the horse. Afterall, my daughter, Margaret, wasless than 24 hours old, and mayvery well be flown to Halifax, NSfrom PEI due to possiblyunstable congenital heartdefects. Still, there it was,staring me in the face. Mydaughter was different. Shewas born with Down syndrome.I knew two things for sure. Iloved her unconditionally. I wascommitted to helping her createa life for herself.

I needn’t have worried. From anearly age, Marg made friendseasily. She was non-verbal, butnever had a problem getting herpoint across. She was enrolledat a regular daycare center from2 years old and is still friendswith many of those sameclassmates today.

I paid special attention to whomshe seemed to gravitatetowards and kept lines ofcommunication open betweenher caregivers, her pals, andmyself. Frequent and constantcommunication ensured I knewwho her friends were. When

she was young, I set up “play-dates” for her. Now that she isolder (grade 8), and uses aniPad, she can let me know whoshe would like me to call on herbehalf.

When it became apparent thatMarg would always need somekind of supervision, I helpedher cultivate her friendships sothat when the time came thatthe social divide between herand her peers started to widen,most of her friends have movedinto a guardian role yet theystill hang out as peers. Forexample, Marg comes home onthe bus after school most dayswith a peer her own age. Thesepeers are responsible yetrespectful of Marg and trulyenjoy being with her.

Don’t get me wrong. Thesepeers have a lot ofresponsibility on theirshoulders when they comehome with her and areaccountable for her safety andwell-being. Margaret’s fundingthrough the province of PEIensures that I am able to put ina regular workday while Marg ishanging with a friend and issafe.

Am I paying for her to havefriends? No. On severaloccasions, these peers put inextra time and refusecompensation for it. It is

obvious to me in the way theyinteract that they are friendsfirst. Of course, there are stillthe parties and sleepovers towhich she is invited and theseare not guardianship situations.Her friends’ parents like havingher around too!

People tell me that we are solucky to have such great peoplearound Marg. Yes and no.

Yes, we are blessed to havesuch wonderful people aroundus, but it is not luck. It is aconcerted effort to help Margcreate a life of inclusion. Nowthat she is older, I am proud tosay that a lot of it happensnaturally.

Caption xxx


Living in community is without boundariesContinued

developing a plan for the future.

That innovation is key! Andfamilies cannot wait forgovernment to tell them what isavailable, rather families needto tell government what it is wewant for our families and ourchildren to live in communitiesas full citizens lifelong.

One presenter suggested thatthe Keys to Citizenship includesimple concepts such as“Purpose, Relationships,Support, Funding, Home, Love,Life & Freedom” – goals we all

might aspire to, to live a goodlife. Another presenter talkedabout Key Lessons learned—that we need to know &highlight best practices &achievements of inclusion, theimportance of government &community partnerships andthat we have to respect theevidence of what we know to betrue – continuing to learn,evolve & innovate. As familieswe have much wisdom,experience, passion and thepower to make the changes weneed! I heard very loud andclear that CHANGE happens at

the community, local level andthat families have always led thecharge for change in our countryand that right now, MichaelKendrick said, that, “A STRONGADVOCACY VOICE IS OUR ONLYSAFEGUARD” for our children’sfuture.

The most heart-searing commentmade at the closing Plenary, forme, (my wake- up call), was by amother who said, “Howimportant it was to me, when myson died at the age of 30 yearsold, knowing that he had a life.”

Gordon was able to ride thelargest roller coaster in Canada,Bohemouth. This adventurecame to a close when I decidedto retire in 2010 and follow myhusband’s career back toHalifax. Following a one yearstay in Halifax my husband alsodecided it was time to retire.

The retirement plan, move toPrince Edward Island and havemom return to her roots. In2011 we executed that plan andmoved to West Prince and intoour present home. Armed withthe knowledge of CommunityInclusions and the FinancialAssistance available, weimmediately embarked on theprocess of registering Gordonfor the available benefits.During this time we wereintroduced to a housing option

in Alberton that Gordon wasmost excited to explore andwhich he now calls his own andhe continues to buildinterpersonal relationships withpeople outside of his family.

This new lifestyle has allowedGordon to flourish and heregularly attends dances, playsand concerts. He enjoysbowling and socializing with thepeople he meets at the bowlingalley. He continues to lovecooking for friends at his house.While his employment situationremains a work in progress weare exploring some optionsthrough the Ready Willing &Able initiative sponsored byCACL. Gordon has developed inmany ways that we had not everimagined.

Message From Barb HornerContinued

Tristen's talent and she iscurrently buying his art. Shefeels that Tristen will becomeestablished and when he does,she can say that she has someof his original work.

Tristen hopes to find a mentorin the Huntsville area who couldassist him with developing andgrowing his art business.

Tristen is making his voiceheard more, his confidence isgrowing and he makes more eyecontact when engaged inconversation. Life is peaceful.The Community LivingHuntsville Support staffconnected to says that “Tristentakes obstacles and turns theminto opportunities”.

Tristen’s StoryContinued

As part of the Canadian Association for CommunityLiving’s Coming Together… to Create Change:National Family Leadership Series, CACL, incollaboration with participating Provincial/TerritorialAssociations for Community Living, is offering itsValues, Vision and Action Workshop. The Values,Vision and Action Workshop is a weekend retreatprovided to groups of 20-25 family members.

The workshop is highly interactive, consisting ofindividual and panel presentations, small groupsessions, and a variety of informational videos.Participants will gain a deeper understanding of thehistory, values and vision of the community livingmovement, the changing perspectives on disabilitywithin our society and the role families can play intranslating this vision into a ‘good life’ for ourfamily members.

Families’ values, vision, passion and commitmenthave inspired and led this movement for over 60years. The purpose of the leadership seriesis to share our values and vision and to provideresources, support and tools to assist families inimagining change, pursuing it, connecting forsocial change and leading the way to inclusion.

A National Family Leadership Series

Why Participate in the Values,Vision and Action Workshop?• To imagine a good life for our familymembers and a world where we arerecognized and valued as part of thediversity of our communities.

• To explore the power of families andfamily leadership in changing how societysees, understands and accepts disability.

• To develop strategies to put our valuesand vision into action.

• To build the strength of family-to-familyconnections as the foundation of ourgrassroots movement for communityliving.

“I recommend everyone possible toattend. This type of workshop is lifechanging in a most positive way.”Workshop Participant, Maple Ridge, BC

Values, Vision and Action Workshop in Your Community

If you have a group of families and are interested in finding out abouthaving a workshop organized in your community please contact CACL [email protected] or 416-661-9611 ext 227, or your Provincial/TerritorialAssociation.


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