Hello everyone!
I hope you all had a very happy Easter Isn’t it lovely to see the spring flowers coming out and the trees coming into leaf? I love this time of year when the nights stay lighter for longer This is a great time to start getting some outdoor exercise although you might still need your wellies on as the ground is so wet after all the rain we’ve had this year
Ihavebeengardeningandit’sareallygood waytostayfitandhealthy Walkingisgood tooandsometimesIwalkuptomylocalpark wheretheyhavesomeoutdoorgym equipmentforadults!It’sgreatfun
Inthenewsmagazineforparents,wehave informationaboutsomemorecharacteristics ofPrader-Willisyndrome,andwehavebeen lookingathypotoniaorlowmuscletone This meansthatyourmusclesaren’tasstrongas the restofthepopulationalthoughplentyof peoplewithPWStakepartinlotsofhealthy exerciseincludingtrampolining,horseriding andswimming.
Forsomeofyou,lowmuscletonecan makewalkingandexercisingfeel difficultanditcancausetiredness Evenifthisisthecase,gentleexercise isimportanttosayfit,andithelpsto keepyourweightdowntoo
We’vealsolookedatsleepproblems andIknowthatsomeofyouwillhave sleepapnoea Sometimesthismeans thatyouneedtowearaspecialoxygen maskwhileyousleep Iimagineitmust bedifficulttodothis Youmightstill haveasleepstudyathomeorin hospitaltocheckyoursleepapnoea
Lotsofyouwillalsohavesomething thatdoctorscallEDSorexcessive daytimesleepiness Thiscanbedueto beingaverylightsleeperandnot gettingafullnighttimerest
Ifyouwanttofindoutmoreabout thesetwothings,youcancallour SpecialistAdvisorTeamon01332 365676.
Ruth
Our Positive News Our Positive News
Ryan’s first work certificates!
RyanInwardshasbeenattendingStepsto WorksinceChristmasandhasreceivedhis firsttwocertificates StepstoWorkisa supportedemploymentservicewithinAdult SocialCareandHealthwhichformspartof EastSussexCountyCouncil’sLearning Disabilityservices
Thisservicehelpsandsupportspeoplewith alearningdisabilityand/orautismintowork Theycurrentlyoffercommunity-based projectsincludingacarcleaningvalet service,aswellasworkplacementswithlocal employersthroughoutEastSussex
Ryanexplainswhatthecertificatesarefor:
IamhalfwaythroughmyStepstoWork course IattendthiseveryWednesdaywith myworkmentorandhaveworkbooksto complete InthepictureIhavefinishedtwo workbooksandgotthecertificatesforthem Thefirstcertificateisforunderstandingwhat todoifthingsaremakingmesadorangryat work Itlooksatthingsthatmaygowrong likenotlikinghowsomeonetalkstomeor treatsme,howtodotherightthing andnot getangryorupset
Italkedtomymentorandwroteabout talkingtomymentorortosomeoneatwork andnotlettingitgetbad Iknowthebest thingtodoistotellthepersonIdon’t likewhattheyaredoingorsaying Ifthey don’tstopthenIwouldtalktotheboss I knowitisimportanttowritedowndates andtimestheyhavebeenhorribleandthings theysay Ialsoknowthatsometimesnot everyonecanlikeeveryoneandIwillhaveto seeifthingsgetbetteraswell Ifitismyboss whoisbeinghorribletomethenIwouldtalk tohisbossandmymentor
Theothercertificateisforwhenthings withmyworkgowrongandwhattodo I knowitisveryimportanttomakesureI understandwhatthebossisaskingmeto do IwillexplaintohimsometimesIdonot understandandhemayhavetosayit differently Iknowitisimportantnotto pretendtounderstandasthismeansI mightdosomethingwrong Iknowmy bosswilllikemeifItellthetruthandnot pretend.IfIgetstuckIwilltalktotheboss orthepersonthebosshastoldmetogo to IknowIhavetodothisstraightaway andnotsitandworry Sometimesitmaybe thebosstellingmeIhavedonesomething wrongandIknowitisimportantnottoget angryorupsetandaskhimtotellmehow todoitbetter
Intheworkbooksandatcollegetheytell methingsIcansayandhowtosaythings sopeopleunderstand
Iamreallyenjoyingthiscourseandhope whenIfinishIwillgetajob Iwanttowork withchildrenoranimals
Stuart’s amazing Stuart’s amazing rowing challenge! rowing challenge!
StuartMitchellwasgivenachallengeover Christmas,withtherewardbeingatwo-week holidaytoSpain Thechallengestartedon ChristmasEveandwasinitiallytoburn600 caloriesadayontherowingmachineorthe exercisebikeforamonth
Itquicklyturnedintoacompetitionwithhis youngestbrother Hisbrothersetdaily targetsforStuarttotryandbeat Thisstarted with7kmontherowingmachinewhich Stuarteasilysurpassed Nextdaywas9km then11kmandthen13km Eachday,Stuart beatthetargetbutinsteadofjustbeating 13kmhedid175kmandsetthechallengefor hisbrotherinstead Thenhisbrotherseta challengeof1,029calories Neverthinking Stuartwouldreachthis,hisbrotherrelaxed. Withintwohoursthephotographicevidence provedstuarthaddone182kmandburned 1,032calories!
Thanks to an amazing suggestion from the Owl Focus Group of adults with PWS, we have joined the Hidden Disabilities Sunflower and developed a Sunflower lanyard and information card specifically for our community at PWSA UK. The Owl Focus Group wanted the lanyard to show they have a disability, and if a situation arises in public, it isn’t them but their PWS This really resonated with us, which is why we have worked so quickly to provide bespoke lanyards and Sunflower cards The lanyard and card are sold together and cost £595 including P&P. Get yours now at pwsa-uk.ecwid.com! Sunflower lanyards Sunflower
Lucy’s busy life!
Lucy Taylor shares her latest news
IamvolunteeringatAuchingarrahWildlife CentreeveryWednesdayfrom10amtill 2pm,withmynewtwoexperienced supportworkers.
Igoandhelpoutwiththeanimalslike muckingoutgivingthemfoodandwater I havehelpedwiththemeerkats,malegoats, wallabies,emus,guineapigsandchickens, collectingtheireggs
ThisweekI’mhelpingoutwiththedonkeys andeveryWednesdayIgettofeedthe babylambsandcuddlethem Ihave bondedwiththelambs
BecauseI’mhelpingoutwiththeanimals,I getafreeluncheveryWednesday Iget soupandasandwichandadrinkfor helping
I’mreallyenjoyingit Iloveit Igottoname oneofthenewbabylambsandIcalledhim Blue IwaschuffedthatIgottopickthe nameforhim
Iwillbehavingmyassessmentsometime laterthismonthformysupportedliving I’ll maybehavemyownflatonablockwith otherswithdisabilities I’mreallyexcited andhopefullyI’mleavinghomewhenI’m21 That’swhatIwantedtodo-I’msoexcited MyfamilyissoproudofmejustnowasI lostmygreatgranwhowasclosetome andIknowshehasn’tgotdementia anymoresoI’mbeinggrownupaboutit justnow
IknowIwasextremelyupsetwhenIgot thenews,butItookthenewsreallywellas Iknowsheisinpeaceandshehasn’tgot dementia
IIknowlotofpeoplewithPWSdon’t understandwhatdementiaisandI’mgoing toexplaintoyousoyoucanunderstand Dementiaiswhenyouloseyourmemory andcan’trememberanything Youcan’t lookafteryourselfandhygieneandneedto becaredforathomeorinacarehomeand notknowyourfamilyanditmakesyoufeel tiredandyousleepalot
It’sahorribledisease It’sabitlikePWS,like ourbrainworksdifferentlythanpeople withoutPWS,butwecanlookafterourself andhygiene,wegethelpwithourtime keepingandmoneymanagementtokeep ussafe
Sometimeswedowrongthingsbutdon’t worry,it’snotourfaultit’sourPWS Wehavelowmuscletonewhichmeanswe getverytiredeasilymorethanothers withoutPWS Weneedhelptocontrolour eatingbutrememberitisn’tusthat’sdoing it,isthePWSandsometimeswedo somethingbadbutourparentsdon’tgo madatyoubecausetheyunderstandyou don’tmeanitbutyouwillgetlessifyou haveanyextras
Book reviews Book reviews
with Ruth
Youmightrememberthatoneofourmembers,Fran,usedtodoabook reviewinthemagazine,andwethoughtitmightbesomethingyouwould liketosee Havealookatourselectionbelow
Iknowthatbookscanbeexpensivetobuysoifyouhavealibrarynearby youmightwanttothinkaboutjoining It’sfreeandyoucanusuallytakeout 6booksatatimeandkeepthemforupto3weeks Becarefulnottogo overthetimeyou’reallowedtokeepthem,asyouwillendupgettingafine anditcouldcostyouafewpounds
Lotsofcharityshopssellsecond-handbookssoifyoulovereadingthesearegoodplacestovisit Oryoucouldset upabookswapinyoursettingifyoulivewithothers
IfyouliketoreadonaKindleorusetheKindleapponyourphone,youcouldsignupto‘BookBub’ Theywillsend youemailsonceaweekwithaselectionofbooksandtheirpricesarereallygood,usually99pto£199andquitea lotofthemarefree!Whenyousignup,youcanchoosewhichsortofbooksyouliketoread Like,crime,romance, fantasy,sci-fiandnon-fictionaswell
Ifyouwouldliketowriteareviewofabookorafilmyouhavewatched,we’dlovetohearfromyou!
Comity's life in the Australian outback changes forever When her mother dies from a snakebite, As her father retreats into his work, Comity turns to Fred, the Aboriginal yard boy, who becomes her only friend But then a new assistant arrives who delights in playing cruel games As Fred becomes his target, events spiral dangerously out of control
Howl’s Moving Castle by
Diana Wynne Jones
Ceony Twill arrives at the cottage of Magician Emery Thane with a broken heart Having graduated at the top of her class from the Tagis Praff School for the Magically Inclined, Ceony is assigned an apprenticeship in paper magic and once she’s bonded to paper, that will be her only magic forever
SophieHatterfromthelandofIngarycatchestheunwelcome attentionoftheWitchoftheWasteandisputunderaspell Decidingshehasnothingmoretolose,Sophiemakesherwayto themovingcastlethathoversonthehillsabovehertown, MarketChipping
ButthecastlebelongstothedreadedWizardHowl,whose appetite,theysay,issatisfiedonlybythesoulsofyounggirls
The Middle of Nowhere by Geraldine McCaughrean
The Paper Magician by Charlie N. Holmberg
Colouring Time & Wordsearch Colouring Time &
Anagrams
Can you unscramble the letters below to make words related to footwear? Two words in the clue = a two-word answer.
1 betall hoses
2. glosc
3 cie steaks
4 plif-splof
5 lorrel askset
6 kis stoob
7 prisslep
8 smupp
9 gashsole
10 setitslot
11 wasred
12 scamsonic
Flower wordsearch Flower wordsearch
Can you find the names of the following flowers in the grid?
Quiz Quiz
1) Which sport is played at The Oval?
a Football
b. Tennis
c Cricket Quiz
2) Which country gave the Statue of Liberty to America?
a Egypt
b France
c Spain
3) What is the name of this famous building?
a Taj Mahal
b The White Temple
c The Three Domes
4) Which of the following is a faun in The Lion, The Witch & The Wardrobe?
a Mr Trumpkin
b. Edmund
c Mr Tumnus
5) What is a baby goat called?
a Kid
b Pup
c. Calf
6) Which country does this flag belong to?
a China
b Mexico
c Canada
7) How many pockets does a snooker table have?
a Four
b. Eight
c Six
8) Which sport is Emma Raducanu famous for?
a Tennis
b Golf
c Running
Name
Address
Pleasemakesureyouputthecorrectpostageon yourenvelopes,includingcheckingthatyourstamps