Eating Well and Living Well for People Experiencing Down Syndrome at Every Age
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Transcript of Eating Well and Living Well for People Experiencing Down Syndrome at Every Age
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Eating Well and Living Well forExperiencing Down Syndrome at Ev
Its a Journey, not a D
Global Down Syndrome 2015 Educ
Joan Guthrie edlen,
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$ow do you ima%ine your &amily'
$ow do you see each (erson se(aratel )our children' )our child with Down syndrome'
)our (arents' )our s(ouse' )oursel&'
Now and in the future?
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A family centered plan
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The journey is more than fo
Its a *ourney to a healthy li&e and wellness+
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CommunicationSkills
PhysicalSkills
SensorSkil
Learning
orris, SE -liein, D+PreFeeding Skills: A Comprehensive Guide for Mealtime Development.
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The Feeding Relationsh
arents are res(onsiblwhat, where, whehow&ood is (resent
3hildren are res(onsibhow much and whethe &ood is eaten+
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Support Persons
nurse, social worer, dietitian, early inter6ention
teacher, babysitter, res(ite worer, s(eech(atholo%ist, occu(ational thera(ist, (hysicalthera(ist, beha6ior consultant, %randmother, aunt,nei%hbor, and lady at the %rocery store78
9re res(onsible &or what, where, wandhow&ood is (resented within the(arameters o& the familys values,as it does not do harm to the child+
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Then as they growand step out on their own
9re res(onsible &or
what, where, when,and how&ood iseaten7as well as howmuch and whetherit is eaten+
.with our su
!e are enginmentors,rofessionalsuort,
and.arent
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$ealthy li6es be%in with
"rust
#ollowed $y education, oortunity,e%erience.
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Trust builds
3urious eaters 3on:dent eaters
3ommunicati6e eaters
Fearless Families with FearlesFeeders;
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Responsibilities of the Adult R
Communicating
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Trust includes
/he relationshi( between &amily su((ort(ro&essionals and the &amily+
Stay focused on your role. Suort rofessionals are res(onsible &or w
where, when, andhow&ood is (resented with
(arameters o& the familys values, as lon% asnot do harm to the child+
Parents are res(onsible &or communicatin% whim(ortant to them as a &amily to those who su(them+
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Trust and Person-Centered Pr
erson=centered (ractice means a> romise to listen+
romise to act on what we hear+
romise to $e honest+
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Responsibilities of the Adult R
3ommunicatin% &amily 6alues+
!hen it is eaten.
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Responsibilities of the Adult R
3ommunicatin% &amily 6alues+
!hen it is eaten.
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Balance and Timing
$ow many hours between meals'
"o more than
#ive+
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Coyright &'()* +oan uthrie -edlenwww.+oan-edlen/.com
When its eaten
0sing food aroriately
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Using Food Incentive
Daily !ewards
arties and others(ecial times
/he Astudent storeB
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Responsibilities of the Adult R
3ommunicatin% &amily 6alues+
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What is eaten
/eture (ro%ression
Sensory=related challen%es
Introduce new &oods+
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The Down Sndrome !utrition "and#ook 2ed, (a%e 4+9lso a6ailable as a handout Creating Su$$essful Mealtimesin S(anish and En%lish with this (resentation,ublishin%+
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What is a Hard Munchable?
/hey are N1"&or e$ard unchable &oomust be su(er6ised
S(oons, toys, teet
Stri(s o& buttered
!aw carrot stics
#ar%e (retels
Jicama stics/hans &or the snac, om;
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The Crunch Theory
!hat do most 2soft3foods have incommon?
!hat do fresh fruitsand vegeta$leshave in common?
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Picky Eater?
Coyright &'()* +oan uthrie -edlenwww.+oan-edlen/.com
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Detective Work
eha6ior 3ommunication
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Possible Messages
It hurts when I eat+
Its hard to eat+
I dont &eel %ood when I eat+
Eatin% maes me tired+
I %et oms attention when I do not eat+ I dont remember why I dont lie it, I *ust
Its one o& the only thin%s I can control+
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Picky Eating vs. Oral Motor ToneHow do you tell?
Hral otor /one 3ues Picky 4ating Cues Sensory roc
Desires low nutrient, hi%h calorie
&oods sweets, chi(s, &ries, etc8+
Si(s entire &ood %rou(s+ Ga%s, cou%hs, or
time
Slow to (ro%ress throu%h &oodtetures+
H6er=use o& su((lements to :lldietary %a(s
ersistent &ood re
ay not en*oy eatin% in %eneral+ aries eatin% in dierenten6ironments+
eal time taes minutes
$as e6eryones attention, or is incom(lete control o& meal time+
$oldin% &ood in min chees
ower stru%%les
Slow to (ro%resstetures
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Sensory Stages to Food Accep
9cce(t theresenceo&&ood+
9cce(t thesmello& the&ood+
4%loresthethe &ood+
"astesthe&ood+
9da(ted&romASte(stoEatin%
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Taste Testing?
3oach (arents to try tastin% stron%=armin% children to try
ust be done in a Asa&eB eIts H- not to try somethin
Done as a %rou( acti6ity waway &rom &amily or li6in%
(ressure o& mealtime+
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Available from Phronesis Publishing
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Responsibilities of the Adult R
3ommunicatin% &amily 6alues+
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'()) & Phronesis Pu$lishing, LLC
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Where it is eaten
Seatin%
9ctual location
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Responsibilities of the Adult R
3ommunicatin% &amily 6alues+
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Servings & Portions:Whats the difference?
Servings
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Teach portions
/ae ad6anta%e o&A/he Groo6e+B
Kse reci(e systemsthat reduce or
eliminate le&to6ers.
Kse 6isual cue
Kse late eth
3reate %uides &or &a6orite res
-odel the e%ected $ehavio
l hdf
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Plate Method for Portio 0se a 78inch late
late.
#ind visual $oundathan 7 inches.
2Non8starchy 9egeinclude lettuce, $rtomatoes, carrotsetc
2Starches3 include:uinoa, and so on
; ounce glass for l
Small late for des
NonStarchy
9egeta$les
-eat orProtein
Starchesor
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Teach Servings
=ee it sim
2Servings3rather than2ortions.3
0se visual t
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Responsibilities of the Adult R
3ommunicatin% &amily 6alues+
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How it is presented
Kse a((ro(riate tools+
/ae care in introducin% new &oods+
H iti td
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How it is presented
Kse a((ro(riate tools+
It hi !
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Itsmychoice!
A/he real issue is not so muchchoice as (ower+
ost ordinary (eo(le are notAallowedB choicesL
they *ust mae them+B
$erb #o6ett in Le
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Choices, Choices, Choices!
-ore
>ll done
No way
/he early choices>
The Power of No, than
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,
or
Youre kidding, righ uilds sel&=con:dence
romotes control o6er
li&estyle Is traditionally discoura
throu%h teachin%
techniMues+
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Making Food Choices
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Responsibilities of the Adult R
3ommunicatin%+
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reyouon the Food Police F
Askyourself:
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Ask yourself:Do you7+ 3ontrol e6ery bite your child eats'
-ee( trac o& what your child iseatin% in your head'
$ide A%oodB &oods or su((lementsin other &oods'
!emo6e &ood &rom your childs(late once theyre at the table'
9s your &riends and &amily tomae As(ecialB &oods &or yourchild'
Find yoursel& sayAno, no, no;B e6e&ood is in6ol6ed'
$ide &ood &rom y
Feel lie &ood is cyour li&e'
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Setting Them Up for Suc In each sta%e o& li&e'
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Making an informed cho
e able to communicate the6arious choices+
Knderstand what ha((ens
when a choice is made+
Is it a choice a reasonable(erson would mae'
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Supported Decision MakUsing the trust model for feeding, it looks lik
what, where, when, andhow&ood is eaten7as wellas how much andwhether or not it is eaten+
7+with our suo
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the Food Police
SettingUpforSucces
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Setting Up for Succes
Trustalsomeans
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Trustalso means
ayin% attention to nutrition=related
concerns
Nutrition-RelatedConce
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Nutrition-Related Conce GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism
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Burn, Baby, Burn!
asal etabolic !ate decreased by 1
15O+ /hyroid onitorin%
Nutrition-RelatedConce
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NutritionRelated Conce GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism #on%=/erm use o& edications
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Nutrition-Related Concerns GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism
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Celiac Disease
9((roimately one (ercent 1O8 o& (eo(leKnited States ha6e celiac disease+
Studies su%%est that &our to siteen (erce1PO8 o& (eo(le with Down syndrome mayde6elo( celiac disease+ Gale, 1CC@8+
SignsofCeliacDisease
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Signs of Celiac Disease"otable &or (eo(le with Down syndrome>
E6eryone with Down syndrome can ha6e the %en
celiac disease+ /hose without Down syndrome need &amily history+
9 ey o6erlooed sym(tom> Are%ression in sills+B
3an ha6e consti(ation or diarrhea, or anythin% in
9nemia+
#actose intolerance+ #ow 6itamin D
Screenin%s may be Ainconclusi6e+BDont &or%et (ro&essional *ud%ment+
Treatment:AGluten-Free
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Treatment: A Gluten-Free
SomehintsfromtheGFTrenc
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Some hints from the GF Trenc
Its %reat to see your child %et better with a healthy %ut+
-ee( an eye out &or consti(ation+
3onsider an o6er=the=counter gluten8freemulti6itamin+
e (atient with new &oods+ Gluten=&ree eatin% can tae some %et
/each your child words o& &oods that contain %luten+
9dd them to the readin% list at school+
Kse the same strate%ies> atch Q Select Q "ame to teach+
!emember, sli( u(s will ha((en+ Kse them to teach, not reach
AndysStory
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Andys Story
Nutrition-RelatedConcerns
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NutritionRelated Concerns GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism
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Constipation
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NutritionRelated Concerns GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism
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NutritionRelated Concerns:GERD
GE!D> %astro=eso(ha%eal reNu d
GE!D is when the contents o& your stomacid8 (ush bacwards u(8 toward your
H&ten AsilentB until there is a crisis du(ain+
/h b d A i i B i &t b h i
Physical Symptoms of GE
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y y p ersistent cou%h es(ecially a&ter eatin%+
A!etchin%B
9 second taste o& the meal $oarseness
9sthma
DiRculty swallowin%
#oss o& enamel on teeth
oor slee(+
I& not treated, a((etite may decrease+Source> 3hicoine cGuire, The Guide to Good "ealth for Teens and Adultswith Down Sndrome% &ood#ine "ouse% '()(.
SomeBehavioralSymptomsof
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Some Behavioral Symptoms of
"ot able to sit or be still a&ter meals
usually a com(laint that comes &romschool8
Irritable, es(ecially in the hour or someals+
3hicoine cGuire, The Guide to Good "ealth for Teens and Adultswith Down Sndrome% &ood#ine "ouse% '()(.
GERD: The Nutrition Plan
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/hin%s you can do to hel( with GE!D> Encoura%e and teach reasonable (ortions+
oal5 reduce o6ereatin% at a meal+
!each and maintain an a((ro(riate body wei%ht+oal5 E6aluate acti6ity and eatin% habits to reduce wei%ht+
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y
3hec yearly
Eect on metabolism Growth
Nutrition-Related Conce
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GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism
#on%=/erm use o& edications
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9s about &ood=dru% int
9s about eect on wei
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Nutrition-Related Concer
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GE!D> %astro=eso(ha%eal reNu disease
3onsti(ation
3eliac Disease
/hyroid
Diabetes
Slee(
etabolism
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p g g
Back to the journey
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j y
Then as they grow
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and step out on their own
9re res(onsible &orwhat, where, when,
and how&ood iseaten7as well as howmuch and whetherit is eaten+
.with our su
!e are engin
mentors,rofessionalsuort,and.arent
Teaching
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Focus on main% health&ul choices+
#ittle &ocus on what is not health&ul+
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"utrition 101
Carbohydrates
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AStarchyB e%etables
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A"on=StarchyB
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e%etables
Protein
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Fat
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Vitamins
Minerals
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Water
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1 O dehydrated> thirst
2 O Stron%er thirst, discom&ort, loss o& a((etite
O Dry mouth+ !educed (hysical (er&ormance
?O 9(athy and nausea
5O /rouble concentratin%
PO /rouble with tem(erature re%ulation
4O Diiness, breathin% is harder, and weaness+
10O
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Fiber
Soluble Fiber Insoluble Fiber
itamin D 3alcium
a%nesium
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erson=3enteredractice
Di6ision o&
!es(onsibility
eal alance enu
Balance
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Matters of Balance
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3hoice7
3hoice7
3hoice;
eal (lannin% is aninclusi6e acti6ity+
-eal Plan
Menu Planning
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o& 5 &ood %rou(s
Somethin% &or e6eryone
Family Favorite Wo
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'((; & +4- Communications
Setting up for Succes
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3hec the Schedule+
Days the schedule is ti%ht+
Days you need to (lan a snac+
ae a list o& (ossibilities that you are
willin% and able to su((ort+
)
'
*
@
A 3hec &or the needed tools+
enu (lans>
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1 day'
days'
5 days' Somethin% &or e6eryone+
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Display the Menu Choic
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Nutrition Education Tips
/he 3ommunity 3lassroom rocery Shoing
Find &ood in aisle
t h th l b l
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Grou(in% Foods
Settin% the /able
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www./S#1C.or learnin ro ram.h
Get Cooking!
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Findin% in%redientsourin%
easurin%
/earin% #ettuceStirrin%
Create a Visual Kitche 3olor=code reci(es to match
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(measurin% tools+
Kse easy=to=read measurin%cu(s+
Kse color=coded cuttin% mats
to reduce cross=contamination+
Kse a 6isual timer+
More Visual Supports
Cooking by ColorRecipes for Independence
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More Visual Recipes
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More Visual Tools
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Weight Management
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The story is more than foE6ery as(ect o& li&e has an im(act on wei%ht mana%e
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E6ery as(ect o& li&e has an im(act on wei%ht mana%e
Person-Centered Approa
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)our child is the center o&
their healthy li6in% story+
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DnEuence of
Percetionon!ellness
F(G of suort roviders HyouI felt tthey work with had more energy afte
e%ercising.
*(G of eole with intellectual disa$change in energy.
9ery few suort roviders felt the Jcost of e%ercising was a ro$lem.
SigniJcantly more eole with D/ felJnancial cost was too great.
Suort roviders were more likely timrovement in Koint ain and move
Tools to Use
Im(ortant Im(ortant
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It needs to be understandable
/ools need to be easy to use+
3hoice; 3hoice; 3hoice;
ositi6e eha6ior Su((ort Strate%ies
Su((ort &or the team>
E6eryone must be on board+
/rainin% education &or su((orts
En6ironmental im(act
ro%ress needs to be easy to see.
Energy Balance
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Coyright &'()* +oan uthrie -edlenwww.+oan-edlen/.com
Growth ChartsHow do I know if hes growing O.K?
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Burn, Baby, Burn!
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asal etabolic !ate decreased
by 10=15O+
Being Active !eMuires a (erson=centered
a((roach+
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A/he real issue is not so much
choice as (ower+
ost ordinary (eo(le are notAallowedB choicesL
they *ust mae them+B
$erb #o6ett in Lear
Stephens Story
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It is im(ortant to honoryour adult childs c
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( y
/hat doesnt (reclude instruction and (ositsu((ort &or learnin% about basic nutrition ahealth (romotion+
Kse the o((ortunity to im(ro6e e6eryoneso& how to im(ro6e health+
Dan aer, h+D, A
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/he other ener%y
"he myth of 2will,3 2disciline,3 ancontrol.3
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The Energy Equation of Chan
&or chan%e we choose>
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%
5O o& beha6ior is consciously sel&=directed+
C5O o& what we do occurs automatically or in res(onseAdemandB or aniety+
/he ower o& Full En%a%ement
Teaching the Choices /eachin% choices is a li&e=lon% (roce
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% % (
Coyright &'()* +oan uthrie -edlenwww.+oan-edlen/.com
Challenges ain% intan%ible conce(
i i l
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-ee(in% it real
/ranslatin% nowled%e to
across en6ironments+
/ime
/here are many more intways to s(end ener%y;
Tools for the Toolbox isual strate%ies
hi
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Suort for theHwhether its yosomeone you a
Coyright &'()* +oan uthrie -edlenwww.+oan-edlen/.com
re=teachin%
!ole (lay !e(eat Q !e(eat Q !e(eat
Groo6es
#ist main%
3uriosity
/astin% En%a%ement
!es(onsibility
Ways to track #oseit;
l #
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eal #o%%er
Food 3ards Food !ecord
Gra(hin%
Fit it
Face/ime
Activity $un%er acti6ity
F ll 9 ti it
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Fullness 9cti6ity
!ole (lay
When in doubt,Wait it out!
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It taes time &or your body to notice the &ood you eat+ /hat meneed to %i6e it time to catch u(;
$ow do you now i& youre still hun%ry or i& you only want mor
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/he real V1 barrierIts main% sense o& it all+
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SSSo what doIdo now'
Be Fearless! H(en yoursel& u( to listen+
3oach (arents to trust themsel
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3oach (arents to trust themsel
/rust your child to tell you
/hrou%h beha6ior,
throu%h words,
/hrou%h choices+
3oach others how to do the samsu((ortin% your child+
En*oy the *ourney Q its &un;
I dedicated my meditation to youI imagined you happy.
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Eat
Contact InformationJoan Guthrie edlen, Ed, !D", #D
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www+Joanedlen!D+comwww+DownSyndrome"utrition+com
Email>JoanWDownSyndrome"utrition+com
www+Faceoo+comUJoanGuthrieedlen!D
/witter> W*medlen
C@1+254+14@ (hone8
http://www.joanmedlenrd.com/http://www.downsyndromenutrition.com/mailto:[email protected]://www.facebook.com/JoanGuthrieMedlenRDhttp://www.facebook.com/JoanGuthrieMedlenRDmailto:[email protected]://www.downsyndromenutrition.com/http://www.joanmedlenrd.com/