Eating Well and Living Well for People Experiencing Down Syndrome at Every Age

7/25/2019 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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3ommunicatin% &amily 6alues+

!hen it is eaten.


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!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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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?



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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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'()) & Phronesis Pu$lishing, LLC


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Where it is eaten

Seatin%

9ctual location


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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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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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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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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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% % (


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


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/

Documents

Eating Well and Living Well for People Experiencing Down Syndrome at Every Age