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{k WELCOME to the second edition ofthe SEED Newsletter!SEED - (the Study to Explore Early Development) is going very well. Wehave over 2300 famil ies who have agreed to be a part of the study so far.

In this second edit ion of the newsletter, we wi l l ta lk about what to look for in howyour chi ld develops. Of course, we wi l l a lso give you more information on SEED!

Here we 9o.. .

Child Development

WINTER 201O

ISSUE 2

INSIDE THIS ISSUE

SEEDQ&A 2

Data Collections Corner 2

NC SEED News 3

Site Snapshot 4

SEED Highl ights 4

Growth is physical l ike weight gain andgett ing tal le4 but i t is also how a chi ldlearns, how they play, how they talk andhow they get along with other people.Every chi ld develops at their own rate.BUT, there are clues to what you canexpect to see at different ages (See Boxon page 2) . Your ch i ld may deve lop ina di f ferent way. Ask your chi ld 's doctoror nurse pract i t ioner what you shouldexDect.

The earl ier that you can do somethingabout a de lay or change in your ch i ld 'sdevelopment, the better. Treatmentshould be started as early as possible tohelp your chi ld develop the best he orshe can. There are no blood tests to tel lyou i f your chi ld 's development is r ightfor his/her age. You and your healthcare provider should work together towatch how your chi ld develops. I f youthink there is a problem with how yourchi ld is developing, DO NOT WAIT.Talk about i t and ask ouest ions. I f thereis a problem, i t is very important toget your chi ld help as soon as possible.A developmental delay (developmentthat is s low) might make i t harder foryour chi ld to learn when they startschool. Recent surveys have found thatin the United States !3o/o of childrenhave developmental delay or behavioralproblems (http : / /www.cdc. gov/ncbddd Iddlddsurv. htm).

. Visit the Centers for Disease Controland Prevent ion (CDC) website

for l inks to information on chi lddevelopment and early act ions atwww. cdc. gov/actea r ly.

. Learn more about developmentaldisabi l i t ies at ht tp : / /www.cdc. gov/ncbddd / dd /defau lt. htm.

Your chi ld 's physical growth, emotionaldevelopment and social relat ionships areal l part of chi ld development.

Eat ing the r ight foods, gett ing enoughexercise, rest and sleep each day arevery important for your chi ld 's healthand development. Don't forget tolaugh, play, read and sing with yourch i ld . G iv ing your ch i ld a sa fe homeand taking the t ime to talk, watch TV,play and l isten to music together canmake a big di f ference in growth anddevelooment.

Another part of your chi ld 's developmentis their safety, Protecting your childis a paft of being a parent. No parentwants to see their chi ld harmed for anyreason. Burns, fal ls and motor vehicleinjur ies, are some of the most commonreasons for a chi ld 's injury or death inthe United States.

. Learn more on what you can do tohelp protect your chi ld. Talk withyour healthcare provider and visi tht tp : / /www.cdc. gov/safech i ld/ formore information.

You are part of keeping your chi ld safe.(See table on page 2)

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This is a semi-annual newsletter ofthe CDC-funded Study to ExploreEarly Development. The purpose ofthis newsletter is to inform the publicof the study's progress.

6tsCADDRE

By the end of 7 months, manych i ld ren are ab le to :

. turn head when name is cal led

. smile back at another person

. respond to sound with soundso enjoy social play (such as peek-a-boo)

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By the end o f 1 l /2 years ( tgmonths) , many ch i ld ren are ab le to :

. do simple pretend play ("talk" on a toyphone)

. point to interesting objects, look at objectwhen you point and say " look!"

. use several single words unprompted(,)

By the end of 3 years (36 months),many ch i ld ren are ab le to :

. show aFFection for playmates

. use 4- to 5-word sentences

. imitate adults and playmates (run whenother chi ldren run)

. play make-bel ieve with dol ls, animals,and people ("feed" a teddy bear) (,

By the end of 1 year (12 months),many ch i ld ren are ab le to :

. use simple gestures (waving "bye-bye,,)

. make sounds such as "ma.'and "da,,

. imitate actions in their play (clap when youclap)

. respond when told "no"

By the end of 2 years (24 months),many ch i ld ren are ab le to :

. use 2- to 4-word phrases

. follow simple instructions

. become more interested in other children

. point to object or picture when named

By the end of 4 years (48 months),many ch i ld ren are ab le to :

. use 5- to 6-word sentences

. follow 3-step commands ("Get dressed,comb your hair, and wash your face.,,)

. cooperate with other children

SEED Questions and Answersl )How long is SEED? How longwil l my family be involved?How long you are in SEED depends onhow fast you go through each step.It usually takes 1 - 2 weeks to fill outall the forms and do the telephoneinterviews. After the forms are done,you will be scheduled for a clinic visit.After the clinic visit you will be askedto ftlt in the diet and stool diaries.Most families finish everything inabout 10 hours over 4 months.

2)Do I have to send stool back tothe study group?No. The diet record and stool diary areftlled in by you. We want you to writeclown everything your child eats for 3days. We want you to look each time

your child has a stool and write downwhat it looks like. You only need tosend in what you write down on theform we give you.

3)What i f I don' t remember mychi ld 's ear ly development?Answer each question as bestyou can with as much as you

4)I l ike help ing wi th s tudies l iketh is , are there other s tudies I canhelp wi th?The SEED researchers or study staff

can help tolocated closest to youanswer this question.

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can remember,Your baby book \(if you used one) l-*=\-t Imight help youremember. Don'tworry if you don'tremember every date iland every medicine. SAny information is

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Data collections corner: Diet and stool DiariesThe diet and stool records are animportant part of SEED. We are goingto use them to look at how chi ldreneat and what their bowel movementsare l ike. This is one of the last steosin SEED, but i t is real ly important.

Food / Diet:. We need you to wri te down what

your chi ld eats for 3 days.r What do we need? - As much as

you can give!. Remember the "visual ize your

port ion size" from the cl in ic vis i t?Use that as a guide to wri tedown the amounts of each food.Remember to put the t ime foreach meal and each snack.

r Wri te as much as you can aboutwhat your chi ld eats. Was thecereal Kellogg or Post? Was it acup or a bowl? Did you use 2o/omi lk o r regu la r mi lk? D id you pu t1/z cup or a full cup of milk inthe bowl?

Bowel Movements:Poop - Who Knew! ! !

r Y€S, we want to know about yourchi ld 's bowel movements.We need you to f i l l in the diaryform we give at the cl in ic vis i t .The form tel ls you exact ly what towri te down.

. For example we would l ike to know. How many stools per day?r What does each stool look

l i ke?. I f you can, ask somebody else to

help you explain and wri te downwhat the bowel movement looksl i k e .

I f you wri te the meals and the bowelmovements down each day, i t wi l l nottake a lot of t ime, There is a calendarin your packet, use i t to help youremember when to start to keep trackof food and bowel movements. puti t on the refr igerator or at your desk,this can be a reminder for you.

Remember; we want to know al l thefoods your chi ld has eaten for 3 days,AND we want the bowel movementsfor 7 days.

Quest ions???? Cal l your SEED studyoffice at 1-866-633-8003 and theywi l l help you get this last part f in ished.THANKS,

Issue 2 Study to Explore Ear ly Development (SEED)

From the NC Garden: What happensat a SEED developmental assessment?The cl inic vis i t , or developmentalassessment, of the SEED study isan important act iv i ty and the pointat which our staff gets to meet thechi ldren and famil ies face to face.Not al l parents and chi ldren do thesame assessments at the cl in icvisi t . Likewise, some famil ies maypaft ic ipate in short interviews whi leothers do longer interviews. Famil iesand chi ldren are assigned to specif icresearch groups based on a screeningtool that is completed during an earlyphone ca l l w i th fami l ies . Our c l in ic iansand a few of the measures we use areintroduced here.

Dr. Becky Pretzel is al icensed psychologist andthe North Carol ina si teSupervising Cl inic ian. Sheconducts develoomenta Iand aut ism-specif icassessments durino

the cl in ic vis i ts. As SupervisingClinician, Dr Pretzel oversees thework of others who assess childrenfor the NC study si te and assuresthat al l c l in ic ians do the assessmentsthe same way, An example of anautism-specifi c assessment that somechi ldren complete is the ADOS (Aut ismDiagnost ic Observat ion Schedule). Thisassessment can be used to helo decidewhether or not a chi ld is displayingcharacteristics of an autism soectrumdisorder. During an ADOS evaluat ion,Dr Pretzel would set up different playscenarios such as a bifthday party,reading a book, and complet ing apuzzle. She will record what the childdoes or does not do during the playt ime. She focuses on the chi ld 's social ,communicat ion and behavioral ski l lsbecause these are the key issues forthose with autism. Dr Pretzel was akindergarten teacher and decided tobecome a psychologist because shewas fascinated by the differences inearly learning and behavior dur ingearly chi ldhood.

Dr. Debbie Reinhartsenis a speech andlanguage pathologist ,An aut ism-specif icmeasure that she mayconduct is the ADI-R(Aut ism Diagnost ic

Interview - Revised). Dr. Reinhartsenwould interview the chi ld 's parentor caregiver and ask many specif icquest ions about the chi ld 's ear ly andcurrent development and behavior.She might ask about the ch i ld 'slanguage, his social interact ions andinterests, and any special talents thechi ld has. The cl in ic ians take a lot ofnotes during this extended interview,This is another of the assessmentsthat only some famil ies complete.Dr. Reinhartsen decided to becomea speech-language pathologist whi lel iv ing in Japan. She was interestedin di f ferences among languages,part icular ly the way we use certainsounds and the di f ferences in bothverbal and nonverbal communicat ion.

Dr. Signe Naftel is aI icensed psychologist ,She may completethe developmentalassessment that al l ofthe chi ldren in the studyreceive, the Mul len Scales

of Early Learning. This assessmentcan help ident i fy strengths andweaknesses in learning and thinkingin young chi ldren. This scale focuseson visual recept ion, f ine motor ski l ls,and recept ive and expressive languageabi l i t ies, During a Mul len assessment,Dr Naftel would si t with a chi ld and askhim or her to do a var iety of thingssuch as matching objects, bui lding withblocks, drawing, cutt ing, and answeringquest ions. The cl in ic ians wri te downthe things a chi ld can do and cannotdo during this test. Dr. Naftel enjoysworking on the SEED project becauseit allows her to work with wonderfulfamil ies and chi ldren whi le also helpingwith research in a very important area.

Dr. lean Mankowski isa l icensed psychologist ,She may conduct theadapt ive behaviorassessment (VinelandAdaptive BehaviorScales- I I ) which only

some famil ies complete. She might askthe chi ld 's caregiver a lot of quest ionsabout how the chi ld funct ions inact iv i t ies of dai ly l iv ing such asdressing, eat ing, moving around, andcommunicat ing. During this interview,

Highlights of NCSEED Progress394 of 2,304 (or 77o/o) of the totalnumber o f fami l ies enro l led in SEEDhave come from NC.

So far we have invi ted 3321 famil ies,394 have enrol led, and approximately240 have f inished their part ic ipat ion.Many famil ies are st i l l workingthrough the mult iple study steps anda few have needed to droo out. Al lstudy staff real ize that famil ies devotea lot of t ime to complete so manyforms, interviews and assessments.We deeply appreciate our NorthCaro l ina fami l ies who have g iven the i rtime to support our research efforts.

the cl in ic ian would take notes on thecaregiver's report of whether or notthe chi ld can do each thing she asksabout. Dr. Mankowski chose her careerpath during high school af ter workingat a summer camp for chi ldren withdisabi l i t ies. She was so amazed bythe determinat ion and strength shownby these chi ldren and their famil iesas they fought to overcome even themost daunt ing of obstacles, She knewthen that she wanted to work in thisf ield assist ing chi ldren and famil ies inreaching their maximum potent ial .

Several other cl in ic ians also help withmany o f our Mu l len and V ine landassessments. Their assistance withthis research study is invaluable. Thegroup includes Al l ison Ratto, MargaretDeRamus, Taylor Hol loway, RachelKitson, Barbara Lowe-Greenlee,Hannah Harwood, and Krist in Cooley,

xAs of February 1, 2010

Study to Explore Ear ly Development (SEED) Issue 2

r:((Study to Explore Early Development (SEED)

The University of North Carol ina at Chapel Hi l lCamous Box 8126Chapel Hi l l , NC 27599-8L26

ADDRESS SERVICE REQUESTED

t3#e-C A D D R E

Site Snapshot:Pen nsylva n iaPennsylvania Center for Autism andDevelopment Disabi l i t ies Researchand Epidemiology (PA-CADDRE)

PA-CADDRE is a joint-effort of the University ofPennsylvania, School of Nursing and The Chi ldren'sHospital of Phi ladelphia. The Center for Aut ismResearch (CAR) is where the coordinat ion and supportfor autism research from each center comes together.

The goals of CAR research efforts are to:. Understand why and how chi ldren with ASD are

different from each other. How is development di f ferent for chi ldren with ASD. What develoomental and treatment needs do these

chi ldren have

The research at CAR includes:. Epidemiology . Social worko Genetics . Radiologyo Health services . Psychiatry, psychology. Neurobiology . Nursing. Neuroscience . Neuropsychology

Want to know more? Visi t the Pennsylvania CARwebsite at http: / / stokes.chop.ed u / prog rams I car /or cal l the tol l - f ree number: 1-866-570-6524.

NonprofitOrganizationU.S. Postage

PAIDPermit No. 177Chapel Hi l l , NC

Highlights of SEED ProgressSEED started in winter 2008.Our goal: 2,700 famil ies combined from al l the SEED studysites. We now have over 2300 famil ies enrol led,

SEED staff works closely with famil ies on each step of thestudy. Every step is impoftant. The tables below show ourprogress. The more information SEED gets the more we al llearn about chi ldren with Aut ism Spectrum Disorder (ASD) andother developmental disabi l i t ies.

xAs of February 1, 2010

lssue 2 Study to Explore Ear ly Development (SEED)