EARLY MATTERS E-NEWSLETTER

March 14th , 2014

The Four –Leaf Clover

Who knows why Down syndrome occurs? It can be compared to what happens in nature to a field of clover. Usually, we see 3 leaves on each clover.

Once in a while, however, we find a clover that has an extra leaf– making it a four-leaf clover. There is no obvious explanation– all of the cover plants few in the same soil, were exposed to the same sun and rain, etc. Mother Nature just decided to add an extra leaf to one of the clover in the clover patch. This doesn’t make it better or not as good as the other clover. It just makes it different. Mother nature decided to add another chromosome to that baby’s cells. It doesn’t make the baby better or not as good as the other babies– it just makes him or her different. And if you find one of those babies, you are truly lucky for they are very special babies– who grow in to very special people.

Celebrate Saint Patrick’s Day With Us!!

See flyer on page 7

9902 Windisch Rd. West Chester

Date

This is a great time to have a little extra therapy for your child and extra talk time to other parents! The therapist who

will teach the class is wonderful and very helpful .

EARLY MATTERS MARCH CLASSES All Early Matters programs and classes are provided for parents and their child for fun and developmental growth at NO COST to

you. All the classes are taught with a licensed therapist or teacher. Siblings are welcome to join the classes with parent supervision.

RSVP to martha@dsagc.com or text /call 513-300-9323

Physical Therapy for Little Ones (ages 3 months to 3 years old)

ABC Pediatric Therapy, 4325 Red Bank Rd. Cincinnati

Saturday, April 12th (10:00—11:00 am)

This is a great time to have a little extra therapy for your child and extra talk time with other parents! The

therapist who will teach the class is wonderful and very helpful.

Physical Therapy for Little Ones (ages 3 months to 3 years old)

ABC Pediatric Therapy, 9902 Windisch Rd. West Chester, OH

Saturday, March 15th (10:00 —11:00 am)

This is a great time to have a little extra therapy for your child and extra talk time with other parents! The

therapist who will teach the class is wonderful and very helpful.

Sign language Class (ages 6 months to 5 years)

May 3rd 10-11 am 2825 Burnet Avenue Cicinnati, OH April 5th 10-11 am 4440 Glen Este Withamsville Rd. Cincinnati, OH

10:00 am—11:00 am This class is for parents, siblings and children who have Down syndrome. Signing can help a child with little or no

verbal skills. It can also help with behavior and frustration.

Dramakinetics Class (ages 3 to 5 years)

Montgomery Community Church, 11251 Montgomery Rd. Cincinnati, OH, Room

Tuesday, April 1st (6:30 -7:15 pm)

Use listening skills and learn to follow directions. The best part is the fun time for parents and siblings. Come and

enjoy the company of other parents!

Dramakinetics Class (ages 3 to 5 years)

DRAMAKINETICS of Cincinnati, 4222 Hamilton Ave Cincinnati, OH (parking behind church)

Saturday, April 12th (11:00 am—12:00 pm)

Use listening skills and learn to follow directions. The best part is the fun time for parents and siblings. Come and

enjoy the company of other parents!

Music Therapy Class (ages 3 to 5 years)

CINCINNATI CENTER FOR AUTISM, 305 Cameron Rd. Springdale, OH

Wednesday, April 9th (6:30 pm-7:15 pm)

Group music, listening skills and much more!

Music Therapy Class (ages 3 to 5 years) A Step Ahead Therapy Crestview Hills 2865 Chancellor Drive Suite 105

Monday, March 24th (6:30 pm-7:15pm) Classes are now being held the 4th Monday of the month. Meet Kate Legge.

Physical Therapy for Little Ones (ages 3 months to 3 years old)

A Step Ahead Therapy Crestview Hills 2865 Chancellor Drive, Suite 105

Saturday, March 22nd (10:00-11:00 am)

This is a great time to have a little extra therapy for your child and extra talk time with other parents! The

therapist who will teach the class is wonderful and very helpful.

SUCK-SWALLOW-BREATHE AND ORAL-MOTOR DEVELOPMENT

By Sharon Fiocca, MA, CCC

Feeding skills, oral motor skills, and articulation development are all related to each other in that they develop side by side and one builds upon the other. You really cannot separate them. A child with poor oral motor skills will have feeding deficits in certain areas and delays in articulation. Therefore the information presented below covers development of these areas and interventions that you as a parent can do to improve function.

The sucking reflex usually develops in utero. Many children with Down syndrome have trouble with this very refined oral-motor sequence at birth and afterwards. The following exercises/techniques are compiled for you to stimulate this sequence. When the reference is known it is given. Otherwise it is reported here as learned from experience or from interaction with other specialists. Most of these exercises should be done before or during feeding time. (Caution: never leave a child unattended with a "Nuk" toothbrush because the end comes off.)

* Rub the index finger along the gum ridge where the molars would develop. Then follow this with a few quick swipes across the palate left to right. Allow the baby to attempt to suck on a bottle/nipple giving support to the bottom lip. The baby may only take a few sucks before this procedure has to be repeated again.

* Take a "Nuk" toothbrush and wipe along the palate from molar area to opposite molar area and then down along the top of the tongue back up to the palate so you have completed a full circle (Copyright © Debra Beckman).

* Use an infa-dent toothbrush (fits over your finger; is made of plastic and has little raised soft plastic spikes at the end of it) inside the baby's mouth to rub gums, insides of cheeks, and tongue. This tends to stimulate awareness of intra-oral cavity.

* Wipe the face off with a face-rag and pull the muscles gently but firmly towards midline (middle of the mouth area)

* If still having difficulties around 4 months of age you can go to a cross-nipple (or make your own by cutting an "x" into a nipple with an exacto-knife). After doing this, add a few teaspoons of rice cereal to your formula or breastmilk. You will need slightly more if using breast milk, because it is thinner than formula. This thickens the formula/breast milk and aids in teaching an infant to suck/swallow/breathe. A word of caution: Do not do this for more than a few months as it will reinforce a tongue thrust behavior which most children with Down syndrome will have the first few years of life if not longer.

* If you are choosing to bottle feed, the best nipple is one that is going to discourage tongue thrusting. I prefer two types, the Evenflow preemie or formula nursing nipple and the Evenflow disposable. Others that may be touted as the orthodontic nipple may not be the best choice. Another word of caution: some people give their supplements via an "x"-cut nipple and they do not thicken the liquid inside. This will definitely reinforce tongue thrusting because the flow of the liquid will be too fast. The tongue will develop a humping in the back and a forward push against the nipple to slow the flow of the liquid. So the bottom line is if you are going to give supplements via an "x"-cut bottle then thicken the formula first. As soon as possible, switch to giving the supplements on a spoon perhaps sweetened with black cherry concentrate or other bottled concentrates usually available at the health-food store.

We are in the planning stages to move to our new home in August. The new office is centrally located in Norwood, just seconds off the Norwood Lateral and only 1.5 miles from Rookwood Commons.

To celebrate World Down Syndrome Day on March 21st we are kicking off our 321 Campaign, and ALL dollars raised will go towards the expense of our move and will also help equip the Community

Room. Keep an eye out on Facebook and our website for 21 reasons why this move, especially the Community Room, are essential for the DSAGC to serve our families in greater ways than ever before!

http://www.dsagc.com/ways-to-give/321campaign

#DSAGCIsOnTheMove

Thomas Center for Down Syndrome

Mini Series Classes

6 pm – 7:30 pm

Tuesday, April 1st

Updates on Healthcare Guidelines (parents of all ages)

This is a parent-only session led by our physicians, Dr. Pam Williams-Arya and Nurse Car Coordinator, Stephanie Brown.

Thursday, April 17th

Take a Step: Advancing Motor Skills and Self-Care (ages 18 mo —4 years) This session is led by a PT and an OT.

Monday, May 5th

Moving to Solid Foods And Self-Feeding (ages 12 mo—3 years)

RSVP to Martha at martha@dsagc.com

Research Opportunity for Early Matters Families

We are doing a study on the impact of an early and aggressive "Tummy Time" program on the attainment of motor milestones as well as on the physical activity level of infants with Down syndrome. We are looking to recruit families with infants with Down syndrome that are ages 4 to 20 weeks (at study entry). This study is important because infants in general are not spending enough time on their tummies early in life and it is negatively impacting their motor development. Infants with Down syndrome already have difficulty in anti-gravity positions (such as tummy lying) so this, coupled with not enough tummy time, makes infants with Down syndrome highly susceptible to progressive developmental delays. Families are to try to accumulate 90 minutes per day of deliberate Tummy Time with their infant and are asked to log their daily Tummy Time. Participants are followed in their homes monthly for 12 months following study entry by a pediatric physical therapist with over 17 years experience in working with infants and children with developmental disabilities. Each home visit lasts one hour or less and consists of instruction in Tummy Time and two motor assessments (Bayley and PDMS-II). Infants also wear an Actigraph activity monitor for 24 hours one time per month to measure their physical activity level. The information obtained will be used to develop effective interventions for infants with Down syndrome that will hopefully minimize motor delays and maximize physical activity early in life. We are actively recruiting infants in your area (we already have some participating) and will continue to recruit through the end of the summer 2014. Preliminary results are quite promising so if you know of any infants that might qualify for this study please pass on our information. We greatly appreciate any help you could offer in the recruitment process. Please feel free to contact us at erinengw@umich.edu or (734) 936-2607 should you have further questions.

Max Hill Laboratory Assistant, University of Michigan School of Kinesiology Erin Wentz, PT PhD student, University of Michigan School of Kinesiology Center for Physical Activity and Health in Pediatric Disabilities

Great things happened in the city of Mason, Ohio! Mason City

Council made a proclamation that March 21 is officially World Down

Syndrome Day in the City of Mason! By this proclamation, the

City of Mason shows its commitment in celebrating and valuing the lives and equality of

people with Down syndrome.

Thanks to the Butler Warren Community Group for their

hard work in making this happen in their neighborhood.

2014

Coming Soon!

March 2014

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

1 Sign Language Class (ages birth - 5 years)

Dramakinetics

(6 years - 10

years) Eastside Fam-ily Event

2 Westside Family Group Annual LaRosa's Din-ner

3 4 Dramakinetics (ages 3 years - 6 years)

5 6 7 8 Family Re-source Con-ference

9 10 11 12 Music Thera-py (ages 3 years - 5 years)

13 14 DS Plus Fami-ly Night-Technology and Game Sharing

15 PT for Little Ones (ages 3 months - 3 years)

St. Patrick's

Day Parade

16 17 18 19 20 Bringing In World Down Syndrome Day (ages 16 & up)

21 World Down Syndrome Day!

22 PT for Little Ones (ages 3 months - 3 years)

23 24 Music Thera-py (ages 3 years - 5 years)

Eastside

Moms Night

Out

25 26 27 28 29

30 5th Annual World Down Syndrome Day 5K

31

Martha Ostendarp Early Matters Coordinator

Early Matters facebook https://www.facebook.com/ martha earlymatters

www.facebook.com/dsagc

Please CLICK HERE for the 2014 Winter Ds Press.

All we need is a little love!

With New Film, Boy With Down Syndrome Gets Taste Of Stardom right click & open hyperlink

In “Little Accidents,” which premiered at the Sundance Film Festival last month, Beau plays James, a role conceived by writer/director Sara Colangelo specifically for a young boy with Down syndrome. Following a devastating mining accident that kills their father, James must protect a secret with his older brother. The

drama charts the lives of several families in the coal-mining town in the wake of the tragedy, which left only one survivor

Smiles of the week! You can be anything you want to be!