Your Dollars DO Make a Difference

Dear DSA Friend,

I know there are many, many worthy organizations that deserve your support. The fact that you are considering supporting one of “my” children means the world to me. I’d like to tell you a little bit more about DSA and let you know exactly what your dollars can do in our community.

14137972_10210255872731621_5589803318993496626_oThe Down Syndrome Alliance of the Midlands (DSA) is committed to connecting those touched by Down syndrome through education, advocacy and support. We serve over 400 families, plus their educators and health care providers, across Eastern Nebraska and Western Iowa.

DSA was founded in 1999 by a handful of parents who felt the need to associate with other families of children with Down syndrome. For ten years it functioned as an all-volunteer organization. The first employee was hired in 2009. The second and third were added in 2014 and 2015, bringing total staff hours to 65 per week.

In 2012 DSA leaders made a concerted effort to become very active in the national Down syndrome community. DSA is an affiliate of the National Down Syndrome Society (NDSS), the National Down Syndrome Congress (NDSC), and the Global Down Syndrome Foundation. DSA is also a member of the Down Syndrome Affiliates in Action (DSAIA) and the Heartland Genetics Services Collaborative. DSA’s Executive Director is the President-Elect of the DSAIA Board of Directors and DSA’s Board President is a co-winner of the 2015 NDDS Ambassador of the Year Award. These commitments have enabled us to bring professionally-developed programs and resources to our local community.

To help children, we support the whole family.

Parents are supported as soon as they reach out to us, which is often early in a pregnancy with a prenatal diagnosis of Down syndrome. Peer support is crucial as some of our newborns face medical issues that result in NICU stays or even heart or abdominal surgeries.

Our flagship program is the Down Syndrome Education Series (DSES). Each month, a speaker in the field of Down syndrome education, health care, or research is brought to Omaha to present information to DSA members that will positively impact the well-being of their children. Separate sessions are offered for professionals, usually educators who will take information to disseminate to schools in 20 districts. DSA created this program in 2014 and received a start-up grant from the Global Down Syndrome Foundation. No other Down syndrome organization has a program of this caliber and format that is free for parents and professionals to attend.

In the fall of 2016, DSA launched a tutoring program for preschoolers and school-age children. Parents will be instructed on how to support each lesson at home in between sessions.

Individuals with Down syndrome and their families are eligible for scholarships and stipends to attend NDSS and NDSC annual conferences. Both offer self-advocate trainings and breakout sessions. DSA offers $500 scholarships to teens and adults with Down syndrome to support their efforts to grow in independence and self-expression.

DSA hosts social events and roundtables throughout the year to foster relationships among our members. Many of these opportunities include activities that might be out of reach for families struggling to manage the financial burden of caring for a child with special needs. We offer respite for parents and siblings, as well.

DSA is also one of 16 organizations in an 8-state region with facilitators to train parents in creating a medical home for children with genetic disorders. A second grant from the Global Down Syndrome Foundation allows us to include a generous childcare stipend for parents attending the all-day training.

What will your dollars do?

Welcome 15-25 babies to the Omaha Metro each year

Your dollars will support presentations to OBs, Geneticists and Genetic Counselors, Maternal-Fetal Specialists, Labor and Delivery Staff, NICUs, and Pediatricians to ensure that current, relevant, and accurate information about Down syndrome is available to all patients who receive a prenatal or postnatal diagnosis of Down syndrome. You will encourage the use of neutral language (“I have the result of your test” rather than “I have bad news”) and emphasize the importance of local support. Your dollars also purchase nationally printed and medically reviewed materials for physicians and patients, DSA’s own Guide for New Parents, and beautiful board books for the little ones.

Support education advocacy

Sustain DSA’s flagship program and help implement the new tutoring program for school children. Your dollars will also grow the tutoring program by adding a second level in our 2017 / 2018 school year.

Increase organization capacity

Increase total staff hours, allowing DSA to develop and deliver more programming while transitioning the board of directors from a working to a governing board. Invest in the professional development of staff members to strengthen the service they provide to members.

Increase stipends and scholarships

Currently the stipends to attend the National Down Syndrome Buddy Walk on Washington and the National Down Syndrome Congress Annual Conference are $250 and the self-advocate scholarships are $500. Increasing the stipends and scholarship budget will allow for either greater payouts or a concerted effort to encourage more applicants because more funds will be there to award.

Send families on fun excursions

You can imagine that a family whose budget must consider multiple therapies and adaptive devices that aren’t necessarily covered by insurance might have to pass on buying tickets for a trip to the world’s best zoo. Your dollars can increase the special events budget to include a day at the Henry Doorly Zoo, as well as other events and attractions in Omaha.

Your dollars will connect our parents and children to education, to advocacy efforts, and to each other. Your dollars, donated to one team, will impact hundreds of families.

Thank you for your generosity.

Anne Mancini, Executive Director


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September Newsletter

And the top fundraising prize for the 15th Annual Omaha Buddy Walk® is …


You read it right. My friend with Down syndrome and two adults will be DSA’s guests at the NDSS Buddy Walk® on Washington or the NDSC Annual Conference. Winner’s choice. Trip includes conference fee, airfare, hotel, and meal allowance. This goes to the team that raises the most money.*

*Board and staff not eligible to win.

The team that raises the next highest amount will win Creighton Men’s and Women’s Basketball season tickets and the team with the most members will win a family pass to the Henry Doorly Zoo.


These volunteers spent a crazy night working at the Foam Glow 5K to earn an incredible $4740 for DSA! THANK YOU!


The Learning Program Omaha will start this month with a lead teacher, assistant teacher, occupational therapist, speech-language pathologist, lots of volunteers, parents, and twelve little students! It was very exciting to see the session fill within hours of opening. There are still options for parents and educators to learn the material. Do you like to work with little students? Contact Leah Janke for more information.

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Back to School

Author: Buffy Beightol, DSA Board Vice President



Middle School. A parallel universe. A place where ‘babies and blossoming teenagers’ coexist under the same roof. New things and words like lockers, modules, Industrial Technology, Foreign Language, school dances, team sports are all a part of the experience of middle school. My daughter Bailey started 6th grade this week. Until now, she’s been in this wonderful, positive, warm fuzzy cocoon of elementary school where teachers, friends and paras ALL knew her name, her family, her dog Ozzy, her love of painted nails and wearing bling, her picky eating habits, and when and how to assist her best.

Now we start over. Can I tell her teachers enough about her or too much? Will they realize what may be overwhelming or scary for her? Will they try something new and if it fails, try it again, and again? Will they be able to discover new things about Bailey? Will she make new friends, continue developing her social skills, expand her knowledge, increase her independence, improve her communication skills, maintain her self-respect and dignity, with few setbacks, little resistance and lots of smiles?

At our transition meeting, we wanted her new support team to know just enough about Bailey to help her adapt to the new environments, yet not tell them too much so that they can discover new things about her and to develop new bonds that she has not had before. It’s a slippery-slope, forging into new territory like this, but we have positive attitudes, open minds, and realistic expectations for the school, staff and Bailey. It is a joint effort between us as parents (advocates) and the school. It is an effort that is constant and ongoing. It requires open-communication, mutual respect and shared expectations. It is a relationship between professionals and parents that keeps Bailey’s needs as our top priority.

It was just yesterday, we dropped her off for the first day of kindergarten. At least it seems that way. She has changed so much and so have our expectations. But something that has never changed, is our goal of wanting her to be happy, to be safe and to enjoy going to school.
We’ve only had 3 days of school, and I am sure that if other parents saw how Bailey runs out of school and into our arms with the biggest smile and hugs while yelling “Daaaaaaaaaad. Mooooooooooom.”, they’d be jealous. It is the highlight of our day. So far, so good.

Buffy is a mom to three children, Bailey, Brooke and Ryan. Her and her husband Larry’s oldest child has Down syndrome. Buffy has been involved in DSA since Bailey was quite little and joined the board in 2011. Having left behind an 18-year career in retail management to stay home with her children, Buffy is now re-inventing herself as a paraprofessional in the Millard Public School District.

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August Newsletter

This gallery contains 6 photos.

  Sept 3, 9 – 11:30AM Roddy Field, Bellevue East HS New this year! Our Buddies are invited to the Storm Chasers game in the evening and will get to walk out on the field with the players for the … Continue reading


July Newsletter


Buddy Walk® Kickoff Party!

August 4th

It’s everyone’s favorite time of year again! It’s time to get your teams registered and start fundraising for the Buddy Walk®. Join us on August 4th from 5pm – 8pm at Walnut Grove Park. Enjoy a free pizza dinner while you learn about what’s new for 2016. There will be a video game truck for the kids and everyone who registers their team will have a chance to dunk their favorite board members in the DUNK TANK! All teams will also have a chance to win a highly coveted team tent spot! Click HERE to register for the party.

unnamed (15)Dr. T.J. Holmes Memorial

DSA’s Board and Staff would like to express their condolences to the Holmes family on the passing of Marci Franzen’s father. Marci’s family and friends have made generous contributions to DSA in memory of Dr. Holmes to benefit Sophie Franzen and all of her friends with Down syndrome.



July 24

unnamed (16)Looking for some FREE fun in the sun? This year’s Swimming Party will be Sunday July 24th from 7-9pm at Zorinsky Pool. Snacks and water will be provided. Click HERE to register.


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August 6

Volunteer at the Foam Glow 5K – if we can get to 40 volunteers (max 50), each will earn a $75 donation to DSA! We have 18 so far.

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June Newsletter

New Educational Programming

DSA is proud to offer The Learning Program™ Level 1 in the 2016-2017 school year! Certified teachers will work with both parents and children one Saturday per month. Instruction will be specifically tailored to the manner in which young children with Down syndrome learn best.

The Down Syndrome Foundation of Orange County, CA partnered with educators, researchers, therapists and administrators to develop a program that uses effective teaching strategies and customized materials to support parents, teachers and children in the educational process. The goal of The Learning Program™ is to empower parents as advocates for their children and improve academic outcomes. The Learning Program™ complements formal instruction in literacy and math, and includes occupational and speech therapy components.

This program is open for children ages 4-7 and their parents. Students in the classroom receive monthly small group instruction with a focus on literacy, numeracy, fine motor, and language development. Parents in the program receive monthly instruction on a wide range of topics such as “Teaching Your Child to Read”, “Introduction to Math” and “Creating an Effective Learning Session”. Teachers affiliated with the program receive information about effective teaching strategies and cognitive, developmental and educational research.

The program will run September – May (excluding December). Registration will open in July with 12 available spots. Tuition is $200.

DSA’s staff and board offer their deepest sympathies to the Ashchi family on the passing of Aja Trinity, who lit up our community for a short but immeasurably adorable time. Aja will always be part of our hearts, and Carrie, Tristen, Brianna, and Sophia will always be DSA family.

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NDSS Times Square Video Contest runs through June 17. We love to see DSA faces on the Jumbo Screen! Click HERE for details


Storm Chasers Gameunnamed
Registration is now open! Join us on July 16th when the Down Syndrome Alliance of the Midlands will be the community organization of the night at theStorm Chaser’s game. Tickets are just $5 each! Children 2 and under do not require a ticket if they don’t need a seat. There will be a limited number of tickets sold and registration will close June 23rd so don’t wait! ClickHERE to register.

Swimming Party
Looking for some FREE fun in the sun? This year’s Swimming Party will be Sunday July 24th from 7-9pmat Zorinsky Pool. Snacks and water will be provided. Click HERE to register.

unnamed (1)Many thanks to those who supported DSA through Omaha Gives!
Elizabeth Bailey
Kim Bainbridge
Rollin Biel
Kurt Boustead
Charlotte Curry
Ervin & Smith on behalf of Nicole O’Neill
Alan Gard
Sherri Harnisch
Nick Heinrich
Mary Beth Holmes
Justin Hope
Richard Hunt
Sharon Jabens
Rebekah Jerde
Renae Kirby
Marlys Lien
Mary Lukaszewicz
Jane Oaken
Therese Paladino
Amanda Patrick
Jeanna Pine
Jennifer Rohacik
Todd & Jennifer Scholz
Alexis Stearns
Dori Wanitschke
Lisa Webb
Bill & Judy Wimmer
Ellen Yates
Tira Zech


The Sikora Family boasts more than one writer!

The Parent’s Guide to Down Syndrome, by Mardra Sikora and Jen Jacob, is reviewed by Anne Mancini and Trisha Stibbe on DSA’sDownRight Perfect.

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Book Review: The Parent’s Guide To Down Syndrome

Review by Anne Mancini, Executive Director and Trisha Oyos Stibbe, Parent – Down Syndrome Alliance of the Midlands, Omaha, Nebraska

Full disclosure! We know – and love – Mardra, and her son Marcus Sikora.  

Anne: When I schedule a meeting with Mardra, I block out some extra time, because I know we are going to find more to talk about than what’s on our agenda. Marcus and I are in a book club together. I got to see these two in action when I attended an author reading of Black Day: The Monster Rock Band. They are joyful and fun to be around, but Mardra isn’t afraid to tell the hard truths. She is not apologetic about her choices and opinions. She is a well-educated and passionate advocate for Marcus and his peers. So I knew before I opened the book that there would be a lot of Mardra’s heart in it.

bookTrisha: Claire was only a few months old when I first met Mardra and Marcus. My husband and I listened to this power duo talk about advocacy and were so inspired. Seeing a young adult with Down syndrome being fully engaged and immersed in the “real world” gave both of us such hope about Claire’s future. After speaking to Mardra, my passion for advocacy grew, and I know it was due to her setting such a strong example.

Anne: The very first thing I appreciated about The Parent’s Guide to Down Syndrome is the advice to seek out a local Down syndrome association. As the director of the Down Syndrome Alliance of the Midlands, I have the privilege of watching my families welcome each other to the community and share stories and support. This book will provide that sense of community for any parent not quite ready to dive into a local organization or who unfortunately does not have one geographically accessible.

Trisha: My husband’s work causes our family to move quite often. In the next three years we will live in three different states. Finding the Down Syndrome Alliance of the Midlands was finding “my people.” There was no prefacing feelings, I met people who understand that sometimes laughing is the best medicine, and we compare and recommend physicians, therapists, hospitals, etc. Having a local support system has been invaluable. When I am about to lose my mind over this new life, I talk to the other moms, go to the get-togethers, and yes, even cry. Because these friends get it like no one else does.

Anne: Just like most organizations, this book features the voices of parents of all walks of life, with children of all ages. There are stories about hearing the news, breastfeeding, having more children, becoming a community advocate, and sending your child to college.

Trisha: Reading the birth diagnosis stories took me back to the day Claire was born. I thought, “So, it wasn’t just us?!” Other parents had experienced the same joy-combined-with-grief that so few understand. I was able to identify with all of those stories, good and bad.

Anne: In our community, we know that when faced with a diagnosis of Down syndrome, there are many things about which a new parent doesn’t even know yet what to ask. I was pleased by the explanation and discussion of topics such as the blue and yellow colors, school acronyms, and guardianship issues. Because it is presented chronologically, the information can be digested in the early days and referred to again later, or taken in bit by bit as the child approaches those transitions.

Trisha: The format of this book was easy to read and digest, given the vast amount of information. I read it all in one sitting and dog-eared several pages. While Claire is only 9 months old, it was still invaluable to read some stories of those with older children with Down syndrome. I don’t think one can ever be too prepared.

Anne: Trisha and I are proud to recommend this book to parents of children with Down syndrome. We think wherever a parent might be on the journey, a connection to information and other parents’ stories is extraordinarily helpful and can be found in these pages.

The book is available at Barnes & Noble (in stores and online) as well as Amazon. For special offers, click here.


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April Birthday Buddies: Happy Birthday Conner and Ethan

Conner turned 15 on April 1st. He loves to get mail and can’t wait to use his gift card!



Ethan celebrated his 13th birthday. He used his gift card to buy a new Star Wars book!


Thanks to Conner and Ethan’s parents for sending in these photos. We love watching your children grow and thrive!

Don’t forget! If you’d like your child featured in our Birthday Buddies post for May, just send a photo or two to by May 26th.

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May Newsletter

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DSA is proud to be participating in Omaha Gives! ‐ a 24‐hour charitable challenge organized by the Omaha Community Foundation. The online giving holiday will take place May 25 from midnight to midnight. Mark your calendars because we will need your help! We will be joining over 700 local nonprofits to raise money together and compete for matching funds and prize money. The more money we raise, the larger percentage of the bonus dollars we will receive. The more donors we get to give to us, the more likely we are to win prizes.

Omaha Gives! is a one‐day event led by the Omaha Community Foundation to raise as much money as possible for local nonprofits through online fundraising. It is a community‐wide event to show off Omaha’s spirit of giving, raise awareness about local nonprofits, and celebrate the collective effort it takes to make this city great. Learn more at

Siblings Party – May 28mario

We think it’s important to acknowledge the unique bond our family members with Down
syndrome have with their siblings. Being a big or little brother or sister to someone who needs a little extra attention can be tough, and we want all of those siblings to know just how special they are.
On May 28th DSA will host an awesome party just for them! Come down to Walnut Grove Park from 3pm-5pm for snacks, cake, and a VIDEO GAME TRUCK! The truck is 32′ of fun! It seats 25 or more inside with tiered stadium seating. The truck features SEVEN 50″ HDTV’s (five inside, two outside) that allow up to 28 players to play on the Xbox One, Xbox 360, Wii, Wii U and PS3 gaming systems at the same time! This event is best suited for children 5 years old and up. Children 9 and under must be accompanied by an adult. Registration is just $5 per sibling. Click HERE to register.

Berry Pickin’ Picnic – June 11unnamed (20)
Nothing says “summer is here!” like fresh strawberries! On June 11th join us at the Bellevue Berry and Pumpkin Ranch for a Berry Pickin’ Picnic. Meet up at the Kicking Horse
Café for lunch at 11:30am.

Afterwards, be sure to stick around for fun on the farm including a hayrack ride and the chance to pick your own fresh strawberries. Tickets are just $5 each or $20 per family. Tickets include admission to the farm, a hayrack ride, strawberry picking, and lunch consisting of BBQ pork sandwiches, sides, and a drink. Click HERE to register.

More Summer Plans
Storm Chasers Game June 16 DSA will be the community organization of the night. Watch for details in upcoming newsletters and on DSA’s Facebook page.
Pool Party July 24 from 7-9pm at Zorinsky Pool.


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Little Hands At Play

Author: Stephanie Adam, OTD, OTR/L

During the first year and beyond, those little hands will be busy.  While it’s very important to keep working on tummy time to develop the skills for independent sitting and improved core stability and strength, it is also important to give your baby opportunities to use her hands together for play by providing the necessary support for her body.  It’s great for babies to be given the opportunity for seated exploration right away. They won’t be able to do much, and will require a lot of support in the beginning with an inclined chair or leaning against your tummy or knees.   Even though they’re tiny and you will be doing most of the work, these are great early opportunities to start reaching and lifting those little arms and turning that sweet little head to see what’s going on around her.

There are many seating options available that provide varying degrees of support.  Choose the one that provides the least amount of support necessary to maintain the desired position.  For example, a newborn will require total support in a bouncer, Boppy pillow, or on your lap to begin reaching and lifting her arms.  However, as your baby gets bigger and stronger she will be able to tolerate being more upright in her bouncer, and then as her head control improves she can move to an infant seat, and eventually just a Boppy pillow.  You want to provide enough support to be safe and secure and enough freedom to work on emerging skills and to get a little exercise.  If your baby is not yet able to hold her head up, you will need to support her entire trunk and head for her to use her hands for exploration and play (a high back feeding chair).  If she is able to sit with support and hold her head up, maybe you will just need a positioning tool to support her at her hips (a Boppy pillow).

There are a wide variety of options available, and you may transition through a few of them based on your baby’s skill level.


Graco 4-in-1 Seating System with Recline



Megaseat Infant Floor Seat with Safety Belt



Bumbo Seat


Fisher Price Sit-Me-Up Floor Seat with Tray


Sassy Sensory Seat


Boppy Pillow


You’ll know you’ve found the best seat with the appropriate support when your baby is able to use her hands easily. It’s important to provide opportunities to explore and play with her hands in a variety of positions such as while lying flat on her back – reaching for and manipulating toys in this position requires working against gravity. The extra challenge of working against gravity provides great opportunities to improve strength, stability, and coordination in the shoulder and upper arm. This also provides great practice for coordinating and controlling the small muscles of the hands to work together to reach for, grasp, and pass a toy between hands. There are many options for baby activity mats that allow for toys to be suspended above your baby to complete these activities. This activity can also easily be accomplished with any visually appealing object or toy held within reaching distance by a parent or caregiver, or even by playing games or singing songs that require actions or bringing their hands together. These activities can also be completed in side-lying (rotate between sides) and in a semi-reclined position such as in a car seat or reclined high-chair. Each of these positions requires your baby to work against varying degrees of gravity, to utilize different muscles in their shoulders, arms, and hands, and requires they coordinate their vision and motor skills in a variety of ways.

Now, back to the seat. The more opportunities your baby is provided to play and explore objects in a supported seated position, the more quickly she will develop more control for grasp and release of objects and become more successful in functional and play activities. Provide toys for play that can easily be picked up, that make noise and/or are interesting to look at and feel. As your baby becomes more coordinated with her movements you can provide activities for putting in and taking out of a container, you can begin to provide toys of varying sizes and weights – larger and heavier toys will require using hands together to lift and manipulate, smaller toys or objects will require more coordinated movement and increased stability from the shoulder and big muscles of the arm. Be sure to provide time for these activities each day.

Playing in a supported seated position will quickly become a favorite for both you and your baby – they can play and learn in a safe position, and you can have a few minutes with your hands free for other activities! However, it’s important to continue to work on independent sitting. This skill is still very necessary for the functional development of grasp and fine motor coordination. Babies typically begin to prop themselves up with their arms when they are learning to sit, however, babies with Down Syndrome can sometimes have proportionally shorter arms making this task very difficult when combined with low tone. Trying to sit without the proper positioning support can start some bad habits such as letting their heads fall back to be supported by their upper back. This can be a hard habit to break if allowed to continue, and it delays the development of good head and neck control against gravity. To prevent this posture you may need to provide additional supports to encourage the correct seated position. This may include a small box or book to support their arms on in front, which will require that their head move forward and be held up over their arms. They may also require additional support behind their back with a cushion or pillow. Your baby may need a lot of support in the beginning, but you’ll see that they will require less and less as they are allowed opportunities to practice.

I know this is supposed to be a focus on fine motor development and grasp – and it is! These skills are imperative in the development of functional fine motor skills and grasping patterns. It may be hard to see this when watching your baby as she begins to use her hands to reach, touch, and play, but if you think about what she’ll be doing one year, three years, five years from now…if she isn’t able to sit independently she won’t be able to take her socks off and put them on, she won’t be able to lift a cup to her mouth or feed herself independently, or learn to write her name or cut out shapes. If the big muscles aren’t strong and stable, the little muscles can’t learn all of the important skills they need to.


Now, for those little muscles…your baby will get right to work trying to use their hands.  She’ll hold on to your finger and before you know it she will be reaching for toys and objects in front of her.  Every child progresses through a series of grasping patterns leading to a well coordinated and controlled pincer grasp. For children with Down syndrome they may move through this series more slowly, they may require more support and practice, and they may hold their hands or use their fingers a little differently, but the goal is the same:

  • All  children start with a grasp that is completed by using the bigger muscles of the hand and is called a palmar grasp.  The fingers do very little in manipulating an object – just opening and closing to hold onto it.
  • Next, the fingers will begin to get more involved. You may notice that they are beginning to move more independently when picking up and holding onto an object, rather than together as a unit.  Objects will still be held within the palm, but will be up higher in the hand and will beginning to move into the fingers.
  • The next grasping pattern is called a mature grasp. You’ll recognize this because objects are picked up and held by the fingers.  There is a space evident between the object and the palm and your baby will be using his hands more efficiently and in a much more coordinated way.
  • Those little fingers are getting stronger all the time and preparing for the pincer grasp.  This skill will start with a raking motion.  The fingers will “rake” items to bring them into the palm and scoop them up.  As the general coordination of the hand improves, so to does the ability to isolate the fingers and then…it happens.  They can finally pinch that Cheerio between their little fingers and bring it to their mouth,and just like that a whole new world begins!

This simple little skill paves the way for so many exciting things…learning to hold a crayon, writing letters, feeding themselves with utensils, managing snaps and buttons…lots to learn!

Will you remember all of that practice laid back in a high chair or propped up on the floor in the Boppy, or teaching her to hold her head up? How about all of that practice picking up rattles and blocks, and dropping them into a box or learning to pass it between her hands or to you? Maybe you’ll remember all that it took to get those two little fingers to pick up that little Cheerio, but all the work will be worth it…for both of you.


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