DSAM: The O.T. Necessity

Carolyn and Blake in January 2014

We are almost to the end of Down Syndrome Awareness Month. Can you imagine me having an entire month full of content primarily dedicated to Down Syndrome? This is a very mulit-dimensional topic and there is enough material for every day of the year (and beyond) really if I sat and broke it all down. Parenting a child with Down Syndrome is no joke, but it's also joyful.

Being an Occupational Therapist to someone with Down Syndrome is a fine balance of challenge and reward. Carolyn Myles (Occupational Therapist MEd, OTR/L) was assigned to Blake as part of the early start program in our county. He was 3 month's old when she came into Blake's life and I have been grateful ever since. She is a knowledgeable practitioner who truly cares about your child's success.  We have received customized care and guidance from here and amazing tips and tricks for activities that cater to Blake's strengths, likes and to address his challenges.

Carolyn & I

She has agreed to share some of her wisdom and experience as it pertains to the Down Syndrome population and Blake!

The Role of Occupational Therapy with an Individual with Down Syndrome

Occupational therapy practitioners ask, "What matters to you?" not, "What's the matter with you?" In its simplest terms, occupational therapists help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (American Occupational Therapy Association – AOTA).  We are trained in child development, neurology, medical conditions, psychosocial development and a range of therapeutic interventions.

We guide individuals with Down Syndrome and their families to help them master skills for independence and reach their potential! (Yamkovenko, 2008).  Stephanie Yamkovenko, writer for AOTA, recommends that Occupational Therapy intervention should begin as soon as a diagnosis of Down Syndrome is established and could potentially continue throughout the individual’s life!

“An occupational therapist can help parents place expectations that are appropriate to the ability of the child,” says Asher, MA, OTR/L, chairperson of the AOTA’s Developmental Disabilities Special Interest Section.

For example, occupational therapy practitioners can help mothers whose children have feeding problems possibly due to weak muscles in the face.  During childhood therapy can focus on mastering motor skills, especially fine motor skills, for independence overcoming potential challenges such as low muscle tone, loose ligaments, and visual and auditory deficits. (Bruni, 2001)  Occupational therapists assist in school to facilitate fine and visual motor skill development to access to the curriculum as well as provide adaptations for optimal performance. Adults with Down Syndrome may benefit from therapy to maximize independent living skills and participation in healthy active recreation.  The goal is always to enable the individual to “live life to the fullest” (Asher).

We, as Occupational therapists work with the whole person and our philosophy is commensurate with that of John Colman, President of the National Down Syndrome Society in 2008 when he stated “People with Down Syndrome, like everyone else, are people first, each with their own unique gifts to contribute.”

We provide our intervention and expertise in a variety of ways:

By:

- observing  the child

- coaching the adults that interact with that child

- adapting the environment to provide the “just right challenge” for the child

- breaking down skills so that expectations are appropriate

- suggesting positioning or adaptations

- providing a range of play based, sensory motor, skill based therapies

- providing programs in school to promote and enhance sensory motor development

- address any sensory differences a child has and offer suggestions 

- work with families to embed therapeutic activities into their own unique routine

- working as a member of the team to help children achieve their potential in life.

Finally, we understand that ALL children have varied personalities, temperaments and motivations.  The true “art of therapy” is understanding and working with the whole child and discovering the “key” that unlocks their highest ability!

It has been my absolute pleasure during my Occupational therapy career to work with children with Down Syndrome.

I have often met these children as young babies, and watched them grow and develop.  To me they are first and foremost children with their own personalities and temperaments and my goals are the same as for all children; to reach their highest potential.

I had the pleasure of meeting Blake and his family when he was just a few months old.  He was always social and charming, and very early on showed his opinion regarding his likes and dislikes!  For example, he loved books and would sit and turn the pages, but resisted the transition from a bottle to a sippy cup (many were tried!) and would throw it across the room!

Blake is quite the “sensory seeker” and the “art” of therapy with him has been to provide opportunities for him to have his sensory needs met so that he can use his body appropriately to develop his gross and fine motor skills.  He enjoys climbing, and “crashing” and all kinds of active play.  

At home now he enjoys being outside  and wandering around his garden.  Now the emphasis is on providing natural opportunities as he wanders to engage and explore – such as digging in sand or mud, drawing on  his easel or on the ground with side walk chalk.  The goal is to provide as many opportunities as possible to work on Blake’s motor skills in the most playful and natural way through his every day routine.  Blake continues to have strong opinions and likes and dislikes!  He responds best to peer modelling and is lucky to have his older sister Kaleigh as his very best therapist.

It was so rewarding to visit Blake recently at his preschool.  He followed the class routine and played appropriately with his friends and the toys.  He was just “one of the boys” with the train set, cars and toy garage.  What an amazing example of inclusion working!

With the support and advocacy of his family, and appropriate therapeutic support when needed there is unlimited potential for what Blake can achieve.  I feel so privileged to be a small part of his journey.





References

American Occupational Therapy Association – The Role of OT with persons with Down Sydrome – by Stephanie Yamkovenko

Bruni, M. (2001) Occupational therapy and the Child with Down Syndrome – http://www.ndss.org/Resources/Therapises-Development/Occupational-Therapy -Down-Syndrome

National Down Syndrome Society

DSAM: Siblings Sound Off

Kaleigh's hand written submission for this blog. Published here unedited.

On this 27th day of Down Syndrome Awareness Month I wanted to look at Down Syndrome from the perspective of the Sibling. Blake is lucky enough to have 3, flanked by 2 sisters with a big brother to watch over the group.

Did you know? In 2011, Dr. Brian Skotko found in study conducted at Children’s Hospital Boston, “among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.” (see reference below).

I have said many time's that Blake being born with Down Syndrome is making my children more compassionate, empathetic, helpful and kind human beings. I asked them to communicate, in their own words their feelings about Down Syndrome, Society and their little brother Blake.

Kaleigh Rain, 7 Years old:

"Kids that have Down Syndrome are just like regular kids. There is nothing wrong with having Down Syndrome. Blake and I like to dance together to music. We also like to play outside. Blake is very good at art. Blake sometimes gets a little dirty and everyone needs an extra bath.

 We like to laugh and wrestle. As sister Kaleigh I have to stick up for Blake. Blake has fun at school. I love him even that he doesn't even know his name yet and everyone is different. I hope you will be nice to kids and grown ups with Down Syndrome." 

Danica, Age 13: 

"My baby brother has Down Syndrome. Many people thing Down Syndrome is bad and that but they're just like any other person. My brother Blake is just like any other kid, he's fun, sunny, caring, sweet and so much more, I enjoy having him as a brother so much, he has brightened my life since he was born. I have had so many memories with him that I will remember my whole life.

He makes me remember what it was like to be younger and how I just wanted to do what I wanted to do and how much I loved my family. Blake has shown so much to me. I may be the older sibling the one to be an example but he showed me things that I didn't know before like I didn't even know what Down Syndrome is before I found out Blake had it. I didn't think any different of him, he was just like everyone else. When my step mom and my dad told us what it was I still thought Blake was normal. I'm so thankful to have my little brother Blake and can't wait to share many more memories with him."

Dylan, Age 17:

"Don't let Down Syndrome change your opinion on a person. I have watched my little brother grow up for 4 years now and he is still just as loving and kind as anyone else if not more.

 He excels everyday just as any other kid does. I'm positive hes just as smart as children without Down Syndrome in his age group. I wish people wouldn't put titles on people like my brother. 

His life is just as important as mine or yours. Never judge a person just because they have a so called disability, it doesn't change who they are."

When I look around I see the impact that Blake and every other member of the Down Syndrome community is having on the lives around them. They are contributing to the lives of people in their community, classrooms and those closest to them, their siblings. I don't think that my children would have changed their answer in any way if asked by another person. I love that they are considering the impact's of labels society places on people and how a label, like disability does not change who you are. An important life lesson for any child. I am so proud to be raising such loving advocates and allies!

Further Reading:

Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a Brother or Sister with Down Syndrome:  Perspectives from Siblings.  American Journal of Medical Genetics Part A: 155:2348-2359.

DSAM: Nicole's Story

All month long I have had the pleasure of sharing stories from women to whom I am connected to through the extra copy of the 21st chromosome. Who knew chromosomes could connect people? another place that I find gratitude. Nicole is also the founding member of the new local advocacy and education group: CCDSN - Central Coast Down Syndrome Network. I'm proud to serve on the board of this local organization, along with other mothers and it is the first in our area!

Join me in wishing the beautiful Miss Amelia a HAPPY 2nd BIRTHDAY! and enjoy her equally beautiful mama Nicole's story.

On October 23, 2013, I gave birth to my second daughter. A beautiful blue-eyed angel, whom I named Amelia. I knew months before I had her, that would be her name. In fact, thanks to an insufficient placenta, there were a few things I knew about my child before she was born. I knew she was a she.  I knew she was petit. I knew she would be born via c-section. I knew that she was very healthy. I knew sh would wear a Sleeping Beauty costume for Halloween.  And above all, I knew she was a fighter. At twenty-nine weeks, my perinatologist told me to be prepared to deliver early as she didn't think my placenta support my unborn girl for much longer. She told me that I would be lucky to reach thirty-three weeks. So imagine her surprise, and the surprise of my OBGYN when we made it to our scheduled c-section at thirty-nine weeks, without going on bed rest or leaving work early. So, imagine my surprise when on October 24, 2013, the pediatric hospitalist on duty came into my hospital room to talk to Dan and I about trisomy 21.

Dan was not shocked, for the first time in 24 hours he was able to admit out loud that he thought there was something "different" about Amelia. Through the tears forming in his eyes, he looked strangely relieved. I, on the other hand, was in complete shock, I was numb with it. When the physician and nurse left my room, they took Amelia to check her into the NICU and begin some tests. Dan and I were unable to go with her as they were doing a procedure in the NICU and during that time no one was allowed in. Soon after, Dan looked at me, he told me he loved me, he told me it was all going to be fine and he needed to go out for some air. As he kissed me I could feel the numbness wearing off and pain and fear taking its place.

 I took that time to call and text a few relatives and friends.with each conversation the pain and fear took over more until I was a sobbing mess full of irrational thought. Until the day before I had never met anyone with Down syndrome. I knew nothing about Down syndrome, other than the common misconceptions. Suddenly, pain and fear were accompanied by darkness. And then my natural instincts took over.  I grabbed my iPad and began to research, and research. I called down stairs to the ED, where I work as a Data Coordinator, and spoke to my director. She ran up stairs with a pad and some pencils so I could make my notes. I made calls to physicians I knew to get referrals  and copies of articles from medical journals. I was determined to be an expert on all things related to Down syndrome.  With every piece of information, I began to feel more powerful, more in control.  The darkness, pain and fear were being locked away in a very small place deep down inside of me. 

The information I had obtained in those few hours confirmed what the pediatrician said, my beautiful, perfect daughter had Down syndrome. That was abundantly clear to me the first time I was reunited with her in the NICU. Her low muscle tone and tongue thrusting were no longer little quirks. What the information couldn't tell me is what having Down syndrome would me for Amelia, or our family. That unknown would allow the darkness, pain and fear to escape violently from its hiding spot for very short periods of time when I was alone. 

Over the next fourteen days, I got to know Amelia. From day one she was the decider of her own fate. When she was ready to be off oxygen, she reached up and disconnected the blue tube. Everyday I wen to the NICU at 8 am and dressed her in a new outfit. I even dressed her up in her Sleeping Beauty costume on Halloween.  I could tell by the sly look in her eyes she liked the extra attention she got while wearing the princess costume. Finally the day came when Amelia was coming home. Although, Amelia's personality shined so much brighter than her diagnosis. I was afraid. The irrational fear of her coming home pushed the pain and darkness close to the surface. 

It wasn't until Amelia had her first appointment with her pediatrician that I was able to reconcile Amelia and Down syndrome.  After he examined Amelia, read through her medical records, he turned and looked at me. I knew that my pain fear and darkness were all present on my face, like a bad Halloween mask. He very carefully said "She's just a baby. Do with her everything you would if she didn't have Down syndrome."  I asked about daycare, if I would need to quit my job and he said "Would you put her in daycare if she didn't have Down syndrome?  She's just a baby".  No truer words were ever said. 

I often look back at the first couple of months after Amelia's birth and I feel silly, and ashamed. I am ashamed I had so little faith in my daughter. At three months old Amelia started therapy and from day one she has eagerly met every challenge her therapists have given her. Earring the nick name "Amazing Amelia". She meets all of her milestones, some on par with "typical" children and some a little slower. All of them in her own time. 

More importantly, she is already a loving, compassionate, strong willed and sometimes devious little person, in other words: a typical two year old. This is evident by the way she feeds her baby doll everyday.  The way she comforts her older sister, by a soft rub on the arm. And the way she lights up at daycare when she's with her friends. She never lets anyone push her around, nor does she take no for answer.   As we head into the "terrible twos" she makes her opinions known!  

The pain, fear and darkness are almost completely gone. They are being replaced hope, love, admiration and thankfulness. I admire my daughter's strength and determination. And I am thankful to her and her extra chromosome for what they have given me. Over the past two years, I have found a purpose greater than I ever had before. I will do my best to make a world that is accepting of my daughter. I will follow Amelia's example, I will not give up. I will be an advocate, not only for her, but for everyone that is thought of as "different".  I will fight anyone who tries to get in her way. And I know that I am not alone. Over the last two years I joined a wonderful community. A community full exceptional people that I wouldn't otherwise have the pleasure of meeting. 

Although, I am definitely more raw since Amelia's diagnosis, overall I am a better person. I am a better mom, to both of my daughters. I will admit, it is difficult and sometimes exhausting. However, it is always worth it. And I wouldn't change anything about either of my girls. Down syndrome is as much a part of Amelia as I am. I am no longer afraid of Amelia's Down syndrome, I have truly accepted and embraced it. And you should too! 

DSAM: Laura's Story

Mark Asher

As we welcome the 18th day of Down Syndrome Awareness Month I am pleased to introduce my friend and Birthday Girl Laura. We connected through the ' little something extra' shared by our beautiful boys. I'm so thrilled to be able to share her story as she was to write it. She communicated to me that really writing down her thoughts and feelings here was a very cathartic experiences. Through both tears and smiles she has graciously shared her real experience of being a mother to three lovely boys, one of which happens to have Down Syndrome.

Laura and I at Blake's Paw Patrol Themed 4th Birthday!

Hello, my name is Laura Hansen, and my husband Darin and I have three sons: Nate (13), Luke (11), and our sweet little angel boy, Mark Asher, who is almost 3 and one half years old.  Our story begins back on May 31, 2012. Mark Asher came into this world earlier than anticipated, as a "late term" preemie, meaning he was born on the last day of the 36th week of my pregnancy.  This alone was a shock, as I had always carried my previous pregnancies full term. My pregnancy was uneventful, and all appeared "normal" along the way. We had no idea that we were going to be having a baby born with Trisomy 21, or more commonly known as "Down Syndrome (DS)". 

Mark Asher was born late in the afternoon, with all my family there to greet and hold him, and was as beautiful as ever. He had ten fingers and ten toes, nursed like a champ (even though the nurses said that was unusual with DS), and he had the sweetest disposition. It's as if the sweetness in that room of a Mother's and Father's unconditional love for their precious child whom they so desired to have, prayed for, and received, bridged any fear that traversed the universe in that moment!  I leaned in and kissed his forehead and held him even tighter. I'll never forget later my Mother had some tears and I said, "Oh Mom, it's going to be ok," and she said, "Honey, I'm not crying because he has DS; I'm crying because you have no idea what a gift from heaven you have just been given."  So from the beginning, we were all caught off-guard, and yet, he was perfect from Day One as far as we were concerned. He was named after my Father (Mark), so that was also very special.  All would be ok, in time, as we learned to truly embrace our son, and trust God every step of the way with our little miracle baby. 

We now had a third son, a boy who was given to us as a blessing, yet we had no idea how that would turn our lives inside out, upside down , all the while learning to navigate, discover, advocate, and support a new understanding of what it means to have an "extra" chromosome. 

FOR NOW, we just needed to be parents, and adjust to having a little baby again, and all that comes along with that. Our boys adjusted very well, however, they had many questions and concerns obviously. Would he walk, would he talk, would he be able to go to school, play sports, make friends, even get married and drive a car!! The concerns were all "normal" and to be honest, those probably ran through my mind at one time or another. The interesting thing about our situation is that Mark Asher "looked" so normal, and acted so normal, so it all felt surreal. With the help of amazing doctors and our beloved pediatrician and OB, both being Christians and supporting LIFE, they made our fears, concerns, and questions seem legitimate and warranted. We knew that this was a walk that only a few are chosen to go on, yet the journey would prove to be the real test of time.  God must have known we were the perfect family to raise this little angel, and trust me when I say, he has brought immense JOY and LOVE, LAUGHTER and MEMORIES into our home, and that will last a lifetime.  We can't imagine our lives without him in it. 

Exactly four years ago today, on my birthday, we found out I'd be having a baby, something we'd longed for and yet it just had not happened thus far. Hence, that is the gap in our children. I think of it as if GOD was waiting for us to prepare for Mark Asher's arrival. Today, as this article is being presented in this blog, I am honored to share in such a special time of year, THE MONTH OF OCTOBER, which we celebrate as Down Syndrome Awareness Month. SO, it truly has a double blessing for me!  

Mark Asher is a normal little boy, and he is very well adjusted (figuratively, and also literally, since I'm a chiropractor!) He's so bright, very high functioning, funny as all get out, has an incredible attention span, and is extremely patient when learning new things.  He truly is a special little boy who brightens the world around him and he makes others feel loved and important too. Fortunately for Mark Asher, his love for anything musical is incredible, as his Daddy is an awesome pianist.  So, to sit and watch them play together is magical.  Mark enjoys many things as most toddlers do, but as of late, he has been attending preschool, and for that, we are very grateful. He is in a typical school where he is modeling behavior and learning one-on-one skills, learning to navigate the playground, riding all types of toys, climbing stairs, ladders, and sliding (his favorite), alongside of his wonderful Paraprofessional Educator. He is typical in so many ways, and uniquely different in others. 

While most  people are taken in by his "cuteness factor" and the "smile that is larger than life", they innately are curious about him, about raising a child who has special needs, and how I manage my life as a busy mother, wife, chiropractor, and now full time advocate for him. My answer is very simple: I take it one day at a time. I have learned to let things go that aren't important any longer, and trust the Lord with every step of my path. This experience has strengthened our marriage, taught me more patience as a parent, given all of us a greater understanding of people who have special needs, taught my children tolerance and patience, and we have all grown in our love for children with DS as we have met some of the nicest families and the support of our local DS community that is rich with love and information, as well as activities and a wealth of advocacy to glean from. Together we have formed close bonds with other DS parents, and in the month of October we gather to celebrate our special blessings in our lives with these kids. We are one big happy family. 

A dear friend recently shared with me that "we can all walk the road, not the journey!  The reason is that that journey means we understand your journey too."  The road we were chosen for, incidentally, is (for most) the road-less-traveled. The average age for a mother carrying a DS child is 26 years old, clearly not my age.  Secondly, Down Syndrome is not a genetic situation, it is a chromosomal situation. There is an "extra special" factor and occurs spontaneously approximately every 700 conceptions according to the latest in scientific research. When we heard these numbers shortly after his birth, from the head of DS in the world at Stanford, it's as if "we'd won the lottery!" And you'd only have to know and love a person with DS to know that is absolutely the truth. 

With all the interest in educational inclusion, and the majority of our population starting to become more educated about Down Syndrome because of our national and international communities worldwide, as well as our local chapters, the start of something big is just over the horizon. I for one am incredibly interested in continuing to share, advocate, learn, develop ideas, even continue to incorporate what I do as a chiropractor to help DS children (for example, helping my son to walk straight for the first time as his low muscle tone in his legs left him with a wide gait and weak stance), and come alongside of our other paraprofessionals to get the message out that there is a NEED, and a HUGE desire to incorporate all that we can to help prosper and move ahead with keeping Down Syndrome at the forefront of our communities, our school districts and educators, our county agencies, respite and care providers, our doctors and therapists, and most importantly, our beloved families of loved members with DS. It truly does "take a village" to come alongside of our children, but even today I was so excited to post a video of a gal that has DS, and has made amazing accomplishments in both personal goals as well as college goals. The sky truly is the LIMIT.  She herself was mainstreamed, never attended a special-day class, had some individual therapies along the way, benefited from a supportive family and network of providers...and she is beautiful.  I felt so encouraged because I want our son, Mark Asher, and every other child to have that same opportunity. 

MY goal in writing this article is to say this: WE all have something to offer in this life. With the proper early intervention, mainstream education or even home schooling with peers that model behaviors and speech with one-on-one learning, and an awareness that lets the world at large know that our kids matter, they have a voice, they are capable of so many things just like their typical friends if given the time and opportunities to develop.  We CAN truly change the course of history and incorporate these amazing happy and loving people that deserve the best life has to offer. We all can learn a lot from them. They love without judgement, they trust without fear, they need acceptance just like we do, and they just want to be part of this world. 

I am forever grateful that my son, Mark Asher is in our family, and his timing was perfect. He is an absolutely beautiful human being that makes every day GREAT to be alive. I hope you can see that the love and joy he brings to our lives is unmatchable. And trust me, his giggles are the best sound in the world.  Please try and find a schoolmate, a friend, a neighbor, even a person out and about that has DS, and give them a hug, a high five, or a simple smile today.  It will be a heart-to-heart exchange, and you will be forever changed...PROMISE! 

Cheers to you Laura on this your birthday and to the journey we will take together, as mothers and friends. Our destinations may be different but we will get to ride together on the same airline. I am so excited to see Mark Asher grow into the beautiful, smart, and capable boy that I all ready know he is.

Laura is a Dr of Chiropractic Medicine in Arroyo Grande, CA for the past 20+ years

A.D.I.O. Chiropractic

1054 E Grand Ave, Ste C

Arroyo Grande, California

(805) 489-1326

DSAM: Jennifer's Story

Jennifer and Liam

It is day 16 of Down Syndrome Awareness Month and I am so pleased to be able to share Jennifer's story with you. Every parent has their own unique experience and I wanted the opportunity to share a variety of perspectives here in hopes of shedding some light on what it is like to be a parent of a child with Down Syndrome.

My name is Jennifer, and at age 28 I found out I was expecting.  I was so thrilled and excited and scared. My entire pregnancy was not easy from the very start, I was constantly sick pretty much the entire time.  To make things even more difficult I found out I had gestational diabetes.  At my 33 week ultrasound the doctor told me that Liam's humorous and femur measurements were short, which is know as a soft marker. Before this ultrasound all my ultrasounds came up "normal". The doctor proceeded to tell me that I had a 1 in 150 chance that my baby would be born with Down syndrome. For a very long time I hated my doctor for telling me this. With this information hanging over my head I was a mess, I cried, I was angry, I couldn't understand how this could possibly happen to me. At 37 weeks I went into labor and three days later I gave birth to a healthy beautiful baby boy. Liam weighed in at 7 Lbs and measured 19 inches. He was absolutely precious. The second I saw him though I knew, I knew he had Down syndrome. I could see it, but no one else could or they decided not to see it. Through genetic testing we confirmed that Liam did have Down syndrome. The next few months were dark for me. I mourned the life I wanted for my child. I cried. I just couldn't understand. 

As a new mom, already not knowing what I was doing, add low muscle tone into the picture.... it's a game changer. Two days after we were released from the hospital we were re-admitted. I had no idea that Liam wasn't latching on, he lost 11% of his body weight was extremely dehydrated and extremely jaundiced. I felt terrible! How could I not know that he wasn't nursing, how could I think his constant crying was normal? I thank god every day that something worse didn't happen due to my inexperience. Low muscle tone, tongue tied and nipple shields were my new reality. I worked closely with a lactation consultant for a full three months to get Liam to nurse successfully.  We worked tirelessly together to figure out this dance called nursing, I pumped and bottle fed meantime. Our hard work paid off, literally at the three month mark he just got it. It was such a big moment, I was so happy I didn't give up or give in. Everyone around me was telling me to just give him formula. 21 months later and we are still nursing strong. Like our nursing adventure, every milestone has been just like that. We work and work and work to get Liam to achieve his next milestone, and then one day he just does it.  Liam is amazing and silly and smart, it just takes him a little longer to do things.  It's truly amazing watching his determination and motivation to achieve what he wants.

  Every single day I celebrate the little things, all the things that parents of a "typical" child would over look.  I have forever been changed in such an amazing way.  Now I look to the future with optimism and hope, and I know that it's just an extra chromosome ... It doesn't define what a wonderful little human he is.

Thank you Jennifer for sharing your story!! 

Liam is AMAZING!

DSAM: Sara's Story

Sara and Liam

Down Syndrome Awareness Month gives me a beautiful opportunity to share not only my story but the stories of mother's who are raising children with Down Syndrome. It is important that we share our honest experiences in life in hopes of supporting, inspiring or generating genuine empathy for others.

Blake and Liam

Sara and I met because of our boy's 'designer genes'. It turns out that this "little something extra" comes with a whole host of benefits like instant connections with people with whom you may have otherwise not met. Sara is an Artist and Art Teacher. She is also an advocate for her son Liam and mother to the lovely Lupe. She is strongly connected to the Spanish speaking community and is a founding member of CCDSN (Central Coast Down Syndrome Network) along with myself and other fabulous mother/advocates you will meet over the coming weeks as I feature their stories.

Sara and I

Sara has graciously agreed to be the first to share her story in honor of DSAM 2015!

It’s Fall, time to start thinking about costumes and pumpkins and orange colored things.  Or pink cause it’s also Breast Cancer Awareness month.  For me, it’s also an “Awareness”month I never thought I’d be so connected to.  It’s Down Syndrome Awareness month.  There are SO many things that cross my mind every day and I could write for hours and hours. Some is positive and hopeful and some is difficult.  It’s the same roller coaster as with any child, but I definitely believe it to be more intense.  

I find myself sometimes on the defensive because I hear so many stories from others; hard stories about ignorant comments from strangers or low expectations from professionals. Part of me can’t believe it because for the most part we’ve had positive experiences .  I wonder what I would say in these situations.  Would I think on my feet fast enough to have a good response? 

And then there’s these interesting little things that happen.  The person that looks at Liam for a while- and I start to wonder what’s up- and then all of a sudden they hand him a balloon.  The preschool dad that shows special interest and then I find out he has a niece with DS.  I try to catch myself from thinking that the extra attention or the long looks are critical, but rather, that person may have a connection with Down syndrome I don’t know about.  It’s so easy to be quick to judge others and their actions or words, but we just never know where they’re coming from do we?

I wonder about the kids at school, years older than Liam that take a special interest in him, the grocery clerk that always asks after him.  I wonder if big sister notices and thinks that all little siblings receive this attention, or is it just her brother?  Is she ok with it?

Sometimes I catch myself wondering, do the comments of “Oh, he’s doing so well!” mean that he really is, or were their expectations so low that they are surprised to see him be like a normal kid?  It’s the “high” and “low” functioning thing that my friends with kids on the Autism spectrum deal with a lot.  I’m not even sure what I think of those terms.  I am constantly balancing between accepting Liam just the way he is and constantly working to help move him forward.  I guess both are necessary.  

I have learned, more than anything else, that I need to be my son’s advocate because no one else is as invested as I am in his well being.  I research and ask for things from professionals.  Me.  All the time.  It’s exhausting.  I’m tired sometimes of not being able to take the medical or educational experts advise at face value, it would be so easy. But I have to research everything myself too: I am his mom and I know him best.  I have files full of research and reports from audiologist, nutritionist, chiropractor, Ear Nose Throat Specialist, Endocrinologist, etc etc.  It never stops. And he’s basically a healthy kid!

So, here I am all over the place in my thoughts: up down up down. But Liam is doing well.  He’s in preschool now and he participates, and other kids play with him.  He comes home repeating little parts of songs.  I feel good about taking him to school and trust that he’s in the best place.  I knew it was a good fit.  When he strays from the line, other parents gently guide him back.  I didn’t have to say anything special, they just do it, because we lucked out with a nice group.  And the teachers encourage parent participation.  It’s hard to believe that if I had sent him to a Special Day Class it would not have been encouraged to stay as much as I am doing now (And I hate the meetings that constantly remind you of how delayed your child is).  That being said, if I stay to help, it’s with other kids, or helping with material prep in some other part of the room, because he doesn’t do as well when we are there!  He’s stretching his wings and testing his limits.

What I have learned with my son applies to all children, and myself as well: keep expectations high. Don’t put limits on yourself or others, keep reaching up!  And, hard work pays off.  It’s not easy, but things worth working hard for rarely are.

Thank you so much Sara for sharing your story with Evolution Revolution readers. Can you identify with Sara? leave us a comment! 

DSAM: Let's Talk

Blake enjoying Bubble Play. One of Dona's favorite "transactional" objects! 

Down Syndrome Awareness Month (DSAM) is a wonderful opportunity to talk about all aspects of Down Syndrome from its clinical definition, statistics, myths and truths, therapies, medical intervention, education, parenting and more.

Today I have the sincere pleasure of introducing the best speech practitioner that Blake and I have the pleasure of working with and who I am proud to call part of TEAM BLAKE.

Dona Hare, of  Learn*Connect*Play has prepared her TALKING TOP 10 to share with  you today. This applies to ALL children who have speech issues or delays, regardless of diagnosis (or the lack thereof). We have worked with Dona for a year and most of her expertise is taught to ME, not Blake. As a parent of a child with special needs we must accept that the majority of the workload for education falls on our shoulders. Rightly so, we are the models that our children see the most and spend the most time with. It stand to reason that the practitioner working with your child should be equipping YOU with the tools you need for your child to be successful and this is Dona's approach that I am so thankful for.

TALKING TOP 10: 

1. TRUST YOUR GUT! All kinds of well intentioned professionals will tell you what is wrong with your child and what to do to fix it.  As a parent you know better than anyone what your child feels and needs. Don’t ever forget that you are the expert on your child and when you feel good about a school, professional or an intervention, it is the right choice for your family.

2. INDIVIDUAL DIFFERENCES. Recognize, accept and embrace yours and your child’s unique sensory profile, learning and communication style. We all take in, process and put out information differently. Your child will benefit when you tailor your interactions to fit his individual differences.

3. BEHAVIOR IS COMMUNICATION! Every yell, bite, tear and smile communicates what your child thinks, feels or needs. Looking deeply at what the behavior is communicating rather than just labeling the behavior as bad, can actually strengthen the parent-child connection and support language development.

4. NONVERBAL COMMUNICATION IS THE FOUNDATION FOR LANGUAGE! 97% of communication is body language, facial expressions, gestures and tone of voice. Support your child’s communication by emphasizing gestures, facial expressions and vocal tone.  

5. OWL!

Eniko Mihalik by Terry Richardson for Harper's Bazaar US November 2011

OWL = Observe what your child is saying with and without words. 

Wait to respond. Take 3 breaths before you tell him what to say or help him. Then respond and wait again to see what happens. SLOW DOWN!

Listen with your eyes, ears and heart to what he is saying and how you can keep the interaction going. 

6. FOLLOW HIS/HER LEAD! You bought cool finger paints and want to try that but your child would rather play in the dirt and look for ants. Do what he is interested in and likes. 

7. KEEP THE INTERACTION GOING! When in doubt, imitate! Imitating your child’s words or actions are a great way to keep your child connected and engaged and continue the interaction.

8. PLAY WITH ABANDON!  Talk, sing and play with your child everywhere. Don’t be afraid to act silly, make funny faces or make up crazy songs. You know you are playing right by your child’s smile and laugh.

9. SEEK OUT PLAYMATES! (For you and your child.) Go to the library, playground, parent groups, preschool and gymnastics and look for those nice kids that connect with your child. Then check out the parent. If you like the parent, invite them over for a play date. Inclusion happens everywhere-not just at school!

10. THIS IS A MARATHON, NOT A SPRINT! Take care of yourself, the relationship with your partner and your friends. 

In the end, it’s all about Learn. Connect. Play.   

Thanks Dona! 

Blake & Dona at the beach, Blake's older sister also participates in his Speech Sessions

About Dona:  Dona has worked for more than 30 years to help develop language, literacy, and social skills for children and their families. She earned her Masters Degree from the University of Southern California and trained at the John Tracy Clinic, an internationally recognized parent education training center. She has worked for the California Department of Education (Diagnostic Center of Central California) assessing students, providing training throughout the state, and writing and piloting curriculum programs.

Dona holds certifications in DIR/Floortime, PRT-Pivotal Response Therapy, Hanen Early Language Program, and P.L.A.Y. Project (Play and Language for Autistic Youngsters). She has worked with several school districts throughout California as a Speech and Language Specialist providing early intervention and school age services, and also directed a national camp for children on the autism spectrum.

The US Department of Education, the California State Superintendent of Education, and the UC DAVIS, MIND INSTITUTE have recognized Dona for her skills and achievements in developing programs, curriculum, and training. Most recently, she worked as a Program Specialist for the San Luis Obispo County Office of Education training teachers and parents, developing programs, and identifying learning strategies and supports for the most challenging students.

Go to www.learnconnectplay.comhttp://learnconnectplay.com/ for more information.