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: 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!