DSAM: Day 21

Blake's 21st Chromosome image from his Karyotype

We have reached the 21st day of Down Syndrome Awareness Month. What a lucky number ... in Las Vegas and in my life. For those that don't know (you would be surprised how many people there are) Down Syndrome is a result of 3 copies of the 21st chromosome, also clinically referred to as Trisomy 21. Words alone could never convey the impact this tiny chromosome has had on my life. 

Pre bed time snuggles and giggles

I choose to focus on the positive and enjoy all that has been gifted to me instead of dwelling on the more challenging aspects and trust me there are not in short supply. It is a daily dance to which I barely know the steps and as soon as I learn them someone changes the music.

Blake admiring his half dragonfly pose

A woman I admire and adore read this aloud today while we were practicing Yin Yoga together. She the teacher and I the student. I have really embraced the roll of the student in my life. As a parents you are always a student. As a parent of a child who has extra needs it seems the learning never ceases, literally no end in sight.  The words that were spoken today by my favorite Yogi Teacher really struck a cord with me. I wanted to share them here:

If you could observe your Self from a distance, way over there,

would you critique your size and shape, your weight and your hair?

Would you be kind to your Self?

If you could observe your Self from a distance, way over there,

would you see your thoughts and your inner smile, your fears and addictions and the love that surrounds you 

and carries you all the while?

Would you be kind to your Self?

If you could observe your Self from a distance, way over there,

Would you spend more than a passing glance?

Would you wonder or be curious about the rhythm of your dance?

You are not a mistake or a mere happenstance….

And neither are they, way over there.

It's true!

Happy day everyone,

Love for us all,

By Marylou Falstreau

Women and he Hourglass

www.mfalstreau.com

I love these words. The lack of separation between yourself and others and this notion of equality. What people also fail to realize at times is that we are ALL in this, life, together. Regardless of ability, perceived 'disability', race, income, education, or accomplishments. It made me think about the Down Syndrome community.  Many people consider my son's chromosomal "difference" a mistake, I sometimes happen upon comments on social media stories and see these views first hand and I can almost imagine what people are thinking when they look at us a little too long when we are out in the community. Yes us, from a distance, way over there. From here I see no mistake, I see intention. I see gifts. I adore the blanket of kindness these words provide also, for yourself and for everyone, way over there,

Striped Harem Joggers From Dandy Cubs

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! 

Soul Sunday: BRAVE

Blake and I

Down Syndrome Awareness Month is now over but being Canadian I'm taking the liberty of honoring their DS awareness week (Nov 1-7). Down Syndrome Awareness month/week is an important time for mothers, advocates and people living with Down Syndrome to have our voices and stories heard in hopes of educating the public. I was planning to write about my traumatic birth experience with my son Blake followed by the traumatic manner in which his diagnosis was given and talk about the triumph one can feel out of such perceived trauma or tragedy until the other day when I was face to face with a stranger.  

Blake enjoying the guitar - wearing Fab Kids top/pants from London Calling Collection

I was doing my regular domestic diva duties and grocery shopping with both of my children in tow. I may or may not have been pacifying them with a chocolate chip cookie so graciously given to frantic mothers shopping by the local bakery department (they must be mothers too). I was casually glancing over at the produce when a stranger approached me and put a hand on each shoulder, staring intensely into my eyes saying “You are SO brave”. I paused in shock and gave my blanket polite response to any ‘compliment’ and was just able utter “Thank you”. Before I could ask her what she was referring to she locked eyes with my little boy sitting in the grocery cart so patiently waiting for another bite of his chocolate chip cookie, she loudly proclaimed again, “BRAVE” and abruptly walked away. Stunned, my mind flashed to several things before I could actually process what she was saying; “Brave? I thought, for what? buying the Albertson’s guacamole? For wearing a vintage 70’s poncho with Native Canadian Moccasins to the grocery store? for feeding my kids cookies before dinner? Then it hit me. She was telling me I was brave because I am caring for my son, who she must have identified had a disability or specifically Down Syndrome.

I spent the balance of my shopping excursion contemplating this stranger’s declaration of my “braveness”. At first I was irritated and it brought me back to the feelings of annoyance when Blake was first born and many people came to me with “I’m Sorry” statements instead of the natural reply to a new child’s birth, Congratulations! I was irritated at her ignorance for not knowing how amazing my son is despite his perceived disability. But after a long internal dialogue and reflection in the isles of this grocery store, I realized she was right. I am brave. I am a mother. I have carried and nurtured cells to human life, I have given birth twice, I have spent countless sleepless nights tending to my children, I face societies ignorance every day when I step outside my door as people stare and whisper about my son. I struggle with the unknown future each day for both of my children. I stand back while other children the same age out play, out climb, out talk and out run my son. I wipe asses, noses, sticky hands and bloody knees. I bake, craft, clean, launder, entertain, cook, guide, advise. Oh, and in my spare time I am also a wife, business owner and my own person with needs/desires/passions. I AM brave. I am so thankful in hindsight for this woman who had the guts to face me and project my truth back to me.

I AM BRAVE.

I am brave because I focus my efforts on my son’s abilities not his disabilities. My son is smart, loving, strong and spirited. He understands what you say to him (receptive language skills on par with his age of 2.5) he just can’t respond verbally ... yet. I hear no “mamma” or “I love you” verbalized but it is okay, I can feel it. He signs for “more”, loves to dance, says and waves bye-bye, gives the best hugs, loves books, music and is willing to try anything with no fear. Blake and I entertain professional women all week long together, occupational and speech therapists.I work tirelessly to help my son achieve all the physical and verbal skills that come naturally to most, but for him take’s more work and effort. For example, Blake is naturally attracted to toys that require jumping but as of today he does not have that skill. In the face of challenges like these my attitude is “oh, well, maybe tomorrow”. Maybe tomorrow he will say mom? or mamma? We just keep working, moving forward, and being brave. This is not to say that everything in my chromosomal plus world is fabulous and positive. Blake also throw tantrums, spits, head bangs, defies me, pulls his sisters hair and is constantly destroying or undoing everything in his path. Sounds like a typical 2.5yr old? I don't know but it is typical for Blake.

The Motherload: My Step & Bio kids - Blake, Danica, Kaleigh & Dylan

You have to be BRAVE to be a mother of a child with Down Syndrome and you also have to be just as BRAVE to be a mother to ANY child. Every mother reading this is brave as we all face our own unique issues with our kids of all ages. I am a mother of two fabulous children and a step mother to two others, each with their own unique talents and challenges. This is what I want to world to know about Down Syndrome; these individuals are more like your children then they are different. I still face the same struggles and challenges as you do as a mother, just mine last a little longer or take more effort to accomplish or overcome but believe me we WILL accomplish them.Together. Bravely. 

Blake & His Sister Kaleigh

Lisa's Library: The Year My Son and I Were Born

I came across the book, The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery by Kathryn Lynard Soper by circumstance, when my son Blake was born. I had a traumatic birth experience, traumatic post birth experience, and a possibility of a diagnosis that my son had Down Syndrome. I was lost, terrified, sad and quite frankly devastated.

I was in the dark, along with my husband trying to navigate a whole new world that I have never seen and have only had limited contact with through the course of my life. I was berated with the political correct and generic statements people were saying when they don't know what to say .. "They are the most loving people", "Children with DS are god's angels" - Blah, Blah, Blah. I appreciated the sentiment but was irritated at every turn when my congratulations turned into scared faces and "I'm so sorry".

 I felt patronized by the social worker that was sent to me and stunned at the prospect of a life with a boy with a "disability" the extent to which I will not know until he grows. I needed someone, anyone who was in my situation to talk to or to listen to. I am an information seeker by nature and craved all information that I could find. I was confined, however to a hospital room with a lame Blackberry device. I came across Kathryn's book and after I read a review with the words "Brutally Honest" I downloaded a copy to my Kindle immediately. I spent every spare moment reading it and basked in the experiences and feelings I could relate too. I slowly began to awake from my fear coma. That whole period of time seems like a blur but this book still stands out in my mind. I have also read the two other books she published as well. A collection of essays titled: Gifts and Gifts II. Complied from parents who have children with Down Syndrome.

I had the pleasure of chatting with Kathryn about her book and life recently.

LG: What made you decide to share your experiences with the world?

KLS: Sharing your inner landscape is a risky endeavor, but the rewards can be tremendous, especially when a reader says, “I thought I was the only one who felt this way. Thank you for showing me that I’m not alone.”

I think the hardest part of being human isn’t the inevitable pain we go through, but the suffering we create by rejecting ourselves when we’re in pain. When we need gentleness and kindness and community the most is when we’re most prone to be harsh with ourselves and isolate ourselves from others. So I believe there’s a lot of grace to be found in writing about the hard things. For me it’s a way to process the raw material of my experience and find meaning in it, and come to terms with the shadowy parts of myself that hard times tend to reveal. Just as importantly, sharing with an audience is a way to connect with fellow travelers, to feel the power that comes in vulnerability, and to discover, over and over, that one of the greatest gifts we have is our capacity for compassion.

LG: How is your doing son now? tell us about him?

KLS: Thomas just turned eight and he is one of the funniest, smartest, coolest kids I’ve ever met. In addition to T21 he has a diagnosis of PDD-NOS (an autism spectrum disorder) and an auditory processing disorder. He has yet to say a word, but he communicates very clearly nonetheless. I’m beginning to think that symbolic language is overrated. He’s in second grade at a beautiful school in our district for kids with multiple and severe disabilities, and I only wish all of my other kids could have the attentive, personalized education that he participates in every school day. He’s pretty much everyone’s favorite around here, although HIS favorite person is his definitely his dad.

LG:  What is the most important thing you have learned by being a mother of a child with Down Syndrome?

KLS: I’ve learned, and I’m still learning, that love has nothing to do with how many positive adjectives I can reel off about Thomas or any of my kids. Thomas is truly funny and smart and cool, but even if he wasn’t, he would be utterly loveable. People don’t need to do anything to be loveable. They don’t need to accomplish anything other than breathing. Heck, even breathing is optional. And learning that about my kids has helped me begin to accept the same truth about myself.

LG:  What advice would you give new parents?

KLS: Every chance I get, I encourage new parents to let their experience be what it is. There are new parents who weep because they don’t know if they will ever be able to love this child. There are new parents who weep because they didn’t realize it was possible to feel the kind of love they feel. There are parents who weep because they carry both of those realities within them at the same time. There are new parents who don’t weep at all. And there is every possible combination in between.

You don’t have to feel bad about being sad. You don’t have to feel bad about being happy. Your experience is as unique and legitimate as that little baby that just turned your life inside out. Or made it all come together.

My sincere gratitude to Kathryn for sharing her story and helping to give me the courage to face mine.

Kathryn currently lives in Utah with her beautiful family!

Down Syndrome VLOG

My son, Blake at the Pumpkin Patch

Today I am in full VLOG (Video Blog) mode. As stated yesterday my blog for the remainder of October (Down Syndrome Awareness Month) my blog's content would have heavy emphasis on DS. I will break for important fashion and fitness content but primarily I want to dedicate the next few weeks to DS awareness and education.

This is a VLOG today. A collection of AMAZING and INSPIRATIONAL video's that I have seen and saved since my son was born. Sit back, enjoy, grab the kleenex and prepare to be inspired.

1) A Fathers perspective about raising a child with Down Syndrome. It is honest, insightful and fabulous!

2) A father exposes his soul and writes an honest letter to his two year old Daughter with Down Syndrome. On so many levels I can connect and empathize with him. My son did not get diagnosed until he was born but the fears were still there for me too. Originally posted by ESPN in 2012. This dad is bold and courageous for sharing the brutal, honest truth of how he felt and feels. 

3) Tim's Place. What a motivational man. He is the proud owner of his own restaurant called "Tim's Place" in Albuquerque. Up at 5:30am with HUGS the best part of his day. I think we can all learn a thing or two from him! I hope my son Blake is able to find his passion in life like this.

4) Archie and Me - I love these two. Children never really grasp the "differences" until adults and society point it out to them. I love to see these two as it reminds me of my daughter and son. I hope they grow up to be best friends and take care of each other.

5) Meet John Anton. What an inspirational man. Most individuals with NO disability fail to accomplish what John has. It is my hope that my son Blake will follow his passion and dreams. I love that he pushed past the menial jobs that did not stimulate him and onto his dream of advocacy and helping others.

6) Super Hero: Too lazy to go to the gym? not this man. He is a soft hearted, hard core power lifter and NOT in the "Special Olympics" - right on par with this peers. Amazing!

INSPIRED or HOPEFUL YET? HAPPY and MOTIVATED?

Me Too ...

Blake & Mommy (me)

Down Syndrome Awareness Month

October is a month full of raising awareness for many important causes, Breast Cancer, Depression, Autism, and dozens more. For me the MOST important issue to raise awareness and promote education for is Down Syndrome (DS). This of course because my son Blake has and extra 21st chromosome.

There are many things I want to discuss between now and the end of the month so bear with me. The regularly scheduled fashion and style programming with appear intermittently between my posts about Down Syndrome and my experience thus far of being a mother of a son with perceived 'special needs'. I say perceived because everything is based on individual perception as live is a very subjective experience.

You can read the first story I ever wrote about Blake HERE

(and the follow up a year later HERE) 

Since Blake was born our family has had a warm welcome into the Down Syndrome community via organizations like the National Down Syndrome Society (NDSS) as well as from parents all around the world thanks to technology. Turns out this 'little something extra' has meant a LOT more to our family than I could have ever imagined.

During the coming days I will talk about Blake's birth, receiving the diagnosis, books and websites that have helped me navigate my new world, the up's and down sides of DS, social misconceptions/stigma, other peoples inspirational stories and more.

In this world where information is so easily accessible it fascinates me that people are still so UNeducated when it comes to DS.  Let's start my series of posts out with a few FACTS.

What is Down Syndrome? Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Blake has Trisomy 21 (nondisjunction).

*There are three types of Down syndrome: Trisomy 21 (nondisjunction) accounts for 95% of cases, Translocation accounts for about 4% and Mosaicism accounts for about 1% 

This is an image of his actual chromosomal karyotype  from his test when he was born. Note the extra copy of the 21st.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.Some estimates put the worldwide population of people with Down syndrome at more than 6 million.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today. 

With early intervention, education, proper health care, nutrition, persistence, opportunity and most of all LOVE people with DS can reach their full potential and live happy fulfilling lives. As parents of ANY children this is all we want for our kids, to be happy. Being a good parent is a choice, a lot of sacrifice and hard work but the results far outweigh the efforts.

I am excited to share my journey with Blake with you dear reader and I'm first to admit that I am still learning and relatively new to this community (Blake is 2.5) but hope to be a voice of advocacy for Blake and all other children/families who have been gifted into the Down Syndrome community.

GET AN EDUCATION - WATCH THIS

I read a statistic somewhere that 38% of Americans know someone with Down Syndrome.  

Do you?

Please share your experiences and stories in the comments!