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! 

The Guest House

Angela's Oaxacan Bowl of Floral offerings, surrounded by items she collected on a hike.

As seen at a private Yin Practice at my home. 

I always leave my Yin Yoga practice inspired on some level and today was no exception. The Yogi (the inspirational Angela) read a poem from Rumi that I have been contemplating and smiling about all day! 

For those of you who are not familiar Rumi  (1207 – 17 December 1273), was a 13th-century Persian poet, jurist, Islamic scholar, theologian, and Sufi mystic. He has a big story and a rich history behind his work and wisdom His poems have been widely translated into many of the world's languages and transposed into various formats. Rumi has been described as the "most popular poet"and the "best selling poet" in the United States.   (Read More Here)

The Guest House

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice.

meet them at the door laughing and invite them in.

Be grateful for whatever comes.

because each has been sent

as a guide from beyond.

— Jellaludin Rumi,

Contemplate the above perspective when your next guest comes to call. Can you imagine adapting this perspective and how you would automatically shift to a place of acceptance and gratitude for all that knocks at your door? This is exactly how this poem makes me feel. I'm creating space for everything and remembering in challenging times when we don't get what we think we want, perhaps things are only being cleared out to make room for some new delight! A guest house is a wonderful analogy as we are all just passing through, accepting the non permanence and learning lessons, bound for points beyond.

There IS true POWER in PERCEPTION.

Can you feel the shift? Time to make some Rumi ...

The beautiful Yogi goddess reclining into a child's pose, one of my favorites.
Connect with Angela via her WEBSITE

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.

Color Combo: B&G

Vintage Gold Tone Necklace

SJP Collection "Carrie" in Black

When you get creative with personal style the color combinations are seemingly endless. There are several elements that one can use to make their personal fashion expression unique to their experience and color is one of them.

Today I am feeling the Black and Gold vibe. Understated from a color stand point but a timeless and chic color combo.

I fist fell in love with this combo in the early 1990's via CHANEL. They are the ultimate black and gold fashion house to me. The accessories are, and always have been on another level.

CHANEL 1991

VOGUE Paris Shot by Arthur Elgort 1991 - Christy Turlington in DIOR

EVOLUTION VINTAGE Goes B&G

SHOP

SHOP

 SHOP

 SHOP

SHOP

SHOP

SHOP

SHOP

DSAM 2015: Celebrate & Educate

Today kicks off DSAM or Down Syndrome Awareness Month. I'm sure many of you are "aware" (especially if you follow me on social media) of the genetic condition referred to as Down Syndrome or Trisomy 21. My son Blake was given a set of 'designer genes' and I was given a new perspective on life, truly.

This month is all about education and sharing stories. I intend on sharing the stories of my fellow mothers, educators, professionals and even a dad or two.

People with Down Syndrome are making an impact in our communities, working, learning, and contributing. The further down this road I get I wonder who is the real"slow learner" or the ones with the "disability"? More and more I don't think it is any member of the Down Syndrome community but society as a whole. For all of the advancements we have made in medicine and technology we have been as equally left behind in humanity, compassion and appreciation.

Our differences are the things that should be embraced and celebrated, not how generic or the same we can be. A homogenized culture devoid of personality and subscribing to the herd mentality. Differences are a great source of learning and an opportunity for growth for all of us. I want to explore all this and more this month as I celebrate people with Down Syndrome and my beautiful boy Blake!

For The Love ...

Greetings dear reader, I have returned from my summer hiatus from blogging just in time for Down Syndrome Awareness Month that starts tomorrow: October 1. I have been on a summer journey of turning inward, listening, experiencing and growing. We have just survived our transitions into the new season of fall and this time of the year is a beautiful time to embrace change, take life inventory and clean house; both physical and spiritual, internal and external.

A gorgeous friend of mine shared this and it resonated with me so naturally I felt compelled to digitally pay it forward. Thank You Yogi Angela.

For the love of a tree,

she went out on a limb.

For the love of the sea, 

she rocked the boat.

For the love of the earth,

she dug deeper.

For the love of community,

she mended fences.

For the love of the stars,

she let her light shine.

For the love of spirit,

she nurtured her soul.

For the love of a good time,

she sowed seeds of happiness.

For the love of the Goddess,

she drew down the moon.

For the love of nature,

she made compost.

For the love of a good meal,

she gave thanks.

For the love of family,

she reconciled differences.

For the love of creativity,

she entertained new possibilities.

For the love of her enemies,

she suspended judgment.

For the love of herself,

she acknowledged her worth.

And the world was richer for her

~Charlotte Tall Mountain

www.GrowTreeSisters.com

(image - Catrin Welz-Stein)

It is time to acknowledge all that you are, your immeasurable worth and contributions to the world. I will spend the next month doing the same for people with Down Syndrome. 

Every life has value.

Bruce Gender: Caitlyn's Real Message

Image: (Vanityfair.com by Annie Lebowitz)

The Internet has been buzzing since Vanity Fair released the images of their July Cover Girl. We bid farewell officially to Olympian Bruce Jenner and say hello to Caitlyn Jenner, gold medal winner for bravery and ironically balls.

Bruce sat down with Diane Sawyer back in April and discussed his transformation as well as all of the personal conflict and struggle he has had internally his entire life (See the story here).

The details of his journey is not necessary to re write here but Caitlyn comes to us with a message that transcends the lines of the LGBT and/or Transgender community.

Image: (Vanityfair.com by Annie Lebowitz)

Of course she is an amazing spokeswoman for the Transgender community and I don't want to take anything away from the awareness that is being raised but to me Caitlyn's message is that of authenticity and has an inclusive application. At age 65 she is now beginning to live her authentic life. Imagine waiting so long? I'm sure most of you can as many people I know don't live authentically, not 100% anyway. 

Society and the judgement of others has such a strangle hold on people. Working in the fashion industry I see it in my clients all the time.  A great example is the moment when  someone is authentically or naturally drawn to something, a piece of clothing or an accessory. It kind of goes like this,

"Oh, I love this" ... BUT

But society will judge me.

But someone will say something hurtful or rude to me.

But no one will understand.

But I have no where to wear it.

Its a kin to a what if but its what I call a BUT IF, AKA an excuse.

Let's get real: " Society" or "they" will always be judgemental. Do you really put the opinions of strangers above your own? Recognize it is your OWN fear and take your power back.

Someone may say something hurtful or rude to you or about you, but if you don't believe it, who cares? What others think of you is none of your business.

Someones lack of understanding is their issue, not yours. You cannot be responsible for what someone does or doesn't 'get'. You can attempt to educate but let your energy to convert go no further, you need it for being fabulous.

Lastly, from a person who wears sequins to the grocery store, trust me when I confirm YOU can make "Hollywood", "New York" or wherever else you deem appropriate,wherever you are in the world in that moment. In other words there is a place to wear everything you have in your closet, right here, right now if you so choose. 

Image: (Vanityfair.com by Annie Lebowitz)

What Caitlyn has done is started an important dialogue. The press and social media is bogged down with all the details of unimportance like; fake tits, photo shop, shaved adam's apple, reality show, fame whore, Kardashian who gives a fuck?

Her Message (from my perspective):

1) The dialogue that has been started about the legitimacy of gender dysphoria. It is recognized in the DSM-5, Diagnostic and Statistical Manual of Mental Disorders (by the American Psychiatric Association) as a very REAL condition. "DSM-5 aims to avoid stigma and ensure clinical care for individuals who see and feel themselves to be adifferent gender than their assigned gender. It replaces the diagnostic name “gender identity disorder”with “gender dysphoria,” as well as makes other important clarifications in the criteria. It is importantto note that gender nonconformity is not in itself a mental disorder. The critical element of gender dysphoriais the presence of clinically significant distress associated with the condition." I personally feel people are born the way they are born and it is not necessarily a "mental disorder", however if the DSM acknowledgement will get the Trans community the clinical support they need then I view this as positive and a resource to use as education.

2) The discussion about women. There is much talk online about what it means to be a woman, the issues we face as a gender and our unique set of circumstances. It has also shed some light on how far we have come but also how far we still have to with respect to equal pay for equal work, the scrutiny we are under for our appearance and unique pressures we face as women.

3) Authenticity: People are complaining (mostly religious hypocrites and the ignorant) about being a scam and a lot of people feel that they have the exceptional ability to speak for "god" and knows what "god wants". WOW! Maybe they can give me lottery numbers too? Being who you are ALWAYS comes with some kind of risk or cost. Here the cost has been, thus far, "hurting" the people that she loves and who love her. But let's consider what is gained? A life of non-deception, freedom of expression, freedom of choice that aligns with your authentic self or what I call your source. An authentic sense of happiness and radiating positive energy to those closest to her. When you are authentically happy you can feel it, as can others. A chance to really look at oneself, at the source and become what YOU want. She is also another example of money not bringing happiness. She is extremely wealthy and famous yet she spent decades struggling and living a lie. No money can buy the peace that living an authentic life can provide.

4) Courage and/or Bravery: This discussion about being brave and having courage to stand up in the face of the uncompassionate, ignorant masses. She is receiving the Arthur Ashe Courage award at the ESPYS in July.  Being honest is not always easy and one risks ridicule, hurt, and backlash. for Caitlyn this is on a much grander scale because she is in the public eye. Regardless of who you are there is always some level of risk/cost involved with honesty which could explain why so many people are not.

5) Tolerance and Respect: You do not have to agree with someones choices or understand them to be respectful. At the very least you should respect someones right to choose. In this instance of legitimate gender dysphoria I don't personally believe that Caitlyn had a choice per se. I feel she was born Caitlyn but named Bruce. She did choose, after a long battle to conform to the herd (society) to take the courage to finally become Caitlyn and live authentically.

6) Education: Educating people is the key to Tolerance and Respect. I have a son with Down Syndrome and I can't even believe how ignorant and unaccepting people still are even though this is the most common "chromosomal disorder". I can't even image how it is for people in the Trans Gender community.  Education "normalizes" issues and people who are perceived to not fit into the herd or society's view on how generic we should all be to coexist. The more Caitlyn is out there, the more people are forced to read about, look at and examine my points above.

7) Inspiration.: Caitlyn's story should serve to inspire us ALL. Imagine gender lines and assignments melting away and we all look at ourselves and our source as humans. The authenticity and bravery discussed above has been enough to inspire me. Think of the people who are still living lies. Perhaps this story has helped them come clean and live authentically. There is truly nothing more powerful, even if the story helps one person. She is leading by example and through bold and powerful action, not just words. I feel we are all here, in this shared  life experience with the ability to assist and help others. Service to others comes in many forms, today it comes in the form of a woman. 

Thank you Caitlyn and welcome to your new life.