DSAM: Inclusive Education

The current education climate for people with "disabilities" from my perspective is a disgrace, putting it nicely. The battle between school administrators, "experts" and parents of children who have perceived "disabilities"  is a horrible one that need not exist. Parent's quickly become the expert of the acronym; IEP, IDEA, FAPE, LRE, OT, PT, SLP ... BS!!!! It seems never ending. Under the guise of well intention our children are being "contained" and segregated from their "typical" peers and deprived of the educational experiences and certain rights of passage because they are considered academically sub par. Most of what I have seen is three fold; lack of education from the "educators", budget's and massive EGO's. After standing up for my son as the most qualified expert I was able to enroll him in the same pre-school my daughter attended. He is able to learn along side his typical peers and receive the education opportunity that he deserves.

The staff has been loving and receptive from day one and they think INCLUSIVE. Inclusion to me goes far beyond just having a child with a disability in a classroom but including him/her in every aspect of that room and that is exactly what the administrators and the staff have done. 

I wanted to share this experience from their perspective in honor of this 29th day of Down Syndrome Awareness Month.

The Morro Bay United Methodist Children’s Center believes that each child is unique and beloved of God. We are dedicated to the physical, social, intellectual, and spiritual development of young children. We celebrate the unique development of each child. The MBUMCC instills values of trust, concern, guidance, love, acceptance and community outreach through our faith, knowledge of child development, and passion for the education of young children. Inclusion has helped our center celebrate children’s unique similarities as well as their different abilities. 

Inclusion is not a single event but a process of education, acceptance, and tolerance. Inclusion opens the doors and provides the opportunity to learn together and create a platform in which we accept one another’s differences and learn that each child has something to offer to his or her community. Each child has an untold story, no ability or limitation should prevent a child from celebrating childhood. 

When approached with the opportunity to enroll Blake into our Preschool Program, there was no hesitation. Our staff and parent meeting included mutual collaboration of each of our abilities and limitations in providing quality care for Blake. We discussed behaviors, modifications, short and long term goals. As a team, with Blake’s amazing mother at the helm, we jumped into the unknown together. 

As an educator, you never really know how a child will adapt, connect, learn, or develop. We blindly accepted Blake, and let him tell us his untold story. Page by page, day by day, Blake’s story is constantly reinventing itself. The MBUMCC offers a safe, trusting, fun, and nurturing environment. Through inclusion we have provided each child the opportunity to engage and learn acceptance, tolerance, offer role modeling, expand their communication skills, and share in a collaboration of love. It has been through tremendous confidence and faith that Blake’s family has entrusted our center with Blake’s education and opportunity to learn. 

Blake is guided by his amazing Para-Educator who offers compassion, encouragement, consistency, direction, and guidance. Blake has given as much as he has received. We are grateful for the opportunity to share in Blake’s learning, growth, and development. We are excited to see his next chapter.

On behalf of the Preschool staff at The Morro Bay United Methodist Children’s Center

Christy Hilliard

Executive Director/Founder Morro Bay UMCC 

www.mbumcc.org

Open Hearts, Open Minds, Open Doors 

We ALL need to think inclusive from day ONE. Studies suggest that children with Down Syndrome benefit from an inclusive classroom, (Buckley), and my personal experience thus far can fully support this clear data. Children with Down Syndrome are more alike their peers than they are different, it may just take them a little longer to show it. I can't wait to see all of the success Blake will have on his educational journey!

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.

A Decade Of Lovely

It's been 10 YEARS since style maven Sarah Jessica Parker launched her fragrance, Lovely. To commemorate the last decade of her fragrance enchanting the olfactory senses of women and men alike globally her loveliness, Sarah Jessica Parker has re-released the fragrance in a new Anniversary bottle! 

It is available at over 7,000 CVS stores across the USA, MyChemist in Australia and Boots.com in the UK

She has also designed a limited edition grey sweatshirt , a lovely new take on one of her favorite items which you can WIN by sharing your most lovely moments of the last 10 years. (see official contest rules HERE).

"Ten years ago, born of a lifelong devotion to fragrance, I created Lovely.

Inspired by my love of fragrance layering, Lovely includes notes of creamy orchid, white amber, musk and a touch of ripe apple.

A timeless scent, both then and now. I hope you all have enjoyed it as much as I have". …X, Sj

Follow On Instagram

Use hashtag LovelyTurns10 AND Sweeps on  Instagram  and/or Twitter to be entered. You must use both hashtags and the tag for SjpLovely or SJP for your entry to count!! Sarah Jessica herself will read EVERY entry and choose the winners. We have all had MANY lovely experiences over the past decade. I encourage you to share for your chance to win before the contest closes November 22, 2015.

I hope to get my hands on this fantastic sweater!

Stay Lovely everyone; shower the people you love with love and don't forget to share some of that love with yourself.

The original bottle and an SJP stationary set. Both items graciously gifted to me. I love to write love letters and thank yous! 

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: 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

Grocery Glam

SJP Tartt Shoe, Grey Denim & A KeVita Water

If I had a dime for every time I was asked "Where are you going"? because of the way I dress. Certain ladies in my circle experience the same thing in our sleepy coastal town. The truth is we are going to the grocery store, the bank, school drop/pick up, the dentist, the post office .... Living our lives really. I am of the personal belief that there need not be a "special occasion" to dress the way you want. Isn't LIFE a special occasion when you are here and have the freedom to live it? 

The geographical location in which this question is continually posed is coastal. The vast majority who inhabit this magical place wear what is dubbed "Central Coast Casual" which translates literally to trucker caps, puffy vests, flip flops and yoga pants. Sometimes all at once with a plaid flannel shirt or graphic tee, some worn a piece at a time. Swap out the flip flop for a to the knee boot in a neutral and you are good to go for evening here.. don't even get me started. If they are dressing authentically to express who they really are then BRAVA! I can fully support dressing from an authentic place. If they are dressing this way due to provincial pressures, trends or what I call "the herd mentality" they get the thumbs down from me. I also wear Yoga pants ... to YOGA! If you see me in them I can guarantee I am on route or coming from a legitimate yoga class.

 Recently, I've seen an influx of stretch jersey printed garments that are the trend dujour is from a company called LuLaRoe, a networked based marketing clothing company that has taken the Central Coast by storm. By storm I mean a sea of identical stretch jersey silhouettes in various colored prints. At drop off time I sometimes amuse myself by counting how many mom's are wearing a different variation of the SAME legging, tunic or dress. Again, if it is authentic and each person is expressing who they are then I can applaud them. I'm taking a wild guess that this too is provincial pressure. I have a client who has recently turned her back to her closet full of this stretchy, printed confections in exchange for dressing authentically and going with her gut instincts. I'll feature her story in a future post.

Anyway, when I go grocery shopping in a Vintage printed dress (from my eBoutique Evolution Vintage) and SJP Collection TARTT Shoe for example, I get the question .. Where are you going?

Instead of collecting my dime I felt compelled to share an image of myself grocery shopping with the caption ' I grocery shop like this bitch'  on Instagram I also wear sequins, or whatever strikes me. I am an emotional dresser and style from a place of authenticity, not trends.

I had the pleasure of speaking to The New York Post recently and chatted about the SJP TARTT being my favorite day shoe. She sparkled and shines in the natural light so brilliantly. The stand out quite from the piece was talking about how I grocery shop in them! 

My lessons for the day ladies: 

1) Don't reserve sparkle for evening.

2) Wear what you want, Where you want, When you want.

The End.

My friend Sydney, Vintage Style Maven wearing

A Vintage wide leg jumpsuit from Evolution Vintage

while shopping at Costco, why?

because she can.