Just Another Day in the Life of "Shells": Being AWARE of Who you Are... A Down syndrome Story

As many of you are waking up thinking of candy corn, jack-o-lanterns and little kids ringing your doorbell, I woke up knowing it was the last day of Down syndrome Awareness month. I woke up happy that I would share this VERY special blog with you today. I am sharing yet another purposeful moment in my life... a moment that caught me by surprise and impacted my life leaving a smile on my face and a special place in my heart.

As many of you know, my daughter Abrielle... "My Amazing Little Brie" as I call her is what I consider to be the biggest blessing of my life. She came at just the right time even though I felt like crawling in a hole when I found out I was pregnant again feeling the timing was way off... (proves I knew NOTHING.) As I have shared before, when I was five months pregnant and was told that she was going to have Down syndrome , I immediately knew that God had a much bigger purpose for my life than what I had planned for myself. I knew that my life was going to take shape, to change dramatically and as it turns out, change was JUST what I needed. I had made it through and became stronger with every punch; there was a reason for that. You have to have tough skin to be an advocate and although I have a very soft heart, I am made of steel and have irreversible passion for things that I believe in.

Earlier this month, I had the opportunity to go to the beautiful town of Provincetown, located at the very tip of Cape Cod, Massachusetts. The beauty and artistic nature of this place is simply magical to me. I was there once again just like I was in March to join fellow makeup artists; this time for the The Artist Summit put on by my friend Michael DeVellis. It was an amazing week of priceless inspiration, networking and education and I met so many wonderful people. However, on the second day of the Summit, during one of our breaks, a lady approached me with a great big smile and introduced herself. She shared that she followed my blog and thought that I was "just amazing and could NOT WAIT to meet me." It still amazes me when complete strangers share how reading my blog changes them or touches their lives... even though that was my whole purpose to begin with. We continued to talk and within moments she told me that her youngest sister had Down syndrome and shared her INCREDIBLE story with me. She shared that she had seen several of my blog posts talking about my daughter "Brie" and how much they meant to her; she told me that I reminded her of her mother. We talked through the entire break and at moments I had to choke back the tears, my heart was so filled with warmth hearing her story, so I insisted that we sit at lunch together one day so we could talk more.

On the last day of the Summit, we ate lunch together and she continued to bring tears to my eyes as she shared more of the story of her sister Sandy and of how her mother had such a passion for Down syndrome advocacy and Awareness. I really wanted to share Sharon and Sandy's story in a blog post in honor of Down syndrome Awareness month, so I recently interviewed my new friend Sharon; fellow makeup artist, fellow advocate for a family member with Down syndrome. And today... the last day of the month seemed to be the PERFECT day to share that story with you.

What is your sister's name? Sandy Semenuk

Birthday? May 27, 1967

How many siblings are there? Older? Younger? Sandy is the youngest of 7 siblings (4 boys/3 girls)

How did your mother's doctors and medical staff feel about your mother taking her home? Was it a struggle to keep from institutionalizing her back then? My Mom's doctors told her to leave the hospital without Sandy and never look back. "Mongoloids cannot be brought home to a family. She won't live long. Sign these papers, and let the state take it from here." was the advice the doctor imparted. My mother informed him that she had no intention of leaving a child of hers "behind". She also reminded him that she just lost a 7 year old son to brain cancer and how dare he suggest that she lose a child willingly. He continued to support his belief and my mom asked him to be removed from her room and her case.

What kind of things did your mom have to do or what things did she do to help give your sister equality? My Mom was a maverick in her advocacy of Sandy from the minute she took her home. She researched every available resource to educate herself about Down's Syndrome. She discovered Early Intervention resources for physical, medical, and mental development plans. As Sandy entered school age, my Mom was turned down continuously for placement in schools. She placed Sandy in the public school system in our very high standard community only to find they were tying Sandy to a desk to keep her still everyday. My mom moved her to the public school system in the next town over as they were developing a special needs education program. At that time, my Mom felt that Sandy should be separated when transported and in school as they did not yet have resources in place to seamlessly integrate children with special needs into the mainstream programs. Over time, Sandy was integrated when my Mom felt that the school knew how to handle the bullying and name calling. My Mom made it her mission to get to know every political power from the town's mayor all the way to the state's senators. It worked in her favor many times throughout Sandy's life.

Did your mom treat her differently or did she treat her the same as the rest of her kids? No! We were all held to extremely high standards and lived in a very strict Catholic household. We were no angels, however!!! Sandy had heart issues as a young child, so we were asked to watch her activity level and keep her from falling from high places (no tree climbing). My grandmother stayed with us during the week and treated Sandy extremely special and fragile. My Mom had to constantly monitor this especially when my grandmother separated all of her towels and laundry so they didn't come in contact with the rest of us??? LOL! She was a nervous wreck that Sandy would get sick or hurt.

What would you say is your sister's biggest physical/mental challenge? Sandy just had a hip replacement due to osteoarthritis. She is now able to do anything physically and is very athletic and active. Weight control is always an issue with her, but she loves boasting about her healthy diet and eating choices. She also loves clothes and selecting smaller sizes which seems to keep her motivated (like any woman!!!). Mentally, Sandy is very high functioning; however, she thinks in a world of black and white. She cannot understand money management and is at a very entry level for home management and meal management. Her biggest mental frustration is that she would love to have her own apartment, drive a car, and "do whatever she wants like everyone else".

Did your sister graduate high school? College? Sandy graduated from high school when she was 21 as Massachusetts requires special education students to be educated until that age. Sandy continues to take classes for personal growth and development (i.e. computer classes, art classes, history classes) at her day program and at local adult education centers.

What things do you or your siblings remember growing up regarding your sister?

We became fiercely protective of her, especially when other children (or adults) would stare, rudely comment or make fun of her. We also developed a very early acceptance of EVERYONE! We often talk about the fact that at a very young age were all a bit "unaffected" if people were "different". Aren't we all? As protective as were with her in public, we also treated her the same as we did each other. We grew up in a very large family where there was never enough quiet or SPACE!! Patience would often run short with each other and Sandy was just like the rest of us!!!

Did she go to a typical school or special ed school? Sandy attended a typical school with special ed classes. The concept was fairly new and my Mom was once again a maverick at working together with the school (and outside programs like religious ed at our church) to dispel the theory that Sandy was "different", or would pose a risk to other children (yes, that was a concern from other parents AND teachers)!!! How far we've come?

Tell me the story about her finding out she had DS Sandy turned 46 this year and learned she had Down's Syndrome this past summer. She was told by a doctor who was evaluating her mental cognizance and memory. She phoned me and told me she had something very serious and important to tell me. She asked if we should have the conversation in person, but I insisted she just tell me. She was a bit dramatic (very common for Sandy), taking very deep breaths and asking if I was sitting down. Then she announced: "Sharon, I have Down's Syndrome and wanted you to be the first in the family to know." She informed me that her doctor told her that afternoon and she wanted to know if I had ever heard about Down's Syndrome. I actually thought it was a bit humorous. I'm still not sure why her doctor presented it to her like a terminal diagnosis; however, I always try to consider what experience each medical professional may have in the past and present with this. We talked for over an hour and her biggest concern was how will this affect her life. I simplified things by saying that we're all good at a lot of things and not so good at a lot of things. She is no different. We both agreed that neither one of us was very "math oriented", and loved art our entire lives… no difference there! We also discussed how everyone's minds, brains, personalities, etc. react to different stimuli, situations, life experiences, etc. She again was no different. We talked about her fierce independence, her ability to move to her group home after my parents passed away, her likes/dislikes with her house mates (not unlike college in so many ways - INCLUDING trying alcohol!!!), her curious mind and constant desire for classes and education, her work, her volunteer work with the elderly, her annoyance with children (!!!), her love of music and theater, her love of other cultures and experimenting with new foods from other cultures, etc. etc. No difference from anyone else on this planet. She felt better about this "finding" and asked if she should tell anyone else or "just leave it alone". I told her to decide.

Where does she live now? What types of things do they do there? Sandy lives 1/2 mile up the road from me in a very well established group home. She has a HUMONGOUS room as the home is in an old Victorian home that was once a mansion for the founding shoemakers that started this community. Her schedule rivals the busiest executive. She attends an AMAZING privately run day program that has become a model for others. It's truly incredible and emulates a college environment. When she gets home at 3 in the afternoon, she has to complete household chores and responsibilities, she attends a weekly walking club, dance club at a local disco, Special Olympics training, movie nights, bowling nights, shopping nights, take out nights and movies at home, dinner out nights, and sometimes she actually rests. It's very tough to plan things with her as she is always GONE! She also attends CCD (religious ed) AND JCC (Jewish Community Center) as they have fun activities and interesting outings! My mother got her started in both those programs years ago as they were so geared toward people with special needs. She goes on two cruises a year with the group home as well as many weekend trips. Each month, she schedules a massage for herself to "have some down time". She also schedules a weekly manicure and bi weekly facial. She's very much into great skincare and makeup as she considers herself a marketing and business development specialist with my business! The list goes on and on. Her latest exciting ventures are learning Spanish and learning how to make a quilt. Her most important role at the group home is that she is the Human Rights Advocate for her house. She is in charge of making sure her housemates' needs, concerns, issues, ideas, etc. are being listened to and any issues are solved. (Think Tony Soprano - enough said.)

What would you say is the most important thing your sister has taught you? Tolerance and patience. Additionally, I admire her tenacity and ability to overcome fear of change when she first moved "on her own" at the age of 39. It was a huge adjustment. My Mom had passed away in 1999 and my Dad became very ill and needed home care in 2006. We arranged the move so my Dad could keep an eye on things while he was still here. He passed away in 2007 knowing she was in a great place that would keep her safe, active, healthy and busy. Sandy has never accepted change well and I've watched her develop that skill for the last 5 years. She continues to mature and grow into a very interesting, independent adult!

How do you advocate for your sister? I am Sandy's legal guardian and the role has been the most "interesting" one I've had during my career!! On the downside, it can be tiring, frustrating, irritating, maddening, and downright overwhelming. On the upside, like my Mom, when I push bulldozer to get something done and WIN, it is gleefully rewarding. I have worked with wonderful, AMAZING, caring and truly devoted individuals and at the same time, worked with individuals who have no business being in the business of helping people. I have gone to court against the state agency in charge of Sandy, I have been on the television news to flag things they have done wrong and at the same time, have had to work well with all of these individuals to make sure Sandy is in the best place possible both physically and mentally. I think nothing of going directly to our state's governor, senators and district attorney when things don't get done. Luckily, I've done makeup for one of them and got to know the person in a very different setting… anything helps!!! I am not always well loved, but have always been told (even by those that can't stand me) that they wish everyone had an advocate like me. My big mouth always says things with a smile and great lipstick! My 23 year old daughter has learned a great deal from me as I did from my Mom. Sandy is her Godmother and I know she'll take on my role if something should ever happen to me. (She also wears great lipstick and has a great smile!!!)

How would you describe her personality and what are her favorite things? Sandy is joyful, loves to be CONSTANTLY busy, loves music, is a great dancer, has an overwhelming crush on Steven Tyler and is dressing like him for Halloween, SMART, a bit manipulative - no, change that - VERY manipulative!!!, creative, extremely artistic, detail oriented, a perfectionist, caring, has great empathy, collects things and can't let go of them, emotional, has a steal trap memory, is wonderful about sending cards to people, happy, loves fashion, jewelry and makeup, and loves to do well! I could keep this list going forever.

Is your mother still alive? If so, would she like to add anything? Mom passed away in 1999 and was way too young when she left us. I feel her presence daily and only hope that I can be that change maker that she was. Her tenacity, intelligence and love were overwhelming.

A few words from your sis would be AWESOME and of course a few pictures. Yeah… about that… Sandy has been traveling since we met at the Artist Summit. I have not been able to get her in person or on the phone for a few weeks! She did inform me that we would have dinner when she gets back and settled and give me some pictures that she would like to share (probably of her dressed as Steven Tyler) AND give some of her thoughts. (Really? Can you stand it? It's like trying to get the President on the phone!!!!!!!!!!)

Although you may not have a family member or even know anyone with Down syndrome, I hope that when you read this story you were somehow touched and perhaps made a little more aware that our special family members are JUST LIKE YOU. They are not "weird" they are not "retarded" even though they learn at a slower pace; it's simply their way of learning and experiencing life. They have hurdles to jump and mountains to climb... just like us. They laugh, they cry and they celebrate good times just like us. What makes them "different" is the way they go about it, the resilience they have when they fall, the ability to take everything one step at a time with patience, agility and no harsh deadlines, and the smile that often graces their face is the most genuine smile you will ever see, LOVE resonates from those smiles. Although I have not had the pleasure of meeting Sandy, I WILL meet her, it is a must. What I find most awesome about her story is that at 46 years old Sandy just became AWARE of her Down syndrome. I lift my heart to her mother in heaven for a job VERY well done. By never telling her she may have limitations, Sandy never knew she had any. I don't know about you, but her life sounds WAY more fun and exciting than mine!

This is my friend Sharon's makeup website

http://www.ellatude.net/Welcome.html

This is Sandy at a Human Rights Representative meeting

This is Sandy doing her favorite thing... dancing!

This is a picture of the countdown to the Boston Marathon. Sandy's Day Program is a HUGE supporter of the Boston Marathon as they are located near the start.
They go to each mile and have their picture taken as they count down the days to the event. Additionally, they do a huge performance for the runners the day before.