DS Awareness Day Part 2 – Edwardsville Family Photos
This is Part 2 of our 3 part series for World Down Syndrome Day! Hopefully you’ve had a chance to check out Part 1 already.
We met up with Sierra and family this past weekend at for some family photos at the Gardens at SIUE. The fog was thick – and I mean thick – so it gave the photos a cool vibe.
This family was seriously great. High energy, funny, ornery (I like that in people) and it didn’t take long to tell they are a tight-knit group.
Sierra impressed me right away. At first, she was not so keen on my and my photo idea. But it only took one offer for her to use my camera to have her smiling and rocking this photo shoot! She handled the camera, directed the group and fired off several rounds of shots like a Pro!
We got some group shots, portraits of each family member, and at the end we set aside a little extra time to focus on Sierra – which I don’t think she minded one bit! So take a look and enjoy some thoughts from Sierra’s family about living with Down Syndrome. Hope you learn something!
Me: Tell me about learning Sierra had Down Syndrome…
Laura (Mom): I didn’t know Sierra had Downs Syndrome. I got the triple screen done and it came up negative. For me that was a positive. My husband knew right away when she was born. Well, he thought he knew, but since the doctors didn’t say anything he assumed it must just be a few similar characteristics.
The nurses kept taking her all day and finally I questioned them and they said a geneticist was coming to talk to me the following day. She saw Sierra, and told me she had enough characteristics to be tested, but some were missing so it could just be family traits.
But I knew.
It was really hard for me. I was of course sad for myself a little…seeing my daughter get married and grandkids, etc. but more sad for her. I knew very little about it and was afraid people would make fun of her. I prayed really hard – for her and my family – that that wouldn’t happen and people wouldn’t think bad things about her. Well I can’t say it has never happened, it has, but she is a beautiful, strong willed little girl.
Michael (Dad): Initially, I was devistated – I wanted so many things for my daughter’s future, and that dream was so suddenly shattered. Then, once I realized that she was really no different than any other child (in that, she will learn and grow and give to the world everything that she is capable of giving), I finally got it – it wasn’t her dreams that were shattered…they were mine. It got a LOT easier after I accepted that she will give to to the world what she can, and that I will be privileged to be there to help her for as long as the Lord has us on the Earth together.
Me: Tell me about Sierra now…
Laura: She is always wanting to do the next thing, see the next friend, have the next experience. She shows unconditional love, tells it like it is, trys her hand at sarcastic humor like her father and brothers, and loves everything good about her mom and other women around her.
She is truly a blessing and joy in our life. Now that I’ve had her, I’d do it again. I wouldn’t wish for her to have Downs Syndrome, but I wouldn’t change my mind to have her because of Downs Syndrome. Sierra brought our mixed family together in love.
I can’t wait to see all that she will accomplish in the future. It won’t be the same as my other three kids, but none of us are the same. Having a child with Downs Syndrome is a stressful at times/wonderful adventure that is truly life changing. I love you Sierra!
Me: What kind of challenges is Sierra facing? How does she overcome them?
Laura: True friends and feeling like she fits it are her biggest emotional challenges. Now that she is 12 she is getting her first taste of peers making fun of her and noticing she is different and it hurts her a lot.
Her family helps her fit in and her church community and places that accept her as “special normal.” Like Curtains Up Theater Company, which allows her to participate in musicals, even though she really can’t sing. We met her dance instructor there and she dances at Premiere Performance now because of the friends she made at theater.
Michael: At first, other children were more accepting of her. There were a few looks and a few questions, but no teasing. As she nears her first year at middle school, she is starting to see a lot less tolerance and understanding of her and her disability.
Me: What is Sierra into? Does she have activities or hobbies?
Michael: She absolutely loves to get in front of people, especially on stage. She loves everything about theater, and has been in several productions. She also loves dancing and tries very hard and does a pretty good job.
Laura: She has a group of friends with Downs she sees in St. Louis about 4 times a year and the rest of the time hangs with family and friends. She loves movies, swimming, dance, photography, travel and eating out the most.
Me: “dance, photography, travel and eating out” This girl is really winning me over!! What do you wish people understood about Down Syndrome?
Laura: They aren’t all the same, you can’t catch it, they are capable of much but need some tolerance and support.
Michael: You can’t catch it from being around someone…it’s genetic. Most of the people with Down Syndrome that I’ve met over the years have been incredibly sweet and loving to everyone around them. They want to feel accepted and would love to find their place in the world.
Dustan (brother): That they are people that want to be treated with respect. And they are the best to have around!
Me: What makes a community a friendly/supportive/encouraging place to live for a person with Down Syndrome?
Laura: Tolerance. Acceptance and willing to offer her a chance. We have met mostly wonderful supportive people who love her. But some parents don’t want their children around her. I have to believe that it is just ignorance or a personality conflict. She is so sweet, most people lover her. Don’t be so caught up in what things look like or are supposed to be. Treat all children as unique individuals with potential and they will rise to the challenge to the best of their ability.
Michael: I’ve been pretty happy around the Edwardsville area. The people here, for the most part, smile at her and treat her very nicely. Even when she sometimes acts up a bit in public, most people keep quiet and don’t look at us funny as we try to correct the situation. There is a local Down Syndrome group that has some activities which are fun to attend. We also get together with some other little girls around her aga in the St. Louis area with Downs.
Me: What can the average person do to be more supportive?
Michael: When I was in my early twenties, a fully grown man with down syndrome came up behind me while I was eating in a restaurant, wrapped his arms around me in a big hug. I didn’t know who he was or why he was hugging me, but I know what I felt. Instinctively, I knew what was going on and gave him a little pat on the hand as I turned around and told him hello. I told him thank you for the hug and that it was nice to meet him. I don’t know that most people need to do more than that – there can be opportunities to volunteer to help out, like with the local down syndrome group activities – but I think that as the parent of a special needs child, I most appreciate when people are kind to my daughter.
Me: What advice would you offer a family whose child has just been diagnosed?
Laura: Find and read the short story about Trip to Holland.
Me: A must read for anyone with a child with special needs. Or anyone who just wants to understand the perspective a better. It’s a true lesson in managing our own expectations. Here it here:
Laura: Things won’t be the same as you imagined, sometimes it will be really hard, but it is also wonderful. Your child will be a sweet part of your life and bring light to many others. A lot of the information you read will scare you. Get educated from good sources, not just scary internet articles.
Treat your child as if they are like everyone else whenever you can, but do all the extra stuff it takes to make them successful, like early intervention, adaptive techniques to help in school and at home, get good medical care and ask lots of questions.
Get the cd/video program “Love and Learning” or borrow it from someone. Reading is everything and it’s really hard in school if you can’t. Get educated, stand up for your child. Be adaptable and always searching for ways to help your child succeed and they will.
Michael:
I also asked Sierra some questions about herself and here’s what she had to say:
Me: What is your favorite thing to do?
Sierra: Be with mom, going somewhere, photography, dancing, theater, piano, barbies, my family, violin, swimming, art, roller skating, going to Aunt Laura’s, watching movies, seeing friends…going somewhere, going somewhere, going somewhere….
Me: Can I get an ‘Amen’ for going somewhere?! What are you most proud of?
Sierra: My family.
Me: Can I get another ‘Amen’ for her being proud of her family?! This girl has it figured out. Family is were its at – no matter if it’s your blood family or a family you’ve assembled of friends – you’ve got to know who’s got your back if you really want to live.
Sierra, can you describe yourself if 5 words or less?
Sierra: A good loving friend.
Me: Do you have a favorite movie or show?
Sierra: Scooby Doo, Tangeled, So You Think You Can Dance, American Idol and Bones
Me: What is something you really, really want to do someday?
Sierra: Be a teacher, travel anywhere, be with my family, meet a princess or Barbie, and visit lots of different restaurants.
Well, it looks like Sierra has a good start on the things she wants to do. She is surrounded by a wonderful family – and a wonderful selection of restaurants here in Edwardsville! But most importantly, she already is a teacher.
Keep being you, Sierra, we all have much to learn!
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