The Good

(Guest post by Andy Flowe – Andy  blogs at Go With the Flowe)

Andy and Sammie

Eventually, I intend to write about the downsides of growing up with a sibling with special needs (although they usually turn out to be upsides as well, at least in the mind of this unapologetically  idealistic college student).  But first, I want to get a little corny.  Every year, my family packs our bags and heads out to the annual Chromosome 18 conference.  We’ve been to over 15 conferences, held everywhere from San Antonio (the home of the Chromosome 18 Registry) and Plymouth, Massachusetts to Anaheim, California and everywhere in between.   We’ve turned it into our annual family vacation, and we all look forward to seeing our second family at the conference every summer.

The thing that I personally enjoy the most at the conferences has been all of the other siblings I’ve met.  It’s really helpful to talk with others who have experienced the same struggles and joys of living with a sibling with special needs.  We usually find a room away from the prying eyes and ears of parents and sibs, and swap stories, be they about how hilarious, sad, frustrating or just plain annoying our siblings can be.  At the 2007 conference in Plymouth, I guiltily admitted to the other sibs that I had milked up the relationship I had with my sister for a recent college application essay.  My admission was met by almost unanimous laughter from the older siblings, and when the laughter died down they all cheerfully admitted that they too, had played up the “I have a disabled sibling” card in their college applications.  “But,” one friend assured me, “It’s okay, because its all true!”  And I realized that despite how cheesy the essay sounded, it was, for the most part, true.  So without further adieu, I present to you the corny, unedited version of the essay that got me into college four years ago.  Enjoy:

My sister has been and always will be the single most important person in my life. Sammie is 20 years old and she supposedly “suffers” from Tetrasomy 18p, but I’d argue that she’s never suffered a day in her life. Tetrasomy 18p is a rare chromosomal abnormality that causes both behavioral and mental impediments, and Sammie is the happiest, most loving, generous, caring person I know. My mom recently asked me “When did you realize that Sammie was different?” I thought about it for a second, then I thought about it again, and I finally realized that I never thought that Sammie was different, she was just Sammie. There’s nobody like her in the world, and I could not be blessed with a better big sister.  In middle school, my dad and I would get into shouting matches roughly once a week over some trivial thing and we’d have to stop and figure things out when we looked over to find Sammie bawling her eyes out, tortured by our fighting.  My dad and I would each give her a hug and talk to her until she felt better, assuring her that we still loved each other.  Whenever my mom or dad would come home with a new boyfriend or girlfriend, the standard of judgment was always Sammie. If Sammie liked my dad’s new girlfriend, then we all liked my dad’s new girlfriend. She was able to weed out the bad matches and my parents made several romantic decisions based on Sammie. At times, I was jealous that Sammie received more attention than me because of her disability, but I always found myself back in Sammie’s room with her arms around me assuring me that she would always love me. I was invincible within those arms.

Andy and Sammie

I’d like to think my writing has grown a bit since writing this, and the corniness of  it (especially the last line) totally makes me cringe, but I still stand by the substance of it.  At the last few Chromosome 18 conferences, we’ve held a “Sibling Panel“, where a bunch of us siblings get up in front of parents and answer questions about what its like to live with a sibling with special needs.  This past year, after the panel was over, a few parents came up to me to talk, and one told me “Gosh, Sammie is just so lucky to have a brother like you.”  The compliment came as a surprise, and it was definitely flattering, but I found myself feeling a little disappointed that I hadn’t completely gotten my message across.  If there is only one thing that I can teach others about growing up with a special needs sibling, it’s this:  Sammie isn’t the lucky one, I am the lucky one, and there is absolutely no way I would be the person I was today if it wasn’t for her. She pushes me to be a better version of myself every single day, and all she asks for in return is some love.  And I’d like to think that if everyone had a Sammie in their lives, the world would be a whole lot better place.

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About Andy

I was born in 1989 with the best big sister anyone could imagine. Sammie, who was born with Tetrasomy 18p, is my best friend, one of my biggest influences and certainly my biggest fan. Growing up with a sister with special needs certainly had its challenges, but I certainly wouldn't trade my sister for anything. When I was younger, my friends used to ask me if I ever wished Sammie was "normal," and I would always grin and correct them: "Sammie is normal, are you asking if I wish she was different than she is now?" (The answer to that by the way, as if you even have to ask, is absolutely not). I'm extremely fortunate to have Sammie as a sister, she has taught me countless valuable lessons about tolerance, friendship, love, happiness, responsibility and more. That's not to say growing up with a sister with special needs is not without its struggles. But all siblings have their problems, and I'd wager a guess that we have far less of them than your average siblings. In 2007, I graduated High School and went off to college, and Sammie and I were forced to learn to live without each other for the first time in our lives. We've learned to adjust, she calls me several times a day to check up on how I'm doing, and I go to Lehigh University, a short 3 hour drive from my home in Maryland, so I get to visit her fairly often. Still, I miss her a lot, and I hope to be able to live much closer in the future. I'd like to use DifferentIzGood as a platform to describe what its like growing up with a special needs sibling so that hopefully other siblings, parents and potential parents can learn from my experiences what a great thing it is. Please feel free to contact me on twitter @ABCFlowe or by email if you have any questions!

4 thoughts on “The Good

  1. Excellent, Andy! The voice of siblings is important because I know first hand how crucial a supportive brother/sister is. The love of a sibling is invaluable and my hat is off to all of the children and youth who take time to educate others that their brother/sister is more than a diagnostic label, they are foremost people too!

    This is a speech that my son presented at a medical conference as a “sibling speaker” a few years ago:

    Good afternoon, my name is Daniel Martin, I am 13 years old and I am here to speak to you on the subject of living with persons with disabilities and its impact on my life. It affects me because it limits me at times when I have to stick up for my brother (or sister). Sometimes the problems that arise are like when my friends laugh at some of the things my brother does. Other things: When somebody I know does stuff like make fun of or laugh at a person with disabilities, I do not join in, I tell them to leave the person alone or try to change the subject.

    Some of the things that have helped are having rehabilitation agencies that support people with disabilities like Transitions. They help by teaching others that everyone is an individual no matter how different they look or act on the outside. They hire people to do respite so that sometimes my brother or sister could do things with an aide. They do fun things with families like give tickets to events; not just for my sibling(s) with a disability, but sometimes for the whole family to enjoy.

    Some of the things that hurt are like when our family was not supported. It is difficult to have a brother or sister with a disability sometimes because it costs a lot of money for things that most other people don’t have to buy, like diapers, babysitters for older people, and special clothes or shoes. What happened to our family was not good because my mom & dad were told that because they were parents and not foster parents, that they could not have the same things for my sister. That is not fair. Parents should get the same money for their own children so that they can stay at home. Things are changing and it is getting better now.

    My sister had tetrasomy 18p so her disabilities were very visible to others. She wasn’t made fun of as much because people knew she had problems. My brother’s disabilities are not so visible to others. He has a minor form of Autism so sometimes he is made fun of due to his problems because people are oblivious that he has a disorder. One time I got hurt and had to go to the hospital because some older kids were picking on my brother and I stood up to them and got pushed into a wall. Sometimes it is hard even for me to remember that he is not doing things to bug me on purpose.

    I don’t mind when people ask questions about being disabled. I did a science fair about my sister’s disability and lots of people asked what her chromosome disorder meant for her and what kind of problems does she have. When people ask questions they get to know the person and are not afraid of them being different or understand why they are not talking. It just is the way that they are, like having blue eyes or brown eyes.

    My little brother, Alex, wrote something for our sister when she died and it says a lot about how we all feel: “We loved Sam very much; we are sad she had to go. Samantha was a good sister. We love her very much. She might have pulled my hair, but I still will always love her forever. She will always be in my heart.” “We loved playing with you very much. We loved your crazy laugh. We loved when you stuck out your bottom lip and pouted. You are very beautiful, Samantha, and if you grow up, I bet a big man would think so too.” “I loved it when you said my name in sign-language. You were so kind to us all.”

    It is the good things that we remember. Things that other people who don’t know someone with a disability may not know, that they are just the same as you and me and they feel love and they are loved.

    Thank you,
    Daniel 10-19-2008

    • http://en.wikipedia.org/wiki/Samantha%27s_Law

      Samantha’s Law is a Canadian child protection law. The life and circumstances surrounding Samantha Lauren Martin, a child with a rare chromosome disorder, Tetrasomy 18p, led her mother, Velvet Martin, to challenge archaic laws inhibiting the rights of persons with disability and their families. On December 3 2009 (the same date marks the United Nations Convention on the Rights of Persons with Disabilities being tabled in the House of Commons of Canada), Velvet Martin’s persistence resulted in the establishment of “Samantha’s Law.” The Amendment to the Alberta Family Support for Children with Disabilities Act, became effective retroactive to December 2006. Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services: “The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services.”

  2. Thank you Andy for sharing this. I often wonder how my daughter feels about my son. She is younger than him and excels in school. She never acts like he is different, but maybe that’s because we have never treated him “different.” I hope that one day she will have the same kind words about her brother as you did about your sister. Your sister is lucky to have a supportive brother. I am glad that you were both able to learn from each other. God bless!