Wednesday, November 10, 2010

A Brother's Perspective

(to anyone who reads this - I was speaking on a panel talking to future teachers tonight about what it's like growing up the brother of someone with special needs. I ended up scrapping this whole thing and just blabbering for fifteen minutes instead, but this is what I had originally planned on saying)


My name is Andrew. I'm an Aries. I enjoy acting, composing music, dance, a good film (and sometimes a particularly bad one), and being Sam's older brother.


My little brother Sam has special needs - though little is probably not the right thing to call him these days, weighing in at 5 foot 4 and 125 pounds. When people ask me if I have any siblings, ordinarily, I tell them, "yes. I have a younger brother - he has special needs." They get awkward and ask, "what's wrong with him." I tell them, "nothing. but he has Autism-Cerebral Palsy-Kabuki Makeup Syndrome-Cyclic Vomiting Syndrome-and-Congenital Myopathy of Muscle Fiber One." They stare blankly. I smile. They say, "oh."


It's not an easy thing to be the guy at the party who gets asked nothing but heavy questions. Why don't you eat meat? What's wrong with your brother? Why'd you move back to Sacramento?...


I'm not morally opposed to meat-eating, but of the clinical studies I've read a whole-foods plants-based diet is the healthier way to live. But who wants to hear about clinical studies and the affects of animal protein on cancer growth while chugging a PBR and chomping on a burger? And understanding the levels of Autism Spectrum Disorder and how they affect your little brother and his relationships in life is a challenge in and of itself. Then take those conversation killers and put them as two of the central foci in the life of a twenty-three year old, single theatre and sci-fi geek. Yeah - my milkshake really brings all the girls to the yard…


There are infinite, and I mean that with the full breadth of the word, infinite challenges that go along with being the brother of someone with special needs. But keep in mind that, growing up and throughout life, kids (or coworkers) are mean. And teasing hurts. Being different hurts. And so, above them all, there has been one challenge that stands out in particular.


And I remember, actually with extreme clarity, the moment I learned the implications of the R-Word… "Retard."


I was six.


I had gotten into my mom's Isuzu Trooper with my best friend Keith after school. We weren't even out of the school parking lot when Keith and I, in response to the classic, "how was school today, boys?", responded, "Good - but that yard duty is retarded!" "yeah! what a retard!" My mother stoically and benignly said, "boys, retard isn't a nice word." we said, "it isn't? but it just means stupid!" Ah youth! The things a six year old would think, right? But of course, how could anyone beyond the level of a six-year-old's mind think THAT?!


My father and mother are very patient and understanding when dealing with the overwhelming ignorance of the general population. I, on the other hand, am really not. I've been in more fights stemming from ignorant, cruel people mocking my brother and using the R-word than I can count. And I don't mean only verbal fights. My mother once had to physically restrain me from attacking two children in the customer service line at Target who were pointing at Sam, whispering to each other and giggling. I was probably eight, maybe nine.


Now, I'm going to guess that many of you listening have siblings. Probably most of you. I'm going to guess that of that portion who have siblings, probably two thirds have at least tolerable relationships with said siblings. You know, "on a talking basis" at least. This question is for you: when a lover breaks your heart, when a best friend betrays you, when you get laid off, where do you turn? sometimes you just need some sibling time, right? You just want to get together with your brother or sister and talk it out. Have a beer, maybe a trendy cupcake, and talk. I will never have that experience. Sam can't talk. He uses adapted ASL tailored specifically to his abilities to communicate his basic needs and some of his very simple wants. Movies, music, food… He and I shall never share heartbreak stories. He and I shall never be there when the other one falls. He and I shall never help each other move into a new apartment. I will help him because he'll need it.


In a world of takers, it's lonely being an unconditional giver. As a side note to this point, Don Quixote is my favorite book. People take. And take. And take. Friends, lovers, teachers, employers. And, after growing up with Sam for the last eighteen years, I can't not give. It's instinct. Doing otherwise would be asking a Bull to eat veal. There are a lot of siblings who don't feel this way. There are many people my age -- and older -- and younger -- who have rejected their special needs sibling. Ignored them. Shunned them. Pushed the entire idea of their existence away. In the five years I had on this planet before Sam was born, I was taught better than that.


Then again, it's not easy being the eighth-grader who stays after science class and has to confront the "cool teacher" after he's used the R-word in class. It's not easy being the senior in high school who confronts the sixty-year-old "cool priest" who teaches choir after he's made a big joke about a ritardando. It's not easy being the college graduate and professional actor who has to pull much more experienced and popular coworkers aside and ask them not to use the R-word only to have them making a "Retard Joke" five minutes later to the delight of the rest of the cast.


People like Sam and I shall always be on the outside looking in. The difference between him and me is that he doesn't see the ignorance and malice that keep us out.


I understand that I can come off as bitter and angry. I am. I am bitter and angry that my brother has to live in a world of people that not only don't understand him, but have the resources to understand him but refuse to look at them because they'd rather live in ignorance.


I'll tell you another story. I knew a guy. Tall guy. Gay guy. He, no matter how many times I asked him to, never stopped using the R-word. I finally got fed up with it and, trying to restrain myself from a violent outburst, I hit him where it hurt. He said, "why do you make such a big deal about it? It's just a word. You shouldn't care." I responded, "that means a lot coming from a six foot faggot." Everyone around got mad at me. How dare I. How dare I use such an offensive word. Oh - but isn't a faggot just a burning stick? or a cigarette if you're from the UK? No - it's an extremely offensive term. It's degrading. It's objectifying. The N-word, the C-word, the F-word… well, okay, the F-word is different, but the aforementioned F-word. Aren't they just words? Absolutely. But language is what makes humans special. We have thousands of languages verbal or non-verbal, and hundreds of thousands of words in each one. Why we choose to make some words cruel and mock people with them, I will never understand.


Explaining to people that I have to stay home on a Friday night to take care of my brother is hard. Trying to get people to not use the R-word one person at a time is… impossible.


Being Sam's brother is the hardest thing I've ever done. But it's also the best thing I'll ever do. I was at Swabbies - a little biker dive bar slash restaurant with Sam one night to see one of his very favorite bands, Mumbo Gumbo. When we take Sam to a concert, he loves to dance. When Sam dances, whoever's with him gets the workout. We either carry him and dance with him on us, or dance with his wheelchair. Let me tell you, a four-minute song has never been longer than when you're dancing with an extra buck-twenty on your back. During one of my beer-breaks, the people sharing our table tapped me on the shoulder. One of them said to me, "You're the image of Christ." I've had a good laugh at that many times since. I'm not an "Image of Christ." I'm a guy who, at the age of five, had to take on the role of a twenty-year-old aid. Just like my mother and father, I just live the life I've been given and live it the best I can. This is not something I chose. But it is nice to hear a compliment once in a while.


If it weren't for growing up with Sam, I wouldn't be as strong as I am today. I wouldn't have been stubborn enough to compose, direct and produce a twenty-minute musical as my senior project in college. I wouldn't have been relentless enough to create three original short plays about the affect our war in Iraq and Afghanistan is having on our soldiers and produce, direct, design and stage them in my back yard in forty-seven days. I wouldn't have the motivation I have at the gym when I work out (Sam really is the best personal trainer. If ever you need a motivator, needing to defend yourself during a violent, uncontrollable outburst from a fully grown man is it). Sam has been the single most formative contributor to who I am and who I have been growing up. He and I can't go out cruising for girls together. We can't sit up until the small hours of the morning talking through our problems. We can't arm wrestle, or shotgun a beer or play video games together. But he's the only person I know who's never betrayed a friend. He's my brother. I'd do anything for him.

27 comments:

  1. Thank you for this. Thank you for being brave enough to write this and say it out loud. I am the mom to an 18 year old mentally handicapped daughter and this helps me to see even more clear what my 15 1/2 year old faces every day. I believe the siblings are saints..at least those that don't abandon their brothers and sisters, and I believe that some day, this hideaous word that we fight so hard to extinguish will some day stop being used because of strong loving caring siblings like yourself. Bless you for this today...I needed to see this more than you know.
    deb - mom to Erica 18, Kernicterus
    Madison 15 1/2

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  2. Well said! I had a son with special needs and while I never received comments directed towards him, I've heard the word "retard" used in a derogatory way more times than I can count. I speak up to those I know, but find it difficult to speak up to doctors, teachers, or even some friends. I ignore it and tell myself they just don't know ...ignorance. I now will speak up more often because of you and your brother.

    Thanks for sharing,
    Amy

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  3. That was pretty profound. We internalise so much stuff other people simply won't get, even if they tried. Well said, all of it. There are so many cliches said to us about those of us with disability in our families but honestly, I have to say it, Sam got lucky with you as his bro.

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  4. Your honesty and courage to reveal such vulnerability is humbling. I watch this same relationship between my special needs son and his brother, daily. Our love for my son is fiercely protective and one can only understand if you are living it. Thank you for posting what came from your heart. You are right, "it's" not just a word and shouldn't be taken as such anymore. Blessings to you and your brother!

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  5. It is hard being the sibling of someone with specia needs, in turn it is equally hard to be the parent of a sibling of someone with special needs. It is hard to see your daughter turn from the younger sibling to the honorary older sibling simply because she has surpassed her older brother. My daughter went from younger sister to older sister quite quickly, she took the title and ran with it. She never remembered any different, though with my oldest son's birthday his numbered birthday was a reminder that he was the oldest in birth order only. She watched over him in school, explained his special needs to friends and when he had seizures in school walked to his class to assure his teachers that he would sleep and call me. It is hard for a parent to see her watch over him and not the other way around. Yet it is also heartwarming to see her goodness, her strength, her compassion for him and others, because of him. You need to know your greatness is noticed by many and it is you and siblings like you who bring tolerance and understanding to a cynical and cruel world. Thank you.

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  6. Thank you, Andrew! This is honestly but beautifully stated. God has blessed you and Sam with one another plus parents who raised you to see the worth in every person. Keep on speaking out!

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  7. Being the brother of someone with special needs is a dynamic group to be a part of providing challenges and opportunities. My twin brother, Bart (37) is an active part of my family's (wife and two sons) daily life. My favorite few words in your post are the following..."Being Sam's brother is the hardest thing I've ever done. But it's also the best thing I'll ever do." All of our stories are different, but I share this with you - that my life is better because of Bart. Take care.

    Mark

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  8. I'm not ashamed to say that I was once an avid R-word user. I was the one who thought, "It's just a word." "it just means stupid." and my favorite, "I didn't mean it like that...against THEM."
    Then, at 24 I had a baby with spina bifida, hydrocephalus and numerous other conditions associated with those. The doctor said, "Your baby will likely have some level of mental retardation."
    That moment, my son, my new life has forever impacted not only MY use and severe hate for that word but anybody within earshot of me who might choose to say it also.
    "Trying to get people to not use the R-word one person at a time is… impossible" That is one of the truest things I have ever heard. The means to which some people go in order to justify their use of that word shocks me. I once told a co-worker how insensitive it is, how badly it hurts not just me but thousands of others and she replied, "No, my father used to have a camp for them...it's okay." OH! Well, I guess I stand corrected.
    I can't thank you enough for this. Your and Sam's story is one that is so common, but the responses and reactions ring the same for everybody like you...like us, we're outside looking in.

    I fully intend on sharing this, it's amazing. Thank you for writing it.

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  9. Hi Andrew, I am Melanie, I too am an aries. I know I am going to sound like a big mushy mom when I say, "I just want to hug you...like forever...." And the mother of a 21 year old special needs daughter and her little-big 17 year old sister who is still very special in the way you are special. I have pulled her out of fights and she has done the same where I am concerned. Together, we have taken on the "cool" coach/teacher who used "retard" as a way to get people's attention. To which my 17 year old responded, you don't have to respect me when I ask you not to use that word but when I tell you that I promise to be sure you just succeeded in getting my mom's attention, you better be afraid.... ahhh Andrew.... like Sam, my daughter Christin will never talk, uses basic modified sign, and like Sam, she also loves music and we know all too well the workout involved in those dances! =)
    To close this monstrously long comment: let me just say.... I know we are on the outside looking in, but this perspective we have is a blessing indeed. When I look in, now, at this point in life I realize "where we are" really isn't such a bad f'ing place to be! =) (that's my "ok I don't sound like much of a mushy mom moment"!) You and my 17 year old, and other siblings of special needs kids share in a brother/sisterhood of your own....

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  10. Thank you. I cried reading the whole thing- Noel Clayton, younger sister of a older brother with Xeraderma pigmintosa( skin cancer, connective tissue disease, mind as sharp as a tack but his body at the age of 37 is that of a 80 yr old man) mother to three "normal" children and my youngest was born with Williams Syndrome( heart,kidney,blood pressure,spinal cord issues..and global developmental delay) so you could understand where you are coming from and I understand what my kids are going through.

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  11. I have chosen friends and my husband based on how they feel about my special needs brother. If you are intolerant, you are not in my social network. My brother and I are a package deal. And I love him even more for that. :)

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  13. Words from the heart, thank you. Although I do not have a sibling with special needs, I do have experience with ignorant people about this topic. I was a special education teacher in a Life Skills class and I am now a special education consultant and trainer. I always took my class into the community and one time we were shopping and students always took turns with paying and I was so proud of my student who had CP and was intellectually disabled because he was using all the skills taught to him, counting money, making eye contact then...I hear huffing and puffing behind me, I looked at the woman who rolled her eyes at me and my blood started to boil. I had to take several deep breathes for I had to be the bigger person. So, I kept given positive praise to all my students who were being so patient. We finally finished, the student got his change, the other studnets grabbed the bags and to my surprise...I hear, "you should be ashamed of yourself" the cashier voiced her opinion to the impatient customer who felt we were taking too long. It's hard sometimes to bite your tongue and be the bigger person, but we can't stoop the level of ignorant people. We have to keep advocating for these special individuals in our lives."Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity" Martin Luther King
    www.skillfulsquad.net
    www.skillfulsquad.blogspot.com

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  14. As a mother of two girls, 7 and 8 years old, I feel my greatest responsiblity is to help foster a good relationship between the two, dispite the challenges that present because my oldest has Down's Syndrome. They are very close now and want for them a lifetime of friendship and love.
    My second greatest challenge is to try to not put too much weight or responsibility on my typically developing child. I say challenge because she seems to have been born with an innate sense of caretaking, understanding and Duty.
    I know there is not a lot to be done to squander that away, but I wish for all you sibs, a great value on balance and peace in your lives. I want you all to know simply acting out of love is enough.

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  16. Thank you for writing that. For a second I thought I was reading something I would have wrote. I completely relate to everything you wrote and know how hard, and yet very rewarding is it being a sibling to someone with a disability. I know I would not be the person I am today if not for my sister and am thankful for every day I have with her.

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  17. Thank you. Beautiful post. There is no such thing as a life not worthy to be lived. Thank you for reminding everyone of that.

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  18. Thank you for this beautiful, heartfelt post. My 13 year old daughter is also the sibling of a special need's young adult. Joe is 16 and almost 6ft tall and about 150 pounds but sees himself as a small child who can sit on your lap. There are times where they both torment each other to no end. However, like your brother, my son does not speak and has limited communication skills and my daughter has become his voice in so many ways.

    I know, that sometimes it is very hard, and you might have felt lost and under-appreciated in the never ending struggles which consisted of hospital stays, therapies, and "melt downs". But, let me tell you that your parents appreciate your selflessness and empathy more than you could ever imagine. You are right, none of us asked for this in our lives, but instead of complaining you accepted and for that you are a true hero. I know that without the understanding and love of our "typical" child my husband and I would be lost and Joe would never have proven so many "specialists" wrong.

    So from the bottom of my heart thank you for being Andrew's voice and most of all thank you for being a voice to so many angels who have none. I thank God that he chose the right person to be Andrew's brother.

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  19. So Andrew, my name is Amber and I'm the 17 year old that lady Mel wayyy up there mentioned in her novel-length comment. I am just like you and it made me cry with happiness and appreciation to read this. My big sister has Cerebral Palsy, and I respond the same way when they get super awkward and weird and quiet and ask, "Well what's wrong with her?" There's not a thing wrong with my sister. She can be a handleful at times, but I still love her more than anything. When we went for her 21st birthday at BB King's in Nashville, I was the first to pull her up onto the dance floor and dance with her, with all her weight on my shoulders, and I'll always cherish that. We'll never do the things normal sisters do. I'll always miss out on that too. And it sucks to think about that, but I wouldn't trade her for the world, cause she made me strong, like you said. Guess I wrote a novel too. :P But thank you. This kind of thing really validates the running and screaming and helping at the Special Olympics and the fights in the school parking lots. Thanks. <3

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  20. Thank you for sharing your story, and your life with your readers. By doing so, you are speaking for Sam, and all others who do not posses the ability to speak for themselves.

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  21. That was great, I'm the younger twenty-year old sister of an amazing twenty-two year old girl who happens to have down syndrome - and as a result pulmonary hypertension, and a really awful heart disease - and I used to feel disappointed that I couldn't have the equal relationship with her, I also struggled until I was 14 with standing up for her when she was bullied because the kids were older and I was bullied too because of a physical disability. Ultimately though, although this role can be difficult I wouldn't trade it because she is the single most important person in my life.

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  22. While I agree that the "R" word should not be used in a derogatory way, I am tired of the political correctness of using the words "mentally retarded". For heaven's sake...the word retarded does NOT mean "stupid", it means slow. With that in mind, the term "mentally retarded" means mentally slow. Which, my son is....he has Williams Syndrome and has an IQ of about 50. Translated, he is mentally slow and at the age of 12 has the cognitive ability of a 5 year old. I love him more than any mother could love a child, but I am not ashamed that he is mentally retarded. Bottom line he is...but society has made the word retarded a "bad" word. Let's help others see that it should not be a bad phrase but just a phrase that describes someone with a disability. Having a disability is not a bad thing, as you pointed out....it is the most difficult thing you have done, but the best thing, too. I echo that.....having a child with a disability is the most difficult thing I have had to endure, but the most rewarding thing, too. Thank you for your post. I had tears in my eyes when I read it because I have 2 other children. I hope they feel the same as you some day!

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  23. Sir, i can not explain what this has ment to me. I am not an older brother, or in that case a younger brother, of a special needs child. However i was diagnosed with a rare disorder called Hereditary hemorrhagic telangiectasia (HHT). I grow AVMs or Aneurysms in my lungs. I can't tell you how may people i have herd say "Jeez dont have an Aneurysm" or "calm down you might pop an Aneurysm". Without them knowing i have it. I would politely say please stop ir explain what i have but meathead people would keep saying it. I have been in physical altercations as well as said things and lossed friends because of it. Congratulating you on being a good older brother is not enough, nor is it something im sure you would take. As my brother never took it when times were bad for me. You do it because it's what you were taught and it is how you feel. I commend you on sticking to that. Sticking it to the people who are flat out mean and just plain ignorant twords anything that doesnt affect them. Your brother and your family are lucky to have you in their lives. The world would be a better place if there were more people like you. Thank you for the advise about going to the gym insted of hitting people. That may help. Both you and your brother are lucky people, to have each other is a special thing. God bless

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  24. Wonderful! I am always so proud of the siblings who so intuitively are able to speak on behalf of their loved ones and educate others in the process. One of our sons was asked to provide a speech a few years back from the perspective of a sibling to an individual with disability. Daniel spoke for our local rehabilitation hospital for The Canadian Family Advisory Network (CFAN):

    Good afternoon, my name is Daniel Martin, I am 13 years old and in grade 9. I am interested in athletics. I might become an elementary teacher one day, but I'm also thinking about police work and the trades like my dad and grandfather. I am here to speak with you on the subject of being a sibling of persons with disabilities and its impact on my life. Having a brother and sister with a disability affected me at times because I have had to stick up for them. Sometimes problems that arise are like when my friends laugh at some of the embarrassing things my brother does. When somebody I know does stuff like make fun of or laugh at a person with disabilities, I don't join in, I tell them to leave the person alone or try to change the subject.

    My sister's disability was a chromosome disorder so it was very visible to others. Samantha wasn't made fun of as much because people knew she had problems, but my brother's disability is not as plain. He has a minor form of Autism - our doctor calls it Aspergers-like - so sometimes he is made fun of because people are oblivious that he has a disorder. He doesn't look any different, but at times he doesn't act his age. One time I got hurt defending him and had to go to the hospital. Some older kids were picking on my brother and I stood up to them and ended up with a concussion. Sometimes it's 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 disabilities. 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 she had. It is called tetrasomy 18p so that means she had too much chromosome material: An extra half of the top part of chromosome 18. For Sam, it meant that she couldn't speak very well, she needed lots of attention, she had small ears and facial features and she was missing a crease in her palm - it is called a "simian crease". Samantha had other difficulties so she needed supervision for the washroom and stairs. Otherwise, she was just like a "normal" sister. She liked to play with us, but she also enjoyed annoying us.

    Some of the things that have helped are having support groups that help people with disabilities like Transitions Rehabilitation Agency. They help teach others that everyone is an important 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. A lot of my parent's time is needed for my brother and sister. So, the agency does fun things like give tickets to events; not just for my siblings with a disability, but sometimes for the whole family to enjoy together.

    continued...

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  25. Part 2:

    Things that hurt are like when our family was not supported. It is difficult to have a brother or sister with a disability because it costs a lot of money for things that most other people don't need, like diapers, special clothes or shoes and babysitters for older people. What happened to my family was really unfair: My mom & dad were told that they could not have support for my sister when she was born unless she lived in foster care. Parents should get the same help for their own children so that they can stay at home with their family that really love them. Things are getting better now. My mom was able to get a family law changed for kids with disabilities like my sister so that now when families ask for help, they do not have to give up rights.*

    When people ask questions, they get to know the person and what kind of problems they have. Then, they are not afraid or wonder why they do some things differently. Like why my sister didn't talk much. It was just the way things are. Like having blue eyes or brown eyes.

    My little brother, Alex was 8, when our sister died. He wrote this for her and it says a lot about how we 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 might not know. People with a disability are just the same as you and me and they feel love and they are loved.

    Thank you,


    Daniel 10-19-2008


    *Samantha's Law:

    Amendment to the Alberta FSCD (Family Support for Children with Disabilities) Act, became retroactive to the time of Samantha's death in December 2006:

    http://www.child.alberta.ca/home/527.cfm

    "The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services."

    Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services.

    In Celebration of the Importance of Life & Loving Memory of:

    Samantha Lauren Martin,
    Sunrise June 4, 1993 - Sunset December 3, 2006.

    Our family endeavors to ensure that Legislation reaches National level in the hope of better promoting Family-Centred Care in legacy of our angel.

    Velvet



    (\ -- /)
    ( \()/ )
    ( / \ ) TAKE THIS LITTLE ANGEL ^j^
    (/\/\) AND KEEP HER CLOSE TO YOU
    / \ SHE IS SENT AS A GUARDIAN
    ( _____ ) TO PROTECT ALL THAT IS TRUE

    Velvet Martin,
    Administrator for Tetrasomy 18p Canada

    "Samantha's Syndrome"
    http://www.tetrasomy18p.ca/

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  26. Hi Andrew. I'm a mom to two wee boys with disabilities as well as two other teens. It is extremely interesting to me to read about your perspective as a sibling to a brother with disabilities. Thank you for this.

    I wrote about a similar topic and how the R word affects our family, earlier this year if you'd like to check it out. http://www.theredneckmommy.com/2010/03/05/why-you-shouldnt-use-the-r-word/

    Thanks so much for your perspective. You have no idea how much it means to this mama.

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  27. As the mother of three beautiful children with special needs(that sound nearly identical to your brothers special needs) I am so happy to hear you have such a wonderful relationship with your brother. It is very difficult to deal with the way that many people in society treat people with disabilties. It breaks my heart everytime I hear someone use the "R" word. However, it fills my heart with joy when I read stories like this. I know there are many things that you may not be able to do with your brother but there are many things that you get to do with your brother that other siblings don't get to do. Believe it or not most siblings as they age will not have time to go out and drink a beer or eat a muffin together but Sam will always have time for you. You are very blessed to have each other.

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