National Siblings Day Celebration
In honor of National Siblings Day Celebration--April 10th--we're featuring profiles of brothers and sisters and their siblings who have special needs. Please see below!
April 10th is National Siblings Day. No, Hallmark has not proclaimed the day, but one day they might. The sibling relationship is deeply significant and is the longest-lasting bond we will likely ever have.
Sibling relationships can be uniquely "special" when one sibling has a disability or chronic health condition. To honor the sibling relationship—as well as the many contributions made by typically-developing brothers and sisters—the Sibling Support Project is commemorating National Siblings Day with the following profiles of sibs and their brothers and sisters who have special needs. Thanks for stopping by! (And don't forget our National Siblings Day Appeal!!)
Alex and Jacob Stewart
My name is Alex Stewart and my younger brother Jacob has autism. My brother and I have a connection that he has with no one else. He looks up to me and tries to do everything I do. Some people don’t think he can do everything that I can, but I’ve never given up on him. I know that he can do anything in the world no matter what. He has already surpassed everyone’s expectations. He says that I am his hero, guardian, teacher, and best friend. Whenever he has problems he knows I will always be there to help sort them out. I am one of the luckiest people in the world to have a brother like Jacob. I love him so much. He is the kindest person I’ve ever met and I hope he never changes.
Picture caption: Jacob (12) and Alex(14) at the Autism Move-a-Thon of Orange County, NY, 10/06
Erin and Kevin Bleha
My younger brother Kevin has autism. He and I have a great relationship. I am very protective over him and always want him to be happy. He recently started learning sign language at school, so I love coming home from college and talking to him in sign. My mom doesn't like it because she doesn't know what we're saying! When I'm at school, we sometimes talk on the phone and he tells me about his day. I'll admit, it's not always easy being Kevin's sister. I worry about him a lot and we have our occasional fights, but in the end I am always there for him when he needs it and I know that I can always count on him to cheer me up.
Picture caption: Erin and Kevin at the 2006 Answers for Autism Walk in Indianapolis, IN.
Laura Trout and Caroline Larson
My sister and I are 12 years apart, so we don’t like the same stuff. She likes the Backstreet Boys and Nsync while I prefer Akon and Ciara. I never really liked the Power Rangers or Teenage Mutant Ninja Turtles and she doesn’t care for SpongeBob and Fairly Odd Parents. We do like some of the same things though, like Disney and the beach. When we share a common interest, we can talk forever about it. There are good times when we get along long enough to watch a movie together in her room, and there are very bad times when we fight so much that our mom makes us go to our rooms. Sometimes I feel weighed down by her, like when we go on hikes. We always have to take the easiest trail and even then it takes about five times longer. I hate it when we go shopping and our mom tells us to go somewhere by ourselves. My sister never wants to go my favorite stores and I can’t stand hers. Occasionally we have good moments, like at the beach when we sit in the raft and ride the waves. She has embarrassed me many times. When we go to a fancy restaurant, she has to be reminded about her manners and then she throws temper tantrums. The one thing I really hate, though, is sitting in waiting rooms for hours. Usually I get taken out of school to go along to her appointments. Then, once I get there, the room is too small for four people. So guess who gets kicked out? Once I was taken out of school to go to a nephrology appointment and missed my math class. I still had to do the homework, and I was really stuck. Some guy in the waiting room came over and helped me, and I ended up understanding everything better than everybody in my class. Overall, it’s fairly annoying, but the good times and special moments are more than reward enough.
Picture caption: Caroline (25) and Laura (13) amid the famous bluebonnets of Texas
Patrick and Logan Bassham
My name is Patrick Bassham and my little brother’s name is Logan. He has Asperger’s Syndrome. I get along with him very well but he sometimes gets on my nerves. I like it when he tells some of his jokes but some are corny. I sometimes want him to be normal but he’s usually cool. We like to play together and wrestle on the trampoline. I like to give him new figures for his toy castle. He usually talks to me very clearly but sometimes I don’t understand him. I like to stick my hand up his shirt and call him a puppet. I like to read to him every night. I love my brother Logan.
Photo Caption: Patrick (9) and Logan (6) dressed up as The Mario Brothers (Mario & Luigi) in October 2006.
Sophia and Leo Wong
Growing up, I spent a lot of time alone with my brother Leo, who was born with Down syndrome in Edmonton, Canada. We were playmates and best friends. I was also his teacher and his babysitter. I didn’t spend much time playing with other children because I had to look after Leo every day after school and during the summer holidays. This is a photo of us together last summer while Leo was recovering from his hip replacement surgery. While I often set high standards for myself and feel disappointed when I don't meet my goals, Leo always accepts me as his sister and is always proud of me no matter how I'm doing at work. I also admire his creative energy: he is an accomplished artist who produces colorful paintings. I enjoy watching him paint because I can see his imagination at work. First he sketches in pencil, then he gives the painting a title, signs it including the date, and then he fills in the lines with beautiful colours. When he decides that a painting is done, he puts it aside to dry; he never goes back to edit or revise his work. I often wish I could feel a similar confidence in my own creative visions.
Photo Caption: Leo (34) and Sophia (35) at the mall in Edmonton, Canada, July 2006
Allan and Fred Goldstein
My younger brother Fred was put into the Willowbrook State School for the Mentally Retarded on his 4th birthday and stayed until its forced shutdown 16 years later. He then moved from one mini-institution to another until arriving in a group home near our parents. Resentment of weekly visits kept me away from him once I was independent of the family. He was someone I heard about and saw at family gatherings. Yet upon the death of our parents, at the age of fifty, I became his guardian. And although his sense of humor and great capacity for compassion have been enhanced by the unveiling of a neglected intellect, I have benefited more. I’ve learned how to be a brother.
Picture caption: Allan and Fred, Guest Speakers at the 2006 Best Buddies International Leadership Conference at Indiana University, Bloomington
Alexis and Maurice Booker
My name is Alexis Booker and I am 10 years old. This is my 6 year old brother Maurice who has autism. I love my brother very much even though sometimes he gets on my nerves because he likes to take all my stuff. We always have a good time together, but I always wish he could talk better so that he can talk more to me. He can talk, but not like a regular 6 year old should. This is us in Disney World in 2005, when our parents took us and we had a great time being there. My brother was so excited because he got to meet his favorite person in the world Buzz Light Year. Everyday when I go to bed at night I pray to God that he help my brother get better. It seems to be working because he has begun to talk a lot more since we first found out he had Autism when he was 2 1/2.
It may be different and sometimes difficult to have a brother like Maurice, but I wouldn't trade him for the world because I really love him.
Maryjane Westra and Martha
I am Maryjane Westra and this is my sister, Martha. I have always felt more like a parent to her than a sister. Martha was born when I was nine. She was my baby and, at five pounds, fit perfectly in my nine-year old arms. Martha seemed to be developing normally until age three when her language skills seemed arrested at a two year old level. Autism was just being identified in 1965 and it was thought to be the result of poor parenting. I was a teen at the time and I thought, if autism is caused by poor parenting, why don't all the children in the family have autism? My parents had difficulty with Martha's erratic behaviors and violent tantrums. She was placed in an institution, euphemistically called a children' home, at the age of seven. After several institutions and foster homes, I took her to live with my young family when she was 19. Today she is 44 and still lives with us. Martha and I have a special relationship. She is calm and obedient for me, most of the time. She likes routine and familiarity. She has a job in a sheltered workshop and helps at home with the dishes and housework.
Some people call me a saint for taking care of my sister for so many years. But I think that we take care of each other. She helps me raise my family and I give her a home and protection. She doesn't show love in a normal way. She doesn't talk much and she detests hugs and eye contact. But I know she is happy and living the fullest life she is capable of. I am happy having her near me and I have no plans, in the near future anyway, of placing her away from our home.
Reilly, Corliss, Lanie, and Tucker White
This picture was taken on the beach in Sanibel, Florida with our brother Tucker and it sums up his personality to a "T.” He is happy and cheerful, and even though he only has a few words, we know he loves us. Tucker has Down syndrome and he has taught us that life is not always easy, but the rewards are great.
Reilly (age 12): Having Tucker as a brother has its ups and "downs." Because of him, I have a lot more patience. It is sometimes frustrating, even though I always love him.
Corliss (age 8): I have different ups and downs. The upside is watching him learn better words each and every day. I hope to hear him say "Cor" some day. The downside is that I get really frustrated because he always wants to watch Barney.
Lanie (age 3): I love to kiss and hug him.
Pictured from left to right: Tucker, Corliss, Lanie, and Reilly White
Todd and Zach Rossetti
Like me, my brother Todd is a huge Boston Red Sox fan. He also wants to be a poet, loves chocolate cake and vanilla ice cream, has cerebral palsy, gets around in a wheelchair, needs support with most daily tasks, does not speak words, and is smarter than most people think. Here's just one example: a number of years ago while Nomar Garciaparra was still playing for the Red Sox, Todd was watching the first of a four-game home series in his room. Our mother heard him yelling and laughing excitedly, so she walked into the room. He looked at her, then at the television, then at her and back to the television again. She figured out that he was trying to get her to see who was batting. It was Nomar. She asked, “Is Nomar your favorite player?” He almost leapt out of his wheelchair, laughing in excitement and affirmation. The following evening, he made similar noises during the game. When our mother walked into the room, Nomar was up to bat once again. She wiped away tears when she left his room. The third night, the same thing. And on the fourth night, Todd called out to our mother in a similar fashion. But when she entered his room, Nomar was not batting. It was another Red Sox player. Just as she was about to inquire about it, the batter hit a single, and our mother heard from the television, “Now batting, number five, Nomar Garciaparra.” Todd erupted into victorious laughter as she said, “You son of a gun. You got me in here early to see his whole at-bat.” Picture caption: Todd and Zach Rossetti, Christmas 2005.
Victoria and Joseph Liska
Somehow even though my brother is the baby of the family, I don't have a gray hair on my head, and he is totally grey. After our parents died, he moved into a group home and grew a beard, I guess most guys grow some facial hair when they achieve their personal independence. He keeps me busy, as his sister and guardian.
Josh and John Van Hine
My older brother John is not only a brother to me; he is also a best friend. Never have I met someone with more compassion and care for everyone around him, even strangers. Growing up, we did everything together. Now that I am away at college, we don't get to spend as much time together as I would like, but the time that we do spend together is never taken for granted and could not be better.
John enjoys anything that has to do with comics and superheroes, and absolutely loves VH1 specials like I love the 80's. I think it's because he loves to look back on the "good old days" so much. Although I am not too interested in these things, I do enjoy listening to his stories and the many facts that go with them, which--trust me--can go on for hours. He also enjoys his newfound hobby of painting. Known as “the walking road map” to many and “Bro” to me, John has many talents that I could not imagine possessing. I could not be more proud of everything he does. John is an inspiration to me, and I use the things that he does to try to sculpt the way that I treat others and live my life.
Picture caption: This is me and my Bro on a beach in Washington during our Pacific Northwest vacation in 2003.
Kathleen Houghton and Mary
My sister Mary is 42 years old and has Cerebral Palsy, caused by a lack of oxygen at birth. Although she understands everything going on around her, she is non-verbal and communicates by nodding yes or no, facial expressions, and sometimes by giving us a swift kick. She just got a new computer system that will help her communicate with more people. Mary has a great sense of humor, and truly enjoys life. She loves spending time with her 6 sisters, 1 brother & 12 nieces and nephews. Mary has a nice circle of friends through her programs, family, and community activities.
Being her sister and co-guardian has all kinds of ups and downs - being in touch with other siblings is valuable because they understand this relationship in a way that most people don't. It's always a challenge, but a true joy to find activities, equipment and resources that work for Mary. Happy Siblings Day! Picture caption: Surprise Hawaiian Birthday Party! Back Row: Nieces Christine, Emily. Siblings Sheila, Kathleen, Brenda Front Row: Nephew Charlie, MARY, and Nephew Patrick
Carrie Campassi and Richie Cheesman
My name is Carrie Campassi and this is my younger brother Richie Cheesman. He is 23 years old. We also have 2 other siblings Jim and Shelly. Richie was born premature, weighing only 4 pounds. He was diagnosed at birth with a chronic lung disease, BPD (bronchopulmonary dysplasia) and later with cerebral palsy. I think Richie is awesome! We have a great relationship. Although Richie cannot speak, we can communicate like no one else. I can always feel how he is doing. We are super close and I couldn't imagine my life with out him. He is happy 95% of the time and shines his light everywhere he goes. He is full of love! We try to hang out whenever we can. I recently started taking him with me to Dave Matthews concerts and I have more fun with him than anyone else! He loves to "dance" to the music.
Now, it has not always been flowers and sunshine. I really resented him during my adolescent years for "hogging" all of the attention. It seemed like Richie came along and I no longer existed. I tried to seek attention in ways that were not very positive and quite self-destructive. I tried my hardest to not take it out on Richie because I know it wasn't his fault, it is just life. Being the older sister, I spent a lot of my youth taking care of him. But, as I stated before, I am so thankful for Richie and the things that I have learned from him. I would not be who I am today if it wasn't for my sweet brother.
Christina Rogers and Kevin Payne
Birthdays are huge in our family. No matter what your age, you get a party! This is a picture of my brother and me enjoying my birthday celebration. Kevin is two years younger than me, and has been a big part of my life as long as I can remember. Kevin resides in a group home in a small community setting. I share co-guardianship of Kevin with my parents. My parents or I pick Kevin up on weekends and for all family outings and events. We plan annual parties and events for staff and group home residents in our homes and at community parks or restaurants. At Christmas, we have a huge party complete with Santa, and we have fun hayrides in the fall. Life is forever changing. My parents recently retired and the guardianship role for me is expanding. Kevin is a big part of my life. My children and my husband are huge supports. Our picture celebrates the spirit that everyone can have fun--and we do!
Jamie and Gary Derzawiec
My brother Gary is two years younger than I am, so we really grew up together and I have shared more of my life with him than with anyone else. We’ve seen each other through a lot of good and bad times. Like any sibling relationship, ours has had its ups and downs – especially as teenagers – but it’s always been very special and unique. Now I am away at college, but I always look forward to coming home because it means that he and I can watch our favorite movies, play our favorite games, go for walks, and do other things that only he and I share. I appreciate that a lot more now that I don’t see him every day. Gary loves Pokemon, the Yankees, has a great sense of humor, and is a wonderful brother to my sister and me. Our lives would be very different without him, and we are very lucky that he is a part of them!
Picture caption: Gary and Jamie at Baxter State Park, Maine, Summer 2005
Amanda and Travis Modery
Ever since my brother moved into a group home, I’ve missed the sounds of singing and the music that used to come from his room. A big Disney and “Wizard of Oz” fan, my older brother Travis was always singing or putting on one-man plays of his favorite movies. Travis is three years older than me and has Down syndrome. He is also my one and only sibling.
While I do miss having him at home, he lives close by and I enjoy the updates he gives me on his four housemates and their goings-on. My brother works two part-time jobs and is a social butterfly who has activities just about every day, but he still makes time to come visit at least once a week :) There are definitely some things I don’t miss, such as the bickering and his obstinacy. I do enjoy the peace and quiet that we now have around the house and I can’t deny that I enjoy the extra time that I have now that he doesn’t ask me to play Nintendo with him every afternoon :) But, through the good and the bad, my brother and I have had a great relationship and that is something I hope we’ll always share.
Photo caption: Amanda and Travis at the Woodland Park Zoo in Seattle, 2006.
Anne, Barbara and John Guthrie
Anne: Our brother John, two years older than I, was developmentally disabled. My parents were very active in parent organizations to help ensure that he had schooling in the 50’s as well as other opportunities throughout his life. John died suddenly at age 47 in 1995, but had by then done many things: he was in the same bowling league and church group for over 30 years, had life-long friends, a passion for model railroads, Pepsi and fast-food burgers. He also had become the member of a second family at his group home of 13 years just blocks from our family home.
I have many fond memories of his unique character….a perspective that grew as I got older. As a child and teen I felt encumbered by his public behavior--which was at times odd and not lovely. I know that as a toddler I loved playing with my big brother and he managed to teach me many things. I also was at times overshadowed by his needs, probably becoming an overly mature and independent child while my parents busily sought out diagnosis then treatment and services. Each of my other sibs is special to me also--and each would have their own tale to tell of life with John. He is missed, but left us many memories we often share.
Barbara: Johnny’s rich fantasy life --to this day—is still one of the greatest impacts on my life. For Johnny, dreams, fantasies, and a surreal world of creatures came to life. His life gave me permission to talk my cats, pat my bicycle, and sing to the plants and trees. Because he was different, he made it OK for me to be different too- the greatest gift anyone could give someone. Thank you, Johnny, for being the person you were and for allowing me to play a role in the life of Mr. Banana, Mr. Celery and the various dolls that were part of your fantasy world.
Photo caption: Caption: The 6 Guthrie siblings and their mom on one of the many family camping trips somewhere in the Midwest in the ‘60s. L-R Paddy, Jim, Barbara, John, Anne, Mom and Tom.
Jaqui and Ed Skelly
I had always wanted a sibling, but after 12 years of being an only child I had given up. That was when my parents told me they were having a baby. We were all extremely excited and my parents thought that the timing ended up being perfect as I was now a “built-in-babysitter.” However, we soon started noticing that Ed wasn’t developing quite the way he should. He was diagnosed with Pelizaeus-Merzbacher Disorder, which for him meant he would end up requiring a wheelchair, need a G-tube for eating, a trach tube which took away his ability to talk, and it would become very hard for him to move his limbs & muscles.
However, as he got older, Ed had no problem being like a “typical” little brother. He communicated to us by blinking and he was quite good at not blinking for me until I got so frustrated that I was complaining to mom – just like typical siblings. Ed has pushed me through the years to do things I never thought possible. Without him, I would not have become the strong, independent woman I am. Of course there were hard spots, like when I was a teenager and wanted nothing to do with family; however I think that only made us closer later. He was always ready to read books with me, play video games, or dance to music. Unfortunately, Ed passed away due to kidney complications on 3/21/07, but I could never have asked for a more perfect brother.
Caption: Ed Skelly (13), sister Jacqui Skelly (25), and her fiancée Garry Zurawski visiting with an alien at Disney World, October 2006.
Luke (11) and Adam (15) Micca Van Hine
Our oldest brother John has 18q deletion and is 28. We adopted him when he was 5 years old. John loves the color green, his Senegal parrot Balou, his dogs Maxx and Brownie, and hanging out with the family. John loves to travel and knows his way around the world. We think John is kind, outgoing, and always has a positive attitude. This fall John was also diagnosed with mania and bipolar disorder. John is improving every day since getting new medication. He still gets upset and frustrated easily. We try to help him stay calm and enjoy our time together. John works hard, volunteers in the community, and makes us very proud. We love John very much and we are glad he became part of our family.
Caption: Hanging out in our yard in Greensboro NC. From left-Luke, Josh, John and Adam