Original article can be found here.
BY PSN TEAM
PSN: Please give us a brief snapshot about your family and your brother (now).
PAIGE T.: Currently, Sammy lives at home with our mom and our younger brother, Jack, who is 16. During the week, Sammy goes to a school for individuals with Autism called the Vista School in Hershey, PA. There, he works one on one in a classroom with 5-7 other students. He attends year-round and at Vista he gets OT, PT, Speech, ABA, etc. My mom is his sole caregiver and has to build her schedule around his. She needs to be present to get him on and off the bus, take him to appointments, and whenever he is randomly off school. Sammy also loves to hang out with his brother, Jack, and watch him play video games. I, myself (Paige), am currently away at school but I come home many weekends to hang out with Sammy and my family. I am going to graduate with a Bachelor’s Degree in Psychology in May, 2015. I then go to Johns Hopkins to get my Master’s in Education for autism and other pervasive disorders.
PSN: Tell us a little bit more about your brother’s diagnosis, personality etc…
PAIGE T.: Sammy, 17, has been diagnosed with Autism. He goes to an Autism specified school. He is non-verbal and considered very low functioning. He uses ProLoQuo2Go to communicate and is only able to tell us “I want ____.” Other than that, he is unable to participate in conversation. Sammy also isn’t toilet trained so he has many “accidents” each day. He might soak the bed, carpet, or couch which leads to a 3-day process for my mom to “air-out”, wash, and dry everything. To say the least, we have a lot of sheets, and even with as many sheets as we do have – there isn’t enough to keep up with Sammy’s “pee routine.” Other than that, Sammy has a beautiful smile. He is constantly listening to music – the more explicit, the better for him. He loves chips (he eats like a goat), but come between Sammy and his chips, and you might as well bite your own hand off. If he isn’t watching Law & Order SVU, golf, or something else with his family, he is chilling out in his room snuggled in a ton of blankets and pillows with his music. He has a crazy sense of humor and his laugh is contagious.
PSN: Share with us something YOU, personally, had to overcome by being a sister to a brother with special needs.
PAIGE T.: Something that I have always struggled with was letting myself hurt or feel angry about something. This is because as Sammy’s sister, I see him struggle with some of the simplest tasks that people take for granted every day. With that being said, he always wakes up with a smile on his face and works harder than anyone else I know. When I am feeling disappointed or annoyed, I often find myself thinking I am “out of line” because Sammy has it way harder – he knows what a real struggle is.
PSN: When you were growing up, did you ever feel guilty if you were not well behaved (or didn’t get good grades, etc…)? Did you ever feel guilty if you did not use your abilities to the fullest because your brother wasn’t able to? (some people refer to this in a similar way as “survivors guilt”).
PAIGE T.: I was an only child for 6 years until Sammy came along. To be completely honest, I was definitely jealous and angry with him for taking the attention. Not just the attention that any sibling feels when their first younger brother or sister comes along, but an attention that made me feel like I didn’t want him around. Which, of course, isn’t true anymore, he is the light of my life, my pure inspiration and I couldn’t imagine my life without him. However, as I’ve gotten older and began writing my blog, I have realized how much I appreciate some of the things I go through. Things like heartbreak, prom, getting a job, leaving a job, going out to dinner with a friend, etc… Those things mean so much more to me because Sammy hasn’t (and may never) experienced it. When I am super upset about something, I constantly remind myself that Sammy may not even have the chance to experience this kind of thing and then I feel bad for being so weak. Whether it’s as “little” as going to class or as “big” as feeling sad because of a breakup, it kills me to know that Sammy may never know the feeling of love, graduation, depression, etc. That’s what life is, is it really life if you can’t experience all of it?
PSN: Were any of your friends not accepting of your brother or treated you differently because you had a special needs brother? If so, how did you handle it?
PAIGE T.: Well, I was always very upfront about my brother. Those people who seemed uncomfortable about it never seemed to make it to my home or became a big part of my life. I have always been very sensitive to the word, “retard,” and when it is used, especially in high school, I made it clear that it wasn’t the right word to use and it was hurtful. I’ll admit though, it definitely took awhile to build up the courage to stand up to my peers about this topic. I became a part of the “Spread the Word to End the Word” Campaign and spoke to schools in my home district, as well as classes at my university about the word and its hurtful affects. I also helped run the campaign at my high school and college. To this day, everyone that I let into my private life goes through the “Sammy screening.” My life is all about Sammy, my friends have to accept him and respect our feelings.
PSN: What is one thing your brother does that makes you laugh or makes you proudest of his uniqueness?
PAIGE T.: He is super stubborn and clever. I love when my mom is mad at Jack or me and when she is giving us “a talking to,” Sammy stands in the background and giggles at us. I’d like to think that he thinks it’s hilarious that we’re getting in trouble and he isn’t. He also does this thing where he refuses to close the door to the outside, and when one of us tells him to shut it, he goes and stands as close as he can to door and laughs – but never closes it.
PSN: What is an activity that you and your brother like to do together?
PAIGE T.: We love to listen to music together and just lay around. We also love watching Law & Order SVU or eating Mac & Cheese.
PSN: Do you think about the future for your brother; are you concerned how it may impact your life?
PAIGE T.: I always have-it is something I always include in my future plans and it is something that I am constantly worrying about. For individuals like Sammy, there is little for him after 21. He isn’t done learning at 21. He isn’t anywhere near everything he can accomplish at 21, but that is when education ends for him. And even after that, there are jobs and specialized homes offered but not for individuals as low functioning as Sammy. Sammy will forever live with my mom until it is time that I take him in. When that happens, I hope that I can give him the “away from home / college” experience as much as possible. I have planned my life around taking Sammy in. Eventually, my future family will have to be ready and accepting of that possibility. This is why I have dedicated my life and career to creating a program for individuals, like Sammy, with Autism after the age of 21.
PSN: Is there any special advice or tips you would like to share with other siblings?
PAIGE T.: Don’t be afraid to be mad, or jealous, or sad. Your sibling with special needs is a big part of your life now and it’s going to be a huge part later. But you are still important. Even though you may feel bad for asking for help, or wanting attention since you are “typically” developing, doesn’t mean you don’t deserve it. I can promise you that your sibling is going to open your eyes to a million new things that you will never imagine and you are lucky to have them in your life. You were given this because you are more than strong enough to handle it and can help change the world with your experiences.
PSN: Are there any special resources you have found that have helped you on your journey? (local or web)
PAIGE T.: I am part of an organization called PALS Programs. PALS is a program for individuals with Down Syndrome and I have met many individuals with siblings who have disabilities, or just people willing to help the special needs communities. I have met some of my closest friends through this program and having them in my life has provided an outlet for me to “vent” to people who genuinely understood what I was going through, or genuinely wanted to help.
You can read more from Paige by visiting her blog at www.sammyssister.weebly.com
PSN: Paige, thank you so much for sharing your experiences with us and for inspiring us with your commitment, love, dedication and career goals.