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July 20, 2020
Throughout life I have always been asked “what’s wrong with your sister” to which I have now mastered answering, she is just different than you and me.Living with a special needs sibling is tough, whether it’s downs, autism, WAGRS, and everything else in between. The toll it takes on a sibling is different than the toll it takes on a parent. As a parent, you have to attend the doctor’s appointments with your child, hear the good news and the bad news from tests that have been conducted and much more. Siblings don’t deal with all the “paperwork” or the “fine details” of living with a person with a disability. As a sibling, you play a huge part in the disabled child’s life life. You take care of them when your parents are out for the night, you take them on outings (if and when you can drive), and you basically become their best friend in the whole world.
People are always amazed at how I handle having an older sister with a disability. The same people wonder how I handle being the middle child of three girls with no one to look to for the teenage advice that only an older sister can give. To be 100% honest, I haven’t known anything different so how am I to compare to what a “normal middle child’s role” in life would be. What people really don’t know is that I really do look up to Ashley in so many ways that one cannot even begin to describe. She is my hero, one of my best friends, and the person who is always able to put a smile on my face. She has also taught me some very important life lessons without knowing. She has taught me to love unconditionally, live life to the fullest, and to enjoy the little things in life, even if it is just a piece of paper and a pen. Yes, I am the first one of the three to learn to drive, get a car and go away to college but I couldn’t imagine my life to be any different. I have come to terms that this is how my life was meant to be.
Going around Ashley’s schedule can be difficult at times. Routine is key and if you fluctuate the routine in any way, you wont hear the end of it. Once she has her heart set on doing something, it will happen. If Ashley overhears that you are going to Disneyland with a school trip, she has to attend if she sets her mind to it (this recently happened in January of 2012). Even though I have “tricked” her into doing things she didn’t want to do, once her mind is set, there is no changing. This can be difficult when you are out and about and you have to find a place to eat. Ashley really isn’t too adventurous with her palette so its sometimes hard to find places that will please the whole group going along with what Ashley wants. Even though Ashley is a persistent girl when it comes to certain things, I usually can somehow get her to go along with my plans by taking her to the special “coffee shop” (aka Starbucks) or even promising to make her popcorn as an afternoon snack. She is pretty easy to please to say the least.
In regards to older siblings, I really couldn’t have asked for a better one. She has been at my side throughout my 21 years of life and has gone through every major milestone with me. Ashley was there when I took my first college campus tour, graduated high school, moved into my dorm my sophomore year, and insisting on helping me move into my first apartment this summer. Even though she isn’t much help at times, the fact that she is always there to lend a helping hand is a great comfort to me.
Special needs children touch your lives in a variety of ways and it’s even more special when they are your sibling.
March 7, 2021
This is Selma. She is 1 year and 8 months old and lives in Norway with her mom, Andrea, and her dad, Simen. Selma is a very active and happy girl full of joy for life who loves to be with oth…
February 19, 2021
This is George. He is 6 years old and lives in the south East of England with his brothers Zachary (5) and Jacob (8). George is such a light in our lives. He loves nothing more than listening…
October 6, 2020
Mia lives in the USA and is 2 and a half years old. She has two rare syndromes called WAGR-O and Potocki-Shaffer. Mia was diagnosed blind at 6 months old and at 10 months they gave us genetic…