Well, today it happened. One of my worst fears realized. When Jess came home, I noticed there were no words on her Talker. I looked in the history (on her iPad) and sure enough, she did not utter a word all day.

Upon this discovery, I turned to her and said, “If you do not use your voice, then someone will talk for you. If you do not make your own choices, someone else will decide for you. What do you have to say for yourself?”

Jess dropped her head in shame. She pondered this for a few minutes, then she said, “don’t let the door hit you on the way out.”

I know Jess hasn’t been feeling well, she stayed home yesterday; she did not eat and napped on the couch. I know it’s a struggle to talk when she is on the go with a group. I know sometimes she feels when she talks people are not always listening.

However, as her mom, I will encourage her to use her voice. I don’t wan’t her to take her AAC voice for granted.

For the rest of the afternoon, Jess wouldn’t shut up and we were both happy.

I’m so glad we had that talk.

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Since my sister Ashley doesn’t communicate through spoken language, she has to show people how she feels and what she is thinking. There is an age-old saying that actions speak louder than words. Ashley’s actions don’t just speak louder; they scream louder. She speaks with hugs and snuggles to say “I love you, and you matter to me.”

As a sibling of a sister with Angelman syndrome, I have become immune to embarrassment. When you have a sibling with a disability, you often become used to the stares of strangers and the uncomfortable looks of classmates and neighbors. I am used to people staring at us when Ashley becomes excited and ready to share a hug. This can be difficult when you are a teenager, and all you want to do is be cool and fit in.  As an adult, I now understand that Ashley doesn’t want me to just fit in. She wants me to stand out because she thinks I am special.

If I’m being honest, there was a time when I would resist Ashley’s public hugging and affection. Ashley’s hugs are super size, 2.0 hugs that definitely don’t fit into most people’s social standards of public affection. Ashley also doesn’t worry about where she is at when she wants to speak with hugs. I have been hugged in a gas station restroom, and nearly snuggled on while sitting in the doctor’s office waiting room. People who have known Ashley for years still feel unsure of how to handle her level of affection.  Still, if Ashley wants to give you a hug, nothing can stop her.

As her sister, I like to think that Ashley is helping redefine social customs so more people are open to expressing outward love and compassion. I know that Ashley has helped me be more outwardly expressive toward the people I care about, and she has certainly made us a family of huggers.

I believe the world would be a better place if we all loved as freely as Ashley. Her hugs come without warning. She doesn’t save them for holidays. They aren’t reserved as a
thank you gesture. Her hugs are sincere and spontaneous. Ashley’s actions speak
louder than words. Her hugs speak hope and trust.

Although Ashley speaks no words, she knows how to say “I love you exactly as you are.” My sister speaks with her hugs so the people around her will feel joy and pass it along to the next person that they meet. I see a lesson in this. Don’t hold back. Hug someone you care about. Make their day brighter. Pass along the joy as Ashley does.

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There are so many things I would like to say to you, but you’d just think I’m being your annoying little sister. So I have decided to say a few things to strangers about what it was like growing up together, and our unbreakable bond.

My earliest memories as a kid involved us, in front of the TV, with the video camera set up so we could see ourselves, with me singing and dancing, and you laying on the couch watching me as my biggest fan.

Growing up as your younger sister was different for me than the rest of our family. They had to learn about Angelman syndrome, learn how you communicate and face the daily struggles a family goes through when finding out a child has a disability. For me though, being born three years after you, the family dynamics were already set. Everyone had their roles and I now had to find my role within the family.

In my eyes, you don’t have a disability. I never viewed you as different; you’re just my brother. As I got older, though, when bringing friends over and being out in the world, I started to notice how people would treat you differently or stare at you, and I never understood why. Until one day a friend asked me “What’s wrong with your brother?”

I, confused, answered “What do you mean?” and she said “He’s weird, he doesn’t talk, drools, flaps his arms and follows us around.” I answered “That’s just the way he is, there’s nothing wrong with him.” In that moment, my whole view of you, me, and the world completely changed. I realized that yes, you’re different, but there’s nothing wrong with you. Some people have brown hair, some drool, and some stare at people who are different because they have nothing better to do.

I then realized I had a different role to play. It had shifted from being two siblings who just happened to be best friends and attached at the hip, to me having to stick up for you, be your voice, your advocate, and protect you from those who thought you were “different.” You are a big part of who I am today, and not because you’re different, but you made me want to be your voice and the voice of people who were “different.” Because of you, I work in the field of special needs, and have always been drawn to those viewed as different — because everybody’s different.

You have always trusted me with the most difficult task, being your translator for the rest of the world. Over the years I’ve learned when you get frustrated, you cry and scream and pull my hair. When you’re bored, you scream for me at the bottom of the stairs. I somehow innately know exactly what you want and what you’re trying to say. When others who don’t “speak your language” are around, you cling to me because you get uncomfortable. And none of this has ever bothered me; it’s my duty as your sister and best friend to care for you and explain to others how you communicate.

Now I face the biggest task of all — letting you be in the world on your own, without me to translate or protect you. You now live in your own house, with two other roommates and wonderful staff. But I can’t help but feel like something’s missing in my life. I see you all the time still, but when you’re not there, there’s an emptiness. You’re not there to cling to me, pull my hair, or laugh at me for getting yelled at for something you did. You have your own life now. For so long you’ve been with me, and now I have to share you with others, and it’s time for you to show them how to “speak your language.” I feel like a parent whose child has gone off to college.

I am so proud of you for all you’ve accomplished. You’re the smartest, most loving, compassionate and understanding person I’ve ever met. You’ve taught me more about life than anyone else could ever had (sorry, everyone else). And I can’t wait to see how this next chapter of our lives will play out. I’ve always admired you, and will always be there for you. Spread your Angelman wings and fly.


Your annoying little sister

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My desk at work is piled with stacks of papers, reports, and Post-it notes with to-do reminders. When I am having a difficult day, I know taking a moment to look at the framed photograph on my desk of my sister will always put a smile on my face. I can take credit for the hours and hard work I put into my career, but it is my sister who gets equal credit for my career path. I was recently promoted to Vice President of Human Resources at a nonprofit organization that provides supports for people with developmental disabilities. As a sibling of a sister with Angelman syndrome, I am always amazed at how Ashley has influenced me.

Ashley and Amber
Ashley and Amber

It isn’t by coincidence that this is my career path; it is by true sibling love. Like many young people, I started college with zero idea of what I wanted to be when I grew up. I chose to get an education degree and spent a total of one year and one month as a high school teacher. Deciding that wasn’t the right career path for me, I had to seriously considered the question: what is important to me? In hindsight, the answer has always been right in front of me. I love supporting and advocating for my sister and for others with developmental disabilities. Without saying a word, Ashley holds my hand as together we forge my career path. Her hugs reassure me that although some days are long and difficult, the ultimate joy of my job is supporting people with disabilities.

As sisters, we are connected in special ways. Ashley has so many gifts to share with the world. I feel blessed that through my career, I can share Ashley’s gifts and support other families who have an individual with a developmental disability.

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My sister Ashley has Angelman syndrome. I tell you this first because she and her disability have become so much a part of my own identity.  Ashley is so special to me.  Ashley went to all of my gymnastics competitions when we were kids, and she stood by my side as the Maid of Honor at my wedding. Ashley will always be the special part of me that makes me different.

When you are a family with a child who has special needs, you often don’t notice the things that make you different. It’s the only life that you have ever known. I don’t mean the obvious differences like parking in reserved spaces or pushing a wheelchair through the grocery store. The differences are in the actions that become second nature to us. I walk through the mall holding hands with my 32-year-old sister. It never crosses my mind that most grown sisters don’t hold hands in public. I laugh when Ashley makes bossy noises at the waiter when she thinks they may take her dinner plate before she is finished. I forget that the teenage waiter is terrified of Ashley’s hungry glare. I laugh because this is just the life I know. This is my “normal.”

Now that my brother and I are adults, I think the question my parents can’t quite move past is: Did our children without disabilities turn out “normal?” The short answer is no. We are different. Our life and our family have always been different. We were different than our grade school classmates who didn’t know what a seizure was, and we are different than families that go skiing or hiking on vacation because wheelchair accessibility doesn’t matter. But different isn’t bad.

I can’t help but wonder who I would be if I did not have a sister with a disability. It is clear that she has made a huge impact on my life. In so many ways, she has made me a better person. Ashley loves freely, and she has brought that out in me too. I care deeply about the people in my life. I don’t hesitate to say “I love you,” and I give hugs often. On the flip side, because of Ashley, I am terrible at sharing. When I was a kid, if I received a gift that was breakable or had pieces that could be a choking hazard, I was told to hide it and keep it out of Ashley’s hands.

Ashley has made me a great judge of character. All my life I have helped Ashley assess who feels comfortable around her and respects individuals with disabilities. I have a knack for identifying people with compassion and understanding. I have always been good at recognizing other people’s character, but at times, I have been challenged by my own. As a teenager, I struggled with substances and self-esteem in an attempt to say look at me, I’m special too. Having a sister with a disability has developed so much of what is good in me, but it has also brought on extra challenges and difficulties.

Over the last couple of years, I have lovingly shared with my parents the truth that no, I did not turn out “normal.” Having a sister with a disability has made me different. I love how when we watch a movie, we all squeeze together on the same couch because Ashley is obsessed with having us all close. While I love that Ashley feels comfort in our closeness, I also know that this is not how many families sit to watch a movie. Our life is completely different, and most days it doesn’t even cross our minds.

My sister and I are best friends. She is non-verbal, but her smile shares a secret that only a sister can decode. I know she is saying “I love you” with every kiss and hug.

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When I was rooting through my desk, I stumbled upon a few pieces of Jess’s art work. I’m not sure why I kept them. Even though they had her name, it wasn’t her work. It’s bittersweet to look at them now. I’ve always wondered how the aides felt about me hanging their artwork on my fridge. Did it make them feel like they were doing their job by showing her coloring within the lines? Did they think I would not realize the only part Jess had was sitting with them? Did they think they were sparing me by not sending home a paper covered in scribble?

Art from school with Jess’s name, but the work of her aide.

There was also a time when I would speak for Jess. When people asked her questions, I felt awkward in the silence and would answer for her. Maybe I was trying to cover up that she wasn’t talking, or maybe it was because I didn’t want to hear the stream of curious, never-ending questions. At the time, I felt ashamed that I was speaking for her. It felt wrong, but I was afraid others might see her as “less.” Once people see what they perceive to be “shortcomings,” the next stage is often dismissal.

I’m afraid my speaking for Jess was more damaging than the aides completing her art. Once we start speaking for people, it can lead to talking about them in front of them. In our case, the problem at the time was Jess didn’t have a reliable way to communicate, so I spoke for her. This sometimes led to making her choices. Sure, we learned to speak “Jessie” and interpret her wants and needs, but this was often foreign to everyone outside of our inner circle. All this did was keep her world small.

The other day, there was a conversation among parents asking if they spoke for their children. They all did. I’m guilty of this, and I understand why, but I don’t believe it has to be this way. As good as I thought I was for meeting Jess’s basic needs based on her gestures, I feel I was missing the mark. I believed Jess had so much more to say. My intention is not to disrespect the families that advocate for their children this way, but to have them ask, “What if my child was able to use his/her own voice?”

If you are waiting for school to tell you when your child is ready for augmentative and alternative communication (AAC), be prepared to wait. Not all schools, not all speech language pathology programs are so forward-thinking. If you feel your child is too old, think again. Jess didn’t find the right AAC till she was 21. When Jess was younger, we used low-tech AACs, and they were not very effective for her. At the age of 5 she was deemed not a candidate for an AAC device, but when she was re-evaluated a couple of years later, the assessment came back different. Over the years, we’ve used at least a half-dozen AAC approaches, but nothing met her specific needs. The point is, we kissed a lot of frogs before finding her prince. You know, when you meet the right one, they can help you be the best person you can be, and you may be able to find “happily ever after.” After all this time, I’ve learned I may be my daughter’s advocate, but I am not her voice. She has one of her own. October is International AAC Awareness Month. Share the love!

Image via Thinkstock.

Follow this journey on You Don’t Say AAC.

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