Shereen and her brother.

To My Older Brother With Angelman Syndrome

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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Ashley and Amber

How My Sister With Angelman Syndrome Has Shaped My Career Path

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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Amber Rippy and her sister.

How My Sister With a Disability Made Me a Better Person

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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close up of a young girls mouth

When I Wondered What My Daughter Would Say If She Could Use Her Own Voice

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.

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Why We Threw an AAC Party for Our Daughter

Jess with her AAC device at a table
Jess with her AAC device.

Before my daughter Jess found her AAC voice (augmentative and alternative communication, a term used to describe the many different methods of communication for people who have severe speech or language problems), she was very frustrated. All we could do was guess by her gestures what she wanted. When she couldn’t tell me, then I decided for her.

This all changed when we found the app Speak for Yourself.  I never would have programed words such as “exceptional,” “remarkable,” and “annoying,” if she hadn’t told me.

Since October is AAC Awareness Month, my plan was to have a party. The last thing Jess wanted to do was endure yet another dinner party. She didn’t have to voice her displeasure; I could read her body language. As far as she is concerned, these events are all the same. Everyone talks, she listens and the topics don’t interest her.

However, this time, the tables were turned.

The goal of this gathering was to show our guests how Jess’s Talker worked. Besides understanding what it takes to use a device, my hope is they share this experience with another person (if more, they get extra credit).

We gave each couple an AAC device, loaded with the app Speak for Yourself. Jess’ whole demeanor changed. She went from slumping in her chair, to sitting bolt upright. The playing field was now leveled and she was ready to get this party started.

Typically, when people see Jess with a computer, they assume it’s “just” a game and she is overindulged. I want to change this. I want people to realize this is her voice.

After giving our guests a quick overview, I started with a simple question.

I started with Jess and asked, what did she want for dessert?

She replied, “ice cream” with “sprinkles.”

Ice cream has always been an ice breaker and this was no exception.

Everyone then asked where to find the words.

After having hands on experience with the AAC device, the group quickly realized, while this was easy to use, they had difficulty remembering word location. I assured them this improves with practice. Just like they can access a keyboard, learning the motor planning for an AAC device is no different.

The comment which got me thinking the most was, “I don’t need to use a device to speak to Jess, because I can talk to her.”

True, but people like to be spoken to in their own language, and Jess is no exception. Besides, this is one party game she liked!

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Jess at the dentist, smiling.

When a Dentist Started Singing the 'ABC's' to My 24-Year-Old Daughter

Jess at the dentist, smiling.
Jess at the dentist.

Today, my daughter Jess had a six-month dental checkup. This time, she was given a new doctor.

With my full support, the team wrapped her in Velcro bands. This has a calming effect, and prevents her from flailing her arms, which is like a knee-jerk reaction, but with arms.

The dentist then placed a mouth prop in, to prevent her from biting down. As he was inspecting each tooth, he started singing the “ABC’s.” Jess started to object and tried to move her head. He then began singing “The Wheels on the Bus.”

Before he could finish the first verse, I said: “Excuse me, but that song is not appropriate, Jess is a young adult.”

The dentist: “Uh, what should I sing? What music does she like?”

Me: “Well, what music do you listen to?”

Then a pause…

The dentist: “Oh.”

I was so annoyed at the moment, I couldn’t remember the whole conversation verbatim, but that was the gist.

From there, I (nicely) went off telling him that you can’t define a person solely on their outward appearance, and you should not assume what someone comprehends based on their diagnosis. Labels tend to share information with a broad stroke. To his credit, he had read about Angelman syndrome before her appointment, but most likely he read the Wikipedia version.

As I was “educating” the young doctor, I caught Jess’s eye and she proceeded to calm down. I hate talking about her in front of her, but this was one of those moments I couldn’t take it, and he struck a nerve. It’s not unusual for anyone to not be able to answer the dentist’s questions. Why do they always ask questions that require more than a “yes” or “no” when they are working in your mouth?

This was awkward. Jess was unable to speak for herself, (remember she was wrapped in Velcro and did not have access to her Talker) so I had to be her voice.

Just because someone isn’t able to talk, don’t assume they don’t understand what you are saying. No matter where someone falls in the spectrum of disabilities, no one likes being underestimated. Jess is no different. When someone underestimates my daughter, the most powerful thing I can do is pull them aside and set them straight. It’s important to take advantage of these teachable moments. Most likely, the person has no idea they did or said anything wrong.

If every parent spoke up, we’d be closer to reaching a point where archaic perceptions no longer dictate how our kids are treated.

Ideally, my daughter should be seen as the young woman she is, and not defined solely by her diagnosis.

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