Amber Rippy and her sister.

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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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!

Follow this journey on You Don’t Say AAC

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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.

Follow this journey on You Don’t Say AAC

When parenting, something I have feared is that caring for Laura, who has Angelman syndrome, might take time away from Charlie. I feared I would spend more time trying to help her with her needs and I wouldn’t be able to give Charlie enough time. I feared she might feel left out. It’s been a few months and I feel like I have a good handle on it. I don’t feel like Charlie is “lacking” in the mom department.

But then, people often start talking about how “everything is all about Laura…when does Charlie get any action?”

Charlie, my first born, learned to crawl at 5 months, and I was filled with so much pride and joy. I videotaped it, because it was amazing and I cherish those videos of her. Laura learning to crawl on her hands and knees will be a huge deal. She has a hard time controlling those movements. When Laura starts crawling, it’s going to be a feeling of pride and joy also, and I will video tape it then too. But I may have to keep Charlie out of the shot. You may ask why? Well that’s a two-part answer: 1. Charlie gets excited and often distracts Laura from doing what we want her to do. 2. She already learned how to crawl and this video is Laura’s. She will have worked over a year to get there. I will feel the same pride and the same joy I felt when Charlie had her own moment years ago. It doesn’t mean I don’t care for Charlie.

I’m teaching her in that moment to be proud of her sister and let her have that accomplishment.

It’s frustrating to me when people assume Charlie isn’t getting enough from me because I have to care for Laura. If you were in my home, you’d notice Charlie gets more from me because of Laura.

She gets more life lessons on grace, humility, patience and acceptance.

She gets the unconditional love of a little sister who thinks the world of her. The little sister who for a long time would only calm down when Charlie talked sweetly to her.

Yes, transitions haven’t been easy on Charlie (or any of us really), but she will be more resilient. We are fine and Charlie is doing great, even if a lot of the videos you see are of Laura’s progress. So, please keep these kind of comments to yourselves.

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The reminders are always there, sometimes when I least expect it. Today I realized my son is a few short months away from being age-eligible to work at a restaurant. I know that typically developing teenage guys learn to drive at this age. They may hang out with their friends, play sports and many dream about college and their future.

When my son was diagnosed with Angelman syndrome at 7 months old, the dreams I had imagined for him changed. In the past 15 years, I have slowly learned how to dream new dreams. I’ve also learned that it’s OK if the original dreams, marked by “typical” milestones, still make my heart ache. The ache dulls quickly, and I remember that these events don’t hurt my son.

Ann Marie Fennelly's son
Ann Marie and her son.

I never anticipated the level of joy I could feel when he met milestones that are so meaningful to him.  At 14 and a half years old, my son walked independently. Doctors told me that if he didn’t walk by age 7, he likely never would. He took his first steps on a Sunday afternoon in our home with his parents and three younger siblings cheering him on. February 22, 2014 was a day never to be forgotten.

Other unforgettable moments include him learning to use a utensil for the first time, wanting to eat and not relying on a feeding tube for sole nutrition, walking up and down bus steps, sitting in a regular chair at a desk in his classroom in high school, and all of the times when he speaks to me with his eyes.

I don’t know what his future will look like, but I’m OK with that right now. My new dreams for him continue to evolve. I no longer imagine him and a date going to his high school prom, but I also never imagined that by his sophomore year he would have already been to three proms!  Now I wonder how many dances he will attend by the time he completes high school.

When he’s happy, I’m happy. Isn’t that what all of these milestones should be about anyway?

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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