Why We Threw an AAC Party for Our Daughter

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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!

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

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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

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One of My Daughters Has Special Needs. Please Don't Question the Attention I Give Her.

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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.

Follow this journey on Crow Fam Blog

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The Unforgettable Moments That Mark Milestones for Our Son With Angelman Syndrome

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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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I Rode the ‘Short Bus’

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One of the “jokes” I despise the most is using the phrase “riding the short bus” to call someone “stupid.”

Many people don’t realize how important this separate school bus is. It’s often used to transport people with special needs to school. The service provides safety, as some people need extra assistance getting on a bus or require close supervision. These buses often stop right at its riders’ houses and gets them directly to a school entrance. They have a much quieter environment, which many people need, and an aide is usually there to assist if needed.

Christina and Emily
Christina and Emily

My sister Emily, who has Angelman syndrome, always rode that bus, and I never used to think anything of it. 

When I started at one of the public high schools, my sister was a senior there. I walked a couple blocks in the morning to wait for my bus, no matter the weather. I live in Wisconsin, so that is no laughing matter. Every morning at 6:55, I’d climb onto the crowded old bus and truck off to school.  

Come January, we were all miserable and cold every morning, no matter how bundled up we were. That was when the driver of Emily’s school bus offered to pick me up too. The driver got the request approved. I agreed to it, excited to no longer wait out in the cold.

That was how I, a “typical” high schooler, began riding the “short bus” every morning for six months.

My sister was so excited. Throughout that year, I’d begun every day by visiting her special education classroom before class, and now we got to ride the bus together. It was a dream come true. 

It was in this way that I got a glimpse of my sister’s world. Only a few kids rode that bus, and it was usually quiet. Sometimes one boy with autism would excitedly lecture me about the Major League Baseball statistics he had memorized. The aide and the bus driver and I would chat. My sister would cuddle up next to me.

I loved visiting my sister’s classroom. It was her chaotic, loud, fun world. There were kids of varying abilities. It was there that I saw amazing friendships, both patience and frustration, unconditional love and more. To some, this environment would be overwhelming. To me, it was home.  

I switched to a smaller high school the next year, which was better socially for me, and Emily graduated that June and moved onto the school district’s transitional program. My time visiting her classroom was over, but I still look fondly back on it, even seven years later. I was able to observe other special education classrooms this past year, and I hadn’t realized how much I missed interacting with these exceptional students. 

The bus that takes people with special needs to school should never be made into a joke. My sister rode the “short bus” for her entire academic career. And, for six months in 2009, I had the honor of joining her.

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Doctors Commented on His Hair and Eye Color. Then We Found Out Why.

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The story I thought I was in was rubbed out and is being written all over again. I wrote the story while I was pregnant with Rufus and had pretty much got the final draft of the final chapter finished before I’d even given birth. I’d pictured his first steps, first word, first sentence, which school he and his sister would go to, how they’d play together, how she’d teach him things, how they’d argue, the holidays we’d have together, etc.

Of course, everyone who looked at my pregnant belly (including myself) thought there was a completely healthy baby inside. Why would I believe anything different? I can still remember being told at the 20-week scan that we had a “textbook baby.” What is that, anyway? Perfect, of course. Everything as it should be, where it should be, complete and perfect.

Except it wasn’t. It isn’t. Something is missing inside our beautiful baby boy’s body.

He was born 10 days early, and his birth was quick and pretty straightforward. I was in and out of hospital within half a day and back home. He gained weight well even though he was a fairly sickly baby and, amazingly, never seemed to cry for milk. He never seemed to cry for much at all, come to think of it; he was just as happy playing on the floor as he was in someone’s arms.

Around the eight-month mark, there was this tiny, nagging feeling that something just wasn’t right. Rufus was an incredibly happy baby, but he just didn’t seem to do much. If he was put down on his back, he stayed on his back. If he was put on his tummy, he face-planted the carpet, cried and stayed on his tummy. If he was put in a sitting position, he stayed in a sitting position until he toppled backward. He just didn’t seem to want to get anywhere or do anything. Whenever I mentioned it to people, I was told, “They all get there in their own time,” “Every baby is different,” “Boys are lazy” and “Enjoy your maternity leave and don’t spend it worrying.” The nine-month progress check sheet came in the mail, and my heart sank. He could only just do the most basic things a 9-month-old was expected to do. The majority of the check sheet just didn’t apply to him. Something wasn’t right.

The 9-month check came and went, and letters began to arrive in the mail. First an appointment to see an orthoptist and second to see a pediatrician. Things were beginning to get medical now. Maybe Rufus wasn’t playing with toys and eating independently because there was a problem with his vision. Maybe if we got his eyes fixed, then everything would fall into place. Hopefully the pediatrician will tell us he’s fine, just a bit behind and will catch up.

But that’s not what the pediatrician said. The pediatrician said words like “developmental delay,” “diagnosis,” “disorder,” “syndrome” and “blood tests.” The pediatrician said that his squint might have something to do with his lack of hand-eye coordination, but it didn’t explain why our boy was still and silent.

Both the orthoptist and pediatrician mentioned how happy, blond and blue-eyed he was. Why would medical people talk about his appearance and demeanor? We leaned on Google for answers, and it brought us to an answer that changed our lives instantly. We came across a website that described Rufus perfectly.

Blond hair, blue eyes, fair skin, squinting, flat back of head, jerky movements, developmental delay, no babbling, feeding problems, sleep problems… the list went on and we discovered that this list came under a heading of a rare syndrome. We then began looking at photographs of children who shared this syndrome and felt as though we were looking at Rufus’s siblings.

We watched videos of these children on YouTube, and our hearts sank as we realized the future we were looking at for Rufus. We began to grieve for the boy we thought we had. We knew his future would be a whole lot more complex and difficult than we had ever imagined. The more we read and watched, the more we were convinced. The blood tests came and went and the pediatrician arrived with the results.

The pediatrician sent off a small sample of our boy’s blood to be looked at by geneticists and they found that something indeed was missing from inside his body — Rufus is missing a small part of the 15th chromosome. It’s the maternal copy that isn’t there. It got deleted when he was being made. We don’t know why. His brain can’t access the paternal copy, either. So there’s vital information that our boy doesn’t have. It’s so rare that only occurs in approximately 1 in 15,000 live births, but it has a name: Angelman syndrome.

baby kissing laughing mothers cheek

So that’s the story so far. Never in a million years would I have imagined that story when I thought of myself as a mom, when I became a mom to my daughter, Betsy, and when I was pregnant with Rufus.

The story I had imagined was actually a pretty dull one. Easier, but maybe not as colorful. You see, I think the new story is going to be a lot better.

The pages might be a bit damp with tear drops, but they will be full of little victories, milestones met at the most unexpected times, tales of friendships made with people we would never dream of meeting, cuddles and sloppy kisses from the most loving boy in the whole world, an unbreakable bond with the most protective sister, blessings beyond our wildest dreams and yes, all of the things I had dreamed of before.

There will be a first word.

There will be first steps.

We will wait and we will celebrate.

And we will love him.

A version of this post originally appeared on Lucy Hasler’s site.

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