Angelman Syndrome

First date

February 16, 2016 by Mary Leave a Comment

Her story…

If we were going to get to the restaurant on time, she’d have to get dressed in a hurry. What to wear? She chose a dress, but it was too fancy. Jess settled on a pretty new top and her nicest jeans. Before leaving the house, she put on her lip gloss, her favorite necklace, and off she went.

His story…

He was nervous to meet her. When she walked in, he just stared and turned red. His expression said it all.

Her story…

I’m not sure if she was excited to meet another SFY user, or if it was because she was meeting a boy. When he spoke, she gave him her full attention.

His story…

He talked to her using his AAC device and they giggled a lot. They found shared interests. He liked the fact she likes movies. He was a bit shy, but he smiled a lot. This evening was going good and he knew it.

At the time we arranged to meet for dinner, it never occurred to me that this would end up being a date. We mom’s chaperoned and our matchmaking SLP was with us too. Typically, dinner lasts about an hour, but this went on for nearly two before calling it a night.

She has Angelman’s Syndrome, he is on the autistic spectrum. Where the world may see them as “different”, they saw each other as a person of interest and we saw young adults who were enjoying a night out.

When the evening came to a close, we all knew that we’d be meeting again.

They were happy to have their picture taken. He put his arms around her and they both beamed.

Jess has his name programmed into her talker. She’s already asked about him. And it begins…

Grateful

December 1, 2015 by Mary Leave a Comment

This morning, after using her talker to tell me what she wanted for breakfast, Jess gave me a unexpected body hug. I think she was buttering me up because she then asked for hot chocolate. Being that it was dark, cold and rainy at the time, the request for a hot beverage reminded me of The Big Bang Theory, so I complied. [Read more…] about Grateful

Evenings in contrast

November 22, 2015 by Mary Leave a Comment

Over Friday morning breakfast, Jess asked to have pizza for dinner. Sure. No problem. Then she said she wanted to go out. Typically, we order in. I’m not a fan of crowded, noisy pizzerias, nor their atmosphere, so opted for Plan B, to phone a friend.

This was two different conversations. The second one is when she is responding to me when I repeated the question

Due to schedules, we ended up at Heaven’s* house. Thank goodness this is a good friend because I didn’t feel awkward for pretty much inviting ourselves. They even had wine!

We’ve shared many meals with Heaven. I love going to their home because Jess doesn’t hesitate to use her talker. Of course, Jess doesn’t hold back when it comes to dessert… and don’t forget the extra whipped cream she says. Heaven then showed Jess that their dog Reese does shots! Jess immediately said “read, had, whipped cream”. His name wasn’t programmed into her talker, so she made an approximation.

It’s so fascinating to witness language morphing. It’s amazing what you hear when you listen. She is even mastering the superlative!

After our meal, we women left the table to watch a movie while the men talked. As the evening came to a close, we made our way home, all feeling rather content.

The following evening we had company. Let’s just say, things didn’t go as smoothly. An authoritative tone was used and the wheels came off. By the time we sat for dinner, Jess was not able to contain herself and showed her displeasure with our guest. Regardless of how she felt, she was in the wrong and had to retire to her bedroom for the rest of the evening. I don’t think she minded.

There is such a contrast in the two evenings. Each family has different styles which resulted in completely different results. The thing is, we all have people and events that put us on edge. I don’t expect Jess to get treated special, but I do expect others to respect her for her differences and treat her like the adult she is. If I had to take my pick, I’d much prefer a slice of heaven.

*names has been changed so no one gets any bright ideas as to our best kept secret.

Breaking rules

November 14, 2015 by Mary Leave a Comment

Because Roxy needed to get her ya-ya’s out, we decided to go to the dog park. Jess put on her boots, grabbed her coat but left her AAC device on the table. Typically, she takes her talker with her. Up until now, when she has forgotten, I’ve reminded her. This time, I said nothing. Today we were going to break the rule to “have your talker at all times”.

It’s cold and windy at the park. The dogs don’t seem to notice, but the owners are huddling. Jess and I sat at a table with a few other people. They all sneak glances at Jess, but I just smile. As a mom of a person with Angelman Syndrome, my senses are heightened whenever we are in public. Goes with the territory. Anyhow, one man said he has a sister like her. He was not judging, just his way to acknowledge.

Then a woman asked if “she” had a computer. I shared that this time, Jess chose not to bring her talker. The woman then said she has kids at her school that use PQ2G. Then I volunteered that we use Speak for Yourself . She had never heard of it. I further explained how Jess has 1,000’s of words at her finger tips in just two taps. Not just any words, but words that I would never thought of adding to her vocabulary. To have the ability to find the words to express yourself without support is pretty remarkable.

Here’s the thing my dear daughter, if you don’t take your talker, I’m not going to know what you want or what you are thinking. By not having your voice, you allow others to make your decisions. This is especially true for the outside world. People tend to talk around you, or to the person you are with, instead of directly to you. Unfortunately, no one will know how smart or funny or unique you are unless you speak to them. As they say, you don’t know what you’ve got till it’s gone. Today you realized your voice is needed even when you don’t feel like talking.

I’ve always thought that in order to spread the word about AAC, the talker needed to be visible, yet no one has ever commented about her device at the park before? This wasn’t the teachable moment I expected. This was serendipity that came to play and I love it when this happens. Jess, we all learned something new today because you broke the rules. Now don’t let that happen again! lol….

Rules of engagement

November 11, 2015 by Mary 1 Comment

The text read:

Staff: Jess has two options for the morning, which did I prefer?’

Me: ask her

Her choices were to help with meals on wheels, or go to the movies. Jess chose to do the service project.

Me: how did she tell you what she wanted to do?

Staff: She nodded her head

Me: Crap.

There was an opportune moment for Jess to speak using SFY, but it was missed. When people aren’t comfortable talking to someone who uses an AAC device, they prefer non-verbal gestures.

Our reality is there are few and far between supports for an adult that uses AAC. I’m sure things would be different and she wouldn’t need as much support if she had SFY when she was 5, 10 or even 15, but that was not the hand that she was dealt. We found SFY four months before she aged out of school. It’s remarkable that she manages as well as she does.

I’ve accepted the fact that we are not going to find anyone to model language on her device, so this is our focus at home. However, what I do expect is that her program at least tries to learn the rules for engagement. They need to do the following:

Initiate conversations. Begin with ice breakers, “I don’t know what you want” or, “ can you tell me with your words?”. Of course, just pointing to her device gets her to speak first.

Adjust your ears. Just like you tune your ear when hearing a foreign accent, you also have to tune your ear to hear someone speak through their computer*.

Time. To add another level of listening complexity, it takes Jess a few minutes to warm up to get her sentence structure correct. Sometimes I feel like I’m playing word jumble, but eventually she finds the correct structure. But for those that haven’t developed the ear, they will dismiss everything she says. Jess is not going to want to talk if you aren’t going to listen. Give her time to fine tune her instrument. Also, wait for her to finish, don’t guess what you think she is about to say.

When the conversation stalls. Add some encouraging words. If you missed what was said, acknowledge them by saying “I’m listening”. If she’s on a roll telling you something specific, my all time favorite response is “and then what happened?”. Everyone wants to tell their own story.

Jess really did want to deliver food for meals on wheels. She fancies herself a social butterfly. I think she made her decision based on who she was going to be with. When the crowd of people thinned out, I was told that she then started talking more.

Bottom line, what I must stress with the people that work with Jess. If you really want to help her, don’t be afraid to start the conversation, then let her speak for herself.

* soon more voices are going to be available for SFY, they will have more clarity and you can hear intonations. Jess will get her choice of voice!

Angel Food…Whole30

August 28, 2015 by Mary Leave a Comment

After sitting on the sides lines for months, I finally decided to commit to a Whole30. Husband didn’t need any convincing and Jess came along for the ride. Didn’t think it would be possible to get the family on board. In our case, the more the Mary-er!

Why now? For me, it was to avoid taking antidepressants and remove some of my middle. For Jess, she tends to be sedentary and extra weight is a result. Ataxia is part of her Angelman Syndrome. She isn’t comfortable on her feet. Jess rolls her right ankle which makes walking great distances uncomfortable. She had a tendon transfer surgery when she was 12. She wore an orthotic on her right foot for many years and all that did was deform the foot. Her right foot was stunted a whole size because the hard plastic orthotic prevents proper feedback from the foot to the brain. There may be a place for orthotics and I’m sure there are exceptions, but I believe that this is medieval and does more damage than good. Anyhow, back to the Whole30, Jess carries her weight in the middle, as does someone else, not going to mention names, who has hit middle age… For the most part, a t-shirt can cover the problem areas, but that doesn’t solve the health concern.

For thirty days, we are cutting out all dairy (no cheese), sugar, flour/ grains, legumes and of course, no junk food. What this leaves us is vegetables, fruit, meat, eggs and potatoes are allowed, just not French or fried. I have to admit, I had a Home Alone moment when I was at the market. I cut through the junk food section and felt like waiving my arms up in the air and scream as I shot down the aisle, gasping for a breath of air when I finally excited out from the land of temptation. That is not easy for a chip-o-holic to do…sigh…

Part of the meal concept is to cleanse and eliminate foods that cause inflammation. Once the thirty day has been completed, you slowly add food groups back to see how your body reacts. As for carbs, they are not nutritionally dense. The body will use the carbs for energy first before tapping into the weight i.e. energy stored on the body. Fat is not a bad thing, but just like anything else, too much of anything is not a good thing either.

The first to cheat was Jess. Yesterday when she came home she grabbed a breakfast bar. She only had a bite, but this means “do not pass go, do not collect $200” and she has to start over. Today, when she came home, she reached for tuna salad and watermelon, grasshopper is learning. That moment of satisfaction slipped away when I found a partial bag of Cheez-its in her backpack. It is difficult, if not near impossible, to control outside forces. I’m sure her friends saw her puppy dog eyes as she stared at their snack and then gave her some. Back to day one.

Husband was invited to spectate (just in case you thought I was implying he was playing) the Barklays golf tournament yesterday. He said he had a Falafel which is made with chick peas which is a no-no… go to jail and do not collect $200. He did not realize that this was forbidden food, but the rules are the rules.

What does this all mean? It means that we all have to start our Whole30 over from day one if you go off the menu plan, even if inadvertently. We are all in this together. We all need to make wise choices, focus on our health and address our plump little bodies before winter arrives. We are house bunnies who like to sit by the fire and drink hot chocolate when it is wicked cold. To be clear, we aren’t doing this so we can indulge once we reach our goals, but so we can establish a healthier diet and have the occasional treat.

So far, our favorite recipes have been a cold Thai salad (this link isn’t the recipe I used, but close enough) and watermelon salad. Last night I made chicken and sausage burgers with a side of mashed cauliflower which I refer to as faux-tatoes. Yum! Yes, we are a little tired of eggs. Thank goodness hollandaise sauce is allowed. For the most part, everything else has been pretty yummy.

After only eleven days without sugar, fruit tastes sweeter and vegetables from our local farm have even more flavor. Our meals are filling and there has been little desire to snack. Sure, I miss my sweet, creamy morning cup of java and not having chips with a burger is sad, however, not feeling hungry or having trouble sleeping is its own reward, at least it is for me. Jessie misses oatmeal for breakfast, cheese and ice cream socials. It’s okay little bird, once we claim our figures back, you can have some Angel food, but for now, we need to pay the price for our days of making not such wise choices.