Mary1991

My mind wanders during the quiet of the day, sometimes in rhyme…

“She will not talk with too many people around,

she will not talk when I sit her down,

she will not talk if she’s put on the spot,

she will not talk, not, not, not.

However,

She wants to chat when we are in the car,

or on the go, or in an ice cream bar.

She will talk when given more time,

and she likes to joke and likes to rhyme.

She likes to talk when she has something to say,

and wouldn’t it be nice if more people were this way?

She may be quieter than the average girl,

but when she does speak, it’s profound.

I’ve learned to listen and to learn to wait.

The words will come and it doesn’t matter if they are late.”

The best time to process thoughts is when I’m alone. Ninety-nine percent of the time, I’m thinking how to encourage Jessie to express herself more. Most of our conversations, she won’t sit still and would only linger long enough to see where a new word was added before exiting stage right.

I’ve been chided if I dared to compare her to other AAC users and over the years, I’ve learned to not pay heed to people’s expectations. Success only comes when I follow her lead. Jessie has her own voice and it’s her choice as to how and when she wants to use it. She learns on her own terms and I need respect her style.

As much as I would love for her to build long, perfect sentences, Jess tends to use one to three words. Even though I encourage her to be verbose, she prefers to be succinct.

For now, this is who she is and that is fine.

PS- don’t worry, I won’t give up my day job to be a poet…

For most of Jessie’s years, we didn’t know any Angel parents. We were on our own to reinvent the wheel, navigating seizures, and sleep disturbances. Even though we heard a few words and phrases, upon learning of her Angleman diagnosis (when she was 13), I let go of the hope that Jess would talk in a traditional way. I wish I had someone that I could have shared with that understood.

Earlier this week, I met with the only local Angel mom I know. We met by chance at a dance. Ashley was a chaperone. As soon as she saw Jessie, she suspected she was an Angel because she has one too. She made it her mission to meet the rest of the family before Jess left that night. Even though our children are different ages and stages, this hasn’t prevented us from appreciating each other’s perspective. Unfortunately, we don’t get to visit that often, but when we do, we talk about anything and everything and of course, all things Angel.

We all don’t have the luxury of being with an Angelman mom/dad but we all can find a cyber one. I don’t know if this will work but with two other Angel parents, we have just started a new Facebook group, Angelman Syndrome-Find a Buddy. (for lack of better name). This is not another chat group. The sole purpose is to find another parent to connect to on a more personal level so we can reduce that feeling of being isolated. [Read more…] about Angelman Syndrome-Find a Buddy

Right now our favorite movie is Guardians of the Galaxy, Vol 2. At first, I thought there must have been a wager involved when this movie was made, something to the effect.. “any movie can be made better if it has a good soundtrack.”.  Actually, the producer wanted to connect the mainstream audience with those that love science fiction. The end result was the 1980’s Walkman has much of a starring role as do the actors.

There are some people who only like to watch a movie once but Jess and I both enjoy watching our favorites repeatedly till we know the lines. Where I find Chris Pratt charming, Jess is enamored with baby Groot, We both love the music and the opening scene with Groot dancing gets her dancing too.

Where the audience hears the same phrase, “I am Groot”, the other characters understand the literal meaning of each utterance. Jess has a few words. She often says “Mom, Mom, Mom”, however, she does produce specific sounds in place of words. I’ve caught myself filling in the blanks based on her inflection. Of course, I can’t read her mind and we rely on her AAC device for her to communicate. How cool would be if in the next movie Groot has his own AAC device!

Of all the characters Jess has seen over the years, baby Groot is the first one that she has taken a shine to. I’m venturing a guess that she relates to him because he is non-verbal. Even though he only says the one phrase in every situation, it shouldn’t be assumed that he doesn’t have complex thoughts. Jess can attest to that.

Baby Groot does have problems following verbal instructions. When Yondu asked him to find his prototype fin, he returned with underwear, a space rat, and Vorker’s eye. After a few more attempts, he finally got some help. When Jess was younger, if she was asked to get something that was in the other end of the house (her shoes or socks), she’d either get lost along the way or return with something that caught her eye. This isn’t a problem for her now. In fact, she rarely gets sidetracked and has become the finder of my glasses and keys.

The scene where baby Groot is pressed against the spaceship window gave me the idea to get a Groot for my car. It would help me identify it in a parking lot because there are always at least three cars the same make and color. Unfortunately, as soon as Jess saw Groot, her eyes got big and she claimed him for herself. I have to admit, Groot is pretty cute in his own way.

Yesterday, Jess came home with a slight cough. This morning, she felt warm and I’m guessing it’s the beginnings of a cold. The best medicine is to stay home and rest. She’s laying pretty low right now. It’s probably going to be a movie day. I betcha can guess what we will be watching!

Peace out.

It’s summer and who doesn’t like a good shark tale?

When Peter Benchley wrote the book Jaws, he happened to live down the street from my parents. I babysat for his family a couple of times and his kids even rode one of my ponies. After his book came out, they moved from our small town to Princeton. Thanks to him, no one wanted to go in the water in the summer of 1975.

Years later, I was living on Maui and spent as much time as possible in the ocean. My girlfriends and I raced outrigger canoes and the local boys took us night fishing. We oohed and aahed at the site of Humpback whales but when the fishermen spotted barracuda in the water, we decided to get out of the water. My diver friends saw manta rays, Moray eels and the occasional sea turtle (they were still being hunted at that time, however, now they are showing a resurgence). The only time I ever thought about sharks was after hearing about a surfboard being bitten. The joke was not to wear a swimsuit that was the color of yum-yum yellow.

On our last visit to Maui, we went to Olowalu reef. My friend had suggested it because the water is shallow and the waves tend to be flat. Jessie and I stayed near the shore and my husband snorkeled out a bit farther.

Later that night, as we were sharing our day with my friend, she turned to another guest and asked, “how long ago was that shark attack?”.  I don’t recall if the answer had been five or ten years, it was a detail that didn’t seem very important. All I could think of why did she send us there? cue music.

With July 4th weekend nearly upon us, they are showing movie trailers for Jaws. I don’t believe Jessie has seen that movie. I’m not sure if it is a good idea or not. We just got her comfortable swimming in the ocean and I don’t want to alarm her. She freaks at the sound of E.T. and I’m sure theme music for Jaws will haunt her too, just like it does everyone who has seen the movie.

Thank goodness we don’t have to worry about sharks in the pool, at least not until we hear the music.

And one more thing, don’t feed sharks. This woman just learned this lesson the hard way.

Stay cool.