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Now we are talking

Necessity is the Mother of Invention

March 9, 2019 by Mary1991 6 Comments

The broken strap on top.
Quick fix with Zip Ties
Back in business with the replacement case.

About a month ago, one of the corner straps for the utility carrying case* which wraps around the protective case for Jessie’s iPad, broke. Immediately, I ordered another and gave Jess her backup device. Within the week, the strap on this case broke too. I hadn’t realized it was on its last legs. This prompted me to call the company to see when we could expect the replacement. To my dismay, they had no record of the order which meant we would have to wait yet another week. Unfortunately, this left us in a predicament. Unless I could come up with a solution fast, it would mean Jess would be without her Talker for seven to ten days, and being without a voice is not acceptable for even one. Now I’m annoyed that we need a backup for our backup. Makes me want to $&##%# curse!

Jessie doing laps at the gym with her back-up Talker.

Because she takes her Talker everywhere, she’s very hard on the cases, but this isn’t our only concern. We’ve found the best way to ensure she doesn’t leave her Talker behind is for the device to have a strap that she can wear diagonally across her body, like a pocketbook. Not only does this keep the iPad from swinging but she’s less likely to set it down, get distracted and forget it. Of course, the app Find My Phone is installed, however, you do need to check that it is working. As I’m writing this, I just tried tracking Jessie and FMP is saying she is offline. This is not the first time this app has not worked (maybe it needs an update?). If it’s not one thing that fails, it’s another but I digress…

In the past, I’ve jury-rigged cases with plain metal key rings after the plastic attachments cracked. I’ve even made Jess her own carrying case because she needed the cross strap. This time, I MacGyvered it with a zip tie and she was good to go. These ties give it the industrial strength that the rubber band like straps lacked.

About a week later, two new utility cases arrived in the mail. The shoulder straps are thin and are uncomfortable for her to wear all day and  I find carrying straps from travel bags seem to be a good solution.

Whereas my husband keeps a cheap pair of sunglasses in the car, I prefer to be prepared. Because we have needs, my travel bag includes: church key, (bottle and wine opener for the adults) drinking cup, lip balm, straws, nail clippers, sunscreen, hair brush, floss, quarters and some dollar bills, a few plastic bags**, iPad power supply cords, screen wipes, napkins, and now need to add zip ties.  At one time, I kept gum and breath mints, however, Jess found the stash and being that she is extremely inquisitive and nosy, she couldn’t help herself from helping herself and that was the end of that! This list reminds me of the scene in The Jerk…and that’s all I need. This makes me wonder, what do other people keep on hand when they travel?

The first thing we made sure we had was a snack cup. The only way to prevent a mess was for Jess to have a vessel to put food in. Long before straws became an “issue”, we kept them in the car. It only took one time for us to stop for drinks at a convenience store only to find there were no straws. Jess will drink from a glass but not from a bottle or a can, and the car we were traveling in didn’t have the “in case of emergency” supplies.

And people ask what I do with my time? Usually, I’m thinking of things that will make Jessie’s life easier…and in turn, ours too. 

 

*This Otterbox isn’t perfect but it meets her needs the best so far. As cute as otters are, if the Company wants to test for true ruggedness, they should hire Jessie to use in real-life situations.

*why plastic bags? They came in handy when Jess suffered a bout of cyclonic vomiting. I’ve also used them to pick up fawns and birds I’ve found on the road who didn’t make it to the other side. I hate seeing their bodies but I hate it more seeing them run over multiple times. After gently moving, I say a prayer and lay them to rest.

Filed Under: Now we are talking

She will get there in her own time

February 8, 2019 by Mary1991 1 Comment

For the last twelve months, I’ve not kept up with this blog. In my defense, I had been asked to write a weekly column about Jessie’s life with Angelman Syndrome. I’m amazed that I was able to complete a year but I’m finding, at this stage, I don’t have as much to share as I once did. There was no Facebook when Jess was born and there was no such thing as blogging. There were so many challenges, I wouldn’t have run out of things to say so quickly!

Not until Jess turned 13 did we learn her true diagnosis. Even so, it was another seven years before I found other Angelman parents and realized there was a community, All that time, I felt as though we were forging the road alone. I followed the lead of her teachers and doctors under the belief they knew what to do because they were the experts. I was just an overwhelmed mother who had no idea how to help other than take Jess to any and all therapy that we thought would break the spell.

Long ago I learned about auditory learners, visual learners and people like me who needed to be hands on. Jessie had a smidgen of all the above but not enough of each style for her to make much progress. Couple that with being non-verbal, we had no idea what she was thinking much less understanding. Sure, as a mom, we get pretty good at anticipating needs but this is far from having the ability to read a person’s mind.

To add to Jessie’s complex learning style, there was a complete disconnection with motor planning. Though I could see that she knew what belonged together and what was needed to make something work, she had no ability to get her eyes and hands to work together to make it happen. No one recognized that her depth perception was severely compromised (due to her right eye drifting, it should have been obvious to the trained eye, no pun intended. If you asked her to tap a picture of an apple, she tapped a photo of a puppy instead, it was assumed she hadn’t a clue what you were talking about. Being that hindsight is 20/20, she didn’t have the eye-hand coordination to touch the apple (but touched every picture around it in a perfect circle, yet again, this should have been an obvious clue) and so ended up touching something that interested her.

Oh, how frustrating those “old days” were. However, today is a new day and we have resolved many of the barriers that held her back from learning.

Though Jess isn’t a typical 20-something, we are witnessing her grow into a unique and lovely young woman. Though this isn’t the life I would have chosen, I am grateful for what I’ve learned because of her.

When there isn’t a road, you need to make your own. Don’t fall into the trap and let others predict your child’s fate. For us, we had to break away and go rogue.  If something isn’t working, it’s crazy to keep thinking that doing the same thing over and over is going to change the outcome. I know that has been said so many times before but it is so very true.

I wish I could say I’m working daily on her independence, however, my effort is better compared to a roller coaster. There are days we work diligently and then there are days we coast. Twists and turns can be scary, however, more times than not, we find ourselves coasting in at days end with little drama, ready to begin the next day with joyful anticipation.

Though Jess has (and will always have) a long way to go, we are pleased with the progress she has made. She has transitioned to where she helps me more than makes me work. No longer does she resent me for asking more of her and the end result is we both have more freedom to pursue what makes us happy. It’s odd to say but I feel blessed that Jess has been my teacher. Hopefully, she feels the same way.

Sometimes Mama needs rest and sometimes she needs a cocktail but most of all, we moms should not be too hard on ourselves. There’s always more to do than time. Some days we are able to cross out items on the todo list, and other days we find ourselves going nowhere fast. As Scarlett O’Hara said, “Tomorrow is another day”.

It doesn’t matter how long it takes her to get there, she will in her own time.

PS- I don’t really know where “there” is, I can’t see around the bend but as she needs me less, I feel as though we are getting closer to our destination.

 

Filed Under: Now we are talking

There’s a typical girl inside this Angel

December 8, 2018 by Mary1991 5 Comments

Jess said this after watching the movie My Big Fat Greek Wedding. This was how Toula spoke. She was a woman coming into her own, just like Jess. This affirms that there’s a typical girl inside this Angel.

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…

Filed Under: Now we are talking

Angelman Syndrome-Find a Buddy

August 27, 2018 by Mary1991 4 Comments

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

Filed Under: Now we are talking

She found her voice by Chance

August 11, 2018 by Mary1991 7 Comments

The front and back of Jessie’s new business card

Over the last three years, we have shared over 500 business cards and now we have run out. These cards were given to people who either needed information or were so curious, they’d ask questions I didn’t find appropriate answering. Besides, I don’t believe we should talk about someone in front of them, it’s rude. With Jess’s permission, the cards allow us to share her story. [Read more…] about She found her voice by Chance

Filed Under: AAC, Now we are talking

A New Face for an old Place

July 23, 2018 by Mary1991 Leave a Comment

Car rides are how we encourage conversation! Stay tuned for the next installment 🙂

Argh, computers and plugin updates. As soon as I realized the phone interface was not working well for the blog, I reached out to my brilliant web support person. She made the fixes and then said, “you know, the interface is old…” and then I knew it was time for a make-over.

So, the blogs face will change but it will be easier to navigate and the message will be the same: Presume competence, model, model, model AAC, the life of an Angel and whatever else I’m compelled to write about.

Changes, they are a comin’

Mary & Jessie

Filed Under: Now we are talking

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