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Mary1991

No one likes people who overshare

May 23, 2019 by Mary1991 Leave a Comment

Strawberry picking

I’m fine with sharing clothes and food with my family, however, I draw the line at illness, which falls under the category of oversharing.

Yesterday, when I started experiencing postnasal drip and an overall crappy feeling, I had an ah-ha moment. I remembered seeing Jessie sneaking a sip of my iced tea a few days earlier. At the time, I put the travel mug in the dishwasher and didn’t think anything more of it. Besides, she typically only drinks from her own glass.

Now, this past weekend made sense. Jess had been under the weather, camped out on the couch, and wrapped in a comforter. We didn’t know what was wrong. There was no fever, sneezing, or coughing. Other than her not moving, the only clear indicator that something was off was Jessie wasn’t eating.

One of the most challenging aspects of a non-verbal Angel is sleuthing out what is wrong and she wasn’t giving us much to go on. Usually, she will show us where it hurts, or tell us on her Talker, but this time I missed the clue which was her holding a washcloth to her face.

By Monday, her activity level was up and her appetite had returned and it seemed she would be ready to return to her normal schedule by the next day. While waiting in the car for her ride, Jess had the dry heaves. Reluctantly, I made a doctor’s appointment. Not because I didn’t want to know what was wrong but because if she doesn’t have any clear symptoms, it’s usually fruitless to see a doctor. However, even though she’s never had strep, I wanted to rule it out. 

The doctor’s” best guess” was allergies. All they can do is guess. However, later that day, when my throat started, I realized this must have been what she was dealing with over the weekend. Fortunately, her resting allowed her body to fight the possible cold and that was my plan to prevent from getting sicker as well, that and eat the chicken soup I’d made for her over the weekend. Chicken soup must be what they are implying when saying, feed a cold and starve a fever.

Yesterday, the bounce in Jessie’s step had returned and I was somewhat rested. After too many days of her being housebound and impending weather, we took the opportunity to go strawberry picking. Heavy rain will shorten the season and this was our only chance. Jess liked the idea but started complaining when walking in the field to get to the designated patch. I’m sure if the footing were better and the ground was even, she would have helped pick. Every year, I keep trying to get her to participate and one day she will.

The only help Jess offered was to say we needed ice cream to go with the fruit. She’s always thinking. Ice cream makes a sore throat feel better and nothing yummier than freshly picked strawberries to top it off. 

No one likes people who overshare. It’s boorish. At least this illness appears to be fast-moving and I’m grateful.

 

Filed Under: 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

Quiet Victory Farm: Small Farm, Big Impact

February 21, 2019 by Mary1991 4 Comments

Vicki Peters, Owner/Trainer/Manager

Quiet Victory Farm is one of the best-kept secrets in Hopewell Valley! Though you can catch a glimpse of the farm from the main road, the entrance is tucked inside a bucolic neighborhood. For many years, I drove past not realizing what a hidden gem it was for the serious equestrian. When I was looking for a new barn a couple of years ago, it was then I decided to see what Quiet Victory had to offer.

My first impression of QVF was that there was a strong sense of order. Blankets were folded on the doors, halters were hung in a precise way and the horses were all in show condition. I was pleased to see my lesson was an older Dutch Warmblood named Captain. He was exactly the type of horse I was looking for. One who had been there and done that. Though Captain had been unsuccessful as a Grand Prix jumper, he did carry his rider well in the Big Eq.division. Captain went through a few more owners before Vicki acquired him and he needed a lot of TLC. Vicki, brought him back and he showed successfully locally before being retired from the show ring. Captain still works regularly because he is happiest when he has a job. Besides, just because your older doesn’t mean you have to let yourself go!

These last two seasons at QVF, I’ve witnessed what Vicki does best– matchmaking riders to horses and then prepping them for the show ring. It’s remarkable how she can take a handful of students to A-shows and consistently place well. It’s a tradition for the ribbons to be hung on the stall doors (so the horses can brag when no one is in earshot) and they make for a colorful Monday morning.

Vicki and a few of her students schooling at Saugerties
One last photo was taken before leaving HITS Saugerties. It was a great week!

 

 

 

 

 

 

 

 

 

 

 

 

Whenever I meet someone who is good at what they do, I’m always curious to learn how they got their start and it was interesting to hear Vicki’s story. She began by saying Thom Hardy was a big mentor during her early years, however, she always had the dream to become a jockey.

At the track, you begin as a groom before you are allowed to ride, and this is exactly what Vicki did. Here she learned how to supple and finesse a horse the correct way to establish fitness and muscle. She also gained valuable experience working with young horses, wrapping legs and everything else that goes on in the backstretch before earning her jockey’s license. 

After meeting her need for speed, she left racehorses to manage a barn in New Hope. When the opportunity came to work for Kevin Babington, Vicki jumped at the chance. While he was in Florida on the Sunshine Circuit, she stayed behind and taught the students who stayed home. It was then that she realized how much she enjoyed teaching. After being with Kevin, she managed a few more barns. During this time, she developed her own training program. She left management so she could cultivate her own teaching style. The next barn she was to manage was her own, Quiet Victory Farm.

In thirty years, Vicki has worked with hundreds of riders, from leadline to Intercollegiate. A few of her riders have gone pro, and one is a top Grand Prix rider. Two have won the Cacchione Cup (the highest level of Intercollegiate) and now are trainers at big barns. And of course, she works with a few die-hard older riders who want to continue at the highest level their bodies will allow. Of course, I’m not going to mention names!

The last question I asked Vicki was how did she come up with the name for the farm? My first guess was it was the name of a racehorse but I was wrong. The name came about when Vicki went out on her own. She had a student, who although was well connected socially in her current barn, suffered from major confidence issues under saddle. She came to Vicki for secret lessons throughout that show season and made huge improvements,  leading to a championship in the adult hunters at WEF (Winter Equestrian Festival) and everyone at her barn was shocked. The woman then said, ”this only happened because of you Vicki, but has to be our Quiet Victory”, making Vicki promise to not tell anyone.

As sad as this secret was to keep, it should be no secret that Quiet Victory Farm is an ideal barn for the serious rider. If you are looking for a barn where your horse will be given the utmost care and you want to ride at your highest level, don’t hesitate to check out QVF.

Me and Captain

Filed Under: All about a horse

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

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