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The last thing I had to prep for dinner was the salad dressing. Instead of peeling off a clove of garlic from the head, I took a short cut and cut the stalk end. Bad idea. I lifted the knife off the board, a rookie mistake, it slipped off the garlic and onto my finger, chopping right through the nail. Immediately I called my husband to say I was going to the ER. He didn’t hesitate to say he would leave immediately and that he would meet Jessie’s ride. This happened at 1:30, Jessie usually returns home around 2:30, and our guests, who were flying in from Colorado, ETA was 4:30. It was going to be tight.

Capital Health is less than ten minutes from the house. I wrapped my finger in a paper towel and kept enough pressure on to prevent the bleeding. Visions of Saturday Night Live with Dan Ackroyd portraying Julie Child came to mind. At least I knew what to do, however, I didn’t know how bad my self-inflicted wound was. It was throbbing and I was afraid to look. What I did know was my finger needed more than a bandaid.

To make a long story short, the doctor irrigated the deep cut, glued my fingernail and the rest of the cut, and I was home by 3:30. This must be some kind of ER record!

While I was at the hospital, I was FaceTiming my husband. If we were going to save dinner, he needed to set the food out so it to come to room temperature, turn on the oven, mince the garlic and slice the tomatoes. I had left the bloody knife on the cutting board and he joked about cleaning up the scene of the crime. When Jessie came home, he then helped her shower and then they chose an outfit for the evening. (At the end of the night, he even did the dishes and cleaned the kitchen)

During all of this, I was so preoccupied with dinner and my injury, I didn’t include Jessie in on the conversation. Sadly, this is what happens when someone is non-verbal. Jessie was sitting with us in our living room when I told my husband about the hospital. I relayed that I was asked how I wanted to be identified, he or she, they rattled off several other options and ended with Q. Honestly, I don’t think this is necessary information with regards to my injured digit but I digress.

As I was finishing telling my story, Jessie said on her Talker, “emergency room”. Then she said, “her, her, her, her”. I wanted to smack my forehead. Of course, Jess was listening and she wanted me to share with her too. She told me this is how I should have answered the identity question. 

Jessie uses the app Speak for Yourself and has a custom vocabulary that is always growing. There is also a Babble feature where she can open all the words that have been preprogrammed into the iPad. So there are two ways to access speech. Babble is what she opened so she could find the word Emergency room. “Her” is on the home page but not a word she uses very often. As soon as she spoke, I felt guilty.

Immediately, I told her my story from the beginning. This answered why her Dad was home to greet her. Then I told her how they super glued my finger back together. Then showed her my bandaged finger. Finally, I made sure the word “emergency room” was opened in her custom vocabulary.

This whole event reminded me of how vital it is to make sure I include Jessie in ALL our conversations. She doesn’t have the social grace of looking a person in the eye when they are speaking. Too often it is assumed that she isn’t listening or doesn’t understand. I know this but people that don’t know Jessie well have a hard time accepting this concept. Jessie’s eye contact improves when we slow down the conversation making which makes her feel included. If she is in a group, then I need to be the one to draw her into the conversation.

Whispers are always messages, and if you don’t hear the message, the message turns into a problem. And if you don’t handle the problem, the problem turns into a crisis. And if you don’t handle the crisis, disaster. Your life is speaking to you. Oprah Winfrey, May 25, 2011

My injured finger was more than a whisper. I wouldn’t say it was a crisis either, however, I did hear my lesson and am sharing it so no one forgets that their Angel is watching and listening to everything you do and say. This was my not so gentle reminder to presume competence.

 

 

 

It’s so important to have a robust vocabulary at your fingertips! If the Babble words weren’t easily accessible to Jess, I would have no idea what she would want to say.

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.

 

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.

 

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