Search Results for: dance

When Jess first started going to dances, it was met with mixed emotions. She was excited to go, but often changed her mind as soon as we walked in the door. These events were pretty much the only time she wasn’t attached to my hip. When I left her, I felt like this was my version of a mother Robin kicking her baby bird out of the nest. Even though birds don’t really do this, the babies fall out because they are too big… Jess was too big to be clinging on to mom and out she was going to go. [Read more…] about She goes to dances

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

There’s a trick to re-arranging furniture. The room needs to be emptied so you can have a blank slate. You can’t visualize a different floor plan when the old one is still in place. This allows you to have a fresh perspective.

I’m applying this concept to a few things. It’s time to revamp.

All these years, I’ve set time aside to model, or I have practiced on my own while Jess was in earshot. I’m realizing I should be using the talker all the time when speaking with her (Instead of checking the history to see her usage, I’ll be using the history feature to make sure my modeling time increases). Not convenient but it does put Jess and me on equal footing. She isn’t getting much support for her device outside the home (that’s the one downside to aging out of school) and she doesn’t have anyone in her social circle that uses a Talker either. Jess prefers to be succinct. The outside world isn’t going to take the time to follow her flow of thinking, so she needs to expand her thoughts and the only way to do that use her Talker.

This isn’t the only change for this New Year. I’ve fallen into the trap of taking the path of least resistance. It’s easier to do things myself and it’s more work asking Jess to help, or anyone for that matter. Even though I have, I don’t like making a career out of housework.  I like to get the jobs done quickly.  We’ve watched enough movies where the rich girls suddenly have to provide for themselves. It’s time for life to imitate art. Jess can do more for herself than I’ve let her. I’m sure this is a control thing but this post isn’t about me…lol

I’ve been witnessing Jess attempt things that had made her self-conscience. Up until recently, she’s needed a lot of cajoling. It probably doesn’t help to realize the words I say the most have been, “hurry up, let’s go, now, schnell’. Instead, I should be saying, “you can do this, I’ll wait, thank you for helping”!  

On New Year’s Day, we were watching the Mummer’s Parade. Some of the participants were well choreographed, however, the ones that looked like a group of friend’s (or should I say drunks) running around being silly were the ones who caught Jess’s attention. Maybe it’s because they made it look easy, or maybe because they were willing to make fools of themselves (I say that with love), it was enough to make Jess attempt to follow their dance moves. This is huge! Girl, if you can dance, then it’s not a stretch to ask you to make a bed!. It’s time for me to pass the baton. I’ve cleared the room, you are in control, you can do this!

*this has been implemented these last few days as has been successful!

The best parties look effortless. When every aspect of the event has been thought out, guests feel comfortable. If you’ve ever gone to a bat mitzvah, or sweet 16 party and they have music, no doubt they will have dancers. I call them Ringers. These Ringers make sure everyone is on their feet and they keep the party moving.

We are so fortunate that Jess gets to attend dances like these once a month. Tonight she met two new Ringers, Nicole and Rhea. Jess relies on first impressions. When they greeted her at the door with a smile, this set the tone for the evening. As I left, I knew Jess was going to have a fun evening.

We are grateful to all the many volunteers who give up their time on a Friday night so they can make a difference in someone else’s life. For this parent, this is a big deal and we thank you! 

Jess has been going to this dance for a few years now. It’s taken her that long to get comfortable. The music is loud, there’s a lot of activity, as well as, new people to meet. These social situations are good for her. Besides, she doesn’t want to hang with her parents all the time.

PS- Debra and Hope, a pleasure to get to talk to you tonight! This is a nice start to our weekend! Thank you!

Usually, Jess rides shotgun. Even though she has no problem getting into other people’s personal space, she has a thing about her own and can get pushy, so she sits up front.

Today, when Jess returned, I was surprised to see she was riding in the back of the van.  As soon as I peeked in, I knew why. She was sitting next to Ryan.

Ryan is one of her favorite boyfriends. He likes talking to her and she enjoys listening. At the mere mention of his name, she giggles. It’s important to be with people that “get” you and you don’t have to explain yourself. (darn, I should have taken their picture, next time)

It was obvious Jess had a good day. She tells me a little bit on her Talker, but most of the time she keeps me guessing and doesn’t share many details, thus her secret life.

Tonight there’s a dance in Princeton. Any moment, she will want to get ready. I wonder what dress she will choose? I think she wants to wear her Witches hat. It goes with everything! The hat is the only part of Halloween she cares about. Long ago are the days of running from house to house filling her bag with candy.

The gym floors were just refinished. They said “no spiky heels”. Not a problem, she’s a sneaker kind of girl but socks will do too. I’d call it a sock hop but she can’t hop.

Sometimes Jess dances. Sometimes I find her sitting on the side watching. She likes to hang out with the adults while she observes. This isn’t for lack of confidence, she’s been known to walk up to the boys and pull them onto the floor. She’ll do her signature moves, “the goal” and the “bop” and then leave them hanging.

At the end of the night, as soon as she sees me, she runs the other way. She wants to stay and doesn’t want the night to end. 

Dance night is date night for us. Most of the time, we are a party of three, however, this is the one night out of the month we are left to our own devices. It’s not enough time to see a movie and too much time for a leisurely dinner, but we are not complaining.

Jess attends a day program and they are always on the go. It balances out this mom who isn’t that much fun anymore. Outside of church and these monthly dances, there’s not a lot of things for Jess to do.

Even though she rarely appears to be lonely, she does get bored. I wish she had a friend to hang out with…sigh…

This isn’t to say Jess doesn’t have a best friend. Roxy is devoted. They enjoy watching movies together. One of Jess’s chores is to feed Roxy and sometimes shares her meals with her too. She learned from me that if you want to make a friend, feed them.

It’s time to get a move on. Time for you know who to get pretty.

All for now.