There IS a reason for everything

These last few weeks have been difficult. Jess has been grinding her teeth. Like nails on a chalkboard, this sound makes me cringe. As it became increasingly constant, it felt like Chinese water torture. When she started grinding her teeth at the dinner table, I couldn’t take it anymore, she pushed me over the edge and I asked her to leave. Continue reading

Dentist drama

IMG_2286Today, Jess had a six-month dental checkup. This time she was given a new doctor.

With my full support, the team wrapped her in Velcro bands. This has a calming effect, as well as, prevents her from flailing her arms, a knee jerk reaction, but with arms…

The dentist then placed a mouth prop in to prevent her from biting down.  As he was inspecting each tooth, he started singing the ABC’s. Jess started to object and tried to move her head. He then began singing “the Wheels on the Bus”.*

Before he could finish the first verse, I said:

“Excuse me, but that song is not appropriate, Jess is a young adult”.

him: “uhhh….. what should I sing? what music does she like?”

me: “well, what music do you listen to?”

him: pause….. “oh”.

* I was so annoyed at that moment, I can’t remember the whole conversation verbatim, but this was the gist.

From there,  I (nicely) went off telling him that you can’t define a person solely on their outward appearance and you should not assume what someone comprehends based on their diagnosis.  Labels tend to share information with a broad stroke.  To his credit, he had read about Angelman Syndrome before her appointment, but most likely he read the Wikipedia version. **

As I was “educating” the young doctor, I caught Jess’s eye and she proceeded to calm down.  I hate talking about her in front of her, but this was one of those moments I couldn’t take it and he struck a nerve.

This was awkward.  Jess couldn’t speak for herself, (remember she was wrapped in Velcro and did not have access to her Talker)  so I had to be her voice. It’s not unusual to not be able to answer the dentist’s questions. Why do they always ask questions that require more than a yes or no when they are in your mouth?

Unfortunately, Jess has a cavity that needs attention so we will be returning next week. While scheduling the appointment, I made it with another doctor who Jess had seen before.  I’m confident that the dentist she saw today would have given her proper care, but I think he needs to sit this one out.

….

The day before Jess asked to go to the ice cream shop. She does this often. I informed her that now she’s a young adult, it’s important for her to watch her figure and that she can’t have ice cream unless she works out. Jess responded by calling me opinionated. After today’s drama, she is probably happy that I am.

**It should also be noted that this primarily a pediatric dental office.  Most of the patients are little ones, but they also support the special needs community.  I would not hesitate to recommend them to another family.

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The Angel life…

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Dog days of summer

We are in the middle of summer. It’s hot and thick.  The only escape is a friend’s pool and a tall glass of iced tea.  Oh yeah, and a Golden who wants to play.

Summer has been uneventful and this is a good thing.

For Jess to use her talker, it  isn’t as novel as it once was.  I don’t share everything she says because it is no longer new.  She chats to me all the time, tells me what is on her mind and shares her opinion.

Over the weekend, we had a family reunion.  I wasn’t all that surprised when Jess chose not to use her talker.  I’m not sure if it was the pressure having 30 people here, or if she just didn’t want to talk to people that aren’t familiar with someone using an AAC voice.  It would have been great for her to expose others, but I don’t blame her for wanting to take a day off.  In hindsight, it would have been better if I shared with the family (we don’t see very often)  how to have a successful conversation with someone who uses a speech device.

Thank goodness we were outside and under the trees. It was the only place to find a breeze.   When I finally sat down to dinner,  I was amused when Jess got up and took her plate to another table.  She’s a social butterfly.

It was nice to observe her in her element.  This is how she operates;

If you smile, she smiles.

He who talks less, hears more.

When I think I’m raising her awareness, she raises mine.

This is the Angel life…

 

 

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I don’t know how you do it…

IMG_9086The phrase many special needs parents get annoyed hearing is          “I don’t know how you do it”.          We take this as a personal affront.  When said, I felt as if they are looking at my child as less.  However, deep down, I know that if the situation were reversed, the onlooker would take care of those that need support. I don’t care if it is a child, partner, parent, pet or a fortunate friend, but when someone needs help, there’s no hesitation. When you see someone fall within arms reach, instinctively you try to catch them.

To be truthful, there have been times where I didn’t jump up immediately, but took time to muster the energy because I was so worn out.  Of course, in an urgent situation, I make a mad dash.  Unfortunately, more times than I care to remember,  “just when I’m out, they pull me back in”.

Parents do things for their children that they probably wouldn’t do for anyone else.  For example, when Jess was eleven, we had taken her to a routine EEG at her neurologist’s office.  From there, we decided to go out to dinner rather than deal with commuter traffic. We enjoyed a wonderful Italian meal.  Jess ordered baked Ziti which was her favorite. At the time we had no idea this would turn into a memorable evening and that all hell was about to break loose.

As we headed for home, we stopped to walk around the Home Depot Expo so we could work off dinner.  Just as we neared a $700 toilet, suddenly Jess was not acting right, she turned pale and I could see that she was about to throw up.  She was wearing an oversized t-shirt which I pulled out to catch “dinner”.  Of course we were at the opposite end of the store from the bathroom. We ran down the aisle parting it like the Red Sea.  People gawked in horror as I effortlessly caught buckets of upchuck in her shirt.  Once in the bathroom, after the third wave of nausea, I realized we would have to make a break for home.  While husband drove, I sat in the backseat with my sick little puppy.  I had removed her shirt and put my windbreaker over her (of course it was a rainy day) and held the bag making catches like an all star outfielder.  Seriously, I doubt this is something I would do for someone other than my child.  Sorry husband, I don’t think I’d do this for you either.

After a month of sleep disturbance, last night was the second in a row where Jess slept through the night.  Now I’m going to say “I don’t know how you do it” to the  Angelman parents whose kids have long periods where their kids aren’t sleeping.  Even though we did experience sleepless nights In the early years, I thought all-nighters were behind me.  I’m too old for this.  I don’t have the moves like I once did and definitely don’t have the endurance or stamina.  This is why we should have children when we are young.

For you night time warrior parents, I say this with the utmost respect. Please realize that this is a badge of honor and you are being recognized for the great job you are doing.  It is not meant to be patronizing.

Finally, the biggest mystery is how Jess can go weeks without much sleep and not be worse for wear the next day while I look like 10 miles of bad road!

Jessie, I don’t know how you do it!

When a boy calls…

IMG_9056He’s been trying for some time to reach her. Private messaging had not been successful, so he had to find  another way.

Cody didn’t have her number, but he found mine on his Mom’s iPad.  When I answered the phone, I knew it wasn’t meant for me.  Jess did not play it cool, but giggled with glee.  Exciting to have a boy call her for the first time!

They have been corresponding by mail. I don’t recall when it started, but it began by his sending her a holiday card with photos and little gifts. She replied in kind.

For the most part, their communication has been supported by the Moms. Two years ago, we met at a dinner for Angelman parents at a Closing the Gap conference. I never dreamed that Jess would make a new friend in the process. We don’t know many Angelman families so this is rather special for us.

Cody’s Mom* thinks his calling is random, but I beg to differ. If this happened once, or maybe twice, I could be a happy coincidence. Just like Jess, if he sees an unlocked device, he will use it. He has PM’d us nearly half a dozen times and this is the third time he has used Facetime. His efforts are purposeful.

When Cody and Jess said good-bye, I realized she didn’t know how to use this feature.  I then added four people to her address book; myself, her father, Cody and her therapist. Don’t we all need a therapist? lol… actually, she wears two hats because she is a friend and they have a lot to talk about.

IMG_9074 I tried to show Jess how to access Facetime, but she didn’t want my help.  She preferred to figure it out herself. The first FT call was to her Dad. The day is getting close where I will fade out of her social life.  She will not need me and that is how it should be.

*Claire, you made the photo. Next time they speak, we will get another pic of the two of them 🙂  Thank you for being a willing partner fostering communication!  Cody has been a wonderful pen-pal.  Someday they shall meet!

I wish someone had told me…

IMG_8132I wish someone had told me to throw out the book “What to Expect the First Year”.  When Jess was nine-months, she wasn’t meeting her milestones.  Realizing that this book was not written for us was disturbing. Milestones are important to recognize, however, not all children walk and talk at the same time.  If they are Angels, then there is no specific time line.  Jess may have waited 10-20 years to accomplish some things, but as far as I’m concerned, it doesn’t matter when you cross the finish line.

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Preparing for an AAC Big Year!

IMG_7256A Big Year is an informal competition based on the honor system among birders.  The person that sees, or hears the most birds gets to hold the title.  I’m declaring this be an AAC Big Year!  Of course, this is not in any way, shape or form a competition with another user. The focus is to achieve our personal best.

To kick off our year, we are using this AACtion plan. The theory is, if we improve the communication partners modeling skills, the AAC user’s success rate will increase as well.  This is not just a theory, after only a few days on the AACtion plan, we  are already  hearing results!  Yesterday, while on an errand run, Jess used some of the target words. How encouraging!

When introducing new vocabulary, Jess and I first sit together.  It doesn’t take much to overwhelm her when working/modeling one on one.  I get the “oh mother” sideways glance, a big sigh and then she exits stage left.  Jess is like that horse you lead to water, learning can’t be forced.

Jess often sits on the other side of our double fireplace to listen to conversations in the connecting room

Jess often sits on the other side of our double fireplace to listen to conversations in the connecting room

I’m finding it is just as effective to go into immersion mode while she is in ear shot.  I didn’t realize my using SFY to talk to the dog, the cat, the husband, had such impact?  Up until now, I thought Jess suffered from mommy deafness.  Who knew that you can model from across the room?  Sure I suspected it all along, but not until now did I realize one of her special gifts was eavesdropping!

Jess is an efficient AAC user, but I have not stretched her to elaborate on her thoughts. This is because I didn’t know how.   Jess’s style of talking has gotten her by at home, but doesn’t work with people who don’t know her, much less those who have never seen an AAC device..

The harsh reality is, if I don’t speak SFY,  Jess will have no one to practice with.  Sadly, in three years, only twice has she been with other AAC users.  The first time was when we were at a picnic for Angelman Syndrome families (there were only two other devices and no low tech AAC’s were in sight).  The other time was at a SFY workshop and EVERYONE had their device. Oh what a perfect world it would be if we could meet  AAC users on a regular basis… I’m putting this out to the universe and adding it to my wish list.

I’m convinced that Jess’s level of communication will improve as I increase my SFY usage. The realization has hit me that when we both go out that I should use a device too.  I need to model outside of the home when speaking to people we don’t know.  Unless I’m able to do this, how can I expect her to?  Since she is no longer in school, this is the most logical path.  Not only does Jess have to learn how to hold a conversation with people outside our immediate family, but we need to pave the way for other AAC users that follow.

On a side note, Dad gave Jess a puzzle over Christmas. He thought it was something they could do together. I LOVE this idea, however, the puzzle is too difficult for her fine motor abilities.  Of course, we’ve tried playing with puzzles over the years, but Jess was not able to tell up from down, lacked spacial awareness and was not successful. In the early years, there wasn’t a puzzle easy enough.

Just because you fail, doesn’t mean you stop trying.  For now, I put the ambitious 300 piece puzzle aside  (chosen because it had a pretty picture) and instead we are working on a 24 piece wooden puzzle. We are experiencing success!  I’m witnessing how far Jess has come. Because Jess has been using SFY, her fine motor and attention span have improved exponentially!  While I’m teaching her the skills to work on a puzzle (find the corners, straight lines, color matching), this is also giving us more language to talk about and this comes right back to the AACtion plan.

Whodathunk that a lesson plan would be a catalyst for so many changes?  This project has increased her word usage, we are talking more AAC as a family (all devices are on the table during breakfast and dinner) and it has given us a jumping off point to expand our conversations. I repeat, we are seeing benefits after only a few days! This is just brilliant!  Why has this not been done before? There have been core word monthly lists shared, but practicing words without a plan wasn’t very successful for us. It lacked meaning for someone like me that needs structure and is out of their element.

Unless you are able to practice words in a purposeful and meaningful way, it’s difficult to remember the motor plan.  Take heart new and old #speakingAAC users, this system works no matter what AAC program you use.

Go AAC Big or go home… I’m already home, so I have no excuse, I’m going big!

I do declare, this IS going to be a BIG AAC YEAR!

The magic word is…

IMG_6656My siblings and I were raised on the magic words  As far as my mother was concerned, if you didn’t begin with please and end in thank you, she’d only hear crickets and the request would go unacknowledged.

I’ve realized that I’ve not held Jess to this same standard. I’ve been remiss when it comes to teaching social manners. It’s difficult for Jess to process what she hears and process what she sees simultaneously, so I don’t force her to look me in the eye, but she could shake a person’s hand, and/or use the appropriate social words on her talker.  Just because she has Angelman Syndrome doesn’t mean the rules don’t apply.  I’m finding it amusing that I’ve committed a social faux pas with regards to etiquette. Continue reading

Angelman Syndrome; needs to be redefined

At the age of 13, Jess was diagnosed with Angelman Syndrome. Of course, I knew nothing about it and I did what every parent does, researched. For a split second, having a diagnosis was incredible, especially after waiting so long for one, but then when I read the prognosis for AS, I felt like it was a sentence.  The majority of AS were considered developmentally delayed (which replaced the word retarded), were child-like, always happy, not able to have independent living skills, etc. This stopped me from wanting to read. All the “experts” said what my child couldn’t do, there was nothing about capabilities. The symptoms we related to were: fair skinned, ataxic gate, severely apraxic, globally delayed and seizure disorder. However, there was one piece of information that I clung to. “AS has a higher receptive language than their functioning abilities”. When I refer to “functional abilities”, I mean that fine, gross and verbal skills are weak (or they may be non-existent). Receptive language, the ability to understand was far greater. At this point, I shunned the AS community because I felt they didn’t give me much to work with, but that left me with just the educational system for support. Continue reading