The sleep sagas

Oh what a beautiful morning, 

Oh what a beautiful day,

I got a full night of sleep,

and it looks like it will snow all day.

IIf your sleep has been disturbed for a couple of months, you’d break into song too.

Inspiration struck when I wasn’t even looking and the answer was right in front of me the whole time.  After watching a video of a therapy dog in action, I turned to Roxy and said   “I could use your services”.

Roxy already plays a support role.  She’s been an integral part of Jessie’s social network and watches over her like a good sister, but now I’m seeing that there are other ways she can help.

Before we adopted Roxy, we considered several different breeds. Mama would have loved a dog that didn’t shed. Goldendoodles are sweet as could be, but we were downsizing from Golden Retrievers and I couldn’t justify spending $2,500 on a designer mutt.  Besides, there’s an abundance of rescue dogs and certainly we could find one that would fit our family.  To make a long story short, Roxy wasn’t what I was looking for.  She was a white-girl, an English Pointer mix, and I wanted a smaller, black & white, Boston Terrier.  When Roxy saw us, she jumped up and down like Donkey in Shrek saying “pick me, pick me”.   She had the I-want-to-please personality and immediately sat in Jessie’s lap and kissed her, which made it a done deal.

Jess is still insisting, DEMANDING that I stay with her when she goes to bed.  Last night I asked her if she would like Roxy to stay with her instead?  Both Jess and Roxy gave me a watcha talkin’ bout look.

As anxious as Jess has been about sleeping alone, Roxy was feeling the same way about changing her routine.  Since this was new to both of them, I was needed to chaperone.

It occurred to me that this was Jessie’s first girl’s sleep over!  There was lots of giggling and wiggling and stories told.  For a moment, I feared this wasn’t going to work, but eventually they settled down and drifted off to sleep.  I made my way back to my room and everyone slept happily ever after. 

The next morning, we woke to kitties in the bed and snow on the ground.  Jess had a lot to talk about over breakfast!  Hopefully, this new arrangement will resolve everyone’s problems… crossing my fingers and praying to God it does.

Making applesauce

It has taken some practice, but Jess is finally getting the hang of peeling apples. 

Her first attempt, she peeled half an apple before walking away.

The second attempt, she’d turn the handle in the right direction, but the middle of the apple there was more resistance and  she’d reverse the direction.  This is a simple tool and going backwards doesn’t work well. 

Today was her third attempt.  By Jove, I think she got it!  Still not perfect, we are going in the right direction. 

Jess carried the pot of apples to the stove and went to town adding the cinnamon.  We are still working on portion control.

The first thing my Mom taught me to cook was applesauce. It was quick, didn’t require a recipe and kept the attention of my seven-year-old self.  The best part was eating the fresh sauce while it was still hot! 

Mom’s method was to cut up the apples, add water, bring to a soft boil, cooking till fork tender.  When the apples finished cooking, she then used a Foley food mill to remove the skin, making the sauce smooth and then would add the rest of the ingredients.  Some people like to leave the peel from red applies because it gives the sauce a blush color.

Instead of using a food mill, we prefer an apple peeler. I like to get the work done up front and it is more fun for Jess to use.  The peeler removes the core and 99% of the peel.  Add a couple of cups of water, a hint of brown sugar, a dusting of cinnamon, a splash of lemon juice and a few grains of salt.  Soft apples like Macintosh don’t take long to cook.  Finish using a potato masher.

Maybe by apple season, when the fruit is plentiful, we will go into production.  Jess just might make her own Christmas gifts for 2017.

Jess needs lots of encouragement to build her confidence.  I love how Jess grabs another apple at the end.  She makes me laugh.

New activities encourage her to use her Talker more.

The best part about cooking together is our conversation. Jess does more talking when we are doing something fun, especially when it involves food!.


Call me mom, call me exhausted…

I’ve come to the realization that our life is a cross between Seinfeld’s bizarro world and Mystery Science Theater*.   Where the majority of our friends are becoming empty nesters, planning their flights of freedom, we are firmly planted on the ground with a third wheel.  Just as we were seeing glorious independence, Jessie crashed, forcing us to be grounded. 

Little bird didn’t break a wing, but she might as well have.  Jess has been having sleep issues since the beginning of the year.  Actually, she doesn’t have trouble sleeping, she just doesn’t want to be in her room alone.  It’s a mystery as to why now would Jess suddenly need her mom?  Anxiety, constipation, seizures or effects from a full moon?

When Jess was a baby, she comforted herself and went to sleep without a hitch.  Now the only person that gives her comfort is me and that is turning me into a sleep disturbed mom.  I’d use stronger language, but am not in the mood to rhyme.

The other night, as I headed for bed, I found Jess sitting in an arm chair, in the dining room.  She jumped up and gave me the look. Full of anxiousness.  She placed her hands on my shoulders, looked me in the eye and reached up to remove my glasses. During the day, she insists that I wear them, but when they come off, it’s a sign that it’s time to turn in.

I know this look.  I’ve seen it these last few weeks.  I walked her to her room.  She gets  under the covers and settles in, but as soon as I turn to leave, she scrambles out of bed, bolting for the door. 

Out of desperation, I’ve resorted to telling her to move over. She’d then flash me a loving, peaceful smile.  When the snoring begins, I tiptoe out.  The rhyme “step on a crack, break your mother’s back” comes to mind.  Jess wakes up and we have to start the process all over again..Damn you squeaky floor boards!  (Husband, I’m adding this to your honey-do-list).

Eventually, I make it to my room. Husband is snoring, everyone is asleep but me. A few hours later, around 2:30am, Jess takes herself to the bathroom. She then looks for me. Imagine that I’m in my own bed… she insists I return to her room and I’ve complied.  All I want to do is sleep. All she wants is to be comforted.  This system has worked for awhile, but it was only meant to be a temporary stop gap solution.

While in the midst of this non-sleeping-mystery, we decided to try Charolette’s web.  We had nothing to lose.  I sought out info from mother’s that I know who’ve had success. (for seizures, as well as processing issues).  Jess had a drop in the morning (which made her sleepy) and a drop before bed time. 

The first few days, we didn’t notice a change, but on the fourth, Jess had her best day ever!  She connected all the dots without hesitation. There were no processing delays and she was an eager, willing participant.  It was remarkable!  Unfortunately, it lasted only a day.  Slowly her attitude deteriorated. Even worse, for the first time, Jess stopped using her Talker.  It became obvious that this was not going to perform any miracles for us. There wasn’t suppose to be any residual effect, but It took her a few days to return to her center.

It’s been a week since she had the CBD oil. Last night was the first night Jess slept in her room alone.  This didn’t happen without a lot of drama.  Even when she took herself to the bathroom and insisted I return to her room with her,  I stood my ground.   Enough is enough.  I’m sure she will try to wear me down again, but I have to break the pattern. I predict the next few nights are going to get worse before they get better.  Jess is very hard headed and stubborn, but so am I.

Some day, I’m sure she will tell me what caused this, but for now, it will remain a mystery.  All I can say is that this game show host is not going to break, she’s just tired.

*Forced by evil scientists to watch bad “B” movies until he breaks, a host (Joel in the early years, Mike later in the show’s run) and a bunch of captive robots comment on the films in order to keep sane.

My perfect Valentine

They are beautiful!

If there is such a thing as a perfect Valentine’s Day, it would be like this:

  • There would be extra hugs and kisses.
  • We’d start with breakfast together.
  • We would each receive a thoughtful, homemade gift, or something that would delight the other person.

Sigh….some of us rose to the occasion and someone phoned it in (and I won’t mention names).  Two out of three ain’t bad.

Not to be ungrateful, but for years I’ve let it be known that I don’t care for candy or flowers. Thank goodness they weren’t roses, but more like daisies, which are my favorite.

This year, what I really wanted was that jar of dates that we saw at the market.  Not the kind you eat, but filled with notes with ideas for dates!  At this stage of our marriage, creativity is what’s needed, not more stuff…sigh

My gift was food, I served stuffed grape leaves, pita bread, Labneh and salad for dinner, all which was homemade. This took time and effort and I knew it was what, whose name I won’t mention, enjoyed.  Will share recipes in another post…

Hands down, Jess was the Valentine’s winner this year. Not only did she come home with a card she made, but she had a break through at her program. Over lunch, Meghan started the conversation by mentioning to the group that Jess wasn’t sleeping in her room.  She said “your mom thinks it’s because of the movie ET”.  The rest of the group told her she shouldn’t be afraid, it’s just a movie. Jess sat and listened to everyone before replying on her Talker “isn’t movie”.   Meghan shared this conversation with me because she knew we were trying to guess what was bothering Jessie. I loved the fact that Jess was discussing this with her peers.

That afternoon, I told Jessie that I heard that ET wasn’t the reason she wasn’t going to bed at night and she nodded yes.

“Did your friends make you feel better?”, she said yes.

“So do you think you could try and sleep in your room tonight?”, she said “yes” on her talker and then looked at me.  That is the sign that she means it.

After a month of avoiding her room like the plague, Jessie settled in her bed. I wasn’t planning on her wanting me to stay with her.  We watched TV for a little bit before she fell asleep. 

At 10:30, I tiptoed back to my room. Felt good to snuggle in my bed.  Unfortunately, Husband was snoring, so I tiptoed to the guest room.  And this was how I spent my Valentine’s night!  

Believe it or not, I was happy.  Finally, Jess was sleeping in her own bed. The next night I had to stay with her till she drifted off in slumber and was able to return to my room.  

Maybe someday, Jess will tell me what all of this drama was about…but for now, I’m happy that we are all getting a good night’s sleep!  When it comes right down to it, sleep is the best gift of all.

PS-  Husband, I LOVE YOU!

If you have to go shopping.

Typically, we don’t run errands on the weekend. I hate crowds and traffic and especially hate standing in lines, however, yesterday we were out of cheese….  If you need cheese, you probably are going to want some crackers to go with it.  If you are an adult, you are bound to want some wine too.  Even though I began with a list, I kept thinking of other things we needed, like coffee, gas for the car and deer repellant.

This is not my photo, but if I had a dog bed outside…

Because the ground was snow covered, the deer started munching on the bushes by the front door.  We enjoy their visits, but they will eat all available vegetation down to a nub, a gardener’s nightmare!  Husband banged on the window to get them to move along, which they did, on to the bird feeder.  Fortunately, the birds didn’t leave much seed behind, so the deer kept moving.  They didn’t go far. 

The next morning there were snow tracks that led to the back of the house and there were six grassy spots for the two moms and their four kids of various ages. The warmth of their bodies melted the snow.  I was surprised how close they slept to the house. 

We do share our property with the deer and many other critters. I’m okay with them spending the night, but prefer not to feed them dinner, so it was imperative to add deer repellant to the shopping list.

the grassy spots are where the deer slept

Three pit stops later, we headed home, but then decided to stop at the local market for milk so I could make yogurt. Sometimes I suffer from that “just one more thing disease”.  While in line, the cashier asked Jessie what app did she have on her Talker?  Oh my goodness!  Someone actually recognized her AAC device! (why it’s Speak for Yourself of course!) This is a first for someone to know it wasn’t a game.  I kind of wished she asked Jessie “how are you?” instead, but it’s exciting to witness awareness when it blossoms.  Needless to say,  I was thrilled and Jess was proud.

If Jessie is not feeling pressured or rushed, she will answer questions on her Talker.  She’s doing her part about raising awareness, I hope everyone that is reading this is raising awareness too.  My motto, the more people that know that iPads are used for talking, the bigger our world gets!

P.S.-  The deer don’t like how the bushes smell and there was no wine with my cheese, but we did enjoy the crackers that went with it.

I wonder if one of these was the fawn that visited us one spring?

Time to seek professional help

There are many things that keep me up at night.  Sometimes I can’t stop my brain, sometimes it’s the full moon, but at this moment, it’s Jessie.

For the last three-weeks, Jess has not been able to sleep due to unknown causes. 

At first I thought she might be having seizures, but that doesn’t seem to be the case.  Then she appeared to have a 24-hour stomach bug, no fever, no remarkable symptoms, except that she was leaving her room alarmed.  Something was causing her to work herself up into a tizzy, something was very wrong and we are baffled.

Jess had not been regular and was thinking maybe that is causing her distress, so, we changed her diet.  We stopped milk products, cheese and homemade yogurt thinking this was binding.  At the same time, I added a fiber supplement.  The end result was her system slowed down even more.

This all seems rather logical, but I made three big mistakes.  By removing the yogurt, I reduced the digestive enzymes.  Adding the fiber would have been good, but she wasn’t drinking enough liquid to have it work properly. Finally, changing a diet suddenly does not give the body time to adapt.

Whenever Jess is not 100%, I review the previous six months to see if I can find a cause.  Doctors haven’t been much help. They focus too closely on her Angelmen Syndrome and this overshadows their judgement.

My review reminded me that Jess’s system slowed down after we traveled last fall. She had a healthy, varied diet, but she wasn’t drinking very much.  By the beginning of January, she was not herself and this was when I started to make changes.

So here we are and I’m just as bewildered.  For the first time ever, Jess refuses to go to her room at night.  She won’t even watch TV in her room and we both ended up on the couch together.  When I lamented about this to a friend, she suggested changing rooms. Brilliant!  We are now in the guest room.  Jess is sleeping like a rock, however, she doesn’t want to be left alone.  This is so not like her. Typically she tells me to go so she can be by herself. 

There is one more piece to this puzzle. Recently on Netflix, they added E.T.   Jess has a history with this movie.  All she has to do, is hear a few bars of the music and her eyes get big and her lip quivers.  Just like my mom warned me not to watch The Blob, I have advised Jess to not watch this movie, but she’s a rebel.  She’s at the age where she thinks mom doesn’t know what she’s talking about…sigh…this may be partly true, but I do have a bit more life experience and shouldn’t be completely dismissed!

As much as the diet change has caused issues, I’m afraid that she is having nightmares and is afraid that she will be abducted by aliens.  Sure, this may sound far fetched, but we all have fears.  I’m afraid of heights, my sister is afraid of spiders and Jess is afraid to be alone because her imagination has gotten the best of her.

For now, I’m blocking her on Netflix and am being more careful about making sudden changes to her diet. 

On a side note, there are people in the AS community who are following a diet that is being led by someone who is learning as she goes.  Recently, one of the followers ended up in the hospital with severe constipation.  That should have been the first clue that the diet was not working and the diet was not balanced for her child.  It’s dangerous to not have professional guidance, especially when your dealing with someone who has a seizure disorder.

Some families have had success with the LGIT diet and others do well on the Ketogenic diet, however, they are being monitored by dietitians. They typically have blood work done before participating.  We have not gone this route.  Jess has been off all seizure meds since her late teens, so a strict diet didn’t seem necessary, however, there may be a modified version that will work for her.  Time for professional help…and for my friends that are reading this, I don’t mean that kind of help, I can hear you laughing…lol

Small talk leads to big Talk

After listening to my mother and I chatting, my father once said “the sum of your conversations is nothing”.  Well, maybe it was, until it wasn’t. Often Dad would listen and then ask us to repeat something when he heard a tidbit that interested him.

In my father’s defense, even though he wasn’t interested in the daily minutia, he loved learning. Dad also enjoyed sharing a good story. One of my favorites was about his serving in the Navy. He was on the aircraft carrier the Shangri-la.   He told us about the time he had received a letter from a buddy who was in the army and was complaining that the food was cold. Dad replied using the back of the ships menu for stationary.  As much as his friend enjoyed the letter, he re-read that menu.  I need to share this story with Jessie. Dad passed a month before she was given the Angelman Diagnosis, just as she turned 13.

In order to captivate someones attention, you need to talk about something that intrigues them. Even though my father wasn’t fascinated by woman’s small talk (my husband falls into this category) that doesn’t mean these conversations aren’t important.

When Jess was little, on rare occasion, she’d pop out with a word or short phrase. I assumed that she was going to talk. Even though this never came to be, because of my belief, I never stopped talking to her. Our longest conversations were had on long car rides and to this day they still are.

While driving, there are no outside forces to interrupt us. If a good song came on the radio, I would look at her and she would turn up the volume. While I sang like a cat, she’d bop her head to the music.

In between the songs, I’d talk about where we were going, who we would see and share stories.  Sometimes Jess listened with rapt attention, but she often drifted off to her own thoughts.  As I write this, I’m realizing how much she is like my Dad.  If I say something that is of great interest to her, she becomes completely engaged.  She is also in inquisitive like he was.

Now fast forward 25 years. Our story is slightly different. Jess is still not one for small talk and we don’t make conversation per se, but she is beginning to open up more.  What’s difficult for Jess is that most everyone she meets has never met anyone that uses an AAC device. This means that at home, we need to step it up. Even though I’m talking and she’s tapping her words, her conversations broaden when I use a Talker too. I’m reminded that I should speak her AAC language on a daily basis…. I need a kick start.  This week we began the 12-week AACtion plan challenge but we are doing an accelerated version. Initially, this was to help make me become a better communication partner, however, this time I thought we should do this together.  Thank goodness, Jess has better Talker skills than I do.

At least this exercise gives us more to talk about.  Jess gets satisfaction when I have to search for a word, especially when she can find it easily.  What I am careful about is to not make her feel like she is being tested.  I don’t have her repeat the words 10x like they expected at school, but rather follow her lead and repeat once or twice.  I’m the one that needs the repetition.

There’s an aspect of SFY that often gets overshadowed by other features. The symbol  initially helps you find the location of a word, but the word is also found above the symbol.  At dinner last night. I thought I was being clever and spelled to husband S-A-L-A-D because I wanted Jess to eat her dinner and not just salad.  Jess immediately tapped “salad”.  Then I asked her, “did you say that because of what I spelled?” and she immediately replied “yes”.

Jess has never been taught to read.  Of course, we sang the alphabet and tried to read to her, but due to her three second attention span that wasn’t very successful.  What is note worthy is that even though I didn’t think she was following along, she was. Even though she didn’t give me any indicators that she understood, she did.  When using an AAC device, hearing the word models language and seeing the written word is helping with literary skills.  How exciting!

I’ve had a few conversations recently with other  Angelman mothers who told me that Jess is doing so much more than their child. It’s important to remember that I’m careful what I write about when it comes to Jessie and her challenges.  This is her story and I’m privileged to share it. Because of this, a lot is left to the readers imagination.  You need to know that we struggle and I share so she might inspire you to keep an open mind.

What most don’t realize is where Jess started from.  Jess’s path reminds me when I was in 5th grade. I remember not understanding something in class, but when it was reviewed in 6th grade, suddenly I got it.  This seems to be Jess’s road too, but it’s taken her years rather than months.  It’s so important to reintroduce things where they have failed.  It might not be the second or tenth time they find success, it may take 500x.

It’s been a long, long, long road, however, I believe that it was our small talk that kept Jess thinking and her big Talker that has changed her path forever.

Just keep talking, just keep Talking…they are listening!