Fringe benefits!

What do these words have in common?

  • Horses
  • Chicks, Ducks, Geese
  • Surrey
  • Fringe
  • Shutters, Eyes, etc…

They are core words from the song “Surrey with the Fringe on the Top”. If Curly sang the lyrics using only fringe words, there wouldn’t be anything to sing about, however, It’s the fringe words that makes the song memorable. No pun intended. (The lyrics are at the bottom of the page. Descriptive language enables you to visualize as he sings.)

Why is this important? It’s important because we begin AAC with core words but often fail to introduce a fringe word vocabulary soon enough. For years, SLP’s asked what interested Jess. They wanted to program words that motivated her. I realize now that they only got it half right. They were focusing only on core words but without the fringe words, Jess lost interest and the AAC novelty wore off.

Jess had unsuccessfully used over a half-dozen AAC systems before finding Speak for Yourself. What made this app different from the rest? The Babble feature. She began with a half dozen core words open, but when she tapped Babble, it opened all the words that had been preprogrammed into SFY, core and fringe. Babble is a not so secret passage to a world that is language-rich and robust.

The first fringe word Jess opened was “exceptional”. For her, this is when the light went on. This is what had been missing. Everyone has their own vernacular and Jess is no different. She doesn’t want a hamburger, without condiments and she definitely wants ice cream with toppings! The fun is in the fringe.

To think, for many reasons, we nearly canceled our appointment to preview SFY. The most obvious reason was, I felt the words were too small (I was wrong). Jess could not isolate a finger and had the attention span of a gnat. Her AAC eval said she was not a candidate for any app that used an iPad (they suggested TouchChat because it wasn’t complex and the words were bigger. Because nothing else had worked, we didn’t have anything to lose by exploring.

What I know now that I didn’t know then is though the barriers were real, they were not permanent.

Adaptation is the key to success. Jess began with a full-sized iPad with a key guard,. She needed a stand because she couldn’t close her hand, her fingers would dangle, resulting in miss hits. She also miss hit a lot of words because her eyes were not WYSIWYG. In other words, she had no eye/hand coordination. However, when she finally did tap the word she was seeking, she’d stop and look at whoever she was with, expressing, “that is what I’ve been trying to say”.  When her needs were understood, this motivated her to practice (she’d go to another room and we could hear her modeling to herself. She’d play with the iPad like it was a game of Concentration. What we didn’t realize at the time was she was learning word placement). As important as any other feature, the iPad needed to be portable and hands free. Doesn’t do any good when it is put away in a book bag. All of these things were adaptations needed to be made in order for her to be successful.

Before the nine-month mark, her attention span grew and her fine motor improved. Presently (4 1/2 years later), Jess steals my iPhone when I’m not looking and opens apps, watches movies, podcasts and even will use tiny SFY (the iPhone version).

The problem with AAC apps that start out with larger words and scale down when they need room for more vocabulary is this changes the motor planning. This may not seem like a big deal, but the user needs to re-learn location.

Why am I writing about all of this now? It’s because a friend’s daughter was just told that they either get PQ2Go or get nothing. Because any program will fail if you don’t support it correctly. Because when you keep changing the button size, you mess up the motor planning. Because an AAC should have a robust language already programmed, ready and available. It’s so much harder to guess what words you think they may need and time consuming to add them.

And… because a surrey is more interesting when it has a fringe on the top!

Go ahead, sing this without the fringe words, or open the link at the top for the video, you will get my drift.

Surrey With the Fringe on Top lyrics

Curly:

When I take you out tonight with me

Honey, here’s the way it’s gonna be

You will set behind a team of snow-white horses

In the slickest gig you’ll ever see.

 

Chicks and ducks and geese better scurry

When I take you out in the surrey

When I take you out in the surrey with the fringe on top

Watch that fringe an’ see how it flutters

When I drive them high-steppin’ strutters

Nosy pokes will peek through their shutters and their eyes will pop!

 

The wheels are yellow, the upholstery’s brown

The dashboard’s genuine leather.

With isinglass curtains you can roll right down

In case there’s a change in the weather

 

Two bright side-lights winkin’ and blinkin’

Ain’t no finer rig I’m a thinkin’

You can keep yer rig if yer thinkin’ that I’d keer to swap

Fer that shiny little surrey with the fringe on the top

 

Eller:

Would you say the fringe was made of silk?

 

Curly:

Wouldn’t have no other kind but silk!

 

Laurey:

Has it really got a team of snow-white horses?

 

Curly:

One’s like snow, the other’s more like milk.

All the world’ll fly in a flurry

When I take you out in the surrey

When I take you out in the surrey with the fringe on top.

When we hit that road, hell-for-leather

Cats and dogs will dance in the heather

 

Birds and frogs’ll sing all together and the toads will hop!

The wind’ll whistle as we rattle along,

The cows’ll moo in the clover

The river will ripple out a whispered song,

And whisper it over and over 

 

Don’t you wish you’d go on forever

Don’t you wish you’d go on forever

Don’t you wish you’d go on forever

 

And you’d never stop?

In that shiny little surrey 

With the fringe on the top.

I can see the stars gittin’ blurry

When we ride back home in the surrey

Ridin’ slowly home in the surrey 

With the fringe on top

I can feel the day gettin’ older

Feel a sleepy head near my shoulder

Noddin’, droopin’, close to my shoulder 

Till it falls – kerplop.

 

The sun is swimmin’ on the rim of the hill

The moon is takin’ a header.

And jist as I’m thinkin’ all the earth is still

A lark’ll wake up in the meader.

Hush, you bird. My baby’s a sleepin’

Maybe got a dream worth a keepin’

Whoa, you team an’ jist keep a creepin’ 

At a slow clip, clop.

Don’t you hurry little Surrey 

With The Fringe On the Top.

Modeling is forever

If I expect Jess to be part of the conversation, I need to speak in her language. This isn’t because she doesn’t understand what is being said, but because it puts us on the same playing field.

A casual verbal conversation is between 110 to 150 words per minute. Jessie’s conversations are much more succinct. If she’s on a roll, she’s closer to 25-30 wpm. This huge gap creates a communication divide. 

When I model in her Speak for Yourself language, our conversations are evenly paced. Not only that but she’s much more willing to volunteer information.

It’s become obvious that modeling language will never end. Though I model every day, I realize that I’m not doing it enough. Short bursts of modeling do not equal a whole conversation.

Modeling is an integral part of our life. I’m afraid it’s easy to fall into the trap and think “I will model till my child starts talking and then I won’t need to”.

Just as we don’t stop talking to a child that is learning to be verbal, we shouldn’t stop modeling AAC either. Modeling AAC isn’t just about building vocabulary or answering requests, the ultimate goal is to have a conversation.

I must confess. I don’t model when we have company, which means inadvertently, I’m excluding Jess. My only consolation is at least I’ve recognized an area that needs improvement.

Another aspect for me to remember is what Jess told me the other day.  After denying her repeated requests, she said,

     “I’m 25 years old” and then proceeded to tell me what she wanted.

I modeled my response,

     “Well Jessie when you put it that way, how can I argue? 

And then, we were both happy.

Modeling is forever.

 

Mama’s got a brand new bag!

On Friday, when Jess returned home, she greeted me by holding her Talker like it was a dangling fish on a line. The strap had broken. As much as I love the iPad, I hate the cases available to us. Every AAC device we’ve had has had the same issue, they break where the strap attaches to the case. Unfortunately, this problem needed to be resolved quickly or Jess would be without a voice.

It’s important for her to be able to wear her Talker. This allows hands to be free, as well as, immediate access to the iPad. The carrying strap is my insurance that she won’t lay her Talker down and forget it like it was a set of keys. This doesn’t mean Jess hasn’t taken her Talker off from time to time (I highly suggest setting up the Find Phone app) but since she started wearing it, I have yet to find the Talker in her backpack after being out for the day.

The iAdapter was her first case. At the time, it was the Cadillac of cases. It had a stand, built in speakers, a carrying strap and appeared to be robust if dropped. The downside is it’s bulky, expensive and it too has strap attachment issues.

When the iAdapter warranty ended, I was tempted to get another one, but just like an old boyfriend, you remember why you broke up. We chose the Otterbox instead. This case has proven to be robust, but let’s just say the strappy is crappy.. I don’t believe that the carrying straps were meant for such heavy use, thus the design is less than desired. My best guess is that most people either hold their iPads in their hands, or it’s put in a bag until needed

I have no issue with the Otterbox case itself, but I must figure out how to adapt a new carrying strap. My best solution was to sew something. There is a company that makes bags, but I see a major flaw in their design and we couldn’t wait. Sometimes knowing what you don’t want is just as important as knowing what you do. I knew I could build a better mousetrap.

Initially, I thought I could rework a bag we already had and be done with it but quickly realized that new construction is much easier to manipulate than old construction. I scrapped this idea and began from scratch. 

Now that the first prototype is complete, I know how I can streamline the process and produce a slicker looking product. 

Who knows, maybe Jess will want to embellish her own bag? Instead of wearing a boring iPad, she can now make a fashion statement!  

Post title inspired by James Brown

Modeling exposes secrets

Just like her father, Jess only feels chatty when she has something to say. In order to get her to spill the beans, you have to know how to prime the pump.

This morning on the porch while she was waiting for her ride, I peppered her with questions on my Talker.

“What are you thinking about?”

“a secret”

pause…”Are you thinking about a boy?”

“no, two”

“What do you like about them?”

“conversation”

I’m aware who Jess fancies and was made privy some time ago. Jess prefers the company of boys that enjoy talking to her. Who doesn’t?  I imagine that when she enters a room, she’s received like Norm at Cheers. The boys have a way of making her feel special and let’s face it, I’m far less amusing.

We talked some more before her ride arrived. I knew she was going to have a good day. Hopefully, she will share more upon return.  Who knew that modeling would pry information out of her? Hmm…maybe it will work on the husband too!

Phoenixville, a vibrant community with a small town feel

This is my version of a travel log:

One of my favorite murals in town.

Getting away doesn’t require traveling far. I’m fortunate to be able to visit a friend who lives an hour away.  My gas tank was full, the car had been washed and serviced, I was ready to go. Turned the radio on, had the GPS ready to assist, adjusted the mirrors and didn’t look back as I headed out of town.

There wasn’t a lot of traffic, but it thickened at rush hour. As I was nearing my exit on the Turnpike, I couldn’t help but notice that the eastbound lane was bumper to bumper. I said to myself, “I’m so glad I’m not driving in that”!

The final leg of the drive goes through Valley Forge. Seeing open fields and rolling hills create a sense of tranquility which is exactly what I was looking for this weekend. At this point, my phone said I was to arrive in 22 minutes. I was making great time!

Just as I was about to enter the park, Siri told me to make a turn. I questioned this but did as I was told. I had assumed I was being redirected due to road construction but immediately realized something else was wrong.

“They say” our smartphones, as well as computers and TV’s, are always listening to us. I’m convinced Siri purposefully rerouted, forcing me to backtrack so I could drive through Friday’s rush hour traffic. Not only did she eavesdrop, which is rude, but she completely misunderstood. Though I acknowledged the oncoming traffic by talking to myself out loud, it wasn’t my intention to have Siri change my route.

I cursed her. When traffic had me stop, I glanced at my phone and the route showed squiggly lines resembling a clover leaf, all in the wrong direction which made no sense.

I cursed some more.

I don’t know who is a bigger idiot, me or Siri. As they say, fool me once, shame on you, fool me twice shame on me. This isn’t the first time Siri has played mind games.

Now, my new estimated time of arrival was 55 minutes. Unfortunately, I was at Siri’s mercy.

Thirty-three minutes later, she brought me back to where the errant turn was made. Again she wanted me to turn before entering the park but I didn’t fall for it this time. Twenty-two minutes later, I arrived at my destination a little worse for wear. My friend had a light dinner ready and waiting.

Following the wisdom “if you give a mouse a cookie”… if you are going to have pizza, you need a glass of wine to go with it. Now my mommy retreat could officially begin. 

Knowing the following day would be full, we turned in early. The stormy night made for restful slumber and cleared the way for a glorious day. When it’s sunny and warm, no humidity and there’s a slight breeze, I call this delicious weather; it’s so good, you can almost taste it!

On Saturday, our plan was, there was no plan. We were just going to let the day unfold. The best part of getting away is not to be restrained by a schedule. Living on a timetable exhausts the soul.

After coffee and a sticky bun, we ran errands, stopped at a fundraising car wash for the local school and then headed to town to window shop. 

Another mural of a Phoenix

The Riverworks has indoor rock climbing.

We then stopped in to check out Riverworks apartments. They were having an open house. Not that I’m looking to move but I do enjoy seeing how living spaces are staged.

Though this is lease-living, the amenities gave you the feeling you were in a well-appointed hotel. The lower level had generous, inviting, open spaces, a state of the art work-out room which included a rock climbing wall. Even the outdoor pool gave that resort feeling. To top it off, Riverworks is pet-friendly.

Unfortunately, they do not allow “all” dogs. I’m going to go on a rant here. The problem isn’t the dog breed per se but the owners. If the owner is permissive and allows their dog to run amuck, then someone’s  Black Lab, Rottweiler, Shepard, Doberman, who have not been properly socialized or trained, can be a problem too. One way to resolve this is by having the dog be tested in a similar fashion as a therapy dog. This will weed out the owners who have dogs they can’t control.

When I was a teen, I babysat an Airedale Terrier. She let me in the house but growled when it was time for me to leave. I love dogs but I felt threatened. I’ve even known a few bad tempered Golden Retrievers. People hate it when they are discriminated against and I feel the same way when it comes to dogs. Ignorance just makes me irate. I guess this has my hackles up because I just spent the weekend with the loveliest, sweet natured dog who happens to be a Pitt Bull.

 I was smitten with her as soon as we met. Rant over…

After Riverworks, we walked to the Colonial Theater to see “Paris Can Wait”. The theater had been renovated and returned to its original glory. It’s a little gem. The matinee was reasonably priced at $7. They offered beer and wine, but I settled on the freshly made popcorn instead. I’m not a lush!

The movie matched my “don’t rush me” mood. It was reminiscent of the films shown in a high school French class. Not only can Paris wait, but so will you for this film to end. This is not to say I wasn’t amused, however, it was a typical Diane Lane movie. It had the same pace as Under the Tuscan Sun. On a positive note, it was a visual feast, literally. In the Instagram genre, the movie had close-ups of each dish that was served. Being a Foodie, I wish they gave a fuller description so I could recreate the meal at home.

As we were leaving, the crowd was ambling in to see Jaws. Many were holding what looked to be pink cocktails, garnished with great white sharks.  Fun!

Now that our palettes were whetted, we walked across the street to a restaurant called Taste. All vegan, all yummy, very pretty. I especially enjoyed their freshly pickled, tarragon flavored veggies; asparagus, celery, green beans, and cucumber.

Rose, the patron mascot at The Diving Cat Gallery

The pet store’s mascot

The earlier window shopping led to purchases. Getting a jump on Christmas is always satisfying.  The Diving Cat, a whimsical gallery, was full of unique items. The store owner is especially charming and gracious. He offered wine. I’m just beginning to realize that Phoenixville is a drinking and eating town!  As nice as he was, I was especially enamored with their very beautiful kitty. She must keep the riffraff out. I wonder if she’s friends with the kitty that lives down the street at the pet store?

The day was turning into a moving feast. From here, we walked to Sipps, a local hot spot. Happy Hour was pleasantly busy. I enjoyed sitting at the bar with my glass of seltzer. We caught up with friends, chatted about our adventures and people watched.

Such a beautiful day to meander through town. Time to head back to the house. So I wouldn’t forget (I often leave something behind when I travel), I immediately moved the shopping bags to my car. Feeling self-satisfied with my efficiency, I locked the door and went inside the house.

While standing in the kitchen, talking, I glanced down at the bag I was holding. It was not my black pocketbook but a small black shopping bag of similar size and weight. This could only mean one thing, I locked my pocketbook in the car with my keys and phone in it. Oy! Was my perfect carefree day to be marred because I wasn’t paying attention? I hadn’t even been drinking. Imagine the horror if I had?

Five minutes after calling the local police, an officer arrived to help. With the aide of some wedges and special tools, he was able to get my car unlocked within 15 minutes. This was too much drama for my quiet evening but thank goodness it turned out not to be an ordeal. Note to self, call the Officer in Charge on Tuesday to commend the officer that cheerfully helped me out of my jam.

While we were breaking into my car, my friend made a yummy dish for dinner, Risotto with fresh mushrooms and artichokes. Instead of rice, she used millet. I love it when I get to taste new recipes. After seeing Paris Can Wait, I felt like this was life imitating art.

Fortunately, the rest of the weekend was uneventful. I headed home the next morning feeling refreshed. Shaking up my routine is just what this mom needed. Not only do I feel better but the family always seems to appreciate me more after I’ve been gone. It’s a win-win.

The lesson is, peace of mind can be found not so far away. Taking time for yourself is a gift that everyone gets to enjoy. I’m not sure what part of their enjoying my being away my family liked but will assume they were happy to see me upon return. 

 

PS- Thank you Lisa and Jack for taking this weary mom in, and for your generous hospitality. It was a fun start to summer.

What dreams tell us

This morning I woke up annoyed with the husband. It was due to a dream. Dreams often have a wisp of truth but should not be taken verbatim. I really wasn’t upset with him but as I rubbed the sleep from my eyes, I couldn’t shake my annoyance.

Last night we had a guest join us for dinner. Husband was oh so chatty and charming. I’m sitting there looking at him, “who is this man?”. Over the years, though always charming, he’s grown quiet. I’ve been known to encourage him to have “two-beers” to loosen his tongue but didn’t need to resort to this tactic. Having company sparks chatter and thank goodness that is even more effective than the two-beer method.

Lack of conversation frustrates me on multiple levels. First of all, I work alone and am not with people much during the day. Second, with Jess being non-verbal, she benefits from a language rich environment. Unfortunately, it’s a constant effort to maintain. Our family is in a rut.

Of course, the two-beer method doesn’t work on Jessie. She doesn’t drink and it’s not an appropriate crutch for anyone. No one should start their day off with brewskies! Except maybe if you’re vacationing in the Keyes and Jimmy Buffet is playing on the radio, I’ve seen commercials with two Coronas sticking out of the sand next to a lounge chair, the people have their feet in the ocean and you can hear the waves gently lapping at their feet. It’s a nice vision, great marketing but I don’t need the beer. Anyhow… I realized how much Jess and her Dad are alike in this regard and how I need to employ healthy tactics to foster conversation.

This morning, Jess, Roxy and I sat on the front porch waiting for Jess’s ride. It helps to be somewhere quiet, where there aren’t many distractions. I love these morning chats. I asked her if she wanted to go swimming? Was surprised she said no to the pool but rather go to the market and the dog park instead. I made a miss-hit while modeling on my Talker. When I made the mistake again, I said: “oops, I did it again”. She thought this was hysterical so I added that phrase to her Talker. Every time a new word is added, it’s a catalyst for her to talk and her world gets bigger. No doubt, Jess will be saying that phrase a few times today. She naturally practices the motor planning, committing it to memory.

When Jess talks with her AAC device, it’s a release. She’s less frustrated after sharing things that are important to her. She needs to practice the art of conversation with us. It’s much harder to speak in front of a group.

Why is talking so important? It allows minds to meet and weeds out assumptions. People see her differently after they hear her thoughts. Being able to talk is just something that most of us take for granted. 

I realize that my role is to be a facilitator. I’ve known that this was vital for Jess, but apparently, husband expects me to do this for him too. They both are relying on me to spark conversation. Fortunately, I have a story for tonight.  After Jess left, Roxy and I stayed on the front porch. A squirrel caught her eye, I told Roxy to be quiet, sit tight and wait for the right moment.  Even though Rox was trembling with anticipation, the squirrel didn’t notice her. It helped that we were downwind. When the squirrel was on the ground between the trees, Roxy seized the moment. The squirrel headed for the cherry tree scrambled up to the top and made a leap to the next tree. It missed and fell right on Roxy! I wonder if squirrels dream? Would this be a nightmare?

If we let them, dreams can guide us. When we are awake, we are given the opportunity to rewrite them. 

Mine is to encourage my family to communicate. For Roxy, I’m sure she will be planning on how to get that darn squirrel. We shall see, maybe the third time will be the charm.

Marty’s song

Yesterday there was a reprieve from the rain. It was breezy, bright and sunny. You know there’s been a lot of rain when you start talking about the sun. Yet, for us, it was a somber day. One of our most favorite people left this earth. Marty was one of my husband’s best, childhood friends. They had been neighbors but grew up more like brothers.

Over the years, we’d see Marty and his family on social occasions. I always knew he had a big heart but it wasn’t until I started writing this blog did I get to know what made him tick. As a special needs parent, when someone goes out of their way to learn and understand your path, there is an extra intangible sense of loss. I felt the same way when my husband’s mother passed. She was an advocate for Jess before I understood what that meant. There were too many unknowns for this young mother and it made me anxious. 

I fail miserably when it comes to telling people how I feel about them. I’m relieved for Marty to be set free from pain and I pray that he is watching over all of us but I regret that so much was left unspoken. You never quite realize how much someone impacts your life until they are gone.

When I heard the news that Marty passed, I told Jessie. She doesn’t mourn. Her memories take precedence over emotion. Maybe this is because she doesn’t see someone on a daily basis, there is no sense of finality? Jess accepts without showing loss, however, mention a person and she will quickly find a photo. In those moments, we share stories and their spirit lives.

We tried to have a typical day. In the afternoon, Jess asked to go to the dog park. I don’t have to ask Roxy twice. Just like taking a child to the playground, it’s more fun when you know your friends will be there. It’s the same for Roxy. She has a core group she likes to run with.

As the sun was lowering, it began to turn cool. Jess had a pool party and dance that evening. It was the season’s final event. Too cold to even think about swimming and I wasn’t looking forward to going out again. As we left the park, I attempted to cop out. I gave Jess a choice, “Burger King or the dance”. Without hesitation, she said Burger King. I said, “are you sure?” to which she replied, “yes, yes, yes”.

Even though she talks about fast food all the time, I don’t  use the BK option often. However, it is sometimes an emergency meal when I don’t feel like cooking and when it’s only the two of us. For Jessie, it isn’t about the food but rather going someplace, anyplace. Jess is a young woman that likes to be on the move and I prefer to be a house frau. Being a homebody is my comfort zone.

After eating, we both took showers and primped like school girls before putting on our jammies and settling in for the night. The next thing I know, Jess hands me her lip gloss, then her shoes, her coat, and my pocketbook. I said “we made a deal, you had a choice, you chose Burger King. Do you really want to go to the dance?”.  She replied Yes!  Because it’s a girl’s prerogative to change her mind and because I don’t want to be a stuck in the mud, I told her she’d have to change her clothes. Within seven minutes flat, we were out the door.

she dances in the car…

The car radio played Chaka Khan “I feel for you” and Jess started dancing in her seat.

We were an hour late. I asked Siri “what is the fastest way to the Community Pool?” and she sent us on the back roads. On our way, we passed a deer standing on the edge of the bramble off  Blackwell Road. I know they can’t hear me or even care for that matter, I said to the deer: “move away from the road and no one will get hurt”. Jess laughed. She’s easily amused.

15 minutes later, Jess was at the dance. She made a lap around, checking to see who was there before settling in. Since we were late, I decided to hang out and read in the car. Roxy kept me company.  A few times, I spied on her. She wasn’t dancing but was watching the boys. A couple of them seem to hover around her. This was enough attention to keep her beaming.

When the evening neared its end, most of the time, Jess plays hard to get. She doesn’t want her night  to end. This time, she was ready. It had been a long day.

On the drive home, we passed the doe again. She was standing where I left her 90 minutes earlier in the exact same spot. Kind of odd. Maybe watching the cars drive by was her evening entertainment?

Almost always, the radio is playing when I’m driving. I thought of my husband when I heard Summer of 69 (those were the best times of my life).  He was spending his evening with friends reminiscing.

As we pulled in the drive, the song Lean on me played and this had me think of Marty.

Thank you, Marty, for being such a good friend to so very many. Rest in Peace.

Lean on me, when you’re not strong

And I’ll be your friend

I’ll help you carry on

For it won’t be long

‘Til I’m gonna need

Somebody to lean on.

Marty, you will always be our best man.

We have a deer problem

The bank always has lollipops!

Oh Dear, we have a deer problem. We enjoy them when they walk through the yard and when they stop to pose as lawn ornaments, but deer consider Hosta salad and flowers are a delicacy. Even though I spray the plants to prevent the munchies, sometimes, after a good rain, it’s not enough. Out of desperation, will try an old fashioned remedy, but need to go to the market first.

Before we could leave, I told Jess the house needed to be tidied.  I stepped out of the room for two seconds and upon return, I found Jess vacuuming. Will wonders never cease! All these years modeling language, it never occurred to me that I needed to spend as many hours modeling house chores. She watches me like a hawk.

Lollipops at the bank.

Today we are women on a mission. First to the market to pick up a few bars of Irish Spring soap, then to the bank and the last stop was to drop off a birthday gift to one of my muses.

As soon as we returned home, I started on the deer project. I wrapped pieces of soap in fabric, stapled it to a paint stir stick and then staked it next to the Hosta. Now we wait.

Happy Hosta

It was now lunch time. Jess asked for the leftover Greek salad and got the makings out for a peanut butter and jelly sandwich too. Of course, when we were out, she asked to go to Burger King, Pizza or Wendy’s, but sometimes, I have to say no.

Deer damage

Deer deterrent, soap on a stick.

For myself, I made Libby’s panini (ham, cheese, banana peppers with a schmear of Dijon mustard). I sliced the cheese on the cutting board, assembled the sandwich and put it on the grill. My mouth was watering. As I took my first bite, something was not right. It smelled strangely like Irish Spring?  I thought for sure that I had washed the knife and cutting board before making my panini? The second bite, it was obvious that one of the two was contaminated. All I can say is that I hope the deer will find the smell and the taste of Irish Spring as unpleasant as I did. 

I have to say, I was surprised to find Irish Sring soap at the market. It is so pungent, I can’t imagine anyone using it as a body wash. It is very repellant. Crossings fingers the deer agree.

Fun and work, there’s a balance

The problem with having fun is you want to have more of it.

It’s sad to say but having fun has become a problem.

This all started when we tried to diversify Jess’s week. Jess has been with a day program, five days a week for awhile now. It’s a social group that is kept on the go. The only downside is that they aren’t able to support her AAC device very well (They try but there is too much turnover to maintain consistency. This is a chronic problem in this field) In the beginning of the year, an opportunity became available for Jess to partake in another program for two days a week, we jumped at it. The second group said they could/would support her Talker and their focus was on pre-vocational activities. This seemed like a pretty good balance so we took a chance.

Unfortunately, the good times were not to last. A few months in, the second group fired their manager without finding a replacement first. This left the girls working the program without any guidance or support. When the job trainer that we liked pulled me aside and shared that she was looking for another job, I realized this support program was not going to survive. Immediately I asked Jess’s first group if she could return to five days a week. Was told YES, they have space available. In order to get the ball rolling, we had to end the second group and submit our request. I didn’t learn till after the fact that even though they technically could accommodate Jessie, they didn’t have the support staff which meant Jess would not be able to return until they hired more people. It’s now going on two months and Jess is without services on Thursday and Friday.

Self-direction means we are ‘suppose” to be able to customize Jess’s week and create a program that meets her needs. I wish that before we tried to “expand” Jess’s opportunities that we had been forewarned “change at our own risk”. This is when reality smacked me in the face. There just aren’t enough quality programs available.

As they say, when you are given lemons, make lemonade. We have been making the best of Jess’s two days at home. In fact, there’s been too much fun.  We’ve taken advantage of our time together by doing things we haven’t had time to do and also work on tasks that she needs more time to complete. 

The result of too much fun reared it’s head last Tuesday morning. Jess saw a different driver and refused to get in the car and go to the program. When Jess says no, there usually is more to it. Based on what I’ve been able to gather, Jess has been listening to the drivers’ talk/complain and now there is only one support staff that she likes. I’m constantly reminded how people talk in front of the non-verbal, assuming that they don’t understand. I explained to Jess that just because they are unhappy, doesn’t mean they are unhappy with her, it doesn’t mean that they don’t like her either and not to take it personally. I think this is a girl thing. Anyhow, I explained that there are parts of their job they just don’t like. In this case, they don’t like driving.

When Jess refused to get in the car, I gave her a choice. Either go to the program or spend the day in her room. She chose her room.  One of the most effective ways to make my point is to ignore her, no eye contact and no talking. Here’s the rub. The last thing I want to do is not model language. It’s important to treat her like anyone else. Sometimes the silent treatment is a very effective tool. However, It was suggested that I still use her Talker, but not directed at her and I found this effective.

Punishment is too strong a word. Jess wasn’t being punished per se, but I don’t want to reward her by making this time at home too enjoyable. It’s her job to attend her program. The purpose of her program is to make her world bigger. Even though it’s a social group, she has picked up life skills. She goes with the flow when transitioning from one activity to another. We also are enjoying each other’s company on shopping errands and when traveling too.

I explained to Jess that she has her work to do and I have mine and neither of us can accomplish this if we don’t do our own work. The following day, Jess was back to schedule.

By Thursday, it was a different story. It’s our day for fun. We went to the market, cooked together, did laundry, had company for lunch and then we went shopping at our favorite store in town.

The store features Tyler’s Art

This time, she wasn’t shy about talking. We all love men who listen!

Chance on Main is a little shop where Jess can browse to her heart’s content. When we arrived, she saw a young man she knew. Jess is a little flirt. She was all smiles and giggles. This was the first time that they both paid attention to each other, he was smiles too. I love capturing these moments. 

I like this bell

Jess was all giggles seeing Tyler. She is a fan of his art

While I was picking out a gift, Jess checked out a backpack, bracelets, chocolate covered coffee beans and then settled on a pair of Elephant pants, which she tried on when we returned home. To my surprise, they are adorable! Not only are they cute, but 10% goes directly to supporting elephants (this is something my mother would have loved. Our family has a special fondness for elephants).

Jess sporting her new Elephant pants

The majority of the items at Chance on Main supports the local community as well as from abroad. It’s a store whose soul focuses on opportunity, not fast fashion. There is something charming about the homemade gift. I was raised that these were the most valuable of all, the ones that you crafted yourself. Check out tyler’s blog Something to Say.

This long Memorial Day weekend, we are balancing work with fun. Jess needs to help me work in the yard and tidy the house before company comes. I think we will set a place for my father at the table. I just realized that he would have turned 100 in February.

After we have fun, we will all go back to work.. work gives us purpose, fun needs no explanation…life is about balance.

Rainy days and Roxy

It’s raining today. I’m probably the only person in NJ that is loving this weather. Why? Because we just planted a new perennial garden and moved some shrubs. This deep, slow rain will help establish their roots before the heat of the summer. The rain also means Jess and I can have a day off. Apparently, our resident deer Abbie is staying out of the weather too.

Rainy days are good for resting but they are also great for making plans, especially with our Talkers. Jess asked for new sneakers. She’s been taking her shoes off as soon as she gets home, a sure sign that they are no longer comfortable. She also asked to go to the movies.  Today she will get to do everything that she asked for. Jess doesn’t always get her way but being a rainy day and all, anything can happen.

While we were talking, Roxy ran into the room and sat at my feet. Her ears were perked and her butt was wiggling. This is the sign for “would you let me out please”.  She is always polite. The rain is at a steady drizzle now, so I was surprised she wanted to go out.

No sooner had I opened the door, Roxy bolted towards the tallest tree.

“My dog is so fast.”

“How fast is she?”

“She’s so fast, she caught a squirrel!”

Dogs chase squirrels but I’ve never had a dog ever catch one. Both Roxy and squirrel were surprised. Squirrel was fast but not as fast as Roxy today. Roxy grabbed him, then relaxed her jaw which was all Squirrel need to slip away. He was momentarily dazed yet managed to run up the tree in a circular pattern staying just out of the dog’s reach. For Roxy, the thrill is in the chase, not the kill.

For months, Roxy has been taunted by this squirrel. She stands at the window, resting her paws on the sill, watching him feast at the bird feeder. Litle did I know she was formulating a plan…”If I could just run fast enough, I bet I could catch that varmint!”

What’s the lesson for Jessie in all this? Nothing is impossible if you keep practicing, keep trying you can succeed.  

Yes, rainy days are good, anything can happen.

Till next time.