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.

An AAC social experiment

I’m always game for a new challenge, especially if it will improve AAC skills. The conversations I have with Jess are good when we are on the move, however, our day to day life is rather mundane and predictable. The end result is we look at each other knowing what is to be said next. I’m not saying that we read each other’s minds but I find that I repeat myself:

  • Please wash your hands & then set the table.
  • Please put your things away.
  • Please get ready for bed and then we can watch some TV. 

Hmm, my examples sound so much more polite in print than when I say them.

To be honest, predictable language has more to do with the husband than it does Jessie. After nearly 28 years of marriage, we’ve fallen into the trap of knowing looks.  I hate to admit that as a family unit, we all suffer from “implied conversation”. I think we are in need of a reboot.

Speak for Yourself is doing a social experiment where we maintain a dedicated modeling schedule. We are to carve out 15 minutes a day, for two weeks where we model language on our AAC devices. For us, the best time for uninterrupted modeling is first thing in the morning, from breakfast till Jess’s ride arrives.  The next best time to catch conversation is before, during and after dinner when we are altogether.

What I’m going to share next really doesn’t have much to do with the “social experiment”, but rather an ah-ha moment. There’s a unique feature on the Speak for Yourself app called Hold that Thought. Its purpose is to save the phrase or sentence you were building so you can stop and answer a question. As we all know, conversations aren’t always linear, we all subject hop. Jess uses this feature more for monologuing than for the intended purpose. I, on the other hand, repeat myself every morning. These aren’t necessarily stock phrases that I want to add to the Talker but for the full effect, I want this spoken quickly, with authority.

On second thought, I could add phrases for the husband?

  • How was your day?
  • Anything new happen at work?
  • Honey, would you please pick up a bottle of wine?

Well, maybe the last one should be a preprogrammed phrase, but you get the idea.  There’s more than one way to use Hold that Thought. Actually, it was intended for this use, but I’m realizing it can be handy around the house.

This isn’t modeling language as the experiment intended, but the more I use SFY with Jess, the more she has to say. It’s a matter of finding the right icebreakers. 

We have some uninterrupted time right now. “All I have to do” is find something that is interesting to talk about it. Easier said than done. Jess doesn’t care much about my weeding, doing laundry or running errands, but I did take Roxy on a hike. I think I will show Jess the video of Roxy running as fast as she can to get this conversation started and we will just wing it from there.

Our Great Adventure…

View of Philadephia

along the way

Yesterday was a girls day! The weather was predicted to be hot, which made it ideal to visit the Camden Aquarium. We had planned to take the River LINE, not the Hudson, ha ha, but a light rail diesel train that runs from Trenton to Camden. The wee train is pleasant and has a scenic route, but it’s really only good for the one destination. Jessie’s Auntie had other ideas and offered to drive, so off we went. At the time, we didn’t realize what a good choice this was. Little did we know, we were off on a great adventure.

Jess had been rather quiet. Typically, she is chatty in the car.  I figured she was listening to our catching up and was being shy. It’s been awhile since we’ve seen her Auntie.

Even with traffic, driving had us arrive much earlier than the train. The aquarium is nestled along the Delaware river and there is a boardwalk that runs in between.The water was like glass and there was a great view of the city. The Benjamin Franklin bridge is at one end, and the Battleship NJ is at the other. There was not much activity along the Delaware at this hour except for a small bike patrol and a fisherman who had set out three poles.  It’s Shad season so maybe that’s what’s for dinner?

Jess headed toward the Battleship NJ

When Jess goes to new places, typically we open more vocabulary on her Talker. As I went to add the words battleship and fishing, I realized the Talker had run out of charge during the drive. Crisis! This rarely happens. Turns out, one of the cables at our charging station wasn’t connected (which reminds me I’m stopping to fix that now). Momentarily Jess was frustrated, but she didn’t let it dampen her day. There was a lot to see and she was ready to take it all in, however, this was frustrating for me to lose opportunites to catch conversation.

The smaller exhibits were eye-catching, walking through shark tunnel gave a sense of awe, but walking over the shark bridge tested Jessie’s nerve. There was a time she would not have attempted this. The rope bridge was narrow and had a slight swing to it. Jess hasn’t always been steady on her feet but was able to walk this bridge with confidence. She let out a knowing laugh here and there as if to say “I’ve got this”.

Brave walking over the shark bridge

a family of penguins

Jess enjoyed the penguins the most. I’m pretty sure she would have brought one home if she could. It’s a good thing they check pockets at the door. Fortunately, she wasn’t able to get close enough due to the glass window. Believe me, we thought this out.

Seeing the big animals in small tanks made me sad. Like the movie Finding Dory, I wonder if they think about escape?  Auntie shared the story about Inky, an octopus, who did just that! It’s an example of life imitating art.

The final thrill was experiencing a rainforest rainstorm at the Piranha Falls. We’ve had a bit of rain recently at home, but this reminded us of our upcountry bungalow on Maui, except for the Piranha of course. Feeling a cool breeze and being misted by the gentle rain was soothing, but when the thunder clapped, Jess was ready to leave.

Now, what do we do? It wasn’t even lunch time. Recently Jess had done a historical tour of Philly, so our options were the Zoo or head to Great Adventure. With the NFL draft and the football festival in full swing, Philly was jammed. We decided it would be less frustrating to head to Great Adventure than stay, it was an easy decision to flee the city.

By the middle of the day, it was nearing 90 degrees. Hot, but not humid, a perfect day to be at Six Flags. It was our good fortune that it’s early in the season. Crowds were small and lines were short. Jess loves amusement parks, but me not so much. I admit it. Most of the time I’m not the “fun” mom.

She’s more intimidated by Tweety & Sylvester than by the animals

On this visit, our mission was head to the Safari Off Road Adventure to feed the giraffes. We were transported on large, loud, open trucks that hauled us as fast as they could through the park. Apparently, the main objective was to get people from point A to point B. The guide warned us about animals coming up to the vehicle, but there was no such opportunity. This truck did not stop and the driver made a point of keeping a wide berth.

Phone/cameras were to be used at our own risk. If you dropped it, there was no going back. The guide said that the animals have been known to take the phones and that the park is not responsible for roaming charges…ha ha…however, I think the intention to keep us moving was so there wasn’t the opportunity to lose their phones.

The giraffe park was sparse. Inside the building, there were some reptiles; snakes and lizards. Outside there were cages of parrots. I hate seeing birds caged. They didn’t look too happy. When I said “hello pretty bird”, there was one meek, pitiful reply “hi”. Not very stimulating for smart animals. Behind the birds, there was a small gray pony? He was very fuzzy and cute, but he was the one thing is not like the others. My guess is he’s the last remaining pony from when the park offered rides.

Outside in another pen, there was a giant anteater. Andy was pacing and appeared bored. Did you know that they can eat 65,000 ants a day? They provide him something that meets

his nutritional needs, which somehow doesn’t seem to be the same as foraging for live ants.  Like being offered Lays Kettle potato chips and getting baked Pringles instead, but worse. I’d bring him home too, but we don’t have enough ants to satisfy him either. There was a food truck for people. Out of desperation, I paid $5 for a small coke. Andy might have enjoyed that but he looked like he could use a beer.

Right on schedule, the giraffes meandered up to the balcony. Their presence did not disappoint.  I was impressed how they politely waited their turn for a snack. We fed them raw sweet potato fries held in an ice cream cone.They ate it all.

At the risk of stating the obvious, giraffes are tall. Our platform was tree height. Their tongues are black and can be up to two feet long. Jess was less intimidated by them than she was Sylvester and Tweety, whom she met when we entered the park.

After our giraffe visit, we hopped on another truck and sped back to the amusement park. Along the way, we learned that a lion’s roar can be heard up to 5 miles away and that a Tiger’s roar only two. We also learned that male ostriches are black and white and the females are gray and white.

Even though Jess’s Talker lost battery when we were at the Aquarium, she kept it with her for the rest of the day (did not leave it in the car) because her Talker is her voice, even if it has lost its charge.

As soon as we walked in the door, Jess got her back-up Talker and started chatting about the day. Over dinner, she told her Dad “roller coaster exciting” and “penguins remarkable”, then talked about the battleship (because I added the word). Jess was relieved to be able to say what she wanted to say, even if it was hours later. When the Talker lost it’s charge she didn’t forget what she wanted to say.  What had been pent up was soon released!

Jess went to Great Adventure and lived to tell about it on her Talker.. and all is well with the world.

Thank you Thora for this GREAT ADVENTURE! You are a GREAT Aunt!

Release the ya-ya’s

When the going gets tough, the tough get going.

After being housebound for a few days due to the snow, we had to escape. Husband was under the weather and us girls needed to move.

The problem with the colder months is simple, Jess doesn’t like it. She was born a southern California girl and is definitely a flower child.

The downside to being anti-cold is it means she slows down this time of year and that effects her morning constitutional. Mall walking seems to solve our dilemma and it’s also our go-to place to expend energy. When the footing outside is bad and the wind is up, this is a hospitable place to be. There are other advantages; walking before the Mall opens means there are no crowds, window shopping is good and it’s free.

She tells me where she wants to go.

Jess has two speeds, stop and go. We don’t walk the Mall, we run.  In fact, we have a land speed record there. Not to brag, but we also hold the land speed record at the Baltimore Aquarium. One day we’ll go back and look at the fishes. I’m pretty sure she didn’t notice them the first time.

In a half hour, we can do two laps on the upper level and two on the lower. The other mall walkers are very encouraging and don’t mind when Jess passes them with unbridled enthusiasm.  Running for her is liberating and she is deceivingly fast.

On her wish list

By the end of our “walk”, Jess was ready to talk. She told me what she wanted at the market and then asked about discounts, I knew she had been listening to me when I told her earlier that apples were on sale and that we’d make more applesauce.

Once the ya-ya’s were released, we leisurely ran our errands, made it home before the crowds and all was well with the world.

The mother ship…Jess takes her AAC iPad everywhere

It’s all in the timing

Jessie, Roxy and I were driving home from the market. I know this sounds like the beginning of a joke, but really, I want to share that Jess told her first joke!  We had modeled jokes years ago on her Talker, but they didn’t seem to interest her at the time. Besides, she prefers slapstick humor.

I was surprised, she had good timing.

“Knock Knock”

    “Who’s there?”

“Mama Mia”

     “Mama Mia who?”

“Mama Mia movie”

She looked at me after each sentence and waited for me to answer. Then we laughed. There is always a thread of truth in humor. Humor is a powerful tool to get other people to do things that you want. 

Jess does everything in her own way, in her own time. Her joke today, reminded me of that.