Tassels, Bars, and Buttons

Abbie and her four princes.

Earlier this month our entire gang traveled to California  for one of the highlights of our family’s life thus far:  Chase’s graduation from college and commissioning as an Army officer.  That Saturday was full of sunshine, flowers, memories, hopes, and the surreal recognition that my son is now truly a man — a man whose adventures are going to take him far from us in the years to come.

When pride, joy, and foreboding meld, the provenance of tears becomes unclear…were my eyes welling with pride at the gold cords around his neck, or were memories of my little boy sliding down my cheeks, wetting them as those precious images fell away as quickly as the years had?

My family, including my parents, surrounding our new graduate. Abbie was relaxing on the grass nearby.

 

A new SCU grad, and the future SCU grad he loves. I know Santa Clara gave Chase a great education, but I suspect the coming years may show that Melissa is the best thing it gave him.

Seeing Chase, degree in hand, was just the prelude, however.  The full symphony of emotions would come  that afternoon, as he was commissioned as a Second Lieutenant in the Army.

We were fortunate that the weather was perfect, so we could hang out on campus in the Mission Gardens between the two events.

Abbie relaxing in the Mission Gardens. I spent many a sunny afternoon here as a student, so I treasured the view of my princess among the flowers.

After a quick change, we were ready to go the the commissioning. I love seeing my boys in jackets…not too many occasions for that in Hawaii.

 

We arrived at the ceremony and were told that special seats were reserved for us, to accomodate Abbie. This kindness is generally a two-edged sword.  It meant we could all sit together, but it also meant we would be in the last row, farthest away from the stage. I didn’t really get to see any of graduation because of where the handicapped section had been located, and didn’t want to feel so separated from the action again.  But, I also didn’t want to leave Abbie.

Genevieve quickly  solved my dilemma.  Her firm command, “Go, go…we’ll be fine up here,” allowed the rest of us to descend the steeply-graded theater to find seats close to the stage.  She didn’t know at the time that her distance from the stage was not going to preclude her involvement in the day.

Red roses have a long history as part of Army ceremonies. I never expected to receive one this day. A precious gift of love and recognition.

Shortly after the commissionees arrived on stage, their commander told them to take the red roses beneath their seats and give them to the women in the audience who had helped each of them make it to this day.  Chase started with three important ladies seated together:  Grandma, Melissa’s mom Ruth, and Melissa.  He then crossed the aisle to give me a rose and big hug.  There was one more rose left.

Chase loped up the stairs, heading towards the handicapped section.  When he arrived, the rose did not go to Abbie, as Genevieve expected.  I heard Genevieve gasp as Chase leaned down, gave her a hug and handed her the last rose.  By the time I caught her eye we were both crying. I will never forget the image of Genevieve waving the rose overhead…such joy at being recognized and included.

Then, it was time…

Whispering one last special prayer, I put the hard-earned gold bars on Chase's uniform.

Whispering one last special prayer, I put the hard-earned gold bars on Chase’s uniform.

Chase received his first salute from an NCO he greatly admires, SFC Timothy.

It just doesn’t get much better than this. So grateful.

This wasn’t Chase’s first Santa Clara graduation, however.  He was five months old when I wore the cap and gown in Mission Gardens:

Santa Clara, class of 1991

Chase was with me from the beginning  of my own Army adventure:

Just before I kissed him goodbye for the last time before deploying to Somalia.

So, there was one photograph I was insistent on capturing:

A circle fuller, sweeter, and more complete than I could have imagined. We did it, Chase…together and individually. My heart overflows.

I awoke Sunday morning thinking, “Phew…now my heart can come down off the mountaintop and rest for a while.”

Abbie had other plans.

In the afternoon Chase, Abbie and I were hanging out in the hotel room, so I thought I would show Chase how Abbie’s PODD book works.  She and I started to talk, while Chase watched.

“Wow, you can tell pretty easily which button she wants,” he said.

Upon hearing that, Abbie vocalized and lifted her hand.

“Oh, Abbie – do you have something to say to Chase?”

She sure did.  I was happy she wanted to talk to her brother.  I was in no way prepared for what she was about to say.  (I’m including all the buttons she had to choose, so you can see how she built her sentence.)

“I”

“Different”

So far, “I, different”…but I didn’t know what else she wanted to say yet. She had to lead me there through additional choices.

(More to say) — a button that navigates to a different part of the book

(Like words) – a button that navigates to a few pages of positive words.

I could barely speak the word “smart” as I realized what she was saying.

“I”, “different”, “smart.”

“Oh sweet Abbie…are you telling Chase that even though you are different you are smart?”

A resounding yes with every exclamatory movement her body could produce.

Weeping all around.

The first thing she had wanted to tell her brother is that she, too, is smart.  We have always known that, even when that faith elicited looks of confusion or pity from others. This wasn’t a revelation of something we didn’t know, nor even an affirmation of something we did.  It was more than that.

It was Abbie telling us that SHE knows she is smart.  She hasn’t lost faith in herself, and has resisted the judgment of so many through these years.  I am still absorbing this one sentence.

So, those are the high (high, high) lights of graduation weekend.  Along with this:

Dinner the night before graduation at Dio Deka in Los Gatos. An absolutely amazing meal with the best company I could ever ask for: my husband, all four sons, Abbie, Genevieve, my mom and dad, Melissa and her parents Vito and Ruth.  We think the world of Melissa, so we knew she had wonderful parents.  We were right!  Getting to meet them was the cherry on top of this weekend.

I cannot number the blessings nor measure the grace that fills our lives.  If I say “Thank you” with every exhale, I don’t think it will ever be enough.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Day Everything Changed

Abbie’s new language

Last week I traveled to Seattle to learn a new language called PODD — Pragmatic Organized Dynamic Display.  What American Sign Language is to people with hearing impairments, PODD is to people with complex communication needs, like Abbie.

At first, it looks like just a book of symbols, but 20 years of research, trials, testing and tweaking have produced a tool to provide access to patterns of language, and an approach to teaching it that mirrors natural language development in children.

In fact “teaching” is not quite right…people learn PODD by having it modeled to them, and being immersed in it, just as toddlers learn to speak by being spoken to and listening to the conversations around them.  We don’t sit two year olds down and define the word “what” for them, they just learn how to (over)use it through exposure. Some children jump right into using PODD to express themselves, while others take two, or even four, years of having people consistently model it to them before they begin using it expressively.

But, they do use it.    That point was critical to me.  It didn’t matter how long it took, children eventually began to use the new language.  How long would I give Abbie to learn Chinese, if she were learning it in middle school now?  Three months?  One year?  Until high school?  Those questions seem silly, but that’s exactly what happens to children with complex communication needs.  We “try” devices and language structures for a few months, and then, if it’s “not working”, we move on to another, and then another.  Chinese.  Japanese.  French…without anyone modeling how to do it, without anyone “speaking” those languages to the kids.

I flew to Seattle knowing this would be a years-long investment, and was fine with that.  I saw it not as a task, but as an aspect of our relationship.  Even if “all” I got to do was model it for a few years, I knew it would provoke more interaction and talking to Abbie…and not just by me, but by her  dad and brothers as well.  I had already informed them that we would all now be doing PSL….PODD as a Second Language.

PODD is partner-powered, meaning that a helper holds the book, turns the pages, and verbalizes the PODD user’s choice of symbols.  To boil three days worth of training down to once sentence:  I am convinced that PODD will allow Abbie to eventually say whatever she wants to say, to whoever she wants to say it, whenever she wants to say it.

PODD communication books can be constructed in many formats, from 9 choices per page up to 100.  Part of my task upon returning home was to determine what type of book would be best for Abbie’s introduction to PODD — 9 or 12 choices per  8 1/2″ x 11″ page.  I know her receptive language (what she understands) is probably ready for more language than those formats offer,  but her vision is a limiting factor.

To produce a book for Abbie requires PODD software (which I bought) plus Boardmaker ( the symbols software) which I don’t have.  So, we don’t have a full book yet.  However, today we had a terrific nurse working who I haven’t seen in a while, so as I was describing PODD to her, I pulled out the one sample page I got at the course which uses the high contrast symbols, developed for people with Cortical Vision Impairment, like Abbie.

The page isn’t even one of the front pages, which will be used the most.  I  have “food and drink”, an activity specific page,  which also includes general symbols that I used to model PODD for Abbie this morning for the first time.

Abbie’s eyes instantly flew into action as I showed her the page.  It was beautiful to watch.  I followed the first rule of PODD, which is to start by raising the right hand and saying “I have something to say”.  I want to show Abbie she can initiate communication, not just wait to be asked questions.

I then started telling her I needed to “hurry up” and go do “more” chores so I could “stop” and do something “different”, pointing to each of those key words as I spoke.

I played around with modeling a bit longer, and then was swept up in what turned out to be a crazy day.

Late in the afternoon I was on my way upstairs and noticed Abbie sitting in the recliner having her g-tube feeding.  She was eating “food”!  Perfect time to do more modeling.  So, I told her that the “yummy” “food” would “fill” her tummy,  If she was still hungry at the end, she could have “more”, but if she got “full” before the end, we could “stop”.

I spoke several more sentences and was having quite a bit of fun watching her visually engage, and then realized that PODD will be a powerful motivator for using her vision – and her vision will improve with use.  A tremendous bonus!

Then, something unexpected happened.

Abbie vocalized and moved her right arm.

“Oh, Abbie, do you have something to say?”

She vocalized again to say “yes”.

She’d had a grand total of ten minutes of PODD modeling at this point, but I was thrilled she was willing to try.  Since she cannot point directly to the picture she wants, I scan the page for her to understand her choices.

For example I say, “This column: Sentence Starters (What, I, you, not, want, swallow, choke), food/taste/eat, drink”.  If she indicates “yes”, then I scan through the choices in that column one by one until she indicates her choice.

Abbie’s choice was not in the first column, nor the second.  She wanted the third column, and chose the second box:  “different”

OK..no clue yet, so I asked, “Another word?” to see if she wanted to add to that.  Yes, she did.

This time her choice was in the first column.  It was the second box:  “food/taste”

“OK, Abbie, ‘different taste’.  Another word?”  Yes…she wanted to add another word.

Again the first column, and this time, the first box, “sentence starters”.  I named each of the choices in that box for her, and she chose “want”

“Different. Taste. Want”  (PODD-speak)

“I want a different taste” (conversational English).

I said both of those sentences to her, and she strongly indicated yes, with every part of her body.  She wanted something different to taste.  I ran to the fridge and grabbed some cinnamon applesauce, and returned, grabbed the sheet again, and used it to say, “”I “”hurried” to find a “different” “yummy” “taste” for you Abbie, and that I hope you don’t think it’s “yucky”.  It is “cold”, but I think you will think it’s “yummy” and want “more”

I gave her two very small tastes, which she enjoyed.  Then, she coughed a bit, so I stopped giving her applesauce.

She soon vocalized, so I asked, “Do you have something to say, Abbie?”  She sure did.

“Not” “Want” “Stop”

“Oh, you don’t want to stop eating applesauce?”  Bingo.  So, I gave her more tastes.

I then had to run out the door to a dinner for which we were about to be late.  I was dizzy walking down the front steps as I began to truly process what had just happened.

For the first time in over nine years Abbie had expressed to me what was on her mind.

When I first walked into the room, the thought that she might like a different taste was no where in my mental universe.  When I stopped giving her tastes after she coughed, which seemed the prudent thing to do, she told me firmly that she did not want to stop.  Autonomous expression…the goal I had been prepared to work years to have Abbie achieve…. had just happened, with a simple sample page.

Abbie has her own voice again.

Reading those words, my heart fills my chest so completely that I can hardly breathe.  Abbie can direct her own journey now, can tell us not only what she needs, but what she thinks, dreams, enjoys, wonders, and dislikes.

Today, everything changed.

The IEP goals we wrote in April for PODD are 1) for Abbie to notice that we are using the book and become interested in the modeling, and 2) put together 2-word utterances.  We haven’t even built the book and she’s laughing at those goals, eating dust in her rear view mirror.

My heart is

 

 

 

 

 

of joy tonight.

 

And I know tomorrow will bring


of it,

 

 

 

 

 

 

because my girl has never, and will never,

We are blessed.