Silence Is Anything But Golden

There are moments in life where we are able to gain insight through personal experiences.  As the parent of an individual in need of lifetime supports, I have had many opportunities to expand my view of the world.  This time, I have been blessed with the opportunity to feel, ever so briefly, from the side of those without eloquent language skills.

The inability to effectively communicate is my current learning experience.

On May 5th, I had jaw surgery resulting in my jaw being wired shut.  

In the recovery room, I was handed a paper and pen to communicate, being loaded with anesthesia so no one could read my writing and I could see my failing penmanship as it trailed off the paper. In the hospital room, I wasn't even given any way to communicate except my own mumbles.  Agonizing jaw pain and no way to communicate. 

Prior to the surgery, I had trialed a few apps before the surgery and found one that was simple and effective. Through a voice which was nothing like mine, I was able to communicate "I am in pain", "I'm thirsty" and "I need to go to the bathroom", all the essentials were there. I could also type and have it speak for me.  

People are busy, bustling around, ready for the next conversation, activity, task, etc.  No one wants to pause while you type out your five word response or request.  This requires a pause in the hum in the room.  You become self conscious while everyone waits for you, increasing your mistakes, and sense of being on the outs.

On top of that, if I try to talk with my wired jaw, I am able to use gestures and find that I immediately fall back into using simple sign language that I learned when Lauren was young. Sadly, only Lauren understands what I am signing :) I do it anyway-makes me feel more effective, even if I'm not.

Listening to Lauren has taught me that when something is out of context of a current setting for environment, it requires me to listen, really listen, fill-in, listen, and ask leading questions to try to remember what is important to Lauren and the Disney princesses most present in our lives currently, her dolls names, where she went last week, yesterday and what the plans are for the week. All of this bantering the possibilities about what she might mean happens in a split second but it can often take me a few tries.  

Now, it is me that has to remember that while my language is unintelligible, I need to set the stage.  It takes more time, it can be frustrating to get your thoughts across, even with a device. 

For me its been less than a week to date. I can only imagine the frustration and feeling of giving up on communicating with those that don't understand or don't have the patience to wait to listen. 

As the weeks progress with the wires on my jaws, limiting my ability to communicate, may this awareness set deeply so that I make more time to listen, really listen, to all of those that wish to communicate with me.  Whether it is a language barrier, a communication delay, or difficulty in being able to share thoughts because the time from brain to mouth or keyboard, takes time, may this experience help me and others.

LESSONS LEARNED

1. Don't assume that health care providers are up to date on technology supports or even consider them.

2. Ask someone if they don't get involved  in conversation, they may not participate because it is poorly understood.

3. Continue to teach language - speaking for those who are able, writing, words, sign language, devices that help. Don't give up at a certain age, communication is essential in life.  Use an multi-faceted approach to communication. There is not one way, there are many. 

4. Be patient with those that we support. They are doing the best that they are able.

Let's Talk About Age Appropriate

In a matter of a few short weeks, my girl will be 30 years old. Given that she needed behavioral supports from the age of 2, I should have known that the road was going to be unpaved, bumpy and filled with unexpected turns.  

29th Birthday Party

I have learned to appreciate every success, every word that comes out of her mouth and her ability to be immersed in our community, a dream, years ago, I thought only for others.

Let's get to this age appropriate concept... is it age appropriate for us as parents in our 50's and 60's, to still have 24/7 responsibility for an adult child? I think not. Look around at your friends who are off traveling, planning their next adventure without a single thought about their children's care, should lend you some perspective.  

So, I say this, as long as it is safe, do what needs to be done to make your life easier, more relaxed, happier, allows your child to be comfortable in your community and if someone has a problem with my daughter carrying around a doll which allows her to relax in an environment... too bad.

I recently did a presentation to a group of passionate community support workers who are person centered coaches. 

I shared the 1 page profile that identifies 3 target areas for the supported person.

1. Things We Like and Admire about that person; 

2. What is "Important To" the person; and 

3. How to Best Support the Person. 

One of the attendees later shared that he still struggled with the "age-appropriate" issue. Let me quote the participant, who by the way, loved the presentation.

"I still struggle with the debate about age appropriateness as it relates to clothing choices and the toys that obviously make her daughter happy. I respect the concept of what's important to the individual and their quality of life, but take very seriously our goal of changing stereotypes that are often associated with the folks we support."

Another of the Many

This got me thinking.  Why would it matter so much to a person in a supportive role?  I tried to survey people in my outer circle, those not active in the world of special needs. 

Here is what one person thought:

"I wouldn't want any observers to put me in the same category as the person with the disability".   

At Applebees

This made sense to me when I look from the perspective of an outlier.  My daughter looks like a teenager even though she is nearly 30. When she speaks it is obvious to any listener that she requires supports.  She requires 24/7 supports to remain safe and often dresses in Disney attire.  I know a lot of adults lacking special needs that regularly wear Disney attire, decorate their homes as such and have other childhood interests. Key chains with characters, ball caps with Goofy, and the list goes on.

My daughter finds comfort in carrying her dolls. It is like the social dog without the poop. Stuffed and left in the car--easy--a dog, not so much.

The dolls have become a social connection. It is largely other women ask her about her dolls, their names, where she buys them, and share their own collections.  Lauren likes to have one around most of the time. Sometimes, it is Franklin the Turtle or Arthur but 90% of the time, it is a doll.  

Lauren and Elsa from Frozen at
Music in the Park in downtown
Campbell last week - a FIRST!

For me, it helps onlookers to be aware that she has a need for support.  On the plane, it us a cue to other passengers, flight attendants and most importantly, the TSA.  It provides comfort, gives her something to hug, fuss with and distract her from the 5 hour long flight. The doll is a communicator of sorts. Way better than a Klonopin or an Ativan, don't you think?

Of course in Lauren's 1 page profile, the dolls are high on the list.  Taking them out in the community is right up there with calling mom when she wants.  Does it look age appropriate? Well, not by definition, but this is my reality. 

My thoughts are that if it makes an outing, visit, or travel easier for the individual and the supporter, does it even matter what others think? 

I think not. 

What do you think?

Woman Held Hostage By A Giant Red Lobster at Safeway

News Flash! During a 20-30 minute stand-off at the San Jose Safeway Check Out Stand--Mother Makes a Breakthrough!   

Situation: Mother Taken Hostage by a Giant Red Lobster! 

I began to wonder... how did this happen? We entered the doors, happy and peaceful. After all, she got to go to work with me since one of her staff was ill and she loves being at PHP, so all was well.

We got the cooked chicken, some salad fixings and were ready to go make our lunch when she spotted it!  This Giant Red Lobster, soft on the outside, stuffed with cushy material on the inside, who vaguely resembled Ariel's friend from the Little Mermaid but you can see that in the video.

Those of you that know me are probably aware that I believe that Lauren has the right to make decisions and to be supported in a way that works for her.  I have studied, practiced, listened and read but continue to be challenged at times over how to manage a challenging situation when it comes to her behavioral support needs. It is how I handle myself that can make the difference between power over another and peaceful negotiation.

I always like to present Lauren in the best light and want her to feel great about herself. My reality is that there are occasions that challenge me to my limit and when I am required to drain my body, my mind and my soul of all its patience, love and control, it has an effect.

The article entitled, "Autism Moms Have Stress Similar To Combat Soldiers" by Michelle Damient on November 10, 2009 from the website Disability Scoop shared the results of this research: "Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds." 

Oh yes, I literally felt I had been taken hostage in the war-zone at the things that sparkle for kids near the check out lines-temptations that drive every child to beg, plead and cry, thus inspiring this posts title. 

Many of you know my girl and only have seen her at her best. It is with great trepidation that I share the video, so it may not remain long on this site but I believe that those of you who wonder how to get past these behavioral support needs, might find this comforting in some way.  My mother always called it "misery loves company" and I suppose it is true at some level; I like to call it empathy. 1/2 but my gut is telling me to share, the other half is saying not to share.

After what felt eternal but was somewhere between 20-30 minutes, I had a decision to make. I had to get out of that store and back to work. I didn't want to by the large sea creature for $25 that would only take up more space, become a giant bedbug and forgotten in a day so yes "I Caved" in a way.

Given that she has had her sights on a new doll "Lavender Fields" for 30th August birthday, I calmly, and with certainty told her that "I'll buy that red lobster with the understanding that it would replace Lavender Fields (the doll) for her birthday and I promptly said "let's go buy it" and repeated that it would be replacing the doll.  I said it as matter of fact as if I was saying "it's hot outside".  Finally, with that, she paused, left the line and said "ok, I'll put the lobster back". She put the Giant Red Lobster back proudly announcing "I did it; I put the lobster back!"  

I wish I had thought of this strategy at the onset but when you are surprised by a sniper in the form of a Giant Red Lobster -- how does one shift so quickly?  You are taken surprise and there is nowhere to hide!

While I appeared to remain calm and reflected that calm to prevent further escalation in the fishbowl at Safeway, I felt like I was dying on the inside and it took until now to really have recovered - I suppose this blog is part of my therapy.  

The good news was that I waived the white flag.  My girl was "over it" as soon as "it was over".  I needed more time so when she kept telling me "I'm not mad at you"; I told her "I would get over it too".   

We have much to learn about leaving "it" behind and our sons and daughters are there to teach us how, I suppose.  It takes a toll but we are resilient and our love and support from others helps us overcome.   

I wish all of you relief from the war-zone, an endless supply of patience and white flags to wave and hope that knowing that you aren't alone provides some, even a small amount, of comfort to your day.   

Thoughts that might otherwise become lost.: Positive Change: One Method

Thoughts that might otherwise become lost.: Positive Change: One Method: Click here to see the video. My first try using Adobe voice. What do you think?  Go to full screen using the 4 arrows to view with out t...

Positive Change: One Method

Click here to see the video. My first try using Adobe voice. What do you think?  Go to full screen using the 4 arrows to view with out the blog background.

This message is Lauren approved.

Walking more awkwardly than usual...

7:30 am: call from my daughter's staff that a family member was in a serious accident and she would not be able to come cover the day while I was working. So packed up the dog, the girl and off to work! Luckily working at PHP, bringing your children to work is not frowned upon. LG is very able to keep herself busy between the ipad, making lists and DVD's.

In the morning I watched her awkward gait and noticed it worse worse than usual. I checked her shoes and tightened up the Velcro.  We proceeded to the car and I offered my arm for her to hold onto, which she readily took.

When leaving today I noticed that the left foot kept rocking as he planted her foot on the the ground.  Only the left.  The right seemed okay.  So, I asked if she was having pain in her foot. 

Her immediate relief was obvious.  She said it was her right toe. I told her "when we get to the car show me what hurts.  She removed her left shoe and sock and ouch!  It made me cringe when I saw her big toe, which was the right toe on that foot :).  Infected, self pedicuring when no one was looking!

Aside from her DYI nail polish that is half peeled off, it appears that she cut her nails down resulting in an inflammation.  We went right in, soaked her toe, polysporin and will watch to see if clearing before Monday. At which time she will go to their doctor if not to significant improvement.  

Solution? Pedicure, every two weeks. Rain or shine!  Putting on her calendar next.  My poor girl - questions I ask myself. When I am gone will anyone else notice? Will she be in so much pain that she acts out and no one knows it is a result of pain?  It tears at me. So, I can I document and hope that it is heard.

It's Puzzling

The 6 piece puzzle completed with dates on each piece.

It's Easy, Cheap and Fun!

Yet it took me years to try it.  

The puzzle is done! Up before 10am 6 out of 7 days!  Now to move it to 9:30 with a new puzzle.  

The DVD cost me only $.50 cents plus $4.95 for shipping off Amazon.  It was waiting for her yesterday morning and she was THRILLED!

Tonight will be spent selecting a new goal target, making the puzzle and starting again!  

If your person in need of a change can't wait 7 days, start with a lower number of pieces that they can earn in a day or even an hour! 

This is all about creating success.  I would never take a puzzle piece away, which may result in the loss of a positive association with the “earning” puzzles.  

How could you use this puzzling fun with your son, daughter, or client?