I Am Listening

As parents we need to monitor what we say around our kids, whether they have typical neurology or not.  A classic example of this is not to swear in front of the kids or else we may hear the same kind of language coming out of their mouths.  Aside from this, we should make sure we are not discussing in front of them things our kids are not mature enough to handle.  It is a bad habit of mine to be lax in what I say around Philip.  It comes from years of assuming that because Philip didn’t talk, he wasn’t listening. 

I now know that this line of reasoning is completely wrong, but I still have not completely overcome the habit of talking as if he were not there.  This is extremely important for me and others to get right because what our kids hear us say about them or what relates to them can greatly impact how they perceive and feel about themselves.

Yesterday a few of us adults were discussing Finley Boyle and Jahi McMath, two children ages 3 and 13, who became brain dead after routine dental and surgical procedures.  In the case of Jahi McMath, there is controversy over what constitutes death.  The hospital would no longer treat the girl who was pronounced dead after she went into cardiac arrest and showed no brain activity after a procedure for sleep apnea.  However, the girl’s family fought in court to keep their daughter on the ventilator because they said she showed signs of improving such as moving to her mother’s voice or touch and indications on a hospital monitor suggesting the girl tried to breathe on her own.  I am not going to weigh in on the ethical debate but will say it is a very sensitive topic.  A few of us postulated under what circumstances we would want to be kept on a ventilator or be allowed to die. 

As we were having this discussion, Philip was in the room and began crying.  I tried to get Philip to tell me what was wrong on his letterboard.  He managed to spell a few things which I can no longer exactly recall, but he was clearly upset about the conversation he was hearing.

 

Today after school and his home lesson, I asked him what he wanted to talk about.  “Death and Acceptance,” he spelled.  “Is this related to the conversation the adults were having yesterday?” I asked.  “Y,” he pointed.  “Do you want to write this for your blog?” I asked.  “Y,” he indicated again. 

As you read Philip’s response, try to see it not from the viewpoint of a medical ethicist or even an adult, but in the light of an autistic child who cannot speak, gesture, or write on his own, and who has been presumed unthinking for much of his life (and continues to be seen in that light by those who don’t recognize his communication).   

Philip’s words:

The right thing to do is always accept life.  I am sad when tons of people doubt me.  I am sad when tons of people wish I was dead.  (To which I responded, “Nobody wishes you dead.  I love you!  Lots of people do.  What do you mean by people wishing you dead?”)  People single us autistics out to not understand.  I was sad when (person) said it was not worth living if she could not communicate.  I think it is wrong to think that people who don’t communicate don’t feel.  Really upset that letterboard is easy to dismiss as utter nonsense.  I am sad each autistic must prove his worth.  Sometimes I wish I talked.  I am happy to be Mom’s kid.  I am outside normal.  I am one lonely boy.  Each day is a daring one and I will each day in each way stop you and stop the world each time it gets us wrong.

A part of me wishes Philip did not have to concern himself with such heavy and mature topics.  Shouldn’t he be talking about sports, hobbies, and the latest video games?  But I also realize autism is Philip's life.  The things he talks about he must deal with every day.  I am grateful for Philip’s ability and willingness to tell me how he feels.  I cannot imagine if I were him and had to keep all this sorrow to myself.  I think I might die in my soul.  I tell Philip to keep expressing himself to me and to the world.  Using Philip’s term, I tell him to keep “daring” the world’s perception of autism until it gets it right.  

* Philip was happy with the post this morning, spelling "I love it.  I am having interesting conversations."  Indeed you are Philip and your voice is an important one.  

**  Addendum- There are definitely good things to come out of this heavy topic.  One of the people involved in the conversation read his blog and contacted me expressing sympathy and wanting to clarify and make amends.  Since Philip was home from school for a snow day, they were able to converse over text messages and have a wonderful dialogue with a happy understanding of one another. 

Photography/ Forrest Sargent

One of Philip’s New Year’s resolutions is to find a pastime.  I think photography might be something to explore.  My Dad is an amateur photographer.  He loves to take pictures on the many trips around the world he and my Mom take now that they are mostly retired.  He belongs to a camera club and enters his photos in competition.  

This year, Philip made Christmas presents for the family by writing poems or letters for them.  For my Dad, Philip wrote a sweet note in which he appreciated my Dad’s pictures.  He wrote:

Dear Lolo,

I am touring places with you when I see your pictures.  I like them a lot.  I am interested in photography.  I want to accompany you on your shoots.  

                                                      Love, Philip

On Christmas Eve, we had dinner with extended family and family friends at my parents’ house.  After dinner, my Dad showed some of us his pictures he took on trips to Brazil and Thailand.  He was trying to figure out which ones to enter into a competition and what he should name them.  My Dad picked out this photo he took in Thailand as a possible entry.  He asked Philip, "What do you think I should name it?"  I held up the letterboard for Philip as he spelled,

 

"Catching Light Opulence"

We all sat in shocked silence for awhile.  For me, my thoughts were a combination of "Wow, that title really makes you think about the picture" and "How did my 10 year old son come up with that!?  How does he even know what opulence means?"

My Dad was blown away.  He loved the title and decided that should indeed be its name.  My Dad was now having fun with Philip and decided to ask him to title some other pictures.  More and more of our family came to join in and see what all the hubbub was about.  Dad would ask everyone what to title each picture.  Most of our suggestions were pretty mundane:  monkey on a branch or lunchtime.  Philip continued to come up with the best titles. 

"I Am King"

"A Fruitful Day"

"Each Vine is Alive"

For the last picture, my Dad asked Philip why he didn't mention the monkey.  Philip spelled, "The monkey's tail is being camouflaged by the vines."  

My Mom was impressed with what she was witnessing.  She asked me, "Aren't autistic people supposed to be unable to generalize concepts?  They said if they show someone with autism a picture, they focus only on one aspect, such as the doorknob of a door and not the whole picture.  Philip sees the whole picture and more than any of us too."  

It certainly does seem we are all learning a lot of things about Philip that are contrary to the book or "what he is supposed to be."  I think of the last picture above as being an illustration of the individual being camouflaged by autism.  What we readily see are the symptoms of autism: flapping hands, jumping legs, unfocused eyes, and a mouth that does not utter intelligible ideas.  It all too easily masks the sharp mind, the keen eye, the gentle heart, and the unique personality of each very much alive human being. It is about time we focus on the human being and treat autistic individuals as individuals, not autism.   

On that note, I leave you with an extra treat about Forrest Sargent, a 22 year old non-speaking autistic photographer who also communicates via RPM on a letterboard.  I want you the reader to know there are many autistic individuals, even non-speaking ones, living meaningful and satisfying lives.  But I also want you to know that for each person like Philip and Forrest, many more non-speaking autistics have not yet been given this opportunity.  They desperately need our help to bring effective communication into their lives.  It makes a world of difference.  Click here to read Forrest's inspiring story from frustrating silence to liberating self-expression through RPM and photography in Seattle's Quirksee magazine.

14 for '14

Happy New Year Everyone!  May 2014 bring you blessings, peace, and prosperity.  I asked Philip if he had any New Year’s resolutions this year.  He didn’t know what resolutions were at first.  I explained they are goals that we are resolute, or determined, to achieve in the new year.  I explained that some people don’t make any because they can be hard to keep.  I expected Philip to maybe have one or two resolutions, but he kept on going until he came up with 14!  It goes to show me how determined he is to set high standards for himself.  My resolution will be to help Philip meet each one.

Here are Philip’s 14 for ’14:

1.        I will assume responsibility for my actions.

2.       I am going to teach RPM to each autistic kid by a) blogging, b) meet with autistic kids more, c) teach teachers, d) answer questions for parents

3.       A lot each day to typing

4.       Go to regular school

5.       Meet more autistic people

6.       Write a book about my life

7.       I will kid around less at school

8.       Have pastimes- avenue of fun

9.       I will practice RPM with other people

10.   I will accept any lasting change to improve the lives of autistics

11.   Accept advances in leading others to find their voices

12.   Accept giving kids a chance to express themselves

13.   To eat less gluten

14.   To attend to other ones that talk tons also (when asked to clarify if he meant he wants to be able to integrate with people who talk, he pointed “Y” for yes)

This is going to be a great year!  

Last night we celebrated New Year’s Eve at a party at our good friend’s Tim and Deb’s home.  I had never seen Philip do so well at a party.  At  times he sat with the adults listening and even answering some questions on his letterboard.  He also spent time with the kids.  Everyone noticed a big change in Philip.  We had a wonderful  and relaxed evening eating, playing games, talking, and toasting the new year.  At bedtime, I asked Philip what he thought of the party.  He spelled, “It was fun.  I am happy I went.”   

2013 was an amazing year.  I have a feeling 2014 is just going to get better!

 Ringing in the New Year with Carlos

New Year's Haircut

Philip hates getting his hair cut.  I have written about this in the past (click here for old post).  It has still been a struggle to get his hair cut.  My sister Kit, his barber, had been waiting for him to come around since before Thanksgiving.  We no longer want to force Philip by wrestling him down with a mob of relatives.  We wanted him to come on his own free will, but it was starting to look like he was never going to come.  Philip was looking like his favorite musicians, the Beatles of the 60s.  I was beginning to think I was going to have to get used to the idea of having him look like the Beatles of the 70s.  

I was determined we would have Philip’s hair cut in time for Christmas.  We spent practically the whole of Dec. 23 coaxing Philip to get his hair cut and following him around the house.  He kept spelling that he wanted his hair cut, but as he approached the stool in kitchen, he would suddenly turn around and bolt the opposite direction.  We then tried to get him to sit comfortably anywhere, but if my sister approached him with the scissors, he suddenly got up and ran.  Finally it was time for my sister to leave.  About a half hour after Kit left that day, Philip started crying inconsolably.  After he calmed down, I asked him why he was crying.  “I am sad because I didn’t get my hair cut,” he spelled.  I asked why he wouldn’t let Kit cut his hair.  He explained, “I am scared I will lose control.”  I realized that Philip had the desire to get his haircut, but for some reason, he became overly anxious and his body was rebelling against the idea of getting it done.

Today, we spent much of the day at my mom and dad’s house.  Again we tried to get Philip’s haircut for the New Year.  I even tried giving Philip Benadryl.  Philip looked a bit drowsy 10 minutes after taking it but he still would not allow us to touch his hair.  I was hoping Philip might fall asleep, but the effect of the Benadryl was very short-lived and he was back to his running and jumping self within 30 minutes.  It was looking hopeless.  By 5 o’clock, Philip was running laps around my parent’s staircases.  They have 2 sets of stairs so he was literally doing loops.  I tried to stop him on the stairs and coax him to sit on the stairs so Kit could cut his hair.  Finally around 5:30, my sister gave a “last chance” warning because she had to get dinner ready.  Even though Kit was patient through all of this, my patience was wearing thin and I was on the verge of yelling.  I was about to get everyone ready to go home when finally Philip walked out to the kitchen stool all on his own.  He sat down and my sister began cutting his hair as soon as she got the chance.  I let Philip grab onto me for support.  He was whimpering, but sitting mostly still.  Kit and I encouraged him saying how well he was sitting and how proud we were for him overcoming his fear- because we really were!  It took Kit quite awhile because Philip had so much hair, but finally she was done and Philip looked so handsome and happy!   

   

Tonight after dinner, I asked Philip about getting his haircut.

Lisa (Me):  Do you like to get your hair cut?

Philip:  I like to get my hair cut bc (because) I want to look good.

L:  What happens to you when it is time to get your haircut?  Why is it so hard?

P:  I get anxious bc I am scared of losing control of myself.  I am scared to hurt myself by not sitting still.

L:  What helps you not be as anxious?

P:  It helps me when you let me sit in my own time.

L:  How did you finally decide to sit and have your haircut?

P:  I told myself to calm down and silently prayed to God.

L:  Was there anything me and Auntie Kit did to help?

P:  A lot of patience and love.

L:  Anything we didn’t do well?

P (smiling, as if to say, “I'm so glad you asked”):  I am sad when you keep yelling at me.

L:  What can I do better in the future?

P:  Let me come when I am ready.

L:  I think I would still have to encourage you.  How can I be more encouraging?

P:  In each case, keep tons of stairs.

L:  Huh?  What do you mean?

P:  My will to rest tons is broken by running stairs.

L:  I still don’t get it.

P:  It relaxes me to get my hair cut.  

(Ahaa moment for me!)

L:  How did it feel to get your hair cut?

P:  It felt pressure (stressful) but I am happy I did it.

L:  What do you think of your haircut?

P:  I love it.

L:  What do you want to say to Auntie Kit?

P:  Thank you for cutting my hair.  You did great each time you cut my hair.  You are the best Aunt.  So much love to you.  Love, Philip.

So there you have it!  A handsome haircut for Philip and a new lesson learned for me.

 Kit cutting Philip's hair

 All done!

 Before

 

See the resemblance! (Philip's favorite Beatle)

 After!