Wednesday, May 7, 2014

Update on Life

Today I noticed it has been awhile since I last blogged and this would be my first entry in May.  After a long winter this year, the sun has finally come out and given us reason to be outdoors more so we have been spending a little less time indoors writing formally.  Today I found myself thinking about what a "normal" life Philip is starting to have.  Of course his life is not normal in the way most people's lives are.  He still needs someone to support his communication all day and keep a close eye on him, but for Philip, this is as close to being part of the normal world as he has ever been.

This evening we went out for ice cream with another family.  Philip was able to order his own ice cream flavor.  He chose mint, a flavor I would have never chosen for him.  It was the first time he ordered ice cream for himself and he loved it.  I had always assumed he liked vanilla.  I wonder how many times he must have thought, "Not again, Mom.  Can't you choose something more exciting?"  My friend T asked Philip how school was going and Philip spelled, GOOD.  Then she asked if there was anything he wanted to say to her.  NOTHING, he spelled like I might imagine any other 11 year old boy respond.  I asked Philip if he had a question for her and he asked her about her job.  We all laughed in good nature about the brief exchange.

Since the weather has warmed, we have been spending more time outside taking walks, jumping on the backyard trampoline, and going to parks and playgrounds.  Philip has resumed hanging out with his friend Nelson more regularly.  He enjoys Nelson's company and though he is not able to talk to Nelson as much as he wants to during the time they meet, he writes him notes in between which I text to his mom.  Philip also has a few pen pals who are autistic and communicate as he does.  I can tell he has a real heart connection with these kids.  They share deep understandings about the world and God that we non-autistics will probably never quite grasp in the same way.    I'm so grateful to see Philip cultivating such real, meaningful friendships.

Another thing Philip has been doing is steadily working on his goals.  For the New Year he came up with his 14 resolutions for 2014 (written here).  He has not forgotten them.  Among the goals he is working on is writing his autobiography.  He uses his letterboard to write a small paragraph every few days.  It has been amazing to discover his point of view in his early years.  It no longer surprises me to find out how different it was than what I assumed.  If anything, I keep learning how faulty my eyes are.

Philip has also been working on typing with support at his forearm.  Philip sees typing as an important skill and having a voice output is an added bonus.  While Philip is quite proficient with his letterboard, being able to churn out sentences and paragraphs with relative ease, typing is a lot more work.  We have used his lesson time as a chance to practice typing his responses in short 1-3 word phrases.  Occasionally he can type a sentence.  As with everything, I continue to push the envelope to see if he can do a little more.

This week Philip typed answers to our Renaissance lesson (here is a portion):
What does Renaissance mean?  rebirth.
Where did it start? italy.
What cultures inspired the Renaissance? greek roman.
When did it start? 1300.
What era was it a reaction to? dark ages.
What happened in the dark ages? no becoming inteligent.
Would you have liked to have lived in the dark ages? no.
During the Renaissance? yes.
Why? talk about  new ideas.
What were some values of the Renaissance?  Knowledge, learning.
How was knowledge from the ancient Greek and Roman times preserved? the monks transcribed a lot of books.
Who were the monks? the help of god.

I then tried stretching him by asking him to type his answer to the question, "What is your motivation to type?"  Philip's answer:  i want to type because kids think u are smart going to do something effective.

One of the biggest achievements Philip has accomplished on his resolutions list is going to public school and being supported in his communication by his teachers.  It has been an up and down transition, but lately more up.  Last Monday, his teacher wrote me a note that Philip was able to identify notes on a staff using his letterboard in music class with typical peers.  He even went to the front of the class with his teacher to fill in a measure with its proper rhythm, notes, and rests.  They say he is getting better with his letterboard and participates in math, ELA, and social group well.  Philip wrote yesterday, I AM LEARNING SO MUCH, BELIEVE ME.  "How does it feel?" I asked.  WONDERFUL was his reply.

Relationships at home are becoming more "normal" too.  Philip and his younger sister Lia have been having their daily communication time with Lia using the letterboard.  This morning Philip remarked, LIA IS GETTING BETTER USING MY LETTERBOARD.  My husband has been reading to Philip daily.  I facilitate conversation with the family.  Philip even jokes around.  Once when his older brother Carlos was being particularly funny, Philip spelled, YOU ARE KILLING ME!  When no one laughed, he spelled, I AM MISSING SOMETHING YOU TALKERS HAVE.  THAT IS TONE OF QUOTE.  We all laughed at that one!

Like in any life, there are its valleys and peaks and everywhere in between.  Right now I am taking in the beauty of an upward climb.

 Baltimore April 2014

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