Tuesday, July 9, 2013

So Hard

Philip’s newfound ability to communicate with his letterboard has been nothing short of a miracle to us, but it doesn’t mean it has been easy for Philip.  One thing that has been occurring more frequently is Philip has been banging his head.  Sometimes it is against the table or floor and sometimes he hits his head repeatedly with his palm.  It is clearly a sign of frustration and is very upsetting to watch.  I try my best to block him and he eventually settles down.  When I look at the past, Philip has exhibited this behavior during times of rapid learning or drastic change.  When Philip was around 3, he began a therapy called ABA which helped him start to speak to identify objects and make requests for favored things such as candy or chips.  The learning seemed to occur so rapidly in the beginning, but it never translated to using speech for real communication other than simple requests.  I do believe though that ABA gave Philip a great foundation of skills for learning, even though we could not readily see the evidence of it until just recently.  During that time, we saw Philip have tantrums for the first time, some with frightening intensity.  He was being stretched for the first time and it was so hard.  When we moved back to Buffalo from Miami in the summer of 2009, Philip seemed to have a hard time adjusting and once he banged his head so hard on our kitchen bay window that he cracked the glass. 

A couple nights ago Philip was crying at bedtime and I couldn’t understand why.  We had had a nice day at church and then a party with all of the soccer families from my 13 year old son Carlos’ team.  I asked Philip how he was feeling.  Philip slowly spelled, “I am awkward.”  I asked Philip what he meant by that.  “I can do nothing,” he spelled.  It was sad for me to hear that, but I encouraged him, “That’s not true.  You can do a lot of things.  You can read, spell.  You know how to swim.  You are doing so well communicating now and you will only get better.”  Philip seemed to settle down as I said prayers for us, and after I kissed him good night, the thought of Philip’s words lingered.

How hard it must be for Philip.  For years Philip had lived mostly an internal thought life.  I never knew what he thought.  I didn’t know how to access it and he didn’t know how to reach us so there was a great divide and in many ways we lived in separate realms.  Philip used stims to pass the time- pacing a path in the backyard mapped in his mind, twirling a leaf, drumming on the wall, or banging two blocks together.  What this all meant to him, I may never know.  

But things have changed drastically since we met Soma and learned Philip could spell and could communicate his own thoughts on a letterboard.  A bridge was built to link our worlds and it has been the most amazing thing to see Philip’s words and understand him for the first time.   But it is still hard, so hard.  For one, it takes a lot of energy out of Philip to communicate.  For us normal people, we can spew out paragraphs of words in a minute.  For Philip, he must painstakingly spell each word, letter by letter.  He must hear the question.  Come up with an answer.  Translate it in his mind to written language.  Coordinate his finger to point to the letter and keep track of his thought as he scans the board for the next letter.  It takes time, a lot of time.  One sentence can take up to five minutes sometimes.  It takes patience to finish spelling his thought and to trust the person on the receiving end will stay with him till the end.  Philip sometimes makes mistakes in spelling, loses focus, or has a need to take a break.  Sometimes he hits his head.  I will often ask if he wants to stop.  Sometimes he does, but more times than not, he wants to keep going.  As hard as it is, he wants badly to communicate. 
I admire Philip so much.  He is stronger and braver than me in so many ways.  Going out with his letter board to communicate with others is in many ways like trying out a foreign language in another country.  I myself am terrible with foreign languages.  I don’t try hard to learn them.  My parents speak Tagalog and Ilocano, languages of their native Philippines, and I lived in predominantly Spanish-speaking Miami for 5 years.  I had many opportunities to learn many languages, but I didn’t.  I wish I could have because it would have opened up the world to me.   Instead, when people start speaking a language other than my own English, I space out, leave, or ask people to translate.  I guess I am autistic when it comes to foreign languages.  My brain just doesn’t seem wired for them!  

So I tell Philip how proud I am of him.  His work is ten times harder than mine.   His mind is not wired for this world, but he works so hard to get through to us that he wants to join us.  I pray it will be easier for him in time.  I will do all I can to help him.  

                            Philip with Soma at the HALO Clinic in Austin, TX- Oct. 2012

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