I Love You

I had to write today.  November 16, 2013 will always be remembered because it is the first time Philip spelled the three most important words to me, “I LOVE YOU.”  

Love.  It is the motivation for the highest priorities in life- the reason we marry and start a family.  We want to love someone and have that love reciprocated.  

I love Philip and all my kids to pieces.  I know Philip has always loved me too.  I could see it in the twinkle in his eyes when he smiles at me.  I could feel it in the way he leans into me and smells my hair.  A few times I have even heard Philip speak the words “I love you” with his voice echoing back after I tell him “I love you.”  All of these expressions make my heart melt.  But this “I LOVE YOU” was extra special.  I was not expecting it.

This year my eyes have been opened to a profound truth:  not all is what it seems on the outside.  Just a short year ago, I viewed Philip as being the developmental age of a toddler.  He had hardly any speech.  His educational goals were that of a preschooler such as matching numerals to the number of objects and identifying action words.  He was not fully toilet trained.  It never occurred to me that inside Philip was intellectually and emotionally intact.  He was absorbing everything he saw and heard.  Because I didn’t accord Philip with the same intellect and feelings that a “normal” person would have, I am sad to say, I didn’t always treat him with the same decency I would have had I known he understood.  I allowed him to see the full brunt of my frustration toward him.  I yelled.  I cried.  I spoke about him to others in front of him.  I treated him like someone much younger than his age.

I now know autism cannot be cured.  I think we waste a lot of time, effort, money, and tears pursuing a cure that is not to be had- but that is a topic for another post.  Instead, I strive to heal my son, not from autism, but from whatever keeps him from being whole.  The things that keep him and others like him from being whole are many.  Not having a voice is number one.  When Philip was younger, I placed so much stock on Philip’s physical voice, but because it could not fully develop, his communication became a guessing game to all of us.  The things we called “behaviors” such as tantrums and meltdowns were probably both communication and frustration at not being able to communicate clearly.  RPM has changed that.  Philip now has a wide open and reliable way to tell us anything.  It is the biggest miracle!  Another thing that keeps Philip from being whole is not being able to fully participate in society.  We are helping Philip begin to do this by integrating him and supporting him in his communication during Sunday school and Stockade (scouts), a kids’ fitness class with regular peers, playdates, and just doing more things as a family.  In the future we hope Philip could be fully included in regular classes at school and further down the road find a meaningful job.  The way I now see it, the sky’s the limit!

This evening I was moved to begin healing Philip from my mistakes as a parent.  For Philip’s bedtime, I continued to read through Exodus.  We are at the part with the plagues.  It is neat seeing how God used the Moses/Aaron tandem to carry out his plan.  God spoke to Moses, but Aaron was Moses’ voice to Pharoah because Moses was “slow of tongue”.  I also read some more of the book The Reason I Jump.  There was a part where the author, then 13 year old Naoki Higashida who is also non-verbal, mentioned how he knew he made people’s lives difficult and it made him sad.  As I read it, I felt flustered, not wanting Philip to feel this way.  After reading, as our custom, I asked Philip something he was thankful for.  “LIA TALKING TO ME,” he spelled.  He had a great evening with Lia as she talked to him using the stencils.  At just 8 years old, Lia has amazing patience and a desire to do things with her brother.  Philip is starting to spell with Lia one word responses.  Then I asked Philip one thing he wanted prayer for.  Philip proceeded to spell, “ARE YOU DEPRESSED FROM KIDS?”

“Oh Philip.  I am not depressed,” I answered, “In fact, I’ve never been happier.  I am so glad we can talk and I can get to know how smart and thoughtful you are.  You are teaching me so much every day.  I have never learned so much.”  Then I knew it was time to apologize.  “Philip, I need to tell you something.  I want to apologize for how I treated you before we saw Soma.  I didn’t know how smart you were and that you understood everything.  I know it is not a good excuse.  I am sorry I made you feel like a baby and said things that hurt you.  I am so sorry.  Will you forgive me?”

“Y, (for yes)” Philip pointed.  “Do you have anything else you want to say to me,” I asked.

“I LOVE YOU.”

We held each other and I said “I love you” back.  We said our prayers as my voice shook and I felt God healing us both.           

 December 2011

  

A Hard Lesson

Part of the reason I blog is to clear up misconceptions about autism.  Last night Philip taught me about my own misconceptions towards him.

It was after dinner and I was cleaning up in the kitchen.  I sometimes sing as I clean, and this evening I was singing a song I made up with from some of Philip’s common vocalizations which are not words.  I’ve sang this before and thought nothing of it.

Afterwards I called Philip to the dining room for our after dinner conversation.  I asked him if he wanted to ask me a question or say something.  He spelled, “YOU ARE TEASING ME WHEN YOU SING LIKE THAT.” My heart sank.  I had never realized I could hurt his feelings in this way.  “Oh Philip.  I’m so sorry.  It makes me feel happy when I sing your words.  How does it make you feel when I sing like that.”  “SAD,” he answered.  I began to see the carelessness of my actions.  I apologized again.  “Do you have anything else you want to say to me?” I implored.  “YOU ARE TEASING ME WHEN I EAT ALONE,” he replied.  It is true I sometimes serve Philip something before the rest of the family.  I know what he likes to eat and it is often not what the rest of the family eats.  For example tonight I made enchiladas for dinner.  Philip looked hungry so I put some of the enchilada filling in a bowl and let him eat before everything was ready.  When the rest of the family sat down to eat, I served everyone the enchiladas except Philip.  I assumed he didn’t want any (from experience he wouldn’t touch them in the past.)  Again I felt warm with shame from his response.  “I’m sorry.  Do I treat you too differently?” I asked.  “Y (for yes). A LOT OF TIMES YOU TREAT ME DIFFERENTLY.”  

It makes me sad to think of how my ignorance has hurt Philip.  I have mistaken a blank face, little eye contact, and few words for not caring, not feeling, and not understanding.  Oh how wrong I’ve been all these years!  

It is a hard lesson for a parent to admit they are wrong, but it is necessary in the process to make things right.  I told Philip it was good for him to tell me how he felt.  I told him I was sorry for not being considerate of his feelings and for treating him differently.  I told him I have a lot to learn and he must continue to teach me.  Then I asked if he would forgive me.  “Y,” he answered.  We hugged and Philip leaned his head on my shoulder for some time.

There will be changes in the way I treat Philip from here on out.  I will stop to consider if the way I treat him is the way I would want to be treated (The Golden Rule).  I will try to treat him more like I treat his siblings by giving him the opportunity to partake in the family meal even if I don’t think he will eat it and by giving him more household responsibilities like the other kids.  I will continue to give him opportunities to tell me how he feels and how we can better understand each other.  And when I make a mistake, as we all do from time to time, I will try to learn the most out of it, seek forgiveness, and try not to repeat it again.   

   Chautauqua Institution August 2013