Hope

“Hope is a dangerous thing.”  I think this quote was from a movie, but I’ve also heard it in conversations regarding autism.  Indeed, hope is a hard concept to grapple with.  According to Wiki, “Hope is the state which promotes the belief in a good outcome related to events and circumstances in one's life. Despair is often regarded as the opposite of hope.”

We all need hope, so what’s the danger in it?  I have learned too well that the danger in hope comes from placing hope in the wrong things.  In the world of autism, there are many pitfalls.  First and foremost is the concept of “cure.”  When Philip was first diagnosed, I had this hope.  My thinking was that with enough intensive early intervention we could rid Philip of his autism.  So we worked tirelessly, putting him in school, therapies, and as many programs as we could possibly get him in.  We worked at home doing ABA, RDI, Floortime, sensory integration, and our own family circle time.  Then we got on the Defeat Autism Now (DAN) bandwagon and tried many questionable biomedical treatments, some which now make me cringe because he had no obvious medical problems, but were endorsed by DAN doctors as treatments for autism: the gluten free casein free diet, antifungals, B12 shots, creatine, fish oil, mega vitamins, even chelation.  I do not regret most of the things we did.  Philip’s teachers and therapists were amazing and really did lay a great foundation for his learning.  Our family bonded as we worked together to engage with Philip.  And even though the biomed treatments did not pan out, at least I could say we now know it does not work for Philip. 

The thing I do regret is allowing despair to creep in each time a “hope” failed to deliver.  This was compounded by comparing Philip to other kids who progressed faster and reading success stories of children who were “recovered” or had become “indistinguishable from their peers.”   It made me feel like a failure.  Between the years Philip was 6-9, was a time of resignation.  Philip had seemingly plateaued in his development and appeared stuck at a two year old level.  Even his cousin, at age 2, was surpassing him in speech and social skills.  Hope was barely a glowing ember.

It was during this time I drank deeply into God’s word.  Several  verses would become my mantra.  One was Romans 8:28- And we know in all things God works for the good of those who love Him, who have been called according to His purpose.  The other was Philippians 4:12-13- I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do everything through Him who gives me strength.  

I slowly began to put my hope in the right place- in God.  I would trust He would bring about good for Philip, whether or not it was in the way I had envisioned.  He would give meaning to our struggles.  As I became bolder in hope, I asked people to pray for us- a lot. Many people have prayed for Philip, but I have to give a special shout out to my ladies in Bible study- you know who you are.  Thank you from the bottom of my heart!  

Trusting God has lead me to seemingly chance events and amazing relationships with other families on the same road and further down the path than Philip and me.  And somehow in all this, God lead us to Soma.  Soma taught us that autism is not a tragedy.  It is a different way of seeing the world through a different neurology.  Soma offered us no cure, but a way to start seeing Philip for who he really is and accept him as he was made.  My hope for Philip now burns more brightly than ever!

Here’s a little exchange Philip and I had last Memorial Day.

Me:  What’s one thing you want me to know about you?

Philip: I never give up.

HOPE.

Faith

It has been increasingly hard for me to observe parents' lack of faith in their special needs child.  Yesterday I went to a meeting which discussed changes in state funding for many traditional programs for people with disabilities.  There will be a movement away from traditional day habs and group homes and towards supports for integration into the community by looking at each individual’s strengths and desires and providing funding to support them.  In fact, the individual will now have purchasing power to choose from unlimited resources.  In the past, the money was given directly to agencies and people would choose from a long standing list.  It was pretty much assumed that after graduation, one would automatically go to a day hab and/or group home.  During this meeting, I saw many angry parents, even one who stormed out in tears.  The general sentiment was that they did not think their child could survive in a wide open system, even with supports.  They wanted the comfort of the old system even if it wasn’t working for many and wasn’t helping their son or daughter reach their potential.  They lacked faith in their child.

My heart broke for these families.  I was in their shoes just 8 months ago.  I believed my 9 year old son would always be a toddler and never be potty trained.  I treated him as such.  We read the same toddler board books over and over.  I did almost everything for him.   I became resigned that it would always be this way.

We often rely on what we readily see.  We forget there is another way of seeing- through eyes of faith.  The Bible often makes reference to this.  Man looks at the outward appearance, but the Lord looks at the heart. (1 Samuel 16:7)  We live by faith, not by sight (2 Corinthians 5:7).  Learning RPM from Soma was a revelation for us.  It gave us a glimpse of what Philip was capable of.  For four days, Soma demonstrated her confidence in our son by teaching him lessons on his grade level such as the water cycle, Pilgrims, Aesop’s Fables, 2 digit addition, word problems, and butterflies.  We were astonished as he answered questions from her teaching, first by choosing between 2 choices, then progressing to spelling his answer on a letter stencil.  The highlight of the week was when Philip answered what he wanted for Christmas by spelling “RADIO.”  From then on, we looked at Philip in a brand new way.  Not as a 2 year old, but as a 9 year old trapped in an uncooperative body who needed support to show his true potential.  We started talking to him regularly, not “go car”, but conversationally and wordy like we did with our other kids.  We started expecting him to use the toilet, and guess what?  He did!  I continued daily lessons like Soma. Though it was extremely hard at first, we persevered because I finally believed in Philip.  8 months later I have a folder of wonderful things Philip has said through spelling with me.  A couple weeks ago, I asked him, “What is the best thing that has happened since you met Soma?”  Philip replied, “I am teaching you I am smart.”

The power of faith.