“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.