Wednesday, April 28, 2010

Hearts on Fire: Gentleness. My personal statement at church 4/25/2010

I am a special needs advocate. Let me start by saying that I love this new life of mine. It is not at all what I thought my life was going to be, and it certainly has its heartbreaking & challenging moments. However, through this new life, I see that God is with me every day, working with me, worrying with me, guiding me, and sending angels to help. Serving this population reminds me daily of what is truly important. It is not about acquiring things or being fastest, richest, and most "successful" as our society defines it. It is, however, about love, relationships, and a good dose of justice.

My life BC (before children) was all about music – and particularly my singing career.
I travelled & sang professionally, lived the life of a starving artist, and after Rob & I married, started teaching at the university level. I was living my dream of making a living off of music, and loving it.

Fast forward several years. Our first child has taken his time learning to crawl & walk, is not babbling as expected, and does not play patty-cake. It is our long-anticipated and dreaded "diagnosis day". The child psychologist gently says to us that it is their opinion that he meets the diagnostic criteria for Autistic Disorder and Severe Receptive and Expressive Language Disorder. Time is given for us to process, recommendations are given to us, and we start the long drive home to Bloomington. As thorough and professional as the day has been, at the end of the day, we were sent home with a thick packet of information, an invite to stay in touch if we'd like, and well-wishes. "Good luck", essentially.

I recall the following months & years: so many systems to navigate, so much information out there. I wanted a reliable source of information – someone to guide me. I kept thinking I had all sorts of tire spokes of help but no hub. It's not like you get a diagnosis for your child and they implant a microchip in your brain to know how to deal with insurance & schools, especially while your world has just been rocked to its core and your brain is spinning and grieving.

We moved to Indianapolis almost three years ago. I initially thought "Ah, here is my opportunity to get a vocal studio going again!" And yet, once we moved here, I found any reason I could not to make the phone calls, connections and introductions I knew I needed to in order to be a professional mezzo soprano here in Indianapolis. I didn't want to be a professional musician anymore. But, once I allowed myself to make the unthinkable realization, I felt such freedom & relief. Then the next big question came: so what do you want to do now?

More weeks of pondering, praying. And then it came to me: I remembered that "diagnosis day". And I realized what I wanted to do: I wanted to be the person that went along with that packet of information. I wanted to be the person who would hold a family's hand once they got that diagnosis, and guide them to the help that was out there so no one would have to do this on their own again, like we did.

So I started talking to anyone that had any manner of connection with the special needs world.
I now work at ASK (About Special Kids), a non-profit state-wide organization that directs families of special needs children to the resources and supports that are out there. Any question that a family has, we can help them – free of charge. I love this work. Yes, most of my time is spent listening to heartbreaking stories and the unfair problems that these families have to face. For a majority of the families, I am helping them fight for their child. But I am holding their hand through it, and they do not have to face it alone. There is help. We can make the world a gentler place for these children. It is my ministry. It sets my heart on fire.

Many families with special needs children simply don't go to church because it takes real work to have their child participate or even be present in Sunday school or in a worship service. Our experience here at North has been such a lesson in acceptance, diligence & willingness to make this work. On our first Sunday visiting here, when we got to Miss Dana's kindergarten classroom, we took a deep breath, and started in on our mantra, explaining how our child Thomas has autism, and that means….and Dana looked at us, smiled and said "I've been teaching special ed for 20 years." Moments later we were here in the worship service, our hearts at ease, knowing that he was well looked-after for that hour. And we could have an hour in church, an hour to restore & rejuvenate, be present with God, and gather the strength for the week ahead. Last January, Janet called us to start the planning & discussion about moving Thomas up to the 1st grade Godly Play classroom that following August because she wanted to make sure that they were prepared for him and could provide an environment that would work for him. She beat me to this! That is a stunner. I applaud North's Radical Hospitality initiative and pray that we will all move forward with this, especially welcoming those with special needs and developmental disabilities and their families. What a gift to have a place that is loving and accepting, especially in this world that is not particularly gentle.

These children, (who will grow into adults) require a gentle world. Many times, it simply would be easier just to stay home and hide. But we cannot. Because these children – my son included – have so many gifts to offer this world. I know this because the pe ople who have taken the time to let my son into their heart and get to know him, feel better around him. There is nothing like his smile, his laughter, and his eye contact. It is at these times that I truly believe that I am seeing God. God in action, God through him, God in him. God in these children, in these people. I am so thankful to this church for being a place of gentleness for Thomas.

It is what we have found so far at this church, and what we hope can be offered to even more children & adults with special needs & developmental disabilities here in this place, among these people.


1 comment:

witchcat said...

Sniffle, sniffle. Beautifully said.