Tag Archives: disability

Twenty Years of Preparation, Part 2

29496747_10213784597221913_6685827013879529472_nThis part of the story should be subtitled, “My Mom Life.”  Because for 12 years, in another of those neat little boxes in my mind, I put all of my experiences in raising my son Aaron, diagnosed with Autism Spectrum Disorder and a developmental disability.  For most of my career, while I am happy to share stories about the joy Aaron brings to our lives, I’ve kept the tough parts about our journey to myself.

I guess I’ve always seen those tough parts as what Allen and I share as Aaron’s parents, and somehow in my mind I’ve separated it from my life as a minister.  Schlepping Aaron around from doctor to doctor, to see therapists and specialists, to be evaluated and poked and prodded… Carting him each week to music therapy, each month for med checks… those are things I do gratefully as Aaron’s mom.

Before I go any further, I must stop and do a total “mom thing.”  I mentioned before Aaron is an awesome kid, but did I mention that he is also amazing, hilarious and super-cute? He loves to sing, he’s in love with a girl named Esther, he’s acquiring a great little sense of humor, and he loves riding his bike.  No doubt, he is a gift from God to the life of our family, and even Mark thinks he’s a pretty awesome big brother.

Here’s an Aaron-joke:  What’s the difference between a guitar and a fish?  You can’t TUNA fish!

OK, ’nuff bragging… back to the story:

I have always played our struggles with Aaron fairly close to the vest.  I suppose it’s my “issue,” but I have never wanted it to seem as if Aaron is a burden, because he isn’t.  Or that he’s more difficult than any other child, because he isn’t.  Truly, raising Aaron is about as easy and as challenging as raising our other son.  I have felt very protective not to over-share about Aaron in order to get sympathy or attention, and have often erred on the side of under-sharing.

And I’ve never really integrated my life as a minister with my mom life, until recently.  When I came to my new call at Pilgrim UCC, I discovered Allen and I weren’t the only family raising a child on the autism spectrum, nor were we the only family that included someone with a disability.  In fact, as we share our journey with this congregation, that particular bond is not only a strong one, but an incredibly common one.

We share the privilege of raising a child on the spectrum with several families at our church.  And since coming to Pilgrim, I have found a colleague who shares a similar journey.  More and more, I  have “coming out” as a parent raising a child on the spectrum, and a parent of a child with a disability, and instead of finding pity (which I feared), I have found strength, friendship, encouragement, wisdom, and love!  

My chaplain friends’ ears might perk up at the word “pity.”  And that would certainly be a wise thing to do.  Whose pity might I be fearful of?  Other people’s or my own?  Since I’m doing these posts for the purpose of examining my own call journey, I’ll address that question separately to give it the honesty it deserves.

Needless to say, mentally, emotionally, and spiritually integrating parts of my life that I had foolishly and intentionally kept separate has opened a whole new playing field for God to work in my life, my church and my ministry. 

Twenty Years of Preparation, Part 1

My first job out of seminary was the first place that hired me so I could pay the bills and live on my own in New York City.  I ended up working as an admin at Barnard College in the Office of Disability Services.  I worked with a passionate disability advocate named Susan Quinby, and learned an incredible amount not only from her, but also the students I interacted with each day.

Working at Barnard gave me the experience to move to my next job, an Assistant Editor at the John Milton Society for the Blind.  It was an organization started by Helen Keller to provide religious resources for the blind and visually impaired.  While there, I edited a digest magazine for children that was published in Braille, and put together a fairly exhaustive large print publication that was a resource of religious materials– everything from Bibles in large print and cassette (it was a long time ago!) to audio versions of Sunday School lessons for various denominations.

By the time I got to the JMS, I was already deep into defining my calling to ministry and completing my requirements for ordination in the United Church of Christ.  When I left the JMS to go back to seminary to take a few classes, I packed away all my experience working with people who have disabilities and disability advocacy into a box labeled “Not Relevant for Ministry,” and shoved it into the back of my mind.

While I always had opinions about accessibility in church council meetings, I really and truly let that box of experience collect dust in the back of my mind for many years.  Not even as my own child was diagnosed with autism did I connect those past experiences.

What about my son?  Aaron brought an entirely new dimension not only to my life (he’s a pretty awesome kid!), but also a whole new level to my denial of what God has been putting right in front of me for twenty years!  

Story to be continued…