I guess I need to sign up for that thing where you write a post every day.  I haven’t missed a day yet, which is weird because I’m kind of waiting to run out of things to say.  It never ends, the constant drivel in my head!

Today was a busy day, actually.  I had a meeting at our church to discuss some of the missions work we’re involved with, and then I had to work.  Both were blog-worthy events.  The missions stuff I will post about in a protected post, because it’s a specific partnership with a major relief organization, working on a major health issue in Asia.  I’m excited because it’s a great way to use my interests and passions in ways that will directly improve people’s lives….well, Lord willing.  So when you see that post, let me know if you’re interested and I will shoot you the PW.

Then I had to drive out to someone’s house to interview them for a research project on autism spectrum disorders.  I work in a bunch of different studies; this one is on older adolescents and young adults in their transition from the service world in schools to the adult service world.  That’s not really relevant, though:  the relevant part is that although I’ve been doing this for three years, now, there are always interviews where I leave the person’s house and I think to myself, “YEAH!  I could do that!  What an amazing family!  Having a kid won the spectrum is challenging, but TOTALLY POSSIBLE”…and there are interviews where I leave the person’s house thinking that I really could never be in their position, that ohmygoshhowcouldIEVERthinkIcoulddothat and WOWITISSOHARD and PHEWTHANKHEAVENSIAMOUTOFTHATHOUSE.  Which, obviously, is not the best thing I could be thinking, but there are just some families with really, really, really limited resources, really, really, really limited kids, and lives in which everything is a major struggle.   And there are some families with really limited resources, really limited kids, and really rich lives.  And there is every iteration in between (on any dimension of that sentence:  unlimited resources, very capable-but-socially-challenged-kids…etc).

The mother I interviewed today was of the former ilk:  everything was a major struggle, the affected child was in her (!! yes, a girl*) mid-twenties (essentially nonverbal, living in a residential facility with some significant behavior issues), and the older daughter presented Mom with her own share of challenges, including two unintended pregnancies and an extended matriculation to attain a bachelors degree, hampered by finances and children.  Mom herself worked multiple full-time jobs and was not particularly enamoured with her husband.  Although she told me before I drove out to her house that she had very little time available for the interview (it normally takes 3 hours, and she told me she had no more than 2 available) she talked for about 45 minutes after the interview was over about her family, her stresses, and the challenges of her daughters’ limitations.

Normally, when I leave an interview like that, I breathe a sigh of relief that it’s not me.  I pray for the family – for their healing, for them to feel peace in the midst of all of the chaos – but I remind myself often that I have that luxury to be able to pray for peace and healing, to be able to walk away.  With our situation, I feel like anything short of that is awfully entitled on my part; we could be in those shoes, too.

But something struck me in the middle of that interview – a peaceful something – I’d call it God.  I looked at the 4-year old grandchild sitting, coloring pictures and asking for crayons in full, complete, and appropriate sentences with appropriate eye contact, hands held loosely at her side.  She looked about as typical as any other four-year old – even though her aunt is the individual affected by autism.  I thought, hey – that’s almost the same genetic risk we have – and it made me feel a little bit better.

And then it hit me, as we discussed finances and pregnancies and why my interviewee thought that marriage was the worst possible thing in the world, with children a close second (and knots forming in my stomach as she spoke):  it’s all about perspective.  Not my perspective.  Her perspective.  That’s the difference between the families with limited children and limited resources – not the differences in their abilities, although I’m quite certain they would say that; frankly, there is virtually no difference in the children’s abilities or the family’s resources.  It’s the differences in the outlooks, the expectations, the celebrations.

And on that note, I didn’t sigh with relief as I left the house.  Instead, I simply said my prayer for the family, thanked God for my ability to walk away from stress when she was unable to do so, and then prayed for the perspective to handle whatever He throws our way with grace, humility, and love.

DB often thinks this job is a nightmare for us, given our situation and my sometimes limited ability to implement appropriate boundaries in the process of this counter-transference.  However, it is days like today that I feel the job is a gift and a window into lives that I am blessed to try to understand.

(I will follow this post with some other thoughts on this topic later.  I understand that this is a hot-button topic on something that everyone feels very strongly about, and by no means am I trying to diminish the struggles of families raising children on the spectrum.)

*in the distribution of autism spectrum disorders, boys outnumber girls, 4:1, which makes it hard to recruit girls for studies (in fact, the other studies I work in do not enroll girls, with the exception of the little guys (toddler ages).  Given this girl’s very limited skills, I wondered about Rett’s syndrome, but it is not my question to ask.

Advertisements