The transitional minister at the Unitarian Church I attend
was recently ordained. A well-meaning
congregant, asking how our minister now felt, started to answer her own
question by saying something along the lines of, “it’s just a confirmation of
what already was”. Interestingly, the
Reverend Laurie denied this. Whether it
be the official title, or the collar, or even that something supernatural
occurred when we all laid hands upon her, charging her with a new
responsibility, something fundamentally changed on that day.
This idea of a label changing reality instead of just
describing it is something I am grappling with for the next few months. My quirky, ultra-sensitive little girl will
finally be formally assessed in the springtime by a pediatric neurologist. I fully expect that she will, at the very
least, be diagnosed with high-functioning Asperger’s.
As a toddler, my daughter was evaluated through our school
district and received occupational therapy and social skills services. I appreciated the willingness of the system
to step in early and help, and by the middle of kindergarten, such assistance
was not deemed necessary in her educational environment.
The truth, though, is that my little one’s challenges extend
far beyond performance in school. She
is bright and can do well academically.
She can “hold it together” behaviorally during the school day. So, as far as the district goes, there isn’t
a need. It’s not their concern that she
really doesn’t eat at school, and at home only consumes a very small selection
of specific and not particularly healthy foods. It’s not their problem that smells, tastes, sounds, and textures
can easily overwhelm her. Certain tactile
sensations which come with daily hygiene, such as hair or teeth brushing, are
downright painful to her. A new or
unexpected experience can be seriously anxiety-producing, and that won’t show
during a routine school day.
Many of the stresses in my little girl’s life are not going
to appear as a problem in school; she’s in that gray area of superficially
typical, but life is harder than it should be for her. She and I both need tools and support to
cope. We need to use particular
strategies for overcoming obstacles so that success and happiness can be
achieved. So I had to go look past the
minimal services a school district will provide because actually, these are
life challenges. Last month, I made
that first phone call to a specialist referred by our pediatrician, and I
filled out a large stack of paperwork, finally putting it all out there.
Now I wait until the three lengthy evaluation appointments
which are still months away. And while
I wait, I think about what I hope to gain from a diagnosis. We may or may not get more services at
school; they may not really be necessary.
Maybe I will feel validated in my suspicions, but that’s not
particularly important. Of course I
hope I will get more encouragement and ideas about handling the difficulties. That is my clear desire.
I think back to the minister and how the label actually
changed her reality. And it makes me a
little sad that that might happen for my daughter in this case. She may be a child on the autism spectrum. Will the label change who she is? No, but if it changes others’ perceptions of
her, including mine, then honestly there will be a very real shift.
