By Guest writer Angela Barth
If you walk by my house on any given time of day, there may
be screams emitting from it reminiscent of a gothic horror film. There are no
innocent victims being tortured inside; they are simply the ordinary sounds of
daily life living with a child who has Asperger’s syndrome. Asperger’s is part
of the autism spectrum of disorders, and most individuals are high-functioning,
meaning they are verbal, fairly self-sufficient, and can survive in the general
education setting at school. However, they share a similar set of challenges
such as rigidity in schedule, sensory sensitivities, and difficulties
interpreting social situations. My son’s distress usually involves some sort of
stimulus or misunderstanding that the general population is wired to process
without invoking a reaction. Cold clothes, loud noises, saying “I’ll think
about it,” and not having a clear schedule for the day are all things that
could potentially cause a screaming meltdown that is mentally and physically
draining to all involved.
Being a special education teacher, I feel I should
effectively know how to parent a child with special needs. However, I find
myself ignoring my son’s longing for schedules, alone time with me, and
solitude because it does not fit my vision of raising a “perfect” child.
Instead of being Jesus taking the cup God gives me, knowing His ultimate plan
is for my sanctification, I’m rejecting it, thinking it just doesn’t fit with
how I want my life to be. And I find myself focusing way too much on the cross
of autism, and not on the resurrection that follows along with it.
Although public meltdowns can be quite embarrassing, my son
has a gentleness and simplicity about him that is refreshing. He loves sports,
but doesn’t need to be on a team to find his worth. Isn’t he the more rational
one who plays for enjoyment instead of frantically being carted around from
practice to practice? He sleeps in a nest of stuffed animals that he has
created and says his plush are his best friends. As immature as that sounds for
an 11-year old boy, how freeing to know what you love and not feel judged by
societal expectations. And his vocabulary and non-stop observations of the
world are his most endearing characteristics. We were on a recent trip to the
grocery store, and he was talking about how much he loves his stuffed animals
and said, “I’m a plush aficionado. How many 11 year old's do you think use the
term aficionado?” I told him not many adults I know use that word, and then
realized too often I let his negative behaviors instead of his gift’s, dictate
how much I love him.
Slowly I am realizing my son’s disability is leading me down
the path to holiness and humility. Daily I have to sacrifice to make sure my
son is doing everyday tasks that most children do automatically. Daily I have
to empty out my heart to Jesus and say, “Give me the strength to do your will,”
even if that includes listening again and again to my son talk about his
alphabetical list of cartoon characters. And in the middle of arguments and
meltdowns, especially in public places, I pray to love my son how Jesus loves
him. A disability is only a disability if it inhibits something. What my son’s
disability inhibits is temporal, but spiritually it has given me the joy that
only comes from fully emptying yourself out to others.
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