Day 11: National Siblings Day (A day late)
So, yesterday was National Siblings Day. Who knew there was such a thing? And so, a day late, this post is in honor of
siblings.
I come from a large, loving, sometimes dysfunctional family
of seven children: four girls, three boys. The youngest of the four girls was my sister
Kathleen, or Kiki, who was severely handicapped. For as far back as I can remember, Kiki was a
central focus of our household. I don’t
remember her birth, her arrival, the cerebral palsy, the Hirschsprungs, or the
stroke. My earliest memories of her are
when she was a toddler, scooting around the floor, legs folded by her side, her
bad arm tucked tightly close to her belly, and her good arm dragging and
pulling her around the floor. While her
issues were at least in part driven by physical complications she endured as an
infant, she certainly had many character traits that are similar to those characterized
under the Autism spectrum today. Kiki
attended a school for Special Needs Children, and the big treat when we were
young was to go with my mother to pick her up at school. Her school was unlike any other place we had
been, and the dedication the teachers felt was palpable from the minute you
entered the front doors. They loved
Kiki, and, simply, because we were part of this special girl, they loved us
too. It was the first place where I felt
it was a privilege to have a special needs sister like Kiki. And it was the first place I met other
children like her. It was interesting to
me then – I had always felt like there was no one in the world like Kiki – and
here, in this little school, there were several kids just like her. Nowadays, the prevalence of Autism is
staggering. Nearly everyone knows
someone touched by it. Kiki attended
that school for quite a long time, but as she grew older, it became increasingly
difficult for my mother to care for her alone.
And thus began the heartbreaking journey of finding a suitable living
arrangement for her. A crossroads, I
fear, many people with severely disabled children find themselves at. We
wanted our family, our love, our comfort with her, we wanted it all in a
completely new environment with people that had never met her – it seemed
impossible. I remember going with my
mom, looking at places – it was agonizing, and now, with Coleman, I have an
even greater appreciation for the decision my mother had to make. We eventually found a place we all seemed
happy with – the director was wonderful and he seemed to relate to the children
effortlessly. We also loved that the
other children there seemed more like Kiki than at any other place we had
visited. The move went smoothly but it
was simply devastating, most of all on my mother. Kiki grew into a young woman, but remained to
all of us a child still. She came home
on intermittent weekends, and sought only a soft couch to curl up on. She loved to tap a Tupperware bowl, loved
music, and, most of all, she loved our family.
She didn’t say I love you with words, but she showed her love in other
ways. Kiki passed away unexpectedly
almost 2 years ago. It was a devastating
loss of a daughter, a sister, a cousin, an aunt. She gave us what only children with special
needs can: the ability to know, understand,
accept, and love the differences that make us who we are. She provided a lifetime of lessons about what
is truly important in this world and our family is better for having known
her.
Coleman is not like Kiki was – they are very different. But just as my siblings and I learned from
Kiki, Coleman is teaching his sisters very similar lessons. Like all little brothers, Coleman can be
embarrassing and irritating at one moment, and immensely loving and funny the
next. But unlike other children,
reasoning with Coleman will not work. And
there are plenty of days where it can be hard having him for brother. Last week, Billy went to drop Emma off at a
new friend’s house and Coleman was with them.
We have to really prepare Coleman when he is coming along for a drop off
– tell him over and over again what the plan is, how Emma will go into the
house, we will leave, and then we come back and get her later. He doesn’t like it when the girls leave. When they arrived at the front door that day,
a gentleman answered and informed them they were at the wrong house – the house
they wanted was the one next door. They
turned to go, but now Coleman was confused.
He had been prepped that Emma would go in the house. Why wasn’t she? “Go in house Emma!” he started yelling. Billy was already telling him the problem,
that yes she will go in a house but not this one. “We made a mistake” Billy tried to tell
him. But he didn’t get it, and his
unhappiness was escalating. “GO IN HOUSE
EMMA!” he yelled at her, trying to grab
at her and push her in. Billy had to
pick him up, yelling and crying, and carry him down the walkway and up to the
next house. Emma’s friends answered the
door and by now Coleman was really upset, yelling for her to go back to the
other house and go in. Emma was upset
too – embarrassed by Coleman, mostly because she had talked about him so much,
about how wonderful he was, and here he was a complete crying mess. She felt bad too, for Coleman, because she
knew how confused he was. She wanted to be mad but instead she looked like she
would cry. Things like this happen somewhat often (not
going to the wrong house J)
and you just have to roll with it. But it’s
hard for siblings. On the flip side,
Coleman has also shown them a tenderness and innocence that they adore, and
sometimes their friends witness it too, and that is pretty special. Coleman adores these girls, and asks
endlessly about when they are coming home if they are out. And despite the ups and downs, the girls adore
Coleman too. They understand his
scripts, his silly language, his quirky habits and his not-so-endearing
moments. He has embedded in them a level
of compassion that I’m not certain they would have ever known otherwise. He has taught them to not judge, not take a
face value what you don’t know, not to criticize. Above all, he has taught them about
unconditional love. And in the end, that
is what Sibling relationships are all about.
On National Siblings Day (well, the day after), a big shout out
to all amazing siblings out there, especially those with a Special Needs
brother or sister. They are lucky to
have you.
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