A Life Apart: Parent Perspective on Living with a Child
with Asperger’s
LESSON TWELVE: THE SIBLING CONNECTION
OBJECTIVE: Come up with one way in which you could improve relationships
between your child with special needs and his or her siblings
Something very odd, rather telling, took place before I wrote this
lesson. Dr. Ruth Smith, the administrator of the project in which the
website and courses were developed, took a look at my early drafts.
“There is no chapter on siblings,” she said. “You
have to include this topic.” It wasn’t an intentional oversight
on my part. But I didn’t write it. Why, I wondered. Then it hit
me: Of all the mixed emotions around my family’s life with a child
on the autism spectrum, this one hits me the hardest.
In all fairness, I admit I bring my “only child” baggage
into play on this topic. I hated being an only child as I grew up. I
longed for a house where there was lots of commotion, laughter, playing,
talking. I grew up all alone in a quiet house with a typical mother,
who was full of anxieties and fear as the child of parents who perished
in the Holocaust. And I grew up with what I now perceive to be a depressed
and maybe even Asperger’s father.
My happiest early memories were not of times at home, but of times
spent at the neighbors next door. With four children, the house was
lively and busy. There was always someone to play with. It was a neighborhood
hangout.
This is what I always dreamed my house would be: full of children,
the neighborhood magnet, the place where kids hang out, ask for snacks,
beg to sleep over…
As a teenager, I developed close friends and was less lonely. But as
an adult, I envy some friends who have siblings with whom they are close.
I realize that even if my son did not have special needs, there is a
strong possibility that the two would not be close. But with his difficulties,
there is virtually no chance. And he misses that connection too. He
has said: ”We were closer when we were little.” And they
were.
Three years younger than her brother, my daughter was born knowing
how the world works. Her social skills are very intact. She would push
him, both physically and verbally, to do things with her, to force him
to interact. They often had matching T-shirts or pajamas, in which they
proudly posed for many photos. Sitting in their tiny chairs, they watched
the same TV shows together. They built forts and tunnels out of sofa
pillows and large plastic waffle blocks. They organized a “rock
concert”, a Woodstock of sorts- for their stuffed animals. They
buried each other in the sand at the beach.
Yes, they had some closeness, memories of which I treasure, and which
are documented in album upon album of photos.
But she is so beautifully typical in her development and interests that
now they share little in common. She tolerates him. She has not evidenced
embarrassment or a lack of desire to have friends over. She is kind
to him, unless he annoys her too much or at the wrong moment. But they
will never be close. They will not confide in each other, exchange holiday
greetings or phone calls or worry and plan together how to be of assistance
to their some-day elderly parents. They will not create an extended
family, homes where cousins visit each other. I fear that he will be
the “weird Uncle” who has to be invited to holidays but
no one really wants him there. I worry he will become an obligation,
rather than a friend.
We have tried very hard to not make her feel responsible for her brother.
Her duty is to care about him. But we acknowledge with her that he can
be difficult, annoying, upsetting and embarrassing at times.
All that being said, she wrote a college application essay about her
adoption and the positive elements and opportunities it has given her.
Her words about her brother are short but powerful: She says without
being adopted she would never have had the chance to know the “amazing”
person her brother is and would not have developed the compassion and
patience she has.
She has learned a lot from being his sister.
Click here to see What Other Adult
Siblings Had to Say...
Activity:
Preview this site before passing it on to your child or children
who are siblings. It was created by a sibling for siblings.
www.siblingsofautism.com
Many large pediatric hospitals have supports for siblings:
The Sibling Support Project, CL-09
Children's Hospital and Medical Center
4800 Sand Point Way, N.E.
Seattle, WA 98105
Phone: (206) 368-4911
Fax: (206) 368-4816
http://www.thearc.org/siblingsupport/
An article on Asperger’s for Siblings:
www.suite101.com/welcome.cfm/aspergers_syndrome
