Katie’s Rocket
Ship
By Shannon Perry
I watched my son
playing in our TV room last night. It made me laugh, and in some
ways made me cry. My son was playing with my older daughters’
dolls and baby bed set-up. He would pick up the doll, carry her
about on his shoulder as if she were a real infant, just like
his dad does with his baby sister. He would pretend the baby was
still crying or that she was going to sleep and being fussy
about it. He pretended to check her pants and announced to us
all, " He stinky!" He changed her clothes and then put her to
bed rubbing her buns and talking quietly to her . All of these
things he has seen his daddy do. I think of the times he
pretended to be "Tigger" and bounced down the stairs until he
broke his collarbone. He pretends to fly or drive. He brings me
Lego flowers, primary coloured rockets, and trucks with Indian
tent doors. Watch out for the terror on the tricycle! hugging
the cat and making the dog dance about, barking as Alex pedals
from room to room. The next thing I know I have a puppy-boy
under my dinner table, sitting up and begging. What makes me
sad, and crying inside about all this normal bouncy small boy
behavior? My oldest daughter never did these things. My oldest
daughter never played pretend. It didn’t occur to me this was a
problem until a few months ago. I didn’t understand until that
moment there was more than just social awkwardness and
administrative labeling going on here.
How does a parent know when to look for
help? How does a parent even know that the quirks personality of
a child is more than just environment? I don’t know. How does it
affect a child who knows they are different but don’t really
know why and cannot get a handle on relating to others? What
does this do for the child’s self esteem? How does this affect
the family? What kind of mother am I, that I didn’t know there
was something wrong with the picture? When does a parent know
that the reasons that this beautiful, bright, shining star has
more going on than a difficult adjustment to school and other
family issues? When are the teachers and psychologists’ right?
When are they wrong?
We found out three years ago my oldest
daughter, has a form of autism called Asperger’s Syndrome.
Welcome to Katie’s roller coaster through life. Welcome to her
rocket ship.
Oh my god! My beautiful, perfect, happy,
no-trouble baby is not perfect. She can’t have autism. That’s
just another label to cover behavior people can’t explain away.
She acts differently because, because we spent five years
overseas. She was in the British schools learning things their
way. We moved seven times in seven years with the military.
That’s why she has developmental delays. See she walks and she
can talk clearly and she knows all these words. They are just
being stuck up. The teachers are looking for an easy way to
control their classrooms. I’ve read about how sooo many kids
have been overmedicated. That’s what’s going on. My ex-husband
was on Ritalin as a child. It sure didn’t help him. His parents
were clueless. She’s acting this way because of the divorce!
Yeah that’s it. I’ll go along with this, nod and agree, if it
gets her the education she needs to go to college.
Katie, why can’t you get this? Why do I
constantly have to watch you just so you can complete one simple
task? Why am I always yelling and spanking? I can’t spank you
every day for every time you do something wrong. I don’t want
you scared of me. God help me! This isn’t what I want for you!
You are hurting other people. You are hurting yourself! I’m
failing my daughter as a parent! I don’t know how to help my
baby. What am I going to do? Katie you need to stay on this
planet. No dream ships for you right now, baby.
We have gone forward since the initial
diagnosis. I went back to the doctors, ready to listen in
January of last year. I bought books to read to help me
understand better. I went to her instructors and her school
counselors. I researched on the Internet. I asked them all what
should I do to help her. I read. I read some more. I’m still
reading. I’m reading more things, again and again. I quit
spanking, most of the time. I forget sometimes and struggle with
my frustration, anger, and fears. I searched for different forms
of discipline that were more constructive. I accepted that Kate
has to be on medication, every day, but I hate it. A highly
structured life-style, schedules, immediate accountability,
supervised and encouraged friendships are key elements to her
personal growth and future. I have to accept that I will always
be in my daughter’s business. No matter how much I hated the
strictness of my parents and the structured regimen, so military
in mindset, that we must maintain, it is what these people tell
us are in her best interest. So we do it. I am struggling to
teach her how to navigate past the wormholes, not to crash into
the space debris, how to follow the checklists doing step one
before step five. I won’t always be here to sort things out for
her.
What about the rest of our family? Amber
never really pretended until she was four. She was and is a very
serious and sensitive child. I t is often difficult for her to
understand that things Kate says or does aren’t intentionally
mean or thoughtless. She is struggling with issues of being the
younger sibling that often has to act like the older one, as
well as just being a really smart third grader. Alex is a very
exuberant, confident, and jealous of baby sister, normal little
boy. Katie’s issues affect him differently in that she can reach
his level more easily than the rest of us in play. For him, some
of Kate’s lack of maturity gives him a perfect playmate.
Jacqueline is a happy, laid back, busy, nosy one year old. For
some reason, usually Kate can calm her. Kate’s problems weigh
heavy on all of us at times though. I have little time for
myself. I struggle to go to college and attend classes. A bad
morning for her blows my getting to class, because she can’t
even handle her own classes. Someone has to take care of her. A
bad night for us, and we’re lucky to get fed and to bed, much
less studying or writing papers. My husband tries to hold down a
full time job and go to school too. We know that we have to plan
for the future. It’s a race against time to try to earn a
sufficient income to make sure she will be taken care of when we
are gone. Kate’s biological father has denied the now,
five-year-old diagnoses and recent evaluations. Our goals
relating to him have evolved from trying to force inclusion in
her life to damage control and working to limit his access and
influence until she is able to handle him on her own. I have
learned so much on the law relating to the rights of minors and
non-custodial parents, and disabilities. Not much support
legally in those areas unless you have an attorney that is
knowledgeable in neglect and emotional abuse issues and a judge
who understands that a treatment plan is just as valid for a
learning disorder as it is for a child who has diabetes or is in
a wheel chair needing dialysis or some other obvious medical
issue.
Most parents spend their time fighting
the school system to get services and support for their
children. Getting recognition of diagnosis is one thing, it
seems. Now, getting treatment is another, in appropriate
fashion. From what I have read and determined by many interviews
from many sources, once you have a diagnosis it is acceptable to
warehouse children into special education classes rather than
actually try to teach them something. Fifty years ago, children
with learning disorders would have been institutionalized and
forgotten. It seems today, that they are just forgotten in some
classroom to be contained until the parents can come and get
them again. Now however you can fight that with the Americans
with Disabilities Act. It’s just that you can’t fight parents
who don’t want to help their children with that law. You have to
be sneaky. You have to approach it under child endangerment and
interference of prescribed medical treatment. Nailing the
medical profession down so that a parent can enforce a treatment
plan, whether it’s a school or a non-custodial parent, is a
challenge to say the least. From our experiences, psychiatrists
and psychologists are the worst about putting anything in
writing. We persist though. Every day I learn something new.
Every day I try to remember what we have achieved and what our
goals are, because Katie is doing better now than she was five
years ago.
Personal relationships are difficult
areas for Katie, but we have bright spots of sunshine. Kate has
friends who are brave enough to stand teasing for her unique
perspectives. We never expected our children to be the most
popular people in their classes. Sometimes though, it’s painful
to listen to her when she doesn’t understand why someone she
thought was her friend doesn’t play, with her any more. I hear
from other place that the person to whom she is loyal to has
been unkind. I hold her, while she cries uncomprehending tears.
I celebrate the children that invite her over, throw her in the
pool, and just enjoy her. I am glad of the ones willing to be
mocked, teased, derided, for a friend because they have the
character I want her to learn to appreciate and imitate.
She is an A-B student who happens to be
a good dancer. She is a state level distance swimmer with one of
the local year around teams. I appreciate her coaches’ patience
and encouragement. She had the most beautiful voice. Her
teachers tell us that she is musically gifted. How I wish I
could afford to develop that.
We still have lots of issues. How will
we get through adolescence? I know she has some interest in boys
like many of her peers. I want her to be able to approach
relationships with stability, security and be strong enough to
walk away, or put that jet pack on and fly as fast as she can to
a safe port. I want her to dream her dream ship dreams and know
where home is.
We’ll be okay. Some days are rougher
than others though. My husband reminds me when I stress too
much, too long, that now, Katie’s bad days, are what we
considered good days, before. These days the rocket ship gets
off the ground, without exploding on the way up. We actually
make the trips out and come back safely on an almost daily
basis. Some day Kate will leave our orbit, and travel to other
worlds beyond, and she’ll be okay. I have to believe that.
© Shannon Perry
Some
are the melody, some are the rhythm, some are the harmony