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My Story by Kelly Cole
I have recently taken a look at the website autismspeaks.com and watched Autism
Every Day and I highly recommend it. I was very moved by the parents and their plight.
I know I have said those exact same sentences at one time or another. "will I be
changing her diaper when she is twenty?....You can't really take a day off.......she
needs constant attention...my heart is breaking all day long.....I can never die.......this
is life long." If nothing else it let me know I was not alone. I love then line
"i didn't ask for this, I was drafted." That is so true. I also know my daughter
didn't ask for this and she doesn't have the ability to share her feelings or know
there are others like her. Her world is only as good as we can make it for her.
I wonder what it must be like being her. Is she happy? I don't know. I just don't
know. I like to believe she is happy and I truly hope ignorance is bliss. She doesn't
see people stare at her like I do when she can't communicate properly. She doesn't
understand when other children run to their parents because they don't understand
her words. That is what I see and understand. My heart breaks each time that happens.
And it happens often. I was in church once with my family and we were trying to
keep Robyn under control and not have her affect the mass at all. However, during
the 'peace be with you' an older woman stated "You have the worst behaved children
I have ever seen!" At the time my husband was floored and angry. I believe this
woman was truly happy in her ignorance, because she wouldn't want to walk in my
shoes for an hour. I used to try an explain but I don't have the energy to repeat
myself 50 million times anymore.
I have become an advocate for my daughter, mainly because.... well, because I have
to. No one else applied for the job. Just kidding. Seriously though, there is no time off, no vacation days
and no pay. However, I think there are benefits but in today's society they are not
as popular. I receive the benefit of patience, the joy of watching her learn something
new that was hard to learn and most importantly I know I can love her without being
worried if she will love me back.
Yes, my family is truly affected by my daughter's disability. Her sisters are now
feeling the weight of the burden of the responsibility. Their sister can never be
left alone. That is hard for teenagers to accept when they want to have a social
life, as they should have. They are involved in changing their sister if she has
an accident and they have to hide everything they don't want touched or broken. That
is hard for a teenager who doesn't like to put things away. They also are involved
in training their sister to do simple chores around the house. They have been hit
and bit, I can't tell you how many times. I would like to believe this will make
them stronger people when then become adults. I don't really know, but I know they
love their sister and try to do the best they can for her. At this point that is
all I can ask for. I watch them sometimes and look at their efforts to make their
sister laugh when she is upset. I have seen them work so hard to get her to pronounce
a word, breaking it up into small sounds day after day and celebrate when she finally
gets it. I have seen them sing and dance with their sister just to make her happy.
I wonder if they could put that on a resume, 'learned patience and caring through
disabled sister'.
We do have our selfish moments as well. The most difficult part of the day for our
daughter is showering and bedtime. When you are tired and you don't have the energy,
who will do it? You, of course. We get stressed out because our daughter has broken
many things in the house that we just can't afford to replace. We argue in our moments
of frustration and we get angry with ourselves when our frustration gets the better
of us. Our child did not ask for this and I try accept the behaviors as something
no one can control. Although, we give it our best effort. Our family has struggled
through more emotions and more often than any family should have too. But I have
seen families that have more difficult situations and I realize I have it good.
But I am also human and entitled to my emotions just as my family is.
As an advocate for my daughter and my family I have had to fight with school districts,
doctors, the government and others to make sure she has everything she needs to
succeed. Our goal is make her as functionally independent as possible. I know I
will not be able to take care of her forever and she will eventually have to live
with other people like herself. I can't ask her sisters to take care of her, because
that
wouldn't be fair. I want her to do as many things for herself as possible, but it
is slow and taking years to teach simple tasks. But the idea is not to give up and
keep at it. She can still learn, as we all continue to learn.
I hope this helps.
Kelly Cole
Montgomery NY
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