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Most parents who have kids with disabilities usually seem
to be fairly normal people. Others,
who don't have children with disabilities, sometimes tell us what saints we must
be to do all the things we do. Those
of us who have been at this for several years know we're not saints.
We know how long it took us to get to this place.
This place where we appear to be capable and normal.
Each of us deals with the disability issue in different
ways. Some accept it as God's way.
Others accept it as a challenge to grow.
Some are angry. Some are
sad. Most of us bounce back and forth between.
We each cope in different ways too.
Some advocate. Some scream. Some
hide behind humor. Some silently
accept. Some use their spouses as
whipping boards. (As well as any other person who happens to be close.) It's a
mixed up, jumbled up mess whenever you try to figure out what or how you are
handling this.
Most of us never actually figure it out.
We just continue to plod along, hurdling each new obstacle as it arises.
Never fully understanding exactly what it is that drives us. Perhaps it's
better that we don't know. Sometimes
I have moments of startling clarity. The
other night while talking to bunch of friends, someone said that it was okay to
scream. Most did their best jungle
scream, but I couldn't. The
conversation had been about kids and Christmas. I shared with this group that Christmas was the worst for me
because my youngest couldn't see all the lights. Somehow her blindness always seems worse during this season
when the full impact of blindness and all it entails really tears at my heart.
Suddenly I knew that there is a silent, constant scream
within me. I do my best to muffle
its vibrations. I keep busy.
I do what has to be done. I
advocate. I write.
I try to keep the scream buried. Sometimes
I think I fear that if I do scream, I will never to able to stop.
Some people may say that I still haven't totally accepted
by child's disability. Maybe I
haven't. Maybe I never will.
Maybe the scream is my way of not accepting.
Who knows?
Many
of you will understand what I am trying to convey here.
I'm sure many adults with disabilities also have the silent scream
within.
It's caused by all the unfairness and frustration that always tags along
with disabilities.
It's the force, the adrenaline, the vibration that keeps us moving,
whether it be in mind or in body.
It can be channeled into constructive areas or it can lead straight to
destruction.
The person who feels it must make the choice - whether to scream aloud or
to continue to scream silently.
Kids have the right attitude. If they ask Mom for
permission to do something and she says no, they go directly to Dad and ask the
same question. Sometimes, it works and they get a yes from Dad. Sometimes not.
But they know what they want to hear and the no answers aren’t acceptable, so
they keep on asking.
Parents who have children with developmental delays
and disabilities have questions. Lots of questions. Many times, when a question
arises, it’s not really a question. It’s a confirmation. In other words, the
person knows what they want to do. They simply want someone to confirm that what
they want is valid or reasonable.
The truly stubborn parent will ask this question of
every professional they come in contact with until they get the assurance
they’re seeking. The new or timid parent will accept the negative answer and
go no further. The point here is not to imply that professionals don’t have
the right answers. They do have the answers to what they think you have asked. They don’t
always have the answer that you actually want to hear though.
Also, every person is at a different space and time
in the disability movement. The director of the County Board Program might give
you a different answer than a teacher who teaches in an inclusive setting, or
the speech pathologist who might teach in more than one program. None of them
will give you the wrong answers, but they will answer from their perspective. If
you are not satisfied with the answer you get… if it leaves you feeling
somewhat defensive, or if you feel they really didn’t understand the question,
don’t stop asking. Ask the next parent or professional you encounter.
Parents are always at differing points in the
disability movement, so they too might give you different answers to the same
question. You have the option of
asking this question as many times as you want to though. You may have 25
different answers and when you ask the 26th person, you may finally
get the answer you’ve been seeking. When you get that answer, you’ll know
it. Suddenly, what you should do will seem clear and there will be no more doubt
as to the course you should take. The question will have turned into a fact that
requires action.
An example of this type of question: A parent asks,
“I have a five year old with a specific disability. My two year old is
displaying many of the same symptoms. My five year old got a lot more services
once he had his diagnosis. Should I get a diagnosis for her now or wait until
she is three
This question was asked of a panel of experts. The
parent got three different responses. One person responded that it took only one
delay to receive Early Intervention services, another responded that she was
probably more likely to recognize the problem since she’d had experience with
her other child, and one told her that she should get her diagnosis now, so she
could receive services from the school system when her child turned three. The
last answer was probably the the answer the parent was seeking. She just wanted
some confirmation that what she wanted to do was right.
The three different answers she got to her question
were all correct. Yes, her child qualified for services now. Yes, due to her
previous experience, she probably was correct in her assumption, and yes, she
should get a diagnosis now. The total of the answers gave her a more complete
answer, but only when you have a group of professionals do you receive that kind
of answer. Usually it’s a matter of asking the same question to different
people at different times before they all add up to such a complete answer.
So, as I stated at the beginning of this essay - Ask
until you get the right answer. What you instinctively knew as a child was
right.
Who said life had to be fair?
I realize my life did not come with a guarantee stating I would be
guaranteed happiness and success. But
even knowing this, I still have days when I resent other people's
"normal" lives. I rant
and rave about the injustice of having two atypical kids and the way my life has
turned out.
I long for that "normal" life, and I wish
my biggest problem of the day was which dance studio to choose for the girls'
dancing lessons or what dress to wear to the church social.
On these days I wish my kids belonged to anyone but me.
I did nothing to deserve this!
But then, after I've ranted and raved it all out of
my system, I stop and think back to when my life was normal.
I still had bad days then, but the things I worried about!
Was my car clean, and were all the weeds pulled out of the cracks in the
sidewalk and why hadn't so-and-so returned my call?
In retrospect, they were all so trivial.
At least now I have legitimate reasons to be upset.
We're talking about social injustice, poor professional attitudes and no
health insurance. These are issues
that mean something and the decisions I make will have some pretty far reaching
effects for my children.
My good friend, Jennifer, is so upset because the
hair stylist cut her hair too short and it doesn't flatter her.
She's sure people will be staring at her for weeks.
Me, I could shave my head and people would still notice my kids first.
I might be a tiny bit upset if it happened to me, but I wouldn't have the
time to agonize over it like she is doing.
There really are more important things to consider in my life.
I suppose I should be thankful that there is more
depth to my life now and some days I am very aware of how the abnormal has
changed my perspective and priorities for the better. I don't have time anymore to make life miserable for my
husband, and I'm too busy to worry about the social structure in my community.
(I don't even have time to keep up with DAYS OF OUR LIVES anymore.)
Some
days I am very aware of my change in attitude about some of the more important
things in life and I thank God that I've come this far in this evolutionary
process called life.
But the biggest fact I realize about all this is that I am NOT a super
mom.
I can only do so much and the days when I do rant and rave are normal.
I am allowed to feel this way occasionally and I'm not a bad mother
because I do feel this way.
It's a normal reaction to the stresses that a developmentally or
physically handicapped child places upon a person.
I'm not a bad person because I feel this way sometimes.
I'm only human and I really think I am the best mother my kids could
have.
"But
if you'll take my hand, my son, my son, all will be well when the day is
done."
It
was easy for Peter, Paul & Mary to say that.
They didn't have kids with disabilities.
But they also said "you will inherit what mankind has done",
which is all too true when it comes to having kids with disabilities.
Television
portrays only the beautiful people, and it has only recently been that you see
kids who are different in commercials and on Sesame Street and Barney.
It's about time someone noticed that they're people too.
I'm
the person who lives with my kids 356 days a year.
I'm the one who tries to believe that all professionals are noble and
dedicated. I'm also the one who has
learned to appreciate the small successes and to celebrate them.
I'm the eternal dreamer and I want to believe that when I'm gone the
world will be a better place for my kids to live in.
On
the whole, my kids don't have it too bad. I've
been the general of this battle for quite a while now and I have learned a few
techniques that have helped.
Plus,
many of the people I work with share their strategies, so it's not as if I'm
totally alone, or the only parent in the world who is faced with these problems.
There are a multitude of parents out there who are fighting the same
battles, along with those people who are in high places who make the policies
that protect our kids.
I'm
concerned about all the other parents who are going through the same thing.
It's
not easy to be the minority in 99% of the dealings you have with systems.
Having a child with a disability is a big enough problem in itself, but
when you not only have to deal with the disability on your own personal level,
but also on the larger level that involves community/school/systems, it can
become overwhelming.
There
are days when I'd just like to lie down and die and pass the battle banner on to
someone a who's not so weary of fighting, because I do get so very tired
sometimes. I suppose I could just sit back and let the system do what
they would, but I know I couldn't live with myself if I did.
I'd feel I was doing nothing to make their lives better, and being
apathetic isn't my style anyway. So
I do what any normal parent would do -- I try to make the world a better place
for them. I try to get rid of all
the injustice and prejudice that is there waiting to attack them.
I know I can take it better than they can, especially at this stage in
their lives. So, I continue to
fight. When an IEP meeting gets
personal and I look like as good a target as anyone else to attack... yes, it
does hurt, and yes, I often cry, but I have to stick to my dreams.
I have to remain committed to my cause and I can't let them make me feel
guilty because little Johnny's
parents have complained about my child being included in the regular classroom.
There will always be people who are ready to blame me and my children for
any inconvenience that arises. I
can hope to change a portion of the minds out there, but I know there are some
people who will always discriminate against
my kids and whose minds I will never be able to change.
I have to accept the fact that this world we live in is less than
perfect, and do what I can to make it better.
For my own sake, I have to remember that all my victories don't have to
be big ones. The little ones add
up, so if I change one person's
attitude, that makes this world one person better and that's one more person on
my side than I had yesterday.
Maybe
it won't "all be well" when this day is done, but it will be a bit
better. Being responsible for making some people question their
prejudices, if only for a moment, is a change that needs to be made.
It's about making friends for our kids and ourselves, but it's also about
finding out who the worthwhile people really are who we want to be our friends.
So,
take my hand, my son, and let's try to change your inheritance.
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Pat Linkhorn, 2001