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Margaret Head received this from a sister she worships with:
"I was talking to a friend of mine yesterday
and she
shared a poem with me that was written by a 15 year old Christian
young lady that has been diagnosed with
a brain tumor. It is
considered the most aggresive form of a tumor from what I
understand. What maturity she demonstrates!
May this help us all
remember what is truly important!"
 I like to be
by myself, but I can't stand being alone.
I love the dark, but I hate not being able to see.
I enjoy meeting
new people, but I hate being with strangers.
I want my voice to be heard, but I despise talking loud.
I want to
be in a hall of fame, but I don't like being the center of
attention.
I want to have my most complicated problems
solved, but I don't want
complicated answers.
I want to always be healthy, but not have to take medicine.
The answer: GOD!
With God, I can be away from the world, by myself, but not be alone,
for He is with
me.
With God, I can be in the dark, be blind, but see more than people
of this world can.
With God, I can
meet new people, but they won't be strangers,
because they are children of God, just like me.
With God, my
voice can be heard even when I whisper.
With God, I can enter His hall of fame, but not deal with the
pressure
of earthly fame.
With God, I can have even my most complicated problems solved with a
simple answer.
With
God, I can have an incurable disease, yet be healthy in what
matters most.
WITHOUT GOD, I will be with the
world, and be totally alone.
Without God, I will walk around with my eyes wide open, but not see
as much as the
Christian blind man sees.
Without God, I will meet all the people in the world, but they will
always be strangers.
Without God, I will have to raise my voice as loud as I can to be
heard, but still not be heard when it matters most.
Without God, I will have work extremely hard to get into a worldly
hall of fame, but not get into the highest one.
Without God, my most complicated problems, can't be solved, and the
attempts will be so complicated, I won't
understand them.
Without God, I will have to take pill after pill, but will always be
incurably sick.
With God, I can achieve anything.
Without God, I will achieve nothing.
What's your choice?
by Kelsey
Healthy Children Often Take A Backseat
When Sibling Falls Ill
Angela Bettis
Parents are often so consumed caring for the sick child that
they can think of nothing else, including their other children.
"If you were to ask the parents how their children at home are doing, they would say, 'Fine, they're
with grandma, going to the zoo,'" said University of Wisconsin Child Life Director Mary Kaminski. "If you were
to ask the school teacher, they would say, 'They're not paying attention, they're daydreaming, they're behaviorally
upsetting the class.'" Grace Hime, 13, of Mount Horeb, has lived her entire life in the shadow of her sister's lifelong battle with
cystic fibrosis.
"I thought she was so lucky she always
got to go to the hospital," said Grace. "I thought that was practically a hotel because you got free food and all
sorts of stuff."
"The sibling may think, 'Well,
they're spending all this time with them. They must like them better than me,'" said Kaminski.
In reality, that is the opposite of what parents are thinking.
Grace said that many times, people will ask how her sister is doing and unintentionally
neglect to ask her how she is doing.
"They ask a lot of
questions like, 'How is your sister doing?'" said Grace. "They say it a lot and sometimes it gets annoying."
"Just listening to her come home and hearing the frustration about,
'Well, everyone wants to know about Sarah.' Those things really stick with me," said Bill Hime, father of both
girls.
The Himes turned the attention spotlight on Grace and
made sure everything between the sisters was equal, WISC-TV reported.
"You are acutely aware of it and you are constantly, in those quiet moments, judging yourself," said Bill
Hime. "You try to make it as even as you can and because you're so aware of it, you can tend to be a little overzealous."
That acute awareness led the Himes to put Grace in counseling in third
grade.
What they soon realized was that Grace didn't need
counseling; she needed special time with her parents and especially, her sister.
"One person we've always been most concerned about is Grace," said Hime. "That's what people
forget."
Experts said that the Himes are the exception
to the rule. In the midst of medical crisis, most healthy siblings take a backseat both physically and emotionally.
A few years ago, the Tracy family lost their 18-month-old son Tyler
after a lengthy medical battle.
"We kind of lost track
of what was going on with Austin and Mikayla," said Jeff Tracy. "We did the best we could just to get by."
"I feel I missed Mikayla's whole preschool year and time,"
said Kristin Tracy. "Austin was 2 and Mikayla was 4, so I feel like I missed his whole second year. It was very traumatic."
The family spent most of Tyler's 18 months running to the hospital.
Their two preschool-aged children shuffled to friends and family.
"We
probably neglected to realize that they were impacted by what was going on," said Jeff Tracy.
"The one absolute is that they continue to age," said Bill Hime. "They continue to grow and mature
and become their own person. You'll either be a part of it or you'll miss it, because it's going to happen one
way or another."
Child experts said that maintaining that
parent-child bond is critical despite the mental and emotional exhaustion of the parents.
"If the sibling does not survive the process, what have you done to continue to build the one who is left behind?"
said Hime. "What have you given them to work with? Now do you suddenly have to get to know them because you failed to
grow with them? That's a lot of ground you may not be able to make up."
*
Don't forget about your healthy child who is an adult. Adult children can also feel left out and unloved if they aren't
given attention.
Ten Things Every Child With Autism Wishes
You Knew. . .
On http://books.google.com I read part of a very interesting book called, Ten Things Every Child With Autism Wishes You Knew,by
Ellen Notbohm. As I was looking over this book I felt the author would not like the title of my page, My Child is Ill,
in reference to autism. She states she doesn't like the term: "Does your child suffer from
autism," but rather does he "live with autism?". She looks at autism from a positive
frame of mind that individuals with autism are showing they can "overcome, compensate for and otherwise manage many of
autism's most challenging aspects as part of their fulfilling and dynamic lives."
While I've never
raised a child with autism, from what little knowledge I have it looks like an interesting and helpful book. The 10 points
the author expounds on are:
1. I am first and foremost a child.
2. My sensory perceptions are
disordered.
3. Distinguish between won't and can't.
4. I am a concrete thinker. This means I
interpret language very literally.
5. Please be patient with my limited vocabulary.
6. Because language
is so difficult for me, I am very visually oriented.
7. Focus and build on what I can do rather than what I can't
do.
8. Help me with social interactions.
9. Try to identify what triggers my meltdowns.
10. If
you are a family member, please love me unconditionally.
An interesting thing I read in the book is why a grocery
store, like the poem to the right, may be so unnerving to a child with autism. While our brain filters thousands of multiple
sensory inputs (what we see, hear, smell etc.), his brain does not. His hearing, sights, touch, smell may be overly sensitive
and hyper-acute.
As he is in the grocery store he may hear everyone talking at once, coupled with the loudspeaker
and music from the sound system. He hears cash registers, coughing, a coffee grinder, the screeching of the meat cutter, babies
crying, carts creaking and even the hum of the fluorescent lights. He may smell the meat that isn't quite fresh, body
odor, deli smells, pickles that had been dropped, a dirty diaper and he may be smelling all these at once. He may become overstimulated
by all the sights: the fluorescent light makes the room pulsate, it bounces off everything and distorts his vision. There
are too many items to focus on such as glares from windows, moving fans and many bodies in motion.
This and much
more are contained in this book. Google only provides sections of the book, but it sounds like a good book for everyone to
read, especially those who may have a friend or family member who lives with autism.
Undisciplined
or
Overstimulated
Please don't misunderstand me and think by these writings about taking
an autistic child to the grocery store that I believe autistic children should be isolated and not experience the world. On
the contrary. I'm just giving examples of what I've read to try and help us understand from the child and parent's
point of view. Also, for our own sakes it's common for us to immediately judge disruptive children and their mothers when
we don't know what is going on with them. Yes, they could very well be just undisciplined (so common nowadays) but maybe...just
maybe there are other issues we don't understand. And sometimes when we do know a child is autistic or bipolar we still
are tempted to misjudge the parenting skills. Let's try and be more patient with others and refrain from judging.
My Autistic Son -
By Leonie Murray ('a mother')
Often
when I'm shopping
Just my little one and me,
A small chore becomes enormous
As he acts Autisticly. It seems to take forever
Through the check-outs at the shop,
So I pacify
with lollies
So a tantrum I can stop. I know the folks
around
If they see him in a rage,
Would think that he is spoilt
And immature for his age. I make it to the car
But the lolly's running out,
Since no one is
around
I let him have a shout. But that was just the start
Of such a dismal display,
His seat belt he won't wear
And the ice-cream melts away. "Come on Baby-Boy,
Stop this scream and moan"
As I promise to myself
'Next time, I shop
alone'. Happy he is now
As we enter at our gate,
His tears turn into laughter
And once again becomes my mate. He
helps to put the food away
Pretends that he's the boss,
It's then, I feel so guilty
And so sad for
feeling cross. In the safety of his home
And unexpectantly
for some,
He wraps his arms around me
And says "I LUD-DEL you Mum". He makes me feel so needed
And he will for years to come,
I love him as he is
He is, my special son. We take Life day by day
With obsessions and delight,
Black and white
he sees it
And all is wrong or right. Repetitive in his
ways
And now predictable, I see,
Because I've studied and observed him
As he lives, Autisticly.
The following is a poem was found on an
internet support group: The author states: "Double Bind: Too Similar and Yet Too Different" is a "found
poem" composed of patronizing remarks coworkers have made to me over the years, and my unspoken replies.
"Double
Bind: Too Similar and Yet Too Different"
by Henrietta Brown
Of course you can!
I have every confidence
in the world in you.
It looks great.
Oh, I'm sure nobody noticed.
The people skills can change.
Just
think positive.
You're a smart girl.
No, folks,
I'm not like you.
I don't want compliments.
I'm not normal.
You may not see it, but I do.
I only want understanding.
We all want what we can't
have.
You'd be so good at this if only
you would look at customers
while they speak,
and still
process their words
well enough to answer quickly,
giving them the information they really want,
not literal
answers to the questions they ask.
If only I had a different brain?
They're not asking the difficult,
you understand:
only that I change every atom of my DNA
so I can be part of their world,
on their terms;
give myself enough oxygen at birth;
trade my engineer dad for a socialite.
Seems like anybody would know
to do that.
You need to learn how to work as a team.
You should be able to do exactly what we do,
exactly the
way we do it.
I'm marking you down as negligent
until you learn to converse
in a manner that pleases your
peers.
Our interests should be your interests.
Get married!
Go to rock concerts!
Well, OK, then
-- classical, if you insist.
But everybody needs noise and crowds,
so dose yourself today.
Wear uncomfortable
clothes, and we may begin to accept you.
I'm happy enough.
I've lived in this quirky body
long
enough to be used to it.
You're the one with the problem.
Diversity is fashionable,
so I'm in style
for once.
Because I look like you, you refuse to understand.
CHILDREN AND DOCTOR'S
WAITING ROOMS
Pat Gates
TOY BAG.
Keep books and toys in a "to go" bag. Put them up when you get home so they will remain special for trips to doctor/hospital.
GERMS! Be careful about
germs. A "to go" bag of toys will be especially helpful if, in some cases, you may not want your child to be exposed
to the germs that may be on the waiting room toys (pre-surgery checkup is one such case). Also, you may want to keep clean
wipes in your purse in case your child wants to play with the computer that is now found in many pediatric waiting rooms.
ANNOYING CHILDREN:
Don't allow your child to annoy others who are waiting. (I'm not talking about the normal crying a baby may make
or the fussiness of a sick or scared child.) Make sure they aren't too loud, too rowdy, or too friendly.
What I mean by too friendly is that while it is good to have a friendly child, limit his conversations with others who are
waiting as they may not feel physically or emotionally in the mood for long conversations. This goes for the parents as well. CONVERSATIONS: If you do get into a lengthy
conversation with another parent don't take over the conversation and give a life history of your child and his/her illness.
Be sure to listen as well. BAD EXPERIENCES:
Don't talk about the bad experiences your child had with doctors, nurses, hospitalizations etc. in front of your
own child or any of the children. Don't be overly negative with other parents who have a child with the same physical
problem as your child.
HIDDEN FEARS. Remember
your child may be experiencing fears that he/she doesn't know how to express and they may be having a difficult day emotionally.
Be patient and gentle but remember even sick children need boundaries and should never learn that illness is an excuse to
bother or mistreat other children. WILL
IT HURT? If your child asks you what the doctor is going to do and if it will hurt, always be honest.
If you don't know, tell them so, if you know it will hurt, tell them it will without being overly dramatic. State
it calmly, and if it will hurt just a short time (like a shot or IV) let them know that and that you will be there to be ready
to give hugs that will help the hurt go away (however, only say that if you know you will be there). Honesty is very important.
You can reassure your child you will be with them and if they have to go for a test and you can't go with him,
tell him you will be waiting nearby.
SIBLINGS: Be sure and give attention to your well children who may be there also. The
environment could be scary for them and they may also have fears about what their brother or sister may have to undergo. If
they witness any trauma the ill child has to go through this could create fears that they may not express (or know how to
express). Be sure to reassure the well children and give them the love and care they need. If you can't tend
to both the ill child and their sibling, try and get someone to be with you at these checkups who can help or
ask the nurse to help reassure the well child.
DON'T STARE:
Teach your child not to stare at children who are physically disabled or who have physical "marks" of treatment,
such as chemotherapy or radiation. This is especially important if you are taking your child to a large teaching hospital
where they will meet children with various health issues. One great benefit for children with severe congenital problems is
that they grow up around children with health issues and they learn, at a young age, to accept everyone, from every walk of
life, and every different physical appearance the disease or treatments may give children. My son said hospitals are great
equalizers - and to a great extent this is true.
MAKE IT A FAMILY DAY: If
this is an annual or semi-annual (or more often) "big" doctor visit with lots of tests that are routine
for a chronically ill child, always make it a special day afterwards, if you can. This is something you can talk about in
the waiting room so they have something to look forward to. However, in some cases (like my son's), you may never know
for sure if they will have to be hospitalized after the checkup, so you may want to say if we can't have the family day
after the appointment, we'll have it later. Follow through is a must - never give empty promises. When my son's heart
checkups would come, it was always a family day and the four of us would do something special together and if he had to go
in the hospital we'd have time together when he got out or as soon as possible. Even though he is 29 now, if we
happen to be with him at one of these "big" checkups we still go out for a special dinner together. This would give
those tense, tiring clinic visits something to look forward to.
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EXAMINING ROOMS. These are a lot less fun, since they're
often cold and sparsely furnished and your child is often cranky and sparsely dressed. All the better to get some distracting
interaction going. Play a game of I Spy with items in the room or outside the window. Help your child do an improvised
exam on a stuffed animal. Have a conversation on a play phone, asking where oh where that doctor is. Blow up a balloon to
bat about together, or have a diving competition to see which doll can make the most spectacular leap off the examining table
and onto the (probably germ-riddled; don't think about it) floor. -selected off the internet
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