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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Saturday December 22, 2001
INDEX:
* Dear Santa
* To You, My Sisters
* The Special Mother
* Cherie is right to keep the secret of Leo's bottom
* Michigan-Chat
******************************
Dear Santa
Don't bother to bring me your usual gifts,
These days they don't bring me the slightest of lifts.
I'll even pass on the Christmas with snow
Latest of gadgets and gizmo's from Ronco.
You can keep all the jeweled bangles and balls
And even all your cabbage patch dolls.
Here's what our family this year places on order
Please read it and tuck it up under your sleeve
then pull it out again on Christmas Eve.
Give us a shunt that stays connected
And doesn't even get infected
May it's flow not ever turn sluggish,
nor it's tubing ever get plug-ish.
Two kidneys staying healthy,
would make us feel wealthy
as a matter of fact
make that the whole urinary tract
And a bowel that's just right,
neither too loose nor too tight
we don't want my child to become obese,
but I'd like more than 38 calories please.
Can you make a spine that will stop its curving,
Listen I tell you, it's really unnerving.
A whole year without a single operation,
is what we need to feel jubilation.
Please put your elves right to work
inventing an IVP that doesn't hurt,
a spinal cord that won't ever tether
and a wheelchair that is light as a feather.
Can you put to rest all my suspicions
that our insurance won't cover pre-existing conditions.
And please help our doctors develop an appreciation
For our endless list of question after question.
Another thing I wish for around the clock,
Is a disabled parking spot on every block.
And while you're at it, we'd like a vacation away
that would be for at least a week and a day
I could go on and on in a similar vein
With lots of idea's that would take away pain
But the chime of the clock just made me realize
That it's time once again to catheterize.
If you think there's entirely too much that we need
and it's seems to you we are chock full of greed,
Actually when you get right down to it,
any one of those would just about do it!
author unknown
******************************
To You, My Sisters
Many of you I have never even met
face to face, but I've searched you
out every day. I've looked for you on the Internet, on playgrounds
and in grocery stores.
I've become an expert at identifying you. You are well worn. You are
stronger than you ever wanted to be. Your words ring experience,
experience you culled with your very heart and soul. You are
compassionate beyond the expectations of this world. You are
my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite
sorority. We are special. Just like any other sorority, we were
chosen to be members. Some of us were invited to join immediately,
some not for months or even years. Some of us even tried to refuse
membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were
pregnant, or we had just given birth, or we were nursing our newborn,
or we were playing with our toddler. Yes, one minute everything was
fine. Then, whether it happened in an instant, as it often does, or
over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of
children with special needs.
We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy.
Some need respirators and ventilators. Some are unable to talk, some
are unable to walk. Some eat through feeding tubes. Some live in a
different world. We do not discriminate against those mothers whose
children's needs are not as "special" as our child's. We have mutual
respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We
know "the" neurologists, "the" hospitals, "the"
wonder drugs, "the"
treatments. We know "the" tests that need to be done, we know
"the"
degenerative and progressive diseases and we hold our breath while
our children are tested for them. Without formal education, we could
become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish. We have prevailed
upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children
with cerebral palsy. We have labored to prove to insurance companies
the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could
receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in supermarkets
during "tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have tolerated inane
suggestions and home remedies from well-meaning strangers. We have
tolerated mothers of children without special needs complaining about
chicken pox and ear infections. We have learned that many of our
closest friends can't understand what it's like to be in our
sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother." We keep them
by our
bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically
handicapped children to the neighbors' front doors on Halloween, and
we have found ways to help our deaf children form the words, "trick
or treat." We have accepted that our children with sensory
dysfunction will never wear velvet or lace on Christmas. We have
painted a canvas of lights and a blazing Yule log with our words for
our blind children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And all the while, we
have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how
we'd make it through another day, and gone to bed every evening not
sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in
Italy. We've mourned the fact that our trip to Holland has required
much more baggage than we ever imagined when we first visited the
travel agent. And we've mourned because we left for the airport
without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they
will achieve in life knows no bounds. We dream of them scoring
touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them
planting vegetable seeds, riding horses and chopping down trees. We
hear their angelic voices singing Christmas carols. We see their
palettes smeared with watercolors, and their fingers flying over
ivory keys in a concert hall. We are amazed at the grace of their
pirouettes. We never, never stop believing in all they will
accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is
hold tight to their little hands as together, we special mothers and
our special children, reach for the stars.
By Maureen K. Higgins
******************************
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped
children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments
for
propagation with great care and deliberation. As He observes, He
instructs
His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to
profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a
handicapped
child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a
mother
who
does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a
sea of
self-pity and despair. Once the shock and resentment wears off, she'll
handle it."
"I watched her today. She has that feeling of self and independence
that
is so rare and so necessary in a mother. You see, the child I'm going
to
give her has her own world. She has to make her live in her world and
that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles,
"No
matter,
I can fix that. This one is perfect - she has just enough
selfishness." The
angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a
child
less than perfect. She doesn't realize it yet, but she is to be
envied.
She will never take for granted a 'spoken word'". She will consider a
step" ordinary. When her child says 'Momma' for the first time, she
will
be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance,
cruelty,
prejudice....and allow her to rise above them. She will never be
alone.
I will be at her side every minute of every day of her life, because
she
is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in
mid-air.
God smiles, "A mirror will suffice."
http://members.aol.com/DEMP12/ermabombeck.html
******************************
Cherie is right to keep the secret of Leo's
bottom
(Filed: 20/12/2001)
YOU know I have a terrible feeling
that if I were to meet Cherie Blair at a party this Christmas, she would not be
well disposed. She might think, at first blush, that she had before her an
example of everything she really doesn't much like.A corpulent monarchist Tory
defender of the House of Lords, an opponent of the euro, a supporter of
foxhunting, a man who has repeatedly attacked her husband in print, often in
quite florid terms.Yes, I have an idea that her conversation might be frosty,
and that she would soon come up with something about having to refill her
glass. And, in reality, I am not sure that I have always thought of myself as
an unqualified supporter of Cherie.Under any normal circumstances, I would not
come to the defence of a woman who is clearly a bossyboots Lefty lawyer with a
Soviet concept of what is culturally and politically correct.On any other day
but this, if I saw Cherie under attack, I am afraid my sword would slightly
stick in my scabbard. But I have one hour ago read an article in a tabloid
newspaper, which has caused a red mist of fury to form."Why Cherie Must
Come Clean On Little Leo's Jabs" is the headline of the article, by a
distinguished female columnist, and the gist of it is that Cherie must tell the
world whether or not she has had her baby inoculated by the MMR vaccine.For
those of you who have only just returned after years of seclusion with the
Taliban, this is a jab given to babies and children, which is designed to stop
them contracting measles, mumps and rubella. It is the subject of a great
national panic, rather like the one about BSE and CJD. Questions are being
asked in the Commons.There are some doctors who say that the MMR vaccine,
which, as I say, involves administering three doses at once, is too powerful.
They say it is implicated in cases of autism and bowel disease. About 800
parents of autistic children are currently bringing a group action, because
they believe that they have been bullied by the NHS into allowing their
children to undergo a dangerous procedure, for which they have paid a terrible
price.They believe that there is a cover-up. They think that whistleblowing
doctors are being persecuted. Other parents, frightened by these reports, would
like the chance to give their babies separate injections, and they believe the
NHS is simply too mean to fund it.No matter how many reports are published,
which show that there is no established link between the MMR vaccine and
autism, they are not convinced.They know that Cherie is a user of crystals and
all sorts of alternative medicine. They have dark suspicions that baby Leo was
inoculated in France; they think he did not have the MMR jab; they believe that
Cherie refused to permit the imperial Blair baby buttocks to be injected with
the medicine that was used for the rest of the British population.They are
furious, and they want to know. Have Tony and Cherie ignored Kant's categorical
imperative? Have they failed to act on that maxim which they could wish were
universal? Is there one rule for the Blairs, and one for everyone else? Out
with it, cry the mob. Tell us the truth about little Leo's bottom!It is
suggested that Blair is the head of the government which promotes the MMR
vaccine, and that we therefore have a perfect right to know this detail of his
children's medical history. I say that is utter nonsense; that Cherie and Tony
are quite right to defend their children's privacy, and that a moment's
reflection will show why.This is a classic public health panic, of a kind we
see about once per year. For what it is worth, all four Johnson children are
full to the gills with MMR, and the youngest is about to have a top-up dose of
the concoction.It may be that there is a tiny likelihood that they will become
autistic as a result, or it may be that the chances are nil. I consulted the
relevant authority on this question this afternoon, and it turned out that she
had already thought it all through. "I think it's all a load of cobblers,"
said my wife. "There's far more risk that they will catch measles or mumps
as a result of not having the jab." And since I have no desire to get
these diseases, I assented immediately. The chances are, in fact, that the
panic will do far more damage than the jab itself could ever do - which is
always the way with these scares.When people panicked about the Pill, which was
linked in newspapers to thrombosis, they stopped taking it: and the result was
far more suffering, in the form of teenage pregnancies, abortions and all the
rest of it. What people need are the facts, and a clear appreciation of the
risks. We aren't South Sea Islanders, who are fearful to do that which isn't
publicly done by our chiefs.The Pill is prescribed by GPs. It seems to be
slightly risky to health. Do we have to know whether anyone in the Blair family
is prepared to use it, before we use it ourselves? What about tampons, which
are approved by the NHS, and which have been associated with toxic shock
syndrome? Do we need to know whether the Blair family uses them? You only have
to ask the question, to see how absurd it is.It is an infamous invasion of
privacy. And if you are really frightened of MMR, and you are not convinced by
the statistics, then there is no one who will compel you to unleash it on your
children. You can always buy separate jabs, at between £30 and £50 a time. Of
course it would be better if there were more choice in the NHS, and more
opportunity to buy optional services - but that is another story.
Boris Johnson is editor of The Spectator and MP for Henley
http://www.opinion.telegraph.co.uk/opinion/main.jhtml;$sessionid$2ZRRRLYAAAHOBQFIQMFSFGGAVCBQ0IV0?xml=/opinion/2001/12/20/do2002.xml&sSheet=/opinion/2001/12/20/ixopinion.html
******************************
Michigan-Chat
Date: Friday, December 21, 2001
Time: 9:00PM - 10:00PM EST (GMT-05:00)
Dear Michigan Parents, Advocates & Attorneys:
Come and chat with other Michigan special education parents,
advocates & attorneys.
Every Friday evening from 9:00PM-10:00ishPM, Eastern Standard
Time.
The webpage to access the chat is:
http://groups.yahoo.com/group/Chat-SpecialEdLawMichigan/chat
You must be a member of that listserv to enter the chatroom. You
may join at:
http://groups.yahoo.com/group/Chat-SpecialEdLawMichigan
The topic will always be Special Education Law, however, there
may be some weeks that there will be special guests at the
chats! Stay Tuned!
Thanks!
Your Hosts,
Kim and Bella
******************************
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