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If you only do what you know you can do-you never do very_much.
Tom_Krause
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About pablothegreat
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Myspace Layouts - Myspace Editor - Image Hosting
"A critic is someone who never actually goes to the battle, yet who afterwards comes out shooting the wounded”
Tyne Daly
When you have a special needs child, you go through many many products, toys, and services trying to find just the right one to make that child smile....or get better...or help her in some little way.
I have tons of experience on products that just did not work as well as they claimed. I have favorite picks that DID absolutely work and I trust them.
http://web.syr.edu/~jisincla/dontmourn.htm
Does my child have autism or PDD?
According to the National Institute of Child Health and Human Development's Autism Facts, "a doctor should definitely and immediately evaluate a child for autism if he or she:
Does not babble or coo by 12 months of age
Does not gesture (point, wave, grasp, etc.) by 12 months of age
Does not say single words by 16 months of age
Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
Has any loss of any language or social skill at any age.
Are there other possible symptoms of autism and PDD?
There are a number of things that parents, teachers, and others who care for children can look for to determine if a child needs to be evaluated for autism. The following “red flags” could be signs that a doctor should evaluate a child for autism or a related communication disorder.
The child does not respond to his/her name.
The child cannot explain what he/she wants.
Language skills or speech are delayed.
The child doesn’t follow directions.
At times, the child seems to be deaf.
The child seems to hear sometimes, but not others.
The child doesn’t point or wave bye-bye.
The child used to say a few words or babble, but now he/she doesn’t.
The child throws intense or violent tantrums.
The child has odd movement patterns.
The child is hyperactive, uncooperative, or oppositional.
The child doesn’t know how to play with toys.
The child doesn’t smile when smiled at.
The child has poor eye contact.
The child gets “stuck” on things over and over and can’t move on to other things.
The child seems to prefer to play alone.
The child gets things for him/herself only.
The child is very independent for his/her age.
The child does things “early” compared to other children.
The child seems to be in his/her “own world.”
The child seems to tune people out.
The child is not interested in other children.
The child walks on his/her toes.
The child shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
Child spends a lot of time lining things up or putting things in a certain order.
 Florida Adoption Assistance for Families Adopting Children with "Special Needs"
http://www.adoptflorida.com/assistance-program.htm
 The Dave Thomas Foundation for Adoption is a nonprofit public charity dedicated to dramatically increasing the adoptions of the more than 140,000 children in North America’s foster care systems waiting to be adopted. Created by Wendy’s founder, Dave Thomas, who was adopted as a child, the Foundation leads signature national service programs and works to streamline the adoption process and make adoption more affordable for families. As the only foundation dedicated exclusively to foster care adoption, we are driven by Dave’s simple value: Do what’s best for the child.
http://www.davethomasfoundation.org/
HOW MUCH DOES IT COST TO ADOPT A WEDNESDAY'S CHILD?
It is not costly to adopt children from the U.S. foster care system, such as those who appear on the Wednesday's Child television features and website. All of these children are in the care of public (city, state, or county) agencies here in the United States, which do not charge families to adopt the children.
http://adopt.org/servlet/page?_pageid=289&_dad=portal30&_schema=PORTAL30
Autism Awareness items for sale.
http://www.victorystore.com/magnets/car_magnet/autismmagnets.htm
SOME OF MY FAVORITE WEBSITES, POEMS, OR SAYINGS THAT HAVE TOUCHED ME IN SOME WAY OR JUST MADE ME LAUGH OUT LOUD:
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers 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 take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
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 a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it 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 will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and 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 she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
DON'T QUIT
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you frown a bit,
Rest if you must, but don't you quit.
Life is strange with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow,
You may succeed with another blow.
Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem worst
That you must not quit.
Author unknown
WELCOME TO BEIRUT by Susan F. Rzucidlo
(Beginner's Guide to Autism)
"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."
There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!
There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.
Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.
Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.
There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.
And yet, hope springs eternal.
Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.
But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.
Other safety items that I have reviewed, click on each to find out what it is and what it does:
http://www.epinions.com/review/Lid_Lok_Toilet_Safety_Latch/content_416433409668
http://www.epinions.com/review/Fridge_Guard_by_Parent_Units_White/content_416431246980
http://www.epinions.com/review/Safe_Lok_Cabinet_and_Drawer_Locks/content_416430591620
http://www.epinions.com/review/Kid_Safe_Door_Alarm_Monitor/content_416428166788
http://www.epinions.com/review/16_Kidsafe_Driveway_Guard/content_416424365700
http://www.epinions.com/review/Ionkids_Child_Monitoring_System_Starter_Kit/content_416308629124
http://www.epinions.com/review/Mommy_s_Helper_Kid_Keeper_Safety_Harness/content_416309350020
http://www.epinions.com/review/Safety_1st_Clear_Grip_Door_Knob_Covers_3_pk/content_425903820420
http://www.epinions.com/review/Beddiebye_Zip_Around_Safety_Blanket_Small_Microfleece/content_416436162180
Compiled by Susan Rzucidlo
Autism 101 for Paramedics/EMS
Individuals with autism cannot be identified by appearance. They look the same as anyone else. They're identified by their behavior. Autism is a spectrum disorder. It presents differently in each individual. What works for one individual with autism may not work for another.
50% of individuals with autism are nonverbal throughout their life span another 20% may present as nonverbal when highly stressed.
30 - 40% of individuals with autism will develop epilepsy or some other seizure disorder during adolescence.
Individuals with autism have a difficult time reading facial expressions. The Wong-Baker Faces Pain Rating Scale will NOT be an accurate measurement for pain.
You may encounter Autism by one of its many other names such as, ASD -Autism Spectrum Disorder, Aspergers Syndrome, PDD- Pervasive Developmental Delay, PDD NOS- Pervasive Developmental Delay Not Otherwise Specified and of course Autism.
Some individuals with autism do not have a normal range of sensations and may not feel the cold, heat, or pain in a typical manner. In fact they may fail to acknowledge pain in spite of significant pathology being present. They may show an unusual pain response that could include laughter, humming, singing and removing of clothing.
Individuals with autism may engage in self stimulatory behavior such as hand flapping, finger flicking, eye blinking, string twirling, rocking, pacing, making repetitive noises or saying repetitive phrases that have no bearing on the topic of conversation. This behavior is calming to the individual, even if it doesn't appear calming. They may repeat something you said or something they heard over and over and over again. This is called echolalia and can be calming to the individual. If these behaviors are NOT presenting as a danger to themselves or others it is in the your best interest not to interfere with it. Allow it to continue as long as they are safe and safe to be around. Trying to stop it will increase their anxiety and may cause the individual to act out aggressively.
Individuals with autism often have tactile sensory issues. Band-aids or other adhesive products could increase anxiety and aggression.
When restraint is necessary, be aware that many individuals with autism have a poorly developed upper trunk area. Positional asphyxiation could occur if steps are not taken to prevent it: frequent change of position, not keeping them face down. Individuals with autism may continue to resist restraint.
Exam Tips
Move slowly, performing exams distal to proximal. Explain what you plan to do in advance and as you do it. Explain where you are going and what they may see and who might be there. This may avert unnecessary anxiety and/or outbursts or aggressions from the patient.
Speak simply; give plenty of time for an individual with autism to respond to questions. A 3 - 4 second delay is not uncommon. Repeat your question and wait again. Use a calm voice. Be aware that some autistic persons' use of "yes" and "no" to answer questions may be random and misleading. Try inverting your questions to validate the patient's response.
Expect the unexpected. Children with autism may ingest something or get into something without their parents realizing it. Look for less obvious causality and inspect carefully for other injuries.
If possible ask a caregiver what the functional level of the individual with autism is, then treat accordingly. Stickers, stuffed animals and such which are used to calm young children may be helpful even in older patients.
If a caretaker is present, allowing the caretaker to ask the questions involved in an exam may increase the likelihood of getting information from the person.
Allow a caretaker to ride with the patient if possible. This will reduce anxiety and make your job less difficult.
Don't presume a nonverbal child or adult who seems not to be listening, can't understand.
Individuals who present as nonverbal may be able to write or type responses. Provide paper and pen or laptop for the best chance of getting the information that is needed.
Attempt to perform exams in a quiet spot if at all possible, depending on the severity of injury and safety of the scene. Demonstrating what the exam will consist of on another person first may help the person with autism have a visual knowledge of what your intentions are.
Emphasize the comfort & reassurance repeatedly
Other Helpful Information and Ideas
When possible avoid use of sirens and flashing lights. Sound and light sensitivity is common in Autism.
Alert Emergency Room (ER) personnel to upgrade triage for child or adult with autism even if injuries are relatively minor. Having the person wait for medical attention may cause avoidable disruptions in the ER. Expect the sensory stimulation of the ER room such as equipment, lighting, noises, aromas and commotion to cause a negative escalation of behavior. Upgrading triage will save valuable ER time and resources.
If possible communicate with receiving hospitals before arrival. Request a quiet isolated area or room for the patient with autism.
Some autistic persons will be terrified by restraint systems used in ambulance transfers. Ideally, explain and get consent from the patient or guardian before attempting to strap onto a KED or stretcher.
An individual with autism may not respond to directives, and that can be because they don't understand what's being demanded of them, or even just because they're scared-- the fact that they're scared is the only thing they will be aware of -- they may not be able to process language or understand a directive when fearful.
They may fixate on or stare at an object in the room (or on your body -- a badge, earrings, buttons)
Whenever possible, avoid touching these individuals. Some, but not all, individuals with autism will become more agitated and possibly aggressive when touched. Tell them what you are going to do.
Identification can often be found on individuals with autism by a Medic Alert Bracelet or necklace used in a different way. Some families may thread the ID into a shoelace, into a belt, or as a zipper pull. A business card with personal information may be in a pocket or wallet
The IVF Plunge..
The latest.... The greatest.... Come ride the spectacular new roller coaster, now open at an IVF clinic near you! Take...
THE IVF PLUNGE!
Thrills! Chills! Stabs! Jabs! Laughs! Screams!
What makes THE IVF PLUNGE so unique is that it is actually several rides in one! But not all riders will experience all the rides - automatic track switchers randomly select cars to go on any particular sequence. In addition, selection of a clinic also results in different protocols, behavior, treatment, cost and support. So THE IVF PLUNGE is never the same ride twice! For more details, read on....
Some riders will experience thrills on the INSURANCE ride! Swinging you around, upside down and inside out, a brass ring of coverage will be tantalizingly close, only to be snatched away at the last minute! For those riders who manage to snatch the brass ring, a FREE RIDE on THE IVF PLUNGE is available! (provided they meet certain restrictions.) Riders who don't grab the brass ring get a consolation prize - a ride on the CASH attraction! Whether maxing out the credit cards, taking a second loan on the house, or sponging off of future grandparents, this is a ride that you will remember for the rest of your life as you struggle to pay off the debt!!
A new attraction for PCO sufferers has recently been added - called DAY ONE. This ride starts with the well-known classic DAY ONE - a big draw in the INFERTILITY group of attractions - and ratchets the anticipation UP!!! Will YOU meet the cut-off date??? Then of course there is the Day 3 FSH - do YOUR ovaries have what it takes?
The first part of the main ride is familiar to those who've been to the INFERTILITY attractions before - OPKs! But the intensity is GREATER - the highs are higher and the lows are lower and the kits are even HARDER to read!! But it all pays off as you move into....
MEDICATIONS! This is the most intense part of THE IVF PLUNGE, described by visitors as the ride from hell!! Whether your shots are sub-cutaneous or intramuscular, you won't want to miss the artificial menopause brought on by lupron, and don't forget THE HORRORMONES! You think you've done injectibles before? You think you're a pro? THINK AGAIN!! With HIGHER levels of injectibles, and DAILY monitoring, this is where the nightmare becomes reality! Then who can forget the terror of HYPERSTIMULATION, one of those random side trips! Another random side trip, POOR RESPONSE, has a chance of ending your ride early!!! Just another sense of anticipation! Can YOU make it through this part of the ride? If so, it's on to RETRIEVAL AND TRANSFER.
This ride is unique in that NO TWO PEOPLE EXPERIENCE THE SAME THING!! Some will sail through with arms raised, careening into the next sequence. Others will be shunted off due to poor egg or sperm quality, incomplete fertilization, or fragmented embryos! Your heart will be in your mouth as you await the phone call telling you how many embryos made it! And will you be sick with anticipation, or is that a reaction to the anesthesia???
Then the TWO WEEKS FROM HELL. Words cannot describe this phenomenon! With daily intramuscular shots of progesterone in oil, this is probably the most painful part of the ride! The highs and lows are even more intense, as you are surrounded by well-meaning but offensive friends and relatives saying "Well?" and otherwise telling you what you SHOULD have done. NOTHING you have experienced in the two week wait of prior cycles will prepare you for this!! You will laugh, cry, scream - all at the same time! You will feel suspended in time as you wait for.....
THE TEST. The most anticipated part of the ride!!! Some random number (depending on clinic stats) will PASS!! Those lucky riders will go on to the PREGNANCY ride, a swirling maelstrom of emotions, changes, and risks! Those who receive a negative beta-HCG are not left out though. They will descend a huge drop of what will seem like ten miles in about 10 seconds!! The misery and tears will be just the beginning, as pregnant women and women with babies and adorable toddlers will be EVERYWHERE! But never fear, because for only thousands of dollars you can once again -
Take THE IVF PLUNGE!!! Author unknown
Things I Wish I Could Tell People About Grieving Infertility
http://worldofwinks.wordpress.com/things-i-wish-i-could-tell-people-about-grieving-infertility/
What we wish you knew http://blessedarethebarren.blogspot.com/2007/12/what-we-wish-you-knew-supporting-loved.html
Blessed
Music by Elton John Lyrics by Bernie Taupin
Recorded by Elton John
Album: Made In England
Hey you, you’re a child in my head
You haven’t walked yet
Your first words have yet to be said
But I swear you’ll be blessed
I know you’re still just a dream
your eyes might be green
Or the bluest that I’ve ever seen
Anyway you’ll be blessed
[Chorus] And you, you’ll be blessed
You’ll have the best
I promise you that
I’ll pick a star from the sky
Pull your name from a hat
I promise you that, promise you that, promise you that
You’ll be blessed
I need you before I’m too old
To have and to hold
To walk with you and watch you grow
And know that you’re blessed
Infertility Etiquette
http://www.resolve.org/site/PageServer?pagename=lrn_ffaf_ie
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