this is moving

some of the blogs i read are from parents with children who have autism...this is one that i found and this post is so moving i wanted to share it. i work with these kids everyday and i love it, but at the end of the day i go home to my quiet house, and on the weekends i go run errands without worrying about people staring. these families go through so much day in and day out...

If I had a pound for every time I heard someone say ‘if he were my son I would give him a good spanking’ or ‘if he were mine I wouldn’t take him out in public’ etc etc - I would be a rich woman. Not one day has gone by when I have taken C out that I do not hear at least one derogatory hurtful remark about my beautiful son. So sadly I think Michael Savages’ recent thoughtless comments on autism represents a proportion of societies views about our children.

When i see C happy my heart sings. But others find this large display of pure joy disturbing embarrassing and even frightening. We have emptied countless cafes, shops, or even been asked to leave.
When C was diagnosed all those years ago many friends disappeared as they didn't know what to say or how to relate to C. Some didn't want their child 'catching' autism. Our world shrank as people kept away. Only recently C and i met up with someone we had known many years ago. We had a coffee - she went to the loo -and never came back.
You get used to living on 4 hours sleep, cleaning poo off the ceiling, trying to find something C may eat. You get over wondering what his voice would sound like if he ever spoke. And there will always be another funding battle to fight.

A new way of life emerges and becomes the norm.
Other things take priority, the superficial, artificial and materialistic things are just that, they are things.

C gives me so much more. A smile, a look, a delighted squeak. A licked clean plate (on those rare occasions). A licked clean train carriage window is more often.
Our odyssey has not been easy. There have even times been times when I thought he was going to die. All the comfort I was given by doctors, was ‘wouldn't he be better off dead’.
Society judge him, make fun of him, they film him on their mobiles. C has had dog biscuits thrown at him in the street, and once was even punched by a passer by. Some of my family are embarrassed by him, some say they are scared of him others pity me and give C no second thought.

They don’t see the beautiful being that he is, or the gifts that he shares. They don’t see that C is happy and does have a quality of life. They cant get their heads round it, or rather they don’t want to or even try.
Living with disability can be tough at times, but you get there. It is also full of much love, joy and laughter. And i wouldn't have it any other way.

It’s the prejudice I find the hardest part. The attitudes of some family and friends and some professionals whom we are supposed to trust. And the strangers in the street.

And that is on going. This is our reality. C by the very nature of his autism and challenging behaviour is isolated and in turn isolates me as his mother.

Alternative Vaccine Schedules

This is a great link. It has a lot of information about how vaccine schedules have changed and some good information for parents on alternative schedules. It makes a lot of sense...why give a baby vaccines the day after they are born? Why give them so many when they are 2 months, 4 months and then 6 months? Why not wait until they are old and their immune system is stronger? Just some things to think about....

Looking For Information on How To Vaccinate More Safely?

This makes sense!

By Elizabeth Cohen
CNN Medical Correspondent

ATLANTA, Georgia (CNN) -- Five years ago, Kathye Petters-Armitage's first child received the exact vaccinations on the exact schedule recommended by her pediatrician.

Hannah Polling's autism was found to be "significantly aggravated" by her childhood vaccines.

But when she gave birth to her second child, Petters-Armitage had a change of heart.

In the intervening two years, she'd read a lot about concerns that vaccines cause autism and decided to ask her pediatrician to give her new baby fewer shots spread out over a longer period of time.

"I wasn't a hundred percent convinced there was a link between autism and vaccines," said Petters-Armitage, of Santa Clarita, California. "But I didn't want to be one of those parents who found out the hard way."

Pediatricians say they've seen a dramatic increase in the number of parents who, like Petters-Armitage, want to make changes in the vaccine schedule set forth by the Centers for Disease Control and the American Academy of Pediatrics, a schedule once considered by many pediatricians to be sacred and largely immutable.

Many of these doctors say even though they might disagree with these parents, they are making changes.

"If a parent says no to an intervention, including a vaccination, I have to accept that," said Dr. Arthur Lavin, a pediatrician in Beachwood, Ohio, and associate clinical professor of pediatrics at Case Western Reserve University School of Medicine. "I share with them what I know, but ultimately, it's the parent's decision."

Dr. Kenneth Bock, a clinical instructor in the department of family medicine at Albany Medical College in New York, put it this way: "It shouldn't be my way or the highway. We can't say one size fits all. One size doesn't fit all."

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In an article on CNN.com in March, two CDC doctors wrote, "Although some may call it a 'one size fits all' approach, the recommended vaccine schedule is flexible."

The following is a list of vaccine changes that parents have requested and that some pediatricians have agreed to make. It does not include a discussion of the pros and cons to each approach, or a discussion of whether vaccines and autism are even linked, but rather a list of some approaches being used by some pediatricians and parents.

1. Delaying the first hepatitis B shot

Currently, newborns receive hepatitis B shots before they're discharged from the hospital.

"I've never understood why we give this at birth," said Dr. Richard Frye, assistant professor of pediatrics and neurology at the University of Texas Medical Center at Houston.

Hepatitis B is spread by having sex with an infected partner, by sharing needles, by sharing razors or toothbrushes with an infected person or by contact with blood or open sores of an infected person.

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"I don't know babies who have sex or share needles," said Dr. David Traver, a pediatrician in private practice in Foster City, California.

Lavin says that instead of giving the hepatitis B shot at birth, he routinely gives it when a baby is 2 months old.

One exception: If a mother carries hepatitis B, her baby must receive the vaccine and treatment for hepatitis B infection.

2. Not doing some shots at all

The pediatricians interviewed for this article were unanimous on this point: Not all diseases are created equal. Some diseases for which children are vaccinated are easier to catch than others, and some are more deadly.

For example, Petters-Armitage told her doctor she wasn't as worried about chicken pox or rotavirus as she was about diseases like polio and pertussis. Even though she says he disagreed with her, he abided by her wishes and didn't give her second and third children vaccinations for chicken pox and rotavirus.

The pediatricians interviewed for this article advise parents that if they're concerned, they should sit down and discuss with their pediatricians the severity of each disease before proceeding with vaccinations.

3. Checking for 'titers' before giving booster shots

For many vaccines, such as chicken pox, children receive boosters to "boost" the immunity received from a previous shot. Some children, however, might not need the booster because they had an adequate immune response to the first shot.

Pediatricians sometimes will do a blood test to check a child's titers. "Checking titers" refers to measuring the amount of antibodies in the blood, an indication of whether the person is immune to a certain disease. Checking titers isn't routine and sometimes is not covered by insurance.

"If you came to me and said you wanted to check titers, and you'll pay for it, would I do that for you? I would," said Dr. Laura Jana, a spokeswoman for the American Academy of Pediatrics.

4. Spreading the vaccines out over a longer period of time

This is the hallmark of the Sears Schedule, an alternative vaccine schedule developed by pediatrician Dr. Robert Sears.

Sears' patients bring their babies in for shots seven times between the ages of 2 to 9 months, never receiving more than two shots at each visit.

Under the CDC schedule, children come in three times during that age range, receiving sometimes five shots at one visit.

5. Splitting up combined shots

Several vaccinations are combined into one shot. For example, measles, mumps and rubella are put together into one injection called MMR, and diphtheria, tetanus and pertussis are put together into one shot called DTaP.

MMR is available as three injections, but most doctors don't have them. If you want to separate out these shots, you may have to get a prescription and find a pharmacy that will order them for you and then give them to the doctor for injection.

Some doctors do offer the shots separately. Sears gives measles, mumps and rubella shots separately and at three different ages. Lavin said he's received so many requests to separate out the MMR, he's ordered the separate shots.

Pertussis is not available separately, so even doctors like Sears, who offer an alternative schedule, give the DTaP shot.

The pediatricians we talked to said the key is to talk to your doctor about whether an alternative schedule is best.

"It's a talk. It's a whole appointment," Traver said. "Call the receptionist and say you'd like to make an appointment with the doctor to discuss immunizations."

Another consideration: what's best for your child. For example, in the case of Hannah Poling, the federal government found that vaccines she received as a toddler "significantly aggravated" an underlying illness that predisposed her to symptoms of autism. The "vaccine court" ordered that her family be compensated financially.

It's not entirely clear what family history would put your child at risk for vaccine problems, but Frances Page Glascoe, a professor of pediatrics at Vanderbilt University Medical Center, says parents should look back at least ask the question.

"I would look at Mom, Dad, siblings, aunts, uncles, cousins who had developmental disabilities, including language disorders and autism spectrum disorder," she said. If parents find such a family history, "that would cause me to discuss an alternative vaccination schedule.

Jon Poling, Hannah's father, says it's clear to him now that he should have been more wary.

"We have autoimmune disorders on both sides of the family, and Hannah had multiple febrile infections with ear infections and horrible trouble with eczema," he said. "All of those are red flags that a child is at risk."

autism in the news

I am trying to stay current on everything that is going on in the news about autism and vaccines. Here is my opinion...I think there are way too many vaccines given to babies. There should be an alternate schedule to take into account small birth weight, premature, and sickly babies. As for Jon and I, we will definitely demand and alternate vaccine schedule. I know its controversial, but until they find out what causes autism I am going to error on the safe side.

This brings me to my next thought. On Good Morning America they had a short segment on autism...I'm not sure if it is going to be a special (I need to look that up so I can TIVO it). Anyway, the people on the special were from a group called "Autism and Proud" and they feel that we should not be trying to find a "cure" for autism. They insist that it would be better if we just celebrated the differences. This got me thinking...when I first started doing ABA therapy, I thought the same thing. I didn't understand why we were trying to make these kids "normal". I mean what is "normal" anyway, right? After being in this profession for 2 years, I am now much more educated on the subject. First, there are many, many types of therapy/interventions out there that claim to cure autism. ABA is the only evidence based intervention that has been proven to help (not cure, but teach). Everyday I teach kids with autism how to learn from their environment and how to interact with the people in it. The kids that I work with are severe and the thought of just not teaching them breaks my heart. These kids deserve to learn and if they are not learning the way we typically teach, then we need to change the way we teach. I agree that we should celebrate these children. They all have extraordinary abilities, just as every child does, but to ignore their autistic tendencies and not try to teach them better ways to communicate or have fun...that is just not in the best interest of the child.

I know this is a controversial topic, and I hope I didn't offend anyone, but this is whats on my mind tonight.