Parents of kids with autism, please read

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Hello there. I was just wondering if any of you would be interested and participate in a ''sticky'' if I started one for parents of kids who have autism. I ask because sometimes I come across stuff that isn't exactly nursing related, but still would be very interested to the number of us that I have noticed mention having children with autism. I never know where to post it. I usually put it in the ''developmental disabilities nursing'' forum, but it isn't quite right there. Plus I think it tends to get lost, since there aren't usually many responses, so the people who would be most interested end up missing it. At the same time, those responses that I get in that forum are often from people who actually have lots of experience with autism, which is a good thing. Don't get me wrong, I understand that everyone has a right to post in whatever forum is of interest to them. Personally, I would like to see the ratio of responses from people personally involved increase, though. Let me know what you think, and in which forum you think that such a sticky might belong. Thanks!

My son is autistic. i think we can share a lot of info amongst ourselves, and for our autistic patients.

Specializes in Public Health, DEI.

There are a lot of misconceptions about Asperger's, I think. I keep hearing it used synonymously with the term "high functioning autism", which, as we all know, has no DSM defining criteria. I consider my son to be high functioning, even though his IQ tests very low. He has relatively good social skills and many people who know us don't even know he has autism. To me, even though he struggles academically, on a day to day basis, he is higher functioning than many people I know with Asperger's, who struggle with the most basic social interactions. Whose to say, though? High functioning is in the eye of the beholder.

Now, something interesting I heard at an autism conference recently. This is from a physician at the University of California Irvine Medical Center, who is working on the committee that will release the DSM-V. She said that the sentiment is leaning heavily towards getting rid of the "Pervasive Developmental Disorders" umbrella and replace it with "Autism Spectrum Disorders".

CNN right now is talking about a family that got a $5 million settlement because they believe their daughter was damaged by vaccines. It sounds legit (not only did her behavior change, she even stopped growing) but it turns out she also had an underlying disorder of the mitochondria. The mom also has it but is normal. She had been chronically ill with ear infections for some time prior to receiving her vaccinations, so it sounds like she may have had an immune disorder to begin with.

Interesting aside: Her father is a physician. Has anyone else noticed that a huge percentage of really severely autistic people have at least one physician parent? I have.

Specializes in Public Health, DEI.

Hannah Poling's brain was irrevocably damaged by vaccines. Yes, she had a rare cellular disorder and yes, she may well be more of an exception than the rule (though not the only exception, as the government has quietly paid off at least 9 other families with children that were harmed by vaccines).

If only more doctors had been willing to consider the possibility that in limited, perhaps extremely limited situations, massive doses of vaccines administered at one time could cause this kind of damage, maybe we would have known about Hannah's situation earlier. I wonder how many children with the same disorder have been given the same doses of the same vaccines in the 9 years since Hannah as her parents knew her disappeared the day she got her shots.

Nope, because it had to be all or nothing, there's been no serious attempt to make risk screening and separated doses the standard of care for children. I just hope to God that these discussions can take place now without Chicken Littles on both sides of the debate drown out the rational discussion with their cries of the sky is falling.

http://www.cnn.com/2008/HEALTH/conditions/03/06/vaccines.autism/

Specializes in Public Health, DEI.

Well, 2 posts in a row from me, but there is another autism thread right now discussing the autism/vaccine question. Apparently those of you who are with me in the "we need to look at how vaccines are administered" are as loony as I am and wear colanders on your head! No, I'm not kidding. And there is also a word about "institutionalizing" people with severe autism because after all, how could a family benefit from having them around? Think I'm kidding? I'm afraid not!

Well, 2 posts in a row from me, but there is another autism thread right now discussing the autism/vaccine question. Apparently those of you who are with me in the "we need to look at how vaccines are administered" are as loony as I am and wear colanders on your head! No, I'm not kidding. And there is also a word about "institutionalizing" people with severe autism because after all, how could a family benefit from having them around? Think I'm kidding? I'm afraid not!

And you're addressing me. No, I do not think that questioning how vaccines are administered is a colander on the head thing. I do think that the concept that they exist as a conspiracy to produce a generation of handicapped children (you should check some of those websites out, really, if you don't believe me) is.

Placing a family member in a care facility is an individual decision, and a very painful one. But as a nurse and the mother of a disabled child yourself, have you never encountered a situation where a family was better off if someone was not living with them? Did you read the link I posted? The writer said he understood why another parent killed his autistic child, okay? A doctor (here we go again) in my area was recently sentenced to life in prison for killing her own autistic daughter by smothering her with a plastic bag - not because she was so hard to care for, but because she admitted that she had no use for an imperfect child! Bet you wouldn't defend the actions of those parents.

I hear about kids who go through years of intervention with NO progress and wonder how many of those clinics are genuine and how many of them exist because the money is green? You just know there are autism quacks the way there were once (and, granted, still are) quacks for other diseases and conditions.

Specializes in Public Health, DEI.

Actually, I was addressing everyone on the thread that used words such as "ridiculous", "colander wearing" or "conspiracy theories". If you didn't use those words, you're not included and if you did, you are.

I am not in a position to judge for other people whether they are better off putting a child in residential placement. I know it isn't some panacea where you hand your kid off and like magic, all is right in your world again. I do know a mom of a son with profound autism and he is placed in a residential school 3 hours from here. I don't think a day goes by that she doesn't cry. She had to make a decision based on what was right for her family. It isn't for me, or God forbid, you, to say.

And people with autism have a disability. They aren't handicapped.

Specializes in Public Health, DEI.

For us Moms. I got this in an email today. Lori Borgman is the author of All Stressed Up and No Place to Go and this is shared with her permission. Not everyone will agree with all of it, but it hits home on a lot of points.

Happy Mother's Day: Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care

what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps

right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't

see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a

checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will

be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the

well-intentioned souls explaining how God is at work when you've

occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the

motherhood line yelling,

"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in

perspective, so let me do it for you. From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July,

counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Specializes in NICU, PICU, PCVICU and peds oncology.

As the mother of a deeply cherished adult with multiple disabilities, thank you so much for posting this. Yes it's hard, but for me it's worth it!

Specializes in Public Health, DEI.
As the mother of a deeply cherished adult with multiple disabilities, thank you so much for posting this. Yes it's hard, but for me it's worth it!

I'm glad you like it. I really like the line about the platitudes... what I like best about this piece is that it recognizes the value of what we do without suggesting that our children are a burden the way so many "tributes" can do.

Yep, it's been hard but totally worth it!

Specializes in Public Health, DEI.

So...

Anyone want to talk about Michael Savage?

So...

Anyone want to talk about Michael Savage?

Is this the nutjob who said that most kids who were diagnosed as autistic have nothing more than the need for a good whipping?

Not so many years ago, when we didn't know what we do now, that's exactly what a lot of parents AND TEACHERS did to their children - sometimes well meaning, too often not.

I'm kind of glad this story disappeared from the news. The last thing he needs is attention, which you just know he craves.

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