Originally Posted by jillio

Dang, you're good!

Originally Posted by jillio

Oh, I understand you aren't trying to be negative. You have had a lot thrown at you in a short amount of time and are still trying to sort through it all. People are throwing words and terminology at you that often has a negative implication by the general population.

Try not to compare too much. I'm sure if you compared all of your other childen to each other, you would find that this one developed this skill earlier, and that one seemed to comprehend things at an earlier age, etc. What I am saying is that kids, even kids with problems like Frankie's, are individuals. We can say what the average child is able to do at the average age...but in practice there is a wide variance there. And what is average is not always what is considered "normal". Einstein exhibited what were believed to be developmental delays, and his IQ was questioned as a young child, as well. Gallileo was thought to be insane.

Originally Posted by jillio

frankiesmom,

I watched a documentary last night with you and Frankie in mind. I thought it might be something you would be interested in, so I checked it out.

The title is Loving Lamposts and it is a photojournalist's attempt to document his son's autism and the autism of others. It explains both the medical model (the kid is sick and needs to be cured) and the holistic perspective, which the journalist and share with many, many others. The holistic perspective believes that autism is not an illness and does not need to be cured, but is simply a different way of being. And if that difference is understood and approached from a strengths based attitude, autistic individuals can accomplish anything they choose. You will see one adult female who has a master degree, but no verbal skills at all. She was originally believed (by the medical professionals) to be severely and uneducably mentally retarded. You will also see an extensive interview with an autistic adult male with a doctorate in education. He goes into some pretty specfic descriptions of what his parents did that was so helpful for him

I found the film to be very interesting, and I think you might pick up some valuable information for you and Frankie. I got it on Netflix streaming to my computer, but I'm certain you could find it at a library, as well.

Just thinking of you, and wanted to throw that out for you!

Originally Posted by deafdyke

FrankiesMom, is there any way at all you could have him seen at a REALLY good Children's Hospital? Like one affliated with a research hospital? It's very possible that you're dealing with a rare syndrome and that is why everyone's all " Huh?" Take it from a girl who also puzzled the average docs...Heck I even puzzled the docs in Boston. I would DEMAND an extensive karotype/genetic tests. Three or more things point to a genetic cause. You know, your son's symptoms do sound kind of like some kids with my genetic syndrome. Some of us are autistic, we have low muscle tone and some of us are mentally handicapped.

Originally Posted by rebeccalj

I like this ---> A different way of being

We, each of us, are individual. Why then, do 'experts' think we have to be same?

Originally Posted by sallylou

Wirelessly posted (droid)

You've had a lot to deal with and it's natural to worry about your baby. Can you get a whole day to youself to recharge? Have hubby or friend keep the kids and do something for yourself, even if it's just time alone in a coffee shop. If you don't take care of yourself, you won't be able to take care of your family. From one mom to another, I know that it's hard. You've done such a good job with Frankie, and you need to hear that.

Originally Posted by jillio

Not all of them do. You just have to find the ones that don't.

Originally Posted by Bottesini

You also need to find some help sometimes from the average person who is going to be really mean just because you are different.

Then they will pay lip service to how everyone should be accepted, but the different person is often attacked by the ones claiming they are inclusive.

I have a lot of experience with this , sadly. It's important to have someone to buoy you up when people are nasty.

Originally Posted by jillio

Not all of them do. You just have to find the ones that don't.

Originally Posted by rebeccalj

True. We're probably isolated here so it seem worse than it is out in the whole world.

Originally Posted by whatdidyousay!

My niece that has asperger has slow muscle tone and she is not able to made eyes contacts when talking to a person. She had to see a few doctors before anyone knew she had asperger .

Originally Posted by frankiesmom

and that is why i am not completely on board with the autism part of her diagnosis..this boy loves people..LOVES people. and he will make eye contact.
if she didnt have a huge shelf of autism books for sale, i might be a tiny bit more able to believe that she didnt jump straight to autism but who can say?
i am going to ask the genetic dr to test for fragile x syndrome because that fits him way more than anything else..i was looking at pictures of babies with it and the symptoms and it fits him so perfectly, except for a couple of things. he has the large forehead and protruding ears, the low muscle tone and flat feet, the hearing loss, and the simian creases on both hands, along with the mental retardation..i could be dead wrong but everything i have read about it fits him so perfectly, and it seems fairly common. well, its a fairly common cause of the delays/hearing loss together, at any rate. i just read another article that also mentioned that having a heart murmur is one of the characteristics too..obviously, this alone wouldnt be a symptom but what i am getting at is that this really seems to fit him very well.

Originally Posted by frankiesmom

we have a surgery consultation on wednesday for the feeding tube..i HATE doing that because sometimes he does eat, and hes isnt underweight, but i think as he gets older, and starts losing his baby fat, the little bit he is eating wont sustain him, and its a huge battle to get the bare minimum in him.

Originally Posted by sallylou

The term used to be simian crease or line. It's a negative reference so now it's single palmar crease.