frankies diagnosis

frankiesmom said:
it looks like that, but what hes REALLY doing is his very odd, repetitive head cocking thing, followed by a head tap. why? not sure! but it is very interesting to see. he also will follow up with his hand held over his eyes, as if he is shielding them from the sun. that picture, and the other ones that same day took FOREVER to take because he was doing that the whole time.
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Do you think when he get a little older you take him for more testing, the doctors may get a better idea why he doing this? I know it took the doctors awhile to realize my niece had aspergers, the doctors kept telling my sister she was shy! My older sister and I knew that was not true ,but my sister thought the doctor was right! It was a relief when a doctor finally realize my niece had aspergers so she could get the help she needed.
 
frankiesmom said:
it looks like that, but what hes REALLY doing is his very odd, repetitive head cocking thing, followed by a head tap. why? not sure! but it is very interesting to see. he also will follow up with his hand held over his eyes, as if he is shielding them from the sun. that picture, and the other ones that same day took FOREVER to take because he was doing that the whole time.
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that sounds like what my friend's mom did. it's like "twitch" or something every several seconds.
 
yeah! that is exactly what it is..its just damn peculiar..its like his whole not grabbing stuff, but patting at it..who knows? i really think it COULD be genetic, but then i also think it is just "one of those things", which sucks because i like knowing the reason behind things. but yeah, he will be going along and cock his head over almost upside down, tap the side of his head, and then look at his hand. very..different. and somewhat dangerous because he keeps running into stuff!
 
frankiesmom said:
it looks like that, but what hes REALLY doing is his very odd, repetitive head cocking thing, followed by a head tap. why? not sure! but it is very interesting to see. he also will follow up with his hand held over his eyes, as if he is shielding them from the sun. that picture, and the other ones that same day took FOREVER to take because he was doing that the whole time.
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Well, he is just too darn cute for word.

Here is my 'supposed never to achieve anything' daughter. Have hope Mum. You never know. Whatever Frankie is to achieve it will most certainly include touching the hearts of thousands. Along with you.

http://www.facebook.com/media/set/?...=a.25422660240.57621.776520240&type=1&theater

Yes, the eye colour is natural. :cool:
 
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!
 
rebeccalj said:
Well, he is just too darn cute for word.

Here is my 'supposed never to achieve anything' daughter. Have hope Mum. You never know. Whatever Frankie is to achieve it will most certainly include touching the hearts of thousands. Along with you.

Facebook

Yes, the eye colour is natural. :cool:
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Did you know we have to log in to Facebook to see that photo? I have no desire to join Facebook.
 
Jane B. said:
Did you know we have to log in to Facebook to see that photo? I have no desire to join Facebook.
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frankiesmom said:
she was just trying to be nice!
:naughty:
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jillio said:
Then I guess you aren't going to see the picture.
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Don't be silly. Bottesini remembers all. See post #1661
In pics of you part v
74016-pics-you-part-v-56.html
 
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.
 
jillio said:
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.
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Yes. Every kid is different. The thing is with the low muscle tone and the hearing loss, it's very possible that if they are addressed, he could have more potential then they ever thought. It's good that he's classfied as "teachable"....Meaning there's potential already there. You'll hear a lot about kids with significent developmental issues, who when given hearing aids or whatever make HUGE gains.
 
jillio said:
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!
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I like this ---> A different way of being

We, each of us, are individual. Why then, do 'experts' think we have to be same?:hmm:
 
i dont think its anything rare, but yeah i am asking for any genetic testing they can do, to be done. of course, he is back to NOT eating again..hes ok though, for now. the teachable thing is interesting..she said that when she first started her practice, they had 3 classifications: educable, teachable, and trainable. times change i guess!
as for comparing..honestly, i CANT compare frankie to the others at all..he is unlike any child i have ever known, except for my sisters son that has down syndrome.
the hearing loss i am sure plays a part, but not in the really significant stuff...poor kid is a mess, but hes happy! that sounds so trite, but it is true though.
 
deafdyke said:
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.
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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 .
 
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.
 
sallylou said:
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.
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Very well said. This mom is doing an amazing job, and handling some very emotional issues calmly and logically. She needs to take time to replenish all of the energy she is expending in holding this situation down the way she has done.
 
jillio said:
Not all of them do. :cool2: You just have to find the ones that don't.
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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.
 
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