Re: /Margaret

[Guest guest]

Thank you both for the advise. is 11. He also gets a lot of butt

pimples, but this is the first one that got infected. I guess I'm really worried

about the clindamycin  mostly because if he gets an upset stomach from it he

might not be able to hold down his seizure meds. It's just too many doses a day

for him too and he's going to start fighting me. He takes the seizure meds. with

no argument, but add something else to his day and he flips out.I'm going to

find the acidopilus today.Terry

[Guest guest]

Margaret

>>>>> have all been in 'that age of frustration'....some kids get out of it and

others stay in it. Our worst yrs with Gareth were between the ages of 5-10. I

was ready to be admitted to the loony bin.<<<<<

Amen...If the cavalry hadn't arrived when she was 10 in the form of Medwaiver

and medicaid, repite, PCA, ABA etc. I would be the one on Risperdal! The leader

of our DS organization told me once she started to get all these panicky calls

from Moms of regular DS kids around age 5 or so. I wonder if many of them are

just reaching the terrible twos. Watching get sucked down that black hole

of Autism at 2-4, like the Devil himself was pulling with all his might and then

that total wackiness at age 5 or so was something else. Not to scare anyone new

(shhhh...be afraid, be very afraid...just kidding...sort of).

>>>>To me, Risperdal was a gift

from God and our lives turned completely around. I am sorry that all kids

don't benefit from it. <<<<<<

You of all people know how disappointed I was that it did not work for

...tried it twice. Just another in the long line of things " natural " , and

medicinal. Thank God it worked for Gareth...I suspect the aforementioned God

knew what difficulties lay in store for you in the future and wouldn't allow the

" nasty, belligerant Gareth " personality to continue.

>>>>Also, I don't think that *I* have the stamina to

persevere through diets, supplements, ABA, etc. Yes, that is a lazy attitude,

but that is me.<<<<<<

OK Margaret...here is where I find it just a little insulting that you are

inferring that I am NOT lazy??!!LOL. BTW I am a TV person...big time these days.

How's that for laziness? It actually had nothing to do with stamina; it had to

do with exactly what you describe in Gareth. Because I happened to be a believer

in allergy, dietary stuff etc. because of my own and dh's history I started from

the getgo with this stuff. I never had to fight to take off of her

favorite foods later on. That to me is a herculean effort. PLus I kept seeing

glimmers of that dang light at the end of the tunnel. The last real bandwagon I

jumped on after burning out from all the previous ones was the SCDiet. It is an

enormous amount of work. However we were almost already there with GFCF and many

more F's.

spent all day groaning and moaning louder as the day progressed till at

night we couldn't stand to listen to it anymore. And she had become nasty,

belligerant ...violent, and aggressive. I will never forget dh, after

arguing with me about all the expense and time that went into this diet, the

first or second night she was on it (it involved removing rice and potatoes and

some other starches) he came up to me and fell to his knees, grabbed me around

the waist and said " Thank You!! " LOL. I realized then she had stopped that

continual moaning. It was quiet. And it pretty much has stayed that way unless

she's sick.

After that we were able to initiate a VB program and work on communication and

all. But it was a looooong time coming.

>>>>I guess that after fighting with Gareth for 10 yrs, I was

glad to have an easy *fix* in my life. He has done so well on meds that I

can't bring it upon myself to 'rock the boat' and take him off them.<<<<<<

And this is exactly how I feel about her diet. Fortunately we received help and

still have it to do the cooking and prep work. That's what we use our PCA hours

for. I've got an adoable little 24 yo Brazilian student with us for over 5 years

now and she can knock that food outta the park.

>>>>>> That is why I said I

think I *think* there are different types of autism. I think some are brain

autism, some are gut related autism, etc. Does that make sense?<<<<<<

Yes, of course it does. I think there may be cardiac surgery related Autism

(hypoxia), genetic Autism, Autoimmune Induced Autism, Virally induced Autism, CP

related Autism,

Vitamin or Nutrient deficiency Autism, An actual disease of Autism, hearing

related Autism,

Environmentally induced Autism (vaccines, heavy metals) and on and on. I tend to

think of Autism as the *symptom* for which we all agonize to discover the root

cause in each of our kids.

Sherry

[Guest guest]

Okay, I'm new and I'm getting very scared, but you bring up something I've been

wondering about.  Does autism get progressively worse?  I'm sure there are many

factors - general uniqueness of each child, early intervention, response to

biomedical interventions, response to medications, etc. - but, is there a

general trend toward getting worse?  Is there a point when it seems to level off

and the kids seem to maintain a certain level or improve? (I'm trying to be an

optimist so I'm looking for a bottoming out and then just improvement from

there, but that's probably not realistic.)  Aidan is 3 going on 4 and the

thought that he's just going to get worse and completely retreat within

himself really scares me. 

 

Dana

Subject: Re: /Margaret

To:

Date: Monday, September 21, 2009, 5:56 PM

 

Margaret

>>>>> have all been in 'that age of frustration' ....some kids get out of it and

others stay in it. Our worst yrs with Gareth were between the ages of 5-10. I

was ready to be admitted to the loony bin.<<<<<

Amen...If the cavalry hadn't arrived when she was 10 in the form of Medwaiver

and medicaid, repite, PCA, ABA etc. I would be the one on Risperdal! The leader

of our DS organization told me once she started to get all these panicky calls

from Moms of regular DS kids around age 5 or so. I wonder if many of them are

just reaching the terrible twos. Watching get sucked down that black hole

of Autism at 2-4, like the Devil himself was pulling with all his might and then

that total wackiness at age 5 or so was something else. Not to scare anyone new

(shhhh...be afraid, be very afraid...just kidding...sort of).

>>>>To me, Risperdal was a gift

from God and our lives turned completely around. I am sorry that all kids

don't benefit from it. <<<<<<

You of all people know how disappointed I was that it did not work for

...tried it twice. Just another in the long line of things " natural " , and

medicinal. Thank God it worked for Gareth...I suspect the aforementioned God

knew what difficulties lay in store for you in the future and wouldn't allow the

" nasty, belligerant Gareth " personality to continue.

>>>>Also, I don't think that *I* have the stamina to

persevere through diets, supplements, ABA, etc. Yes, that is a lazy attitude,

but that is me.<<<<<<

OK Margaret...here is where I find it just a little insulting that you are

inferring that I am NOT lazy??!!LOL. BTW I am a TV person...big time these days.

How's that for laziness? It actually had nothing to do with stamina; it had to

do with exactly what you describe in Gareth. Because I happened to be a believer

in allergy, dietary stuff etc. because of my own and dh's history I started from

the getgo with this stuff. I never had to fight to take off of her

favorite foods later on. That to me is a herculean effort. PLus I kept seeing

glimmers of that dang light at the end of the tunnel. The last real bandwagon I

jumped on after burning out from all the previous ones was the SCDiet. It is an

enormous amount of work. However we were almost already there with GFCF and many

more F's.

spent all day groaning and moaning louder as the day progressed till at

night we couldn't stand to listen to it anymore. And she had become nasty,

belligerant ...violent, and aggressive. I will never forget dh, after

arguing with me about all the expense and time that went into this diet, the

first or second night she was on it (it involved removing rice and potatoes and

some other starches) he came up to me and fell to his knees, grabbed me around

the waist and said " Thank You!! " LOL. I realized then she had stopped that

continual moaning. It was quiet. And it pretty much has stayed that way unless

she's sick.

After that we were able to initiate a VB program and work on communication and

all. But it was a looooong time coming.

>>>>I guess that after fighting with Gareth for 10 yrs, I was

glad to have an easy *fix* in my life. He has done so well on meds that I

can't bring it upon myself to 'rock the boat' and take him off them.<<<<<<

And this is exactly how I feel about her diet. Fortunately we received help and

still have it to do the cooking and prep work. That's what we use our PCA hours

for. I've got an adoable little 24 yo Brazilian student with us for over 5 years

now and she can knock that food outta the park.

>>>>>> That is why I said I

think I *think* there are different types of autism. I think some are brain

autism, some are gut related autism, etc. Does that make sense?<<<<<<

Yes, of course it does. I think there may be cardiac surgery related Autism

(hypoxia), genetic Autism, Autoimmune Induced Autism, Virally induced Autism, CP

related Autism,

Vitamin or Nutrient deficiency Autism, An actual disease of Autism, hearing

related Autism,

Environmentally induced Autism (vaccines, heavy metals) and on and on. I tend to

think of Autism as the *symptom* for which we all agonize to discover the root

cause in each of our kids.

Sherry

[Guest guest]

Hi Dana,

Our son is 5 and a 1/2 and he is doing really well. I found the year he

regressed really difficult (3 - 4). We didn't know what was happening and it did

feel like we were losing him, but after realizing he might be autistic we had an

explanation and this helped a lot. The official diagnosis took over a year, but

during that time we and his preschool teachers and therapists all accepted that

he had autism and this meant more understanding of the sensory overload issues

(for us this meant giving up the idea that he might get used to going out to a

restaurant or grocery shopping anytime soon, at school this meant lots of time

at the water table or in a ball pit and he would get to leave the class at noisy

times and walk the hallway). We all also tried to make his life as routine as

possible

At first I found this list a little scary too but its also good to know what

could happen especially for planning ahead and when we moved I was adamant that

we needed a fenced in backyard thanks to posts about older kids 'escaping'.

Darwyn is a pretty happy boy and we haven't yet tried any meds or diets, but I

like to know what's out there which this list is great for. Our saving grace the

1st year were the Signing Time DVDs and a preschool that really worked to help

Darwyn learn and integrate.

Re: /Margaret

To:

Date: Monday, September 21, 2009, 5:56 PM

 

Margaret

>>>>> have all been in 'that age of frustration' ....some kids get out of it and

others stay in it. Our worst yrs with Gareth were between the ages of 5-10. I

was ready to be admitted to the loony bin.<<<<<

Amen...If the cavalry hadn't arrived when she was 10 in the form of Medwaiver

and medicaid, repite, PCA, ABA etc. I would be the one on Risperdal! The leader

of our DS organization told me once she started to get all these panicky calls

from Moms of regular DS kids around age 5 or so. I wonder if many of them are

just reaching the terrible twos. Watching get sucked down that black hole

of Autism at 2-4, like the Devil himself was pulling with all his might and then

that total wackiness at age 5 or so was something else. Not to scare anyone new

(shhhh...be afraid, be very afraid...just kidding...sort of).

>>>>To me, Risperdal was a gift

from God and our lives turned completely around. I am sorry that all kids

don't benefit from it. <<<<<<

You of all people know how disappointed I was that it did not work for

...tried it twice. Just another in the long line of things " natural " , and

medicinal. Thank God it worked for Gareth...I suspect the aforementioned God

knew what difficulties lay in store for you in the future and wouldn't allow the

" nasty, belligerant Gareth " personality to continue.

>>>>Also, I don't think that *I* have the stamina to

persevere through diets, supplements, ABA, etc. Yes, that is a lazy attitude,

but that is me.<<<<<<

OK Margaret...here is where I find it just a little insulting that you are

inferring that I am NOT lazy??!!LOL. BTW I am a TV person...big time these days.

How's that for laziness? It actually had nothing to do with stamina; it had to

do with exactly what you describe in Gareth. Because I happened to be a believer

in allergy, dietary stuff etc. because of my own and dh's history I started from

the getgo with this stuff. I never had to fight to take off of her

favorite foods later on. That to me is a herculean effort. PLus I kept seeing

glimmers of that dang light at the end of the tunnel. The last real bandwagon I

jumped on after burning out from all the previous ones was the SCDiet. It is an

enormous amount of work. However we were almost already there with GFCF and many

more F's.

spent all day groaning and moaning louder as the day progressed till at

night we couldn't stand to listen to it anymore. And she had become nasty,

belligerant ...violent, and aggressive. I will never forget dh, after

arguing with me about all the expense and time that went into this diet, the

first or second night she was on it (it involved removing rice and potatoes and

some other starches) he came up to me and fell to his knees, grabbed me around

the waist and said " Thank You!! " LOL. I realized then she had stopped that

continual moaning. It was quiet. And it pretty much has stayed that way unless

she's sick.

After that we were able to initiate a VB program and work on communication and

all. But it was a looooong time coming.

>>>>I guess that after fighting with Gareth for 10 yrs, I was

glad to have an easy *fix* in my life. He has done so well on meds that I

can't bring it upon myself to 'rock the boat' and take him off them.<<<<<<

And this is exactly how I feel about her diet. Fortunately we received help and

still have it to do the cooking and prep work. That's what we use our PCA hours

for. I've got an adoable little 24 yo Brazilian student with us for over 5 years

now and she can knock that food outta the park.

>>>>>> That is why I said I

think I *think* there are different types of autism. I think some are brain

autism, some are gut related autism, etc. Does that make sense?<<<<<<

Yes, of course it does. I think there may be cardiac surgery related Autism

(hypoxia), genetic Autism, Autoimmune Induced Autism, Virally induced Autism, CP

related Autism,

Vitamin or Nutrient deficiency Autism, An actual disease of Autism, hearing

related Autism,

Environmentally induced Autism (vaccines, heavy metals) and on and on. I tend to

think of Autism as the *symptom* for which we all agonize to discover the root

cause in each of our kids.

Sherry