Why do I have to feel embarassed at the speech therapy office??

February 13, 2012

Hi everyone,

I am going to bother all of you again with my nonbiomed issues. My son goes to

speech therapy once a week. When I look around in the waiting area, most of the

kids who come there for speech therapy are mostly verbal. They are either

playing video games or games on their phones, or they play with the toys in the

waiting area or with each other. Except for one non-verbal boy who is in my

son's school class also, every body has more speech and a more appropriate

behavior as compared to my son. I usually don't take any improvement that my son

has made for granted and thank God everyday for little gains but today my son

was unusually happy and very well behaved when he got home from school. He

waited patiently while I got his baby sister ready and then we went to speech at

a different schedule than usual. He was still very happy and once we were in the

waiting area, he got very excited and started making very loud happy sounds

which sounded like na na na na. For some reason, every parent in the waiting

area started staring at my son and me as if we were aliens and I had to kinda

give explanation and asked my son " Hey buddy! are you really excited? " I noticed

that parents don't stare at a child who has obvious physical abnormalities(not

that they should anyways) but look at my son like he is some wierd kid who is

stimming and trying to mouth objects. What bothers me is that this speech

therapy place should be at least one place where I should not be facing this and

people should show some more respect. The staff is excellent but most of the

parents are not friendly at all. Every time I go there, I come home so much

sadness. The therapist is excellent and I don't want to take him anywhere else

but why is my son way behind most of the kids that come for therapy (and some of

them do have the ASD diagnosis). I took him to another social skills class last

week and there they will have to provide him one on one therapist in a group

setting to get him to engage with others while the others in the group are also

on the spectrum and not on biomed and still have better social skills than my

son. Oh I guess, I am getting depressed today and have a lot of negative

thoughts. Just wanted to share with other parents and see if any of you have a

similar experience at the therapy offices.

is

February 13, 2012

this makes me so F###in mad! what the F. is wrong with people! I wish i would be there I would politely....er..ok not so politely tell them its rude to F###in stare at people...and maybe karma will come back one day and people will be starin at them while they droolin at the mouth in some nursing home. as you measure others so shall you be measured..

with that said....crap i wish i could B. slap these people. ok...im done. cough.

with that said.....I had a similar experience today...my son doin better but still we have our "moments" and I am very proactive in tellin people right away that he has autism....and I say it in a way that I stare them straight in their eyes when i do it......like my mouth says he has autism....but my eyes say....he has autism I dare you to think something bad of him cuz I will twist your head off if you do..

and I find people respond to that really well..

dont feel bad is...I know you are a woman of faith...God is capable of healing in his time when he feels it is right...trust that when it is the right time for your son he will catch up to where he should be...

I had a faith healer a couple months back work on my son...I swear for a whole day autism disappeared and I felt the power of Gods amazing healing abilitys....then my sons issues came back....and I knew...I knew God gave me that one day to show me he is capable of anything but that their still are lessons I need to learn and my son also in this autism journey...

....one day at a time...one foot at a time...

xo channa

To: mb12valtrex Sent: Monday, February 13, 2012 10:00 PMSubject: Why do I have to feel embarassed at the speech therapy office??

Hi everyone,I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which

sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son "Hey buddy! are you really excited?" I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to

provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.is

February 13, 2012

Believe me,is, the people doing the staring aren't going home to read books every night. Gauge your critics. ; )

Sent from my Kindle Fire

February 13, 2012

Ditto!! They are the uncivilized idiots!! Not you or your son!! Personally, if something like this happened to me and my son, I would feel much better if I confronted the morons. I would look them straight in the eye and ask them why are they staring. They'll usually stop after that......feel better is!!! One foot in front of the other!! To: mb12valtrex Sent: Monday, February 13, 2012 10:56 PM Subject: Re: Why do I have to feel embarassed at the speech therapy office??

Believe me,is, the people doing the staring aren't going home to read books every night. Gauge your critics. ; )

Sent from my Kindle Fire

February 13, 2012

is, how are your son's mito functions?

February 13, 2012

Hi Alberta,

My son had some basic workup done by his dan including lactate, pyruvate,

ammonia which all came back normal. We never had CoQ10 levels or carnitine

levels checked. His OAT done at metamatrix lab in december 2010 had shown

mitochondrial dysfunction and we started using carnitine and continued for about

10 months. At that time, my son was getting a little aggressive at times, had

signs of adrenarche/precocious puberty and elevated testosterone and I stopped

zinc and carnitine as zinc increases testosterone and carnitine promotes

testosterone's actions. Once his testosterone levels normalized, I tried to add

back in l-carnitine but each time he became more tantrumy. I recently purchased

a bottle of acetyl-l-carnitine and was planning to give it a try but I am

currently dealing with phenol issues and yeast flare so wanted to hold off on

starting any new supps. I have been following your posts about the supps you use

and really want to add back carnitine. Also I ran out of CoQ10 and then my dan

told me that our kids need ubiquinol and cannot utilize CoQ10 so I am still

looking for a good brand without any animal ingredients(gelatin/glycerin). I

found Dr Mercola's ubiquinol with fish capsule and I am thinking of giving it a

try. I am also eagerly waiting for an appointment at the children's hospital of

Pennsylvania to get some genetic and metabolic workup done as I am tired of

dealing with local NJ docs who don't believe in any medical workup.

I would say that my son did do well on l-carnitine initially as he developed a

better muscle tone and starting holding pencil and groceries for the first time

and I havn't lost all the gains from carnitine. I would love it if you could

guide me as to how to proceed to get him assessed for mito dysfunction and how

to put him back on the carnitine family(l-carnitine/acetyl lcarnitine).

Thanks

is

>

> is, how are your son's mito functions?

>

February 13, 2012

is-Did you check on the Tishcon brand of CoQ10? It is the brand several mito docs recommend.I gave my son ChewQ and he said it made him feel great.BTW,my son had normal levels of the same things yours did but we still started a mito cocktail a year ago. his carnitine levels were consistently low and it helped significantly. Melinda

To: mb12valtrex Sent: Monday, February 13, 2012 10:49 PMSubject: Re: Why do I have to feel embarassed at the speech therapy office??

Hi Alberta,My son had some basic workup done by his dan including lactate, pyruvate, ammonia which all came back normal. We never had CoQ10 levels or carnitine levels checked. His OAT done at metamatrix lab in december 2010 had shown mitochondrial dysfunction and we started using carnitine and continued for about 10 months. At that time, my son was getting a little aggressive at times, had signs of adrenarche/precocious puberty and elevated testosterone and I stopped zinc and carnitine as zinc increases testosterone and carnitine promotes testosterone's actions. Once his testosterone levels normalized, I tried to add back in l-carnitine but each time he became more tantrumy. I recently purchased a bottle of acetyl-l-carnitine and was planning to give it a try but I am currently dealing with phenol issues and yeast flare so wanted to hold off on starting any new supps. I have been following your posts about the supps you use and really want to

add back carnitine. Also I ran out of CoQ10 and then my dan told me that our kids need ubiquinol and cannot utilize CoQ10 so I am still looking for a good brand without any animal ingredients(gelatin/glycerin). I found Dr Mercola's ubiquinol with fish capsule and I am thinking of giving it a try. I am also eagerly waiting for an appointment at the children's hospital of Pennsylvania to get some genetic and metabolic workup done as I am tired of dealing with local NJ docs who don't believe in any medical workup. I would say that my son did do well on l-carnitine initially as he developed a better muscle tone and starting holding pencil and groceries for the first time and I havn't lost all the gains from carnitine. I would love it if you could guide me as to how to proceed to get him assessed for mito dysfunction and how to put him back on the carnitine family(l-carnitine/acetyl lcarnitine).Thanksis>> is, how are your son's mito functions?>

February 13, 2012

is-We are in our 3rd year of speech,biomedical,etc.I can remember feeling exactly as you do 3 years ago.My son would just script and back then he was focused on the words " damn it" and would say it over and over,laughing while he said it.The place we go for therapy is a Christian based organization so imagine my embarassment even more when he was using a curse word.Fast forward to today,now when we go in he sits and reads books to the other kids in the lobby.I had no idea then he would have come so far but here he is and you are doing all the right things to get your son there too.And even though he has come really far,I get depressed when I see him around other kids his age because I see where he should be.Anyway,I will rejoice for where he is now.Keep your chin up

dear,we know how you feel and we are always here to listen because we have felt it too. Melinda

To: mb12valtrex Sent: Monday, February 13, 2012 9:00 PMSubject: Why do I have to feel embarassed at the speech therapy office??

Hi everyone,I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which

sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son "Hey buddy! are you really excited?" I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to

provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.is

February 14, 2012

It's like one mum said a while ago uo son has autism..what's thier excuse for being big time bi....Sent from my iPod

Ditto!! They are the uncivilized idiots!! Not you or your son!! Personally, if something like this happened to me and my son, I would feel much better if I confronted the morons. I would look them straight in the eye and ask them why are they staring. They'll usually stop after that......feel better is!!! One foot in front of the other!! To: mb12valtrex Sent: Monday, February 13, 2012 10:56 PM Subject: Re: Why do I have to feel embarassed at the speech therapy office??

Believe me,is, the people doing the staring aren't going home to read books every night. Gauge your critics. ; )

Sent from my Kindle Fire

February 14, 2012

My daughter is like your kid; She is always marching or running around back and

forth and making crazy happy loud noises while everyone stares at her like " what

the hell is wrong with this kid? " The therapists come to our house, so we are

lucky there, but everywhere we go, we make a spectacle of ourselves.

But it dawned on me this past weekend that I finally have the happy kid that I

always wanted. I still can't figure out, with all the love and attention we

showered on her older sister, why she is not a happy person. So, I am feeling

very good about my little one's happy disposition these days.

If my little one is being especially weird, I just tell people she has autism. A

few weeks ago, I took her to Macs Playplace. She pulled all of this

family's jackets off their bench and threw them on the floor, so I told them she

has autism and apologized and put their jackets back on the bench. Okay, she did

it again, so I had to do the whole apologizing and putting their jackets back on

the bench thing again, which was doubly embarrassing.

And then she proceeded to dip her whole hand in a ketchup hill on some other

family's tray. Luckily, the family was not at their table, so in the blink of an

eye, I put her whole hand in my mouth and licked off all the ketchup. Yuck!!!

But then something really nice happened; You know how tall those climbing

structures at Mcs Playplace are? My stubborn little one decided to sit on

a step halfway up and not move at all,

so I stood there with her and kept telling all the other kids to just go past

us.

On a parallel climbing structure, another little kid decided to sit at the

highest place and would not or could not come down. I kept hearing the Grandma

begging the kid to come down, that they needed to leave, but the kid would not

budge. The Grandma sent the older kid to get the little kid, but that was not

successful. And none of the other numerous parents offered to help the Grandma.

After listening to this poor Grandma for some time, I finally grabbed my little

one and brought her down against her protests and told the Grandma, " If you

watch my kid, I'll go up and bring your kid down,

but she has autism, so she won't understand you. " And the Grandma said, " Mine

has autism, too. "

So, I went up and brought her kid down while she chased my hyperactive one

around the place. So, we helped each other out and thanked each other cause we

know what it's like.

February 14, 2012

U go girl and f.... Tell them to f...en Grow up the world is full of f.. Fools. Bet they are the ones who own pharmaceutical company that make the vaccinesSent from my iPod

this makes me so F###in mad! what the F. is wrong with people! I wish i would be there I would politely....er..ok not so politely tell them its rude to F###in stare at people...and maybe karma will come back one day and people will be starin at them while they droolin at the mouth in some nursing home. as you measure others so shall you be measured..

with that said....crap i wish i could B. slap these people. ok...im done. cough.

with that said.....I had a similar experience today...my son doin better but still we have our "moments" and I am very proactive in tellin people right away that he has autism....and I say it in a way that I stare them straight in their eyes when i do it......like my mouth says he has autism....but my eyes say....he has autism I dare you to think something bad of him cuz I will twist your head off if you do..

and I find people respond to that really well..

dont feel bad is...I know you are a woman of faith...God is capable of healing in his time when he feels it is right...trust that when it is the right time for your son he will catch up to where he should be...

I had a faith healer a couple months back work on my son...I swear for a whole day autism disappeared and I felt the power of Gods amazing healing abilitys....then my sons issues came back....and I knew...I knew God gave me that one day to show me he is capable of anything but that their still are lessons I need to learn and my son also in this autism journey...

....one day at a time...one foot at a time...

xo channa

To: mb12valtrex Sent: Monday, February 13, 2012 10:00 PMSubject: Why do I have to feel embarassed at the speech therapy office??

Hi everyone,I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which

sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son "Hey buddy! are you really excited?" I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to

provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.is

February 14, 2012

My favorite line is situations like this....Welcome to the world of autism! Then look away and never give them a second glance.margie in va U go girl and f.... Tell them to f...en Grow up the world is full of f.. Fools. Bet they are the ones who own pharmaceutical company that make the vaccinesSent from my iPod this makes me so F###in mad! what the F. is wrong with people! I wish i would be there I would politely....er..ok not so politely tell them its rude to F###in stare at people...and maybe karma will come back one day and people will be starin at them while they droolin at the mouth in some nursing home. as you measure others so shall you be measured.. with that said....crap i wish i could B. slap these people. ok...im done. cough. with that said.....I had a similar experience today...my son doin better but still we have our "moments" and I am very proactive in tellin people right away that he has autism....and I say it in a way that I stare them straight in their eyes when i do it......like my mouth says he has autism....but my eyes say....he has autism I dare you to think something bad of him cuz I will twist your head off if you do.. and I find people respond to that really well.. dont feel bad is...I know you are a woman of faith...God is capable of healing in his time when he feels it is right...trust that when it is the right time for your son he will catch up to where he should be... I had a faith healer a couple months back work on my son...I swear for a whole day autism disappeared and I felt the power of Gods amazing healing abilitys....then my sons issues came back....and I knew...I knew God gave me that one day to show me he is capable of anything but that their still are lessons I need to learn and my son also in this autism journey... ...one day at a time...one foot at a time... xo channa To: mb12valtrex Sent: Monday, February 13, 2012 10:00 PMSubject: Why do I have to feel embarassed at the speech therapy office?? Hi everyone,I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son "Hey buddy! are you really excited?" I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.is

February 14, 2012

is, I'm in the process of trying to get someone to assess my kids for mito disorders. Our regular pediatricians are of no use to us for that. They don't know enough about whether or not to do a screening or what to screen them for before we're even considered a referral to a mito specialist.

In June, we signed up with the Autism Treatment Network. They're an organization/arm associated with Autism Speaks and, although I don't really agree with a lot of the politics behind Autism Speaks, this was a service that could help us. The ATN involves an autism specialist at Sick Kids Hospital here and they are supportive of biomed, although they do not practice any yet right now because they don't have enough research to back up how they'd systematically diagnose and treat children for the different disorders that cause autism. The route I'm taking now is I called the ATN and spoke to the nurse there that is our contact person. Our involvement with the ATN generally involves me telling this nurse about the biomed we're doing (they are interested in seeing all results of all biomed we do, without any judgement as the agency admits that they don't have enough knowledge about biomed to have an opinion about it -- they just want to learn from it) and we give them urine samples sometimes for their different studies (we've submitted one on creatine already). They take the information and look at it as something they can possibly research later. In return, they give us access to what we need from the mainstream medical community. They can do referrals to specialists. The nurse had referred us to a GI specialist but at our last visit, I told her that we have all our digestive issues fully resolved with various components of the mito cocktail and I asked her if she has seen other kids whose GI symptoms are caused by mito disorders and she said...YES. Yes, that she has patients on the spectrum whose GI issues were resolved and that if I am seeing this, and the kids are able to be on a full and regular diet (except corn and soy) with mito support that, yes, we should see a mito specialist and that we are good candidates to do genetic testing and mito testing in that direction. So, she sent a letter to our autism specialist (the one whose team diagnosed my son and works with the ATN, but I've never even met this autism specialist because she mostly does research and doesn't actually see patients -- we've seen the psychologist and the neurologist on her team). After the GI specialist sent the autism specialist the letter, I also called up the ATN to also get them to follow up with the autism specialists' office -- so that we can see someone on her team and get a referral to a mito specialist. So I'm awaiting back from the ATN to hear from the autism specialists' office to see what they say but we also have the GI specialist now who says that we really need to see a mito specialist if the kids' GI issues are responding positively to the mito cocktail, and more specifically, carnitine. But, yes, mito disorders/dysfunction can cause pretty severe GI issues, which will then make the mito functions worse because of malabsorption -- vicious cycle.

What I want from the mito specialist is to get a better tailored mito cocktail for my kids...more specific ratios about what we need depending on what's wrong with them. I know it's mito but what kind of mito problem, I don't know yet. I think more investigation and details would be helpful.

But, for now, when treating mito, while you're in the process of finding someone to look at your son's mito component, I think it might be a good idea to increase antioxidants. The mito cocktail also involves a b-complex, B1, B2, coq10 and antioxidants. When there is mito dysfunction, I think a lot of our kids can't get rid of their free-radicals and from what I'm seeing now, this can affect language.

But pyruvate being low...I don't know how much the actual OAT numbers indicate. Owens adjusts for creatinine and when she does, sometimes the picture changes a lot after creatinine adjustment. I find it difficult to believe that any of our kids have normal glutathione levels. Or, sometimes, it could be a deficiency in one small thing that seems so insignificant but that's the thing that provides some co-enzyme that makes or breaks all the neurotransmitter pathways.

I've been using both CoQ10 and ubiquinol, trying one then the other and I don't really see a difference with it for my daughter. I might switch coq10s. The ones I have right now I haven't seen any WOWs with.

Getting an appointment with any kind of specialist here is difficult. Does your son have apraxia? Sometimes when they make those " weird noises " -- they are actually singing or trying to talk -- the vocal cords are moving but their mouth isn't because the apraxia is affecting the mouth (and when there are no weird noises, that's sometimes apraxia affecting the vocal cords, too -- apraxia can affect any muscle in the body). Although our apraxia has gotten much much better in the last year, Maia is still quite affected by apraxia. And I see her trying to use proper language structure now, but the sounds come out strange and muddled. Funny thing is that the approximations are grammatically correct now and she can sound out words from sight -- but everything sounds " off " . That's apraxia. And she often makes those funny vocal noises and I think she's upset in the backseat, but really, it's her humming to the music on the radio but she cannot hum to the tune and it sounds like she's vocal stimming. But hey, at least she's aware of it and trying it and wants to do it, so I'm happy about that, even though I mistaken it for vocal stimming sometimes. The apraxia is still in her vocal cords, but not as strong anymore.

Also, are you doing any biotin? Biotin helped us a lot, too. And if you're having trouble with carnitine, but he did well on it, lower the dosage and make sure to give it with a carb load so that's all absorbed. I find this makes a huge difference with my son. I never give him L-carnitine anymore without lots of carbs within 15 minutes. If I missed the window of opportunity, and we have to wait an hour because we were out while he had his carb load, I give him a lot less carnitine. But make sure there's lots of carbs when you give carnitine. My son must have eaten a grilled cheese sandwich with fries or potatoes or something before I give him carnitine...he gets very agitated when I don't do that and to a lesser degree (but it still happens) my daughter is the same with carnitine. With ALCAR, give with lots of fats. Huge huge difference with my kids. I think if you don't give it with the proper carb or fat load, then it doesn't absorb and just hangs around unused and that probably raises something else (probably testosterone, as you said) that causes the aggression.

When my kids act up, I don't bother explaining to people about autism. I don't say anything anymore because well, I don't give a toot about what they think. They don't like it and want to stare...screw 'em. And if they're going to make me say that she has autism, I'm going to make them look like an a-hole about it to everyone. One nurse at a walk-in clinic did that (this was when we weren't doing much biomed) and she asked what's wrong with my daughter and if she always acts like that (she had an ear infection and was vocal stimming and scared of doctors offices) and I announced to the whole room that yes, my daughter has ASD and she doesn't like doctors office AND she's sick...hence why we're even there. She was pretty embarrassed about asking and went to the back to go hide until we left.

Another time (this was about a year ago), we were at another doctors office and Maia was standing on a chair looking out the window. She wasn't particularly acting up. She pulled back the metal blinds and was standing behind this guy while doing that. The man tried to talk to her to tell her that she can't do that and Maia just " didn't hear him " or acknowledge that he was talking to her. He asked me, " She doesn't listen? " I said, " She has autism " . He felt bad and said he was sorry because he really couldn't tell initially (which is a good thing) and didn't know why she seemingly couldn't hear him. If I can tell that people honestly don't know, then I'll tell them. But if people are being bungholes, I don't even waste my breath.

But strangely enough, I *sometimes* find parents of other ASD kids are the most judgmental. It's really weird. Not sure why. I've met a few who were really snotty and awful. Most parents of ASD kids aren't but some that I run into at therapies...holy moley, really really freaking snotty.

Oops, sorry, I just realized I'm blah blah blahing on and on again...sorry for the long post. I'm procrastinating with work again...heh heh...

February 14, 2012

Last year, I used to take my son to a facility for OT. They had speech, OT and PT at one place so the kind of kids used to visit the place were of a wide variety. I did get such stares from some parents, specifically moms as I was one of very very few dads who used to bring their kids to the facility. It made me think really hard, everyone that visits this place has some problem with their kid, so why do these folks use different lens for other kids and/or their parents? Why can't they be fair? Going to that place wasn't my best time.

But later I thought, you know what, F them. I go for my son and don't give a tiny rat's ass what they think or how they look at me. I keep this approach every time now and I am ready to pick up fight with anyone who tries to be a smartass. my son is hyperactive, the other day at the store, he wanted to pull stuff off the shelf so I tied him up on the cart seat, a jackass passing by tells me to let him do whatever he wants to do. I said, are you going to clean up after him because I am not? Plus, its my kid and its my right how I want should teach my child to be socially responsible person. I definitely don't want him to be like you poking nose in other's business. One of my therapist (who has a twin with autism) is right saying, nobody needs to know that your son has autism, it changes the way they look at you, sometimes positive, sometimes negative, mostly negative. And remember, we live in a highly judgemental society.

We were naive last year when the diagnosis came along and told almost every close one and guess what we have not heard from half of them since. Almost everyone in our circle is highly educated and you get such reaction so why care about someone who is not highly educated?

Conclusion - let them do their job and you do yours. Think of best for your kid, not what others think.Noel

Hi everyone,

I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son " Hey buddy! are you really excited? " I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.

is

February 14, 2012

oh alexis, I feel like that everyday and everywhere :in school, in therapy , when we are shopping or ........ I see my son who is 5yo and non verbal way behind all other kids who also have the diagnosis of autism .and guess what ? we have been doing biomed since he was 2 yo with no progress. so I feel your pain Lili To: "mb12valtrex " <mb12valtrex > Sent: Monday, February 13, 2012 10:21 PM Subject: Re: Why do I have to feel embarassed at the speech therapy office??

this makes me so F###in mad! what the F. is wrong with people! I wish i would be there I would politely....er..ok not so politely tell them its rude to F###in stare at people...and maybe karma will come back one day and people will be starin at them while they droolin at the mouth in some nursing home. as you measure others so shall you be measured..

with that said....crap i wish i could B. slap these people. ok...im done. cough.

with that said.....I had a similar experience today...my son doin better but still we have our "moments" and I am very proactive in tellin people right away that he has autism....and I say it in a way that I stare them straight in their eyes when i do it......like my mouth says he has autism....but my eyes say....he has autism I dare you to think something bad of him cuz I will twist your head off if you do..

and I find people respond to that really well..

dont feel bad is...I know you are a woman of faith...God is capable of healing in his time when he feels it is right...trust that when it is the right time for your son he will catch up to where he should be...

I had a faith healer a couple months back work on my son...I swear for a whole day autism disappeared and I felt the power of Gods amazing healing abilitys....then my sons issues came back....and I knew...I knew God gave me that one day to show me he is capable of anything but that their still are lessons I need to learn and my son also in this autism journey...

....one day at a time...one foot at a time...

xo channa

To: mb12valtrex Sent: Monday, February 13, 2012 10:00 PMSubject: Why do I have to feel embarassed at the speech therapy office??

Hi everyone,I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which

sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son "Hey buddy! are you really excited?" I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to

provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.is

February 14, 2012

oh mel this brought tears to my eyes....and made me laugh...love your spirit...licking the whole ketchup off... now that too funny!

To: mb12valtrex Sent: Tuesday, February 14, 2012 3:28 AMSubject: Re: Why do I have to feel embarassed at the speech therapy office??

My daughter is like your kid; She is always marching or running around back and forth and making crazy happy loud noises while everyone stares at her like "what the hell is wrong with this kid?" The therapists come to our house, so we are lucky there, but everywhere we go, we make a spectacle of ourselves. But it dawned on me this past weekend that I finally have the happy kid that I always wanted. I still can't figure out, with all the love and attention we showered on her older sister, why she is not a happy person. So, I am feeling very good about my little one's happy disposition these days. If my little one is being especially weird, I just tell people she has autism. A few weeks ago, I took her to Macs Playplace. She pulled all of this family's jackets off their bench and threw them on the floor, so I told them she has autism and apologized and put their jackets back on the bench. Okay, she did it again, so I had to do the whole

apologizing and putting their jackets back on the bench thing again, which was doubly embarrassing. And then she proceeded to dip her whole hand in a ketchup hill on some other family's tray. Luckily, the family was not at their table, so in the blink of an eye, I put her whole hand in my mouth and licked off all the ketchup. Yuck!!! But then something really nice happened; You know how tall those climbing structures at Mcs Playplace are? My stubborn little one decided to sit on a step halfway up and not move at all,so I stood there with her and kept telling all the other kids to just go past us.On a parallel climbing structure, another little kid decided to sit at the highest place and would not or could not come down. I kept hearing the Grandma begging the kid to come down, that they needed to leave, but the kid would not budge. The Grandma sent the older kid to get the little kid, but that was not successful. And none of the

other numerous parents offered to help the Grandma.After listening to this poor Grandma for some time, I finally grabbed my little one and brought her down against her protests and told the Grandma, "If you watch my kid, I'll go up and bring your kid down,but she has autism, so she won't understand you." And the Grandma said, "Mine has autism, too." So, I went up and brought her kid down while she chased my hyperactive one around the place. So, we helped each other out and thanked each other cause we know what it's like.

February 14, 2012

Hey Channa, thank you. Also, I've been meaning to thank you for the milk

sensitivity remedies you wrote for my older kid. When I grow up, I want to be as

smart as you. Take care.

>

> oh mel this brought tears to my eyes....and made me laugh...love your

spirit...licking the whole ketchup off... now that too funny!

February 14, 2012

ahahhaha you too funny mel...im glad i told you something good.. what was the remedies?

To: mb12valtrex Sent: Tuesday, February 14, 2012 10:51 AMSubject: Re: Why do I have to feel embarassed at the speech therapy office??

Hey Channa, thank you. Also, I've been meaning to thank you for the milk sensitivity remedies you wrote for my older kid. When I grow up, I want to be as smart as you. Take care.>> oh mel this brought tears to my eyes....and made me laugh...love your spirit...licking the whole ketchup off... now that too funny!

February 14, 2012

Hi is,And I thought I was the only one. Until recently we were going to a speech therapy practice with that whole same dynamic going on...waiting room with other autistic kids but my kid always seemed like the lowest-functioning and always drew stares. Even people who saw us week after week stared. Usually when we'd walk in there my son would cover his ears and curl himself into a ball on my lap, head buried in my chest, trying to block out all stimuli. He'd also hum loudly or make some other verbal stim. And kids and adults just stared. I hated waiting there. But, it's the same pretty much everywhere we go. My son is calmer now in public, but at some point during every outing the spirit hits him and he makes some loud crazy noise, flaps his little hands, does a happy dance and has a great time. People stare. Sometimes I stare back, sometimes I say "Hello, can I help you?" in a challenging tone. Once I said to my son loudly, "It's so RUDE when people stare, isn't it? One time my husband took our son to the grocery store and our son had a meltdown. It's happened pretty often, actually. And some guy was staring at the two of them and my husband lost his temper and snapped at the guy, "What are you looking at!"And the guy said sheepishly, "I'm sorry, I don't mean to stare. I have an autistic son too and I was admiring how good you are with your son."So I try to tell myself that maybe everyone isn't trying to be rude when they stare. Maybe they can relate. Although if I see a mother struggling with her screaming kid or with a kid who seems special needs I never stare b/c I know just how she feels. Soraya

Hi everyone,

I am going to bother all of you again with my nonbiomed issues. My son goes to speech therapy once a week. When I look around in the waiting area, most of the kids who come there for speech therapy are mostly verbal. They are either playing video games or games on their phones, or they play with the toys in the waiting area or with each other. Except for one non-verbal boy who is in my son's school class also, every body has more speech and a more appropriate behavior as compared to my son. I usually don't take any improvement that my son has made for granted and thank God everyday for little gains but today my son was unusually happy and very well behaved when he got home from school. He waited patiently while I got his baby sister ready and then we went to speech at a different schedule than usual. He was still very happy and once we were in the waiting area, he got very excited and started making very loud happy sounds which sounded like na na na na. For some reason, every parent in the waiting area started staring at my son and me as if we were aliens and I had to kinda give explanation and asked my son "Hey buddy! are you really excited?" I noticed that parents don't stare at a child who has obvious physical abnormalities(not that they should anyways) but look at my son like he is some wierd kid who is stimming and trying to mouth objects. What bothers me is that this speech therapy place should be at least one place where I should not be facing this and people should show some more respect. The staff is excellent but most of the parents are not friendly at all. Every time I go there, I come home so much sadness. The therapist is excellent and I don't want to take him anywhere else but why is my son way behind most of the kids that come for therapy (and some of them do have the ASD diagnosis). I took him to another social skills class last week and there they will have to provide him one on one therapist in a group setting to get him to engage with others while the others in the group are also on the spectrum and not on biomed and still have better social skills than my son. Oh I guess, I am getting depressed today and have a lot of negative thoughts. Just wanted to share with other parents and see if any of you have a similar experience at the therapy offices.

is

February 14, 2012

This (below)! My son is recovered to a point that the average person at the

park or an office would not know that he has autism (if he even still actually

does.) So sometimes I am out a park and I see a child that seems to have autism

or at least has some characteristics. I sometimes catch myself looking a little

too much and here's why - I am mentally struggling with whether or not to say

something to the parent. The biggest problem I have is I don't know if the

other parent wants to be approached. I never know if the child has an official

diagnosis or not. I also don't know if the parent really wants to engage about

autism with a parent whose child doesn't look affected. So I will sit and wait

for the opportunity to open a conversation, but that might mean I keep looking

at them too often. Haha. I never have a judgemental expression, I try to keep

a pleasant, open demeanor. Sometimes I sit at the park and can't believe how

many neurologically affected children I see. And of course I have to add one

more because my son is there, too. It is ridiculous that I should be able to

discern four or five children other than my own who are affected on an average

day at the park.

Anyway, I definitely try not to obviously look when a child is having a meltdown

or something. I do look from the corner of my eye because I am watching to see

if there is an opportunity to help the parent. Generally I don't offer to help

unless obvious help is needed because although I would've appreciated the kind

thought, when my son was at his worst, I would NOT have wanted a stranger to

approach us! That would have made him 10 times worse!

I try to assume the best about people. If they really are being crummy and

staring in a judgemental way, well they aren't worth our time, are they??

And you know, I have actually heard some people with limitations complain about

the opposite problem. They say that people are trying so hard not to stare,

that they end up feeling invisible because nobody ever looks at them. So I

don't avoid looking at other people/children, but I try to look at them in a

pleasant way so they feel good about my interaction. Know what I mean?

But I am also one of those people who thinks it is weird that a bunch of people

can be in a place together for an extended period of time and never acknowledge

the existence of anyone else around them. I don't try to annoy people by

talking to them unnecessarily, but I do look at them and give a smile. It is

funny how many people respond to that and I end up having interesting

conversations, especially with older people who seem lonelier.

is, and everyone else who has felt those searing stares, just remember that

you and God know the real story. You and your child are doing the best you can

in the situation and it REALLY doesn't matter what anyone else thinks. And

remember too that not everyone is necessarily thinking something bad when they

are looking.

Blessings,

Cathy

>And some guy was staring at the two of them and my husband lost his temper and

snapped at the guy, " What are you looking at! "

> And the guy said sheepishly, " I'm sorry, I don't mean to stare. I have an

autistic son too and I was admiring how good you are with your son. "

>

> So I try to tell myself that maybe everyone isn't trying to be rude when they

stare. Maybe they can relate. Although if I see a mother struggling with her

screaming kid or with a kid who seems special needs I never stare b/c I know

just how she feels.

>

> Soraya

>

February 14, 2012

Oh Lili,

I wish we could get together and share our experiences. Sometimes even with

people around me, I feel so lonely, sad and exhausted. But I still have hope and

I know that you havn't lost hope yet either and together we will keep fighting

for our kids. Take care.

is

>

> oh alexis,

> Â

> I feel like that everyday and Â everywhere :in school, in therapy , when we

are shopping or ........ I see my son who is 5yo and non verbal way behind all

other kids who also have the diagnosis of autism .and guess what ? we have been

doing biomed since he was 2 yo with no progress. so I feel your pain

> Â

> Lili

> Â

>

> ________________________________

>

> To: " mb12valtrex " <mb12valtrex >

> Sent: Monday, February 13, 2012 10:21 PM

> Subject: Re: Why do I have to feel embarassed at the speech

therapy office??

>

> Â

>

> Â this makes me so F###in mad! what the F. is wrongÂ with people!Â I wish i

would be there I would politely....er..ok not so politely tell them its rude to

F###in stare at people...and maybe karma will come back one day and people will

be starin at them while they droolin at the mouth in some nursing home.Â as you

measure others so shall you be measured..

> with that said....crap i wish i could B. slap these people. ok...im done.

cough.

> with that said.....I had a similar experience today...my son doin better but

still we have our " moments " and I am very proactive in tellin people right away

that he has autism....and I say it in a way that I stare them straight in their

eyes when i do it......like my mouth says he has autism....but my eyes say....he

has autism I dare you to think something bad of him cuz I will twist your head

off if you do..

> and I find people respond to that really well..

> dont feel bad is...I know you are a woman of faith...GodÂ is capable of

healing in his time when he feels it is right...trust that when it is the right

time for your son he will catch up to where he should be...

> I had a faith healer a couple months back work on my son...I swear for a whole

day autism disappeared and I felt the power of Gods amazing healing

abilitys....then my sons issues came back....and I knew...I knew God gave me

that one day to show me he is capable of anything but that their still are

lessons I need to learn and my son also in this autism journey...

> ...one day at a time...one foot at a time...

> xo channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Monday, February 13, 2012 10:00 PM

> Subject: Why do I have to feel embarassed at the speech therapy

office??

>

> Â

> Hi everyone,

> I am going to bother all of you again with my nonbiomed issues. My son goes to