Re: Any hopes for speech?-long

January 22, 2011

Thanks for sharing â€™s story.Â What an inspiration it is for all those who are struggling.Â I do have a question, though.Â What is AIT? Anne M., BSN, MSN/IH, RNmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of CurtinSent: Saturday, January 22, 2011 5:56 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Any hopes for speech?-long I think we take speech for granted. We have no idea what it would be like to juggle 5 flaming balls, hop on one foot, while music is cranked up and keep our thoughts in our head enough to carry on a conversation. Our kids do that every day, even the nearly recovered ones. was far more in tune with the sounds of cars and trucks going by our house than human speech. When cars hummed, it was pleasant. When someone opened their mouth, it was excruciating! It was only after getting B6 and magnesium that he could talk at all. He needed dmae to keep the thoughts from bouncing aimlessly around in his head. It took sitting down with and not moving, then slowly joining in with him on what he was doing to reach . The more we did that, the more we understood each other. It took a year and a half of working on his biochemistry and sensory issues just to get him " grounded " in his physical body and home environment. That was when speech started to come. It came in fits and starts, and it was far more consistent at home than in other environments. Sometimes it sounded like nonsense, but if you listened closely, Mike would be relaying a whole day's events,in sequential order, as he saw them in his head. Only after doing AIT at age 6 did voices become anywhere near tolerable to Mike. That included his own voice, by the way. At that point, he was the most vulnerable, because he was stuck between being able to retreat when things were painful, and wanting to be " out here " with the rest of us. Being " out here " was exhausting. The very first thing that was always compromised every time he was sick or exhausted was speech. That is true even today, at age 24, when Crohn's Disease, not autism, is his main medical issue. Following AIT, Mike found the sensory overload of school less draining. It was more tolerable, but he was still far less communicative at school than at home. As for talking about what went on at school, he didn't. You really didn't know much about what happened day-to-day, unless something that happened at home triggered a memory that prompted him to talk about it. It wasn't until had a regression at age 13, and he was treated for a major infection, brain inflammation, and low immune globulins that he really started to communicate with people in a more natural way. That is when his speech " normalized. " Speech is still the first thing that gets compromised when Mike is sick. He has a medical directive that says that when he is admitted to the hospital I will speak for him, but only when he is too exhausted or medicated to make his wishes known. When he starts negotiating with Drs about his treatment, it is time for me to get out of his way. He and his fiancÃ©e talk non-stop on the phone and the computer mic. When he starts typing messages to her in IMs and not talking, he needs thuja and thiamine. Works every time =) As for the " window of opportunity " thing and " expert advice, " I was told when Mike was 21/2 that " I would be fortunate if Mike was able to go to the bathroom and zip his pants as an adult. " This came from a PH D psychologist at the preschool he was attending at the time. By age 3 1/2, his " functional IQ " was 70. At age 13, with undiagnosed pneumonia and raging brain inflammation, it was 120. If someone had told me when Mike was 12 that by age 15 he would be a real conversationalist, and that by age 17 he would be doing public speaking, I never would have believed it. Talk to your child as though he understands everything. Look for times when he is trying to communicate and encourage more of it. Find the things he enjoys and do them with him. Help him to find a purpose for communicating, and a way to communicate, whether he can talk or not. If an iPOD with speakers, or IM services on a computer open up communication for your son, use them. Once he realizes that you are reaching out to him, he will reach back. Sometimes just being able to communicate helps a child find his " inner voice, " which can be a bridge to speaking. I hope you find the things that work for you.HugsJeanCan I be blunt? This " window " doctors and some support groups have " advertised " is PURE bullshit! I don't believe it and I never will. I am with Jeannette and . Just believe Krassi! See your son communicating, picture it in your mind...picture him healthy and happy. Just keep the viRuut...if you read this post could you PLEASE share your story with the group so the moms can get some inspiration. Hugs,Tami Why do these drs feel the need to make such stupid comment? I have heard of kids starting to talk at age 16. They dont understand autism so how can they know if they will talk or not? You are doing all the right things. just keep going. I have heard that high dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid of some lead. There is a correlation between lead and apraxia. Dont worry about the future, just keep going. you never know which thing is going to help. Hello everybody,This is probably going to be a long post, but I really need to share my fears and thoughts and hopefully get your opinion and experience.Few days ago my son got evaluated from developmental pediatrician and of course found him to be autistic. We already knew that with my husband, so nothing shocking, although 2 years ago when we went to developmental pediatrician assessment they found that my son is not autistic but with sensory disintegration disord __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com

January 22, 2011

Auditory Integration TherapyCan I be blunt? This "window" doctors and some support groups have "advertised" is PURE bullshit! I don't believe it and I never will. I am with Jeannette and . Just believe Krassi! See your son communicating, picture it in your mind...picture him healthy and happy. Just keep the viRuut...if you read this post could you PLEASE share your story with the group so the moms can get some inspiration. Hugs,Tami Why do these drs feel the need to make such stupid comment? I have heard of kids starting to talk at age 16. They dont

understand autism so how can they know if they will talk or not? You are doing all the right things. just keep going. I have heard that high dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid of some lead. There is a correlation between lead and apraxia. Dont worry about the future, just keep going. you never know which thing is going to help. Hello everybody,This is probably going to be a long post, but I really need to share my fears and thoughts and hopefully get your opinion and experience.Few days ago my son got evaluated from developmental pediatrician and of course found him to be autistic. We already knew that with my husband, so nothing shocking, although 2 years ago when we went to developmental pediatrician assessment they found that my son is not autistic but with sensory disintegration disord __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5808 (20110122) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com

January 22, 2011

I just wanted to say - thank you to all for sharing your stories, inspiration

and advices! We printed with my husband all posts we got from you and I cannot

express how much this is helping us. It is so good to know that there are so

many people understanding what we are going through and we find so many good

advices ... As for talking with my son on his language and getting somewhere

between - this is actually very much what the SonRise program we do in home-

imitating/joining the child, showing him that you love him and accept him the

way he is and when you get the " green light " in other words eye contact, showing

some interest in you, then you help him join you, play with you or interact the

way you want. I often talk to my son in his language and try to make the same

sounds he does (I do this only in home because I can imagine the looks I will

get if I do this outside our home . When I do this I do it very sincere and I

feel like we communicate on different level... I get the longest and the most

understanding eye contact from him when I do this. Like he shows me " now you are

on my team " . Moments like that are priceless for me. I feel really connected

with him since I do this. The good thing is that he tries much more often to

communicate with us since we do this program. However I see that he is

struggling, he is trying to say something, looks at me and it just the words

cannot come. Sometimes he gets frustrated that I don't understand what he says.

I hope soon with all the help we get that this moment will come..

Krassi

>

> Can I be blunt?Â Â Â This " window " doctors and some support groups have

" advertised " is PURE bullshit!Â Â I don't believe it and I never will.Â I am

with Jeannette and .Â Just believe Krassi!Â See your son communicating,

picture it in your mind...picture him healthy and happy.Â Just keep the

viRuut...if you read this post could you PLEASE share your story with the group

so the moms can get some inspiration.Â Hugs,TamiÂ In a message dated 1/21/2011

2:36:04 P.M. Pacific Standard Time,Â klwadler@...Â writes: Â Why do these drs

feel the need to make such stupid comment? I have heard of kids starting to talk

at age 16. They dont understand autism so how can they know if they will talk or

not? You are doing all the right things. just keep going. I have heard that high

dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid

of some lead. There is a correlation between lead and apraxia. Dont worry about

the future, just keep

> going. you never know which thing is going to help.In a message dated

1/21/2011 4:18:58 P.M. Eastern Standard Time,Â krassi_G_2000@...Â writes:Â Hello

everybody,

> This is probably going to be a long post, but I really need to share my fears

and thoughts and hopefully get your opinion and experience.

> Few days ago my son got evaluated from developmental pediatrician and of

course found him to be autistic. We already knew that with my husband, so

nothing shocking, although 2 years ago when we went to developmental

pediatrician assessment they found that my son is not autistic but with sensory

disintegration disord Â

>

> __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5808 (20110122) __________

>

> The message was checked by ESET NOD32 Antivirus.

>

> http://www.eset.com Â __________ Information from ESET NOD32 Antivirus,

version of virus signature database 5808 (20110122) __________ Â The message was

checked by ESET NOD32 Antivirus. Â http://www.eset.com

>

> __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5808 (20110122) __________

>

> The message was checked by ESET NOD32 Antivirus.

>

> http://www.eset.com

>

January 22, 2011

This reminds me of when my youngest started talking. He would say lines off of

Spongebob. So, I would be Sandy and role play. It was lots of fun. You could

see the excitement and joy in his face when I did.

Love and prayers,

Heidi N

" I often talk to my son in his language and try to make the same

sounds he does (I do this only in home because I can imagine the looks I will

get if I do this outside our home "

January 22, 2011

I have a non-verbal son with autism/apraxia. He will be 10 years old in about a

week. We got our son an AAC device (Vantage) when he was about 5 years old. It

has been extremely helpful in reducing his frustration level. It was also very

helpful to have a trained speech therapist help him with the device. He now

flies through it and spells items. He still has a lot to learn on it, but it

was worth it. Our children need to communicate things. They get very upset

when they don't think anyone doesn't understand them. Prior to that, we used

PECS.

We have done many things also. Diets, supplements, NAET, chelation, HBOT, etc.

We have had moments of " language. " We were excited and thought we were on the

right track. As we continued using other approaches, he developed a reaction,

which has resulted in a tic. Separately given the items were fine. When taken

during the same day, the reaction was horrible. We had to stop everything. Now

we are starting over slowly. Things that had worked before now aren't. It's

very strange, but we also discovered he had PANDAS and HHV-6. I highly

suspected Lyme (because he shows signs of Bells Palsy), but only tested positive

for one band through the hospital lab. We plan on retesting him through IGENIX

soon. We are currently starting another round of HBOT again. This is the only

thing that had reduced his strep titers (PANDAS) significantly for him. It also

has increased his " awareness " for things around him. I know you understand what

I am saying. Our son still squeals and makes his own unique sounds. Other

times we can get words out of him, but not too many (less than 10). I strongly

feel that we are going to see some results in the speech area soon with this

round of HBOT. We shall see.

I hope that our story doesn't cause you to be disheartened. It is not my

intention. As you said, what works for one may or may not work for another.

It's just our story. We haven't given up on hope and we certainly do love him

more than words can ever say. We know that our answer is out there. The

missing piece of our puzzle. After many hours of research, I finally feel I'm

on the right track to isolating the things that " cause " his lack of speech. Now

it's a matter of finding the right treatment/(s) and in the right order. The

best of luck to you and your family. Hang in there. You are on the right

track.

> >

> > Can I be blunt?Â Â Â This " window " doctors and some support groups have

" advertised " is PURE bullshit!Â Â I don't believe it and I never will.Â I am

with Jeannette and .Â Just believe Krassi!Â See your son communicating,

picture it in your mind...picture him healthy and happy.Â Just keep the

viRuut...if you read this post could you PLEASE share your story with the group

so the moms can get some inspiration.Â Hugs,TamiÂ In a message dated 1/21/2011

2:36:04 P.M. Pacific Standard Time,Â klwadler@Â writes: Â Why do these drs feel

the need to make such stupid comment? I have heard of kids starting to talk at

age 16. They dont understand autism so how can they know if they will talk or

not? You are doing all the right things. just keep going. I have heard that high

dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid

of some lead. There is a correlation between lead and apraxia. Dont worry about

the future, just keep

> > going. you never know which thing is going to help.In a message dated

1/21/2011 4:18:58 P.M. Eastern Standard Time,Â krassi_G_2000@Â writes:Â Hello

everybody,

> > This is probably going to be a long post, but I really need to share my

fears and thoughts and hopefully get your opinion and experience.

> > Few days ago my son got evaluated from developmental pediatrician and of

course found him to be autistic. We already knew that with my husband, so

nothing shocking, although 2 years ago when we went to developmental

pediatrician assessment they found that my son is not autistic but with sensory

disintegration disord Â

> >

> > __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5808 (20110122) __________

> >

> > The message was checked by ESET NOD32 Antivirus.

> >

> > http://www.eset.com Â __________ Information from ESET NOD32 Antivirus,

version of virus signature database 5808 (20110122) __________ Â The message was

checked by ESET NOD32 Antivirus. Â http://www.eset.com

> >

> > __________ Information from ESET NOD32 Antivirus, version of virus signature

database 5808 (20110122) __________

> >

> > The message was checked by ESET NOD32 Antivirus.

> >

> > http://www.eset.com

> >

>

January 22, 2011

,

Thank you for sharing your story. Sometimes it can be a comfort just to know

that there are other families in the same boat who are also still trying

everything they can to go to where they want to be.

Limin

> I have a non-verbal son with autism/apraxia. He will be 10 years old in about

a week. We got our son an AAC device (Vantage) when he was about 5 years old.

It has been extremely helpful in reducing his frustration level. It was also

very helpful to have a trained speech therapist help him with the device. He

now flies through it and spells items. He still has a lot to learn on it, but

it was worth it. Our children need to communicate things. They get very upset

when they don't think anyone doesn't understand them. Prior to that, we used

PECS.

>

> We have done many things also. Diets, supplements, NAET, chelation, HBOT,

etc. We have had moments of " language. " We were excited and thought we were on

the right track. As we continued using other approaches, he developed a

reaction, which has resulted in a tic. Separately given the items were fine.

When taken during the same day, the reaction was horrible. We had to stop

everything. Now we are starting over slowly. Things that had worked before now

aren't. It's very strange, but we also discovered he had PANDAS and HHV-6. I

highly suspected Lyme (because he shows signs of Bells Palsy), but only tested

positive for one band through the hospital lab. We plan on retesting him

through IGENIX soon. We are currently starting another round of HBOT again.

This is the only thing that had reduced his strep titers (PANDAS) significantly

for him. It also has increased his " awareness " for things around him. I know

you understand what I am saying. Our son still squeals and makes his own unique

sounds. Other times we can get words out of him, but not too many (less than

10). I strongly feel that we are going to see some results in the speech area

soon with this round of HBOT. We shall see.

>

> I hope that our story doesn't cause you to be disheartened. It is not my

intention. As you said, what works for one may or may not work for another.

It's just our story. We haven't given up on hope and we certainly do love him

more than words can ever say. We know that our answer is out there. The

missing piece of our puzzle. After many hours of research, I finally feel I'm

on the right track to isolating the things that " cause " his lack of speech. Now

it's a matter of finding the right treatment/(s) and in the right order. The

best of luck to you and your family. Hang in there. You are on the right

track.

>

>>>

>>> Can I be blunt?Â Â Â This " window " doctors and some support groups have