ÈÝìá: Re: CAN YOU PLS GIVE ME SOME ADVICE

[Guest guest]

Hi ,

Thanks for your concern. My child is not deaf, his hearing is fine.Doctors

told me that at the time that he had the infection with pseudomonas aerobinosa

and was hospitalised for treatment, and the ones that followed he was probably

not hearing very well.

About the sign language,do you think we should keep it or switch to pecs?

The therapist who does the oral motor with my son says that we used it in a

wrong way and we must start over, but in no way do pecs because signs are on a

higher level than pecs.

I am confused since I am thinking that with pecs more people will understand

what he wants to say ,because when he was using signs no-one but me knew the

signs.Plus they tell me that if and when he speaks he is not going to speak

clear enough for others to understand ,so he needs an alternative way to

communicate.The one therapist suggested the talking machine, but the other

therapist said it makes children lazy.

This happens all the time.One therapist say one thing and the other says the

exact opposite and I don't know what to decide.and this goes for all the doctors

who saw my son so far.

Last year I found a therapist who did oral motor excersises once a week with

my son,and now I found another therapist who can do 4 therapies per week.

The past years I actually went to every single speech therapist in my area and

no-one would take us cause they didn't agree with the signs.

So do we keep them or we don't keep them, that is the question.

My son is also ADHD and sometimes you can't get him focus on anything.

Lately I am thinking on trying some medication again to see if it helps him

get focused .I was told to try GABA ,I bought it but I am not using it yet.

Here the hospitals don't have speech therapy.And even if there was we can't

get anything for free cause only the ones with very low salaries get free

medical coverage.All the money I had to pay from my pocket .I travelled to

Greece 3 times and stayed there for three months(expenses, school,stay),I

travelled to the UK for evaluation, and 3 times to Turkey and stayed for 2

months did the HBOT,plus for a year the telephone consultations with the DAN in

the US (expensive) and the supplements every month around $400-500.The special

diet products I get from abroad. The therapists who worked with my son all out

of my pocket.

I've been thinking of stopping everything but I don't know what to do with

the excess Lead levels that my son has.So I guess I must continue at least until

it drops.

The supplements I give are:DMSA chelator to get rid of the lead,cystein and

glutathione to support the liver,magnesium,selenium,calcium,zinc,vit c,DHA

junior,CLO,probiotics,OLE,

He is still on pre-school and he doesn't qualify to be in primary school .He

just started making lines on paper .

I'll try and get another evaluation,for what is worth ,this child is in the

autism special unit for 3 years and this year even I can see that this had an

impact on him.All this special education with no speech therapy let us

nowhere.The teacher says he learns fast ,she only needs to show him smth

once.That is receptivly,expressively they just want him to repeat the words and

he only says what he can make.On other aspects he is not doing well since there

is bad co-ordination,poor motor skills ,I think it's a global apraxia and that

is why people say autistic ,but the difference is that he wants to do things, he

wants to interact(he does in his own way),he wants to speak,if you don't look at

him he will turn your head with his hands to make you look at him.

Anyway I am still standing,and for as long as i am I will keep trying to find

the solution to this mix up.

Thanks again

Antonitsa

kiddietalk <kiddietalk@...> Ýãñáøå:

Hi Antonitsa,

Did you read The Late Talker?

My heart goes out to you. If the following message appears a bit

strong it is based on the direction of this group recently since you

say you have been a member here for a year and your poor child is

nonverbal at almost 7 years old and your family has spent way more money

than most of us -150 thousand in 4 years on alternatives and

misinformation and it appears missed out on all the proven

traditionals and the basics. If you are reading this message and

want to help a new member and help this group become more rounded

this is the perfect family for us to reach out and help as a group.

Let's see what we can do to help this mother and her son. Please,

let's use this message as a wake up call to all of us that have

children that are verbal and that are doing well that someone was

there to help us in the early days with basic and proven information -

and that it appears nobody was there for this unfortunate family.

And Antonitsa I want you to keep us up to date as much as possible on

any changes to your son. I want to see if we can now get your son

the help he so desperately needs.

There is some scientific backing that sign language triggers the same

areas of the brain as speech -however the jury is out whether

advanced vs. simple sign language is appropriate for all with

communication impairments and I know none who would suggest that sign

language alone is the only therapy needed by anyone but a child that

is hearing impaired or deaf who does not have an underlying speech

impairment -well none outside of your story. Is your child deaf?

There are positive reasons for sign with an apraxic child don't get

me wrong -but not instead of speech therapy! And if your child does

have a hearing impairment there is the oral based school of thought

that one can learn sign at any age -but if a deaf child isn't verbal

by the age of 5 they probably never will be verbal. In the oral deaf

world -sign language is understood but not encouraged.

I know there are some Dan professionals in this group that are

responsible and very caring people. But being Dan is unregulated and

just about anyone can be a Dan if they attend a conference or

something be very careful about this unless you are at least already

knowledgeable about the basics and have the extra money and time many

of us don't need to spend. Also being that a Dan person can be

anyone from a social worker who is not an MD or PhD (so shouldn't be

called a " doctor " ) to a respected medical doctor (and then can be

called a Dan doctor) there are no set protocols- I have no idea what

it means. I do know that at times in this group the passion for Dan

borders on cultish. Just because you believe in a therapy or method

doesn't mean you like every aspect of it and jump on anyone who

questions any aspect of it. Not saying parts aren't credible-but may

not be necessary for most.

I do know that I had two children that were in therapy almost daily -

one with very severe injuries from birth trauma and one apraxic -and

we did do both traditional and alternative and we spent no where near

the amount of money you spent in 4 years! 150 thousand dollars? How

does your medical care work where you live? What did the majority of

that money go towards?!!! Was anything covered or is it all out of

pocket? Are there other children like your son that live around you

for you to start a support group? I and others would help you. Are

there professionals in this group that can reach out to help

Antonitsa and her son- please answer her here or private.

Antonitsa as I always say - if your child isn't progressing in a few

months examine therapy, therapist, diagnosis again. If a

professional is a good one and they believe they are not making

headway with a child they will refer that child to another

professional -they won't just keep going and going and going and

sucking you and your family dry of money!

And please do let those of us that don't know what type of

supplements are you giving your child? I know the 'basic' fish oil

formula that works for most and it's not high DHA and it's not cod

liver oil it's and omega 3/6 formula -either proEFA, EyeQ or Efalex.

if you are going to use Coromega you can add a bit of primrose or

borage seed oil to make it an omega 3/6. If you are giving your

child the right formula (proEFA, EyeQ or Efalex) and you add cod

liver oil or any other DHA (as Holly's DAN had her do and then her child

stopped progressing) that changes the formula and raises the Omega

3 -but the wrong omega 3 -it raises the DHA not EPA and you probably will

stop seeing progression just like others in this group that follow

this false advice. As far as some of the unknown supplements -please

list them for us so we can as a group know what they are.

If I were in a situation that I had that amount of money to spend on

alternative therapies in four years I'd first make sure of the

following:

1. My child had an appropriate diagnosis from a respected

neurodevelopmental medical doctor like Dr. Marilyn Agin -my co author

of The Late Talker. At her office I know she works with speech

therapists as well and the evaluation is intensive. Her contact info

Marilyn Agin, MD

79 Laight Street #1A

New York, NY 10013

212-274-9180 (O)

212-219-3688 (F)

2. I would make sure that my child received daily appropriate speech

therapy and occupational therapy too. If needed I would also look at

physical therapy. There are things to look for in a good therapist.

3. Being your child is profound impaired at this point in regards to

his expressive ability -do you have an augmentative device for him?

If not he needs one today.

4. I'd make sure that my son was getting a private tutor to either

bring him up to speed or make sure he stays there based on the fact

he is nonverbal. (what grade is your child in now and on what level

academically -what type of placement) If needed I'd pay for an

advocate or special ed attorney -but also an appointment with someone

like Dr. Agin could help secure proper therapy and placement in the

US -not sure how it works in your part of the world.

4. Yes continue some of the alternatives that you believe help -but

I'd stop all the expensive supplements and treatments and fire every

single professional that is working with your son and start over.

Please again continue to keep us up to speed on what is going on.

Please don't hesitate to ask us any question no matter how silly you

believe it to be. I so wish I could give both you and your son a hug

right now and say I'm so sorry. Because of the direction of this

group part of me feels responsible. I won't censor it -but I'm again

pleading with everyone to help me keep this group rounded so that

situations like this don't happen again. That means everyone -not

just one view.

We are here for you!

=====