Update on from Eileen - Long

March 11, 2008

Hello all,

Its 4.45 pm and I'm having one of those can't sleep nights so thought

now I've got the chance I'd update you on how Jay's doing.

First up what I always say - if it hadn't been for Treating Autism, I

would not have my boy back with me making progress. And I can say to

all you newbies out there, that I never DREAMED I'd get the boy I've

got now! Its been long, and slow, and frustrating, and worrying, but

absolutely 100% worth it. And thanks to Mandi, and Sharon in

Guildford who told me about the wider scope of biomed on the phone

whilst I sat there totally gobsmacked. And Rhona. Congratulations on

getting communicative intent from Sam Mandi. Its a wonderful step.

I haven't posted for a while - been trying to hold it all together.

Really wanted to come to the P2P but impossible as I work on a

Saturday and problematic if I take the day off as I teach 8 classes

back to back.

About Jay - he's now 5 and a half. Jay was a classic hyperactive,

non-speaking, autistic kid with little eye contact. Started GF/CF

diet at 2 and a half, enzymes and yeast protocol at 3, added in Super

Nuthera capsules and extra B6 a little later, put in B12 injections

and Folinic (still doing this, got tons of language it was an

absolute miracle) gut healing took ages but we got there in the end,

have been doing Chelation (Cutler Frequent dose) for about 7 months.

Recently upped his B6 and magnesium and he settled more and had less

sensory spells. Having read recent posts going to try VSL3 and Lara's

suggestion (Choline).

Gains on Chelation (after a set-back adding in ALA too early) -

amazing! Unprompted social language ( " Wait for me " / " I Like that

Story " / " Want one of these?) More awareness and lots of language about

time - grasps tomorrow, today. Much less stimming now, playing games

on computer and playstation appropriately more and more. And playing

on his own - nicely, lots. Still lining up though. Got to deal with

that one. Gently and respectfully sooner or later.

For Jay I've always seen great physical and co-ordination gains from

biomed. The drooling he had from a baby disappeared at 3.5 when we

started really piling in the supplements. Since chelation he has

learned how to do a handstand, hop, and imitates physically much more

spontaneously. He had no balance at all previously. He can swim

without any help. Prior to biomed, he never, ever, imitated at all.

Now he does when playing games with us.

This kind of thing happens a lot since chelation - a lot more social

awareness. My friend's phone rang, he heard it, found it, and gave it

to her unprompted. Has really got independent program his school run

in the classroom. Much more interest in art. Tonight, right off the

bat he asked for a book. Our conversation (Yes!) went like this -

" Can I have my spaceman book?

Do you mean the one in Mummy's car?

No, its upstairs in the white box.

Oh. Do you mean " Man on the Moon? "

Yes.

So what shall I do?

Lets go and get it Mummy.

We went upstairs and I got it.

I said:

Right, lets sit on the bed and I'll read it to you.

Jay - No. Its my turn.

(needless to say I gave it to him straight away!)

Also he has asked WHY a lot since chelation, e.g. the first time, at

soft play:

me - You can't go in that room .

J - Why?

me (stunned) - Its for Birthday parties. You can only go in it if

its your birthday or a party.

I just didn't think He'd ever ask me Why. The big mistake I make

with Jay is I expect things before he's developmentally ready. The VB

hallowed path is teach How first, then Why. He wasn't getting How

because he still has sequencing problems and How requires a number of

steps. He can answer two step " how " s. Anyway I backed off and Why

came of its own accord.

I waited YEARS and agonised watching mums with their toddlers who

would take a tumble and run to their mums for comfort. never

did. On Mother's day he ran up to me crying, threw his arms around

me and said " I banged my head " . You can keep your choccies and

flowers - that's what I wanted!

Also - this one - treasured, lying on the bed.

Mummy?

Yes?

I do love you Mummy.

(Never going to forget that as long as I live!)

Now, there is still a lot to be done with Jay. He still has attention

issues and sensory spells which I find hard. He still struggles

with " Hello " to some people. This was a puzzle to me till I found

that it is top of the ABLLS in terms of a skill because it is a mand

that a lot of kids with autism don't find reinforcing. There's

nothing in it for them.

I have been plugging away at the reading for a long time but he is

coming on. Incidentally I tried all the traditional routes - Janet

and , Jolly Phonics - but what works for us is Englemann's " Teach

your Child to read in 100 easy lessons " . I adapted it for Jay and

made flashcards and handwriting supports. I can email these to

anyone who gets the book. They're useless otherwise. This book

gives you step by step lessons and tells you EXACTLY what to do. It

costs under a tenner in new and used from Amazon and for those of you

who aren't aware, Englemann wrote " Language for Learning " which

costs an arm and a leg from the states (any one doing an ABA program

funded should have a go at getting the 2 grand for it. Its top

notch). However before you start you need pre-requisites - the child

needs to be able to differentiate between " Say it fast " and " Say it

slow " . At school he is learning Edmark reading program, which is

great but is at bit sight-word oriented. I want him to learn

phonetically as there is a limit to how many sight words the brain

can take - believe its 700. So many people say autistic children

can't learn to read phonetically (B*!!cks)

I am convinced that's Jay's clever enough to work out reading as

another route of communication so its a priority right now. Since

chelation he is also much more interested in art and will draw a

picture with me.

I was interested in the thread about Son-Rise and Floortime. 's

climbing though a lot of the ABLLS now and I've never believed that

VB is the total and only answer. I think it is absolutely a must-do,

but more and more, intensive interaction of the Floortime variety is

a partner therapy for us and we are going to see Greenspan at his

clinic in Washington. What I saw a lot with Son-Rise (several

friends who have done it) are sparkling, social, beautiful and

spirited children, with lovely and natural eye-contact, but their

language skills are woefully lacking. This however is in no way a

criticism of Son-Rise, which was a pioneering therapy and should be

respected as such. It came before Floortime with which it shares many

similarities. I think it is probably down to individual profile of

the child, resources available, and the strengths and talent mix of

those involved.

I think Floortime is a hard port of call, on its own, as a first line

response to a toddler with autism - VB makes sense to get some

communication then intensive social interaction becomes somewhat

easier. I love the fact though that Floortime acknowledges the

sensory battles our children fight. And at the end of the day - the

truth most mums know - probably all therapies that pull our children

into the world are going to work well - its a question of just keep

talking and interacting. The bloody rough bit. Splinter skills?

OK, you try teaching them to our kids, local education authorities

because most of the time many of your schools can't even deliver

those!!! PS The floortime DVDs are GREAT so are those by Establishing

Operations.

Just my two cents and probably highly contentious!

Right sorry to go on, hope this helps somebody somewhere - thanks

everyone who's had time to read this - I wish you all well - if you

want to email I'm at Eileen.Chiverton@.... Continuing to

follow your battles with interest, I always read the digests.

Lots of Love,

Respect! Eileen, and xxxxx

March 12, 2008

Eileen, I am up also!

That is a wonderful story. So many kids reporting a good degree of

success that it just boggles my mind.

Have you done a baseline and ATEC score? I think everyone should be

doing this and showing it to their docs.

Our last line of therapy has been neurofeedback and the results have

been amazing. The first assessment last year showed impairment

throughout the brain, primarily diffuse delta waves. This was quite

depressing to take in...poor kid....twenty sessions later and a

follow-up session and the brain looked totally different with the more

appropriate brainwaves. To be fair, I did introduce chromium which may

have regulated her sugar levels which in turn may have improved these

waves. I have some studies supporting this effect.

But to get back to the here and now, my 14 year old read an entire book

on the week-end and jumped into another book the next day. This is a

child who at aged 4, was very delayed in speech, hyperactive, very

difficult to reason with, pretty spaced out at other times. She spun in

circles and talked to herself constantly, the latter drove me to

distraction. She could not add two and two when she was 7 while most

others in her class were doing double-digit mental arithmetic. She

completely alienated classmates by stalking them and pinning them to the

ground. She was so rigid. If we didnt do things her way, we had to start

all over again. If not she went into a huge meltdown. They all kept away

from her because she was considered " weird " , that at least was the

observation from one of her classmates who confided in me. Very few

birthday invites...that was horrible. The whole class sometimes was

invited but NOT my daughter. Children would make a point of requesting

that she NOT attend. (Makes me feel quite sick having to write this....)

The children circulated rumors that my daughter had a disease and one

child even wrote in her Valentines card that she was sorry to hear that

ACE had a virus in her brain, that she knew another child like that! (

Probably not too far from the truth looking back, " Out of the mouths of

babes and sucklings , as they say " ).................

But fast forward, things have changed in that regard absolutely

dramatically. .Now, it is my daughter who is being pursued by would-be

friends and the Headmaster told us last year that she could certainly

entertain thoughts of attending university if that is what she wanted. I

am so amazed by this, I cannot express this in words. I apprised the

History teacher of all her learning problems earlier on (she was defo

dyslexic) and she couldnt believe that we were talking about the same

child.

I have noticed lately that this dreadful smell emanating from her gut (

decomposed fecal breath) seems to have abated so that this coincides

with dramatic improvements socially and academically.

She has been on Candex the last three days and she is so mellow and

co-operative. I should have tried this stuff years ago!

Heres to the internet and the POWER of these boards and the likes of TA

who get the message out in such a professional manner! For without

them, I would have been in a looney bin years ago. I was fast on my way

there.

Have a great day!

eileen_mclennan schrieb:

>

> Hello all,

>

> Its 4.45 pm and I'm having one of those can't sleep nights so thought

> now I've got the chance I'd update you on how Jay's doing.

>

> First up what I always say - if it hadn't been for Treating Autism, I

> would not have my boy back with me making progress. And I can say to

> all you newbies out there, that I never DREAMED I'd get the boy I've

> got now! Its been long, and slow, and frustrating, and worrying, but

> absolutely 100% worth it. And thanks to Mandi, and Sharon in

> Guildford who told me about the wider scope of biomed on the phone

> whilst I sat there totally gobsmacked. And Rhona. Congratulations on

> getting communicative intent from Sam Mandi. Its a wonderful step.

>

> I haven't posted for a while - been trying to hold it all together.

> Really wanted to come to the P2P but impossible as I work on a

> Saturday and problematic if I take the day off as I teach 8 classes

> back to back.

>

> About Jay - he's now 5 and a half. Jay was a classic hyperactive,

> non-speaking, autistic kid with little eye contact. Started GF/CF

> diet at 2 and a half, enzymes and yeast protocol at 3, added in Super

> Nuthera capsules and extra B6 a little later, put in B12 injections

> and Folinic (still doing this, got tons of language it was an

> absolute miracle) gut healing took ages but we got there in the end,

> have been doing Chelation (Cutler Frequent dose) for about 7 months.

> Recently upped his B6 and magnesium and he settled more and had less

> sensory spells. Having read recent posts going to try VSL3 and Lara's

> suggestion (Choline).

>

> Gains on Chelation (after a set-back adding in ALA too early) -

> amazing! Unprompted social language ( " Wait for me " / " I Like that

> Story " / " Want one of these?) More awareness and lots of language about

> time - grasps tomorrow, today. Much less stimming now, playing games

> on computer and playstation appropriately more and more. And playing

> on his own - nicely, lots. Still lining up though. Got to deal with

> that one. Gently and respectfully sooner or later.

>

> For Jay I've always seen great physical and co-ordination gains from

> biomed. The drooling he had from a baby disappeared at 3.5 when we

> started really piling in the supplements. Since chelation he has

> learned how to do a handstand, hop, and imitates physically much more

> spontaneously. He had no balance at all previously. He can swim

> without any help. Prior to biomed, he never, ever, imitated at all.

> Now he does when playing games with us.

>

> This kind of thing happens a lot since chelation - a lot more social

> awareness. My friend's phone rang, he heard it, found it, and gave it

> to her unprompted. Has really got independent program his school run

> in the classroom. Much more interest in art. Tonight, right off the

> bat he asked for a book. Our conversation (Yes!) went like this -

>

> " Can I have my spaceman book?

> Do you mean the one in Mummy's car?

> No, its upstairs in the white box.

> Oh. Do you mean " Man on the Moon? "

> Yes.

> So what shall I do?

> Lets go and get it Mummy.

>

> We went upstairs and I got it.

>

> I said:

>

> Right, lets sit on the bed and I'll read it to you.

> Jay - No. Its my turn.

>

> (needless to say I gave it to him straight away!)

>

> Also he has asked WHY a lot since chelation, e.g. the first time, at

> soft play:

>

> me - You can't go in that room .

> J - Why?

> me (stunned) - Its for Birthday parties. You can only go in it if

> its your birthday or a party.

>

> I just didn't think He'd ever ask me Why. The big mistake I make

> with Jay is I expect things before he's developmentally ready. The VB

> hallowed path is teach How first, then Why. He wasn't getting How

> because he still has sequencing problems and How requires a number of

> steps. He can answer two step " how " s. Anyway I backed off and Why

> came of its own accord.

>

> I waited YEARS and agonised watching mums with their toddlers who

> would take a tumble and run to their mums for comfort. never

> did. On Mother's day he ran up to me crying, threw his arms around

> me and said " I banged my head " . You can keep your choccies and

> flowers - that's what I wanted!

>

> Also - this one - treasured, lying on the bed.

> Mummy?

> Yes?

> I do love you Mummy.

> (Never going to forget that as long as I live!)

>

> Now, there is still a lot to be done with Jay. He still has attention

> issues and sensory spells which I find hard. He still struggles

> with " Hello " to some people. This was a puzzle to me till I found

> that it is top of the ABLLS in terms of a skill because it is a mand

> that a lot of kids with autism don't find reinforcing. There's

> nothing in it for them.

>

> I have been plugging away at the reading for a long time but he is

> coming on. Incidentally I tried all the traditional routes - Janet

> and , Jolly Phonics - but what works for us is Englemann's " Teach

> your Child to read in 100 easy lessons " . I adapted it for Jay and

> made flashcards and handwriting supports. I can email these to

> anyone who gets the book. They're useless otherwise. This book

> gives you step by step lessons and tells you EXACTLY what to do. It

> costs under a tenner in new and used from Amazon and for those of you

> who aren't aware, Englemann wrote " Language for Learning " which

> costs an arm and a leg from the states (any one doing an ABA program

> funded should have a go at getting the 2 grand for it. Its top

> notch). However before you start you need pre-requisites - the child

> needs to be able to differentiate between " Say it fast " and " Say it

> slow " . At school he is learning Edmark reading program, which is

> great but is at bit sight-word oriented. I want him to learn

> phonetically as there is a limit to how many sight words the brain

> can take - believe its 700. So many people say autistic children

> can't learn to read phonetically (B*!!cks)

>

> I am convinced that's Jay's clever enough to work out reading as

> another route of communication so its a priority right now. Since

> chelation he is also much more interested in art and will draw a

> picture with me.

>

> I was interested in the thread about Son-Rise and Floortime. 's

> climbing though a lot of the ABLLS now and I've never believed that

> VB is the total and only answer. I think it is absolutely a must-do,

> but more and more, intensive interaction of the Floortime variety is

> a partner therapy for us and we are going to see Greenspan at his

> clinic in Washington. What I saw a lot with Son-Rise (several

> friends who have done it) are sparkling, social, beautiful and

> spirited children, with lovely and natural eye-contact, but their

> language skills are woefully lacking. This however is in no way a

> criticism of Son-Rise, which was a pioneering therapy and should be

> respected as such. It came before Floortime with which it shares many

> similarities. I think it is probably down to individual profile of

> the child, resources available, and the strengths and talent mix of

> those involved.

>

> I think Floortime is a hard port of call, on its own, as a first line

> response to a toddler with autism - VB makes sense to get some

> communication then intensive social interaction becomes somewhat

> easier. I love the fact though that Floortime acknowledges the

> sensory battles our children fight. And at the end of the day - the

> truth most mums know - probably all therapies that pull our children

> into the world are going to work well - its a question of just keep

> talking and interacting. The bloody rough bit. Splinter skills?

> OK, you try teaching them to our kids, local education authorities

> because most of the time many of your schools can't even deliver

> those!!! PS The floortime DVDs are GREAT so are those by Establishing

> Operations.

>

> Just my two cents and probably highly contentious!

>

> Right sorry to go on, hope this helps somebody somewhere - thanks

> everyone who's had time to read this - I wish you all well - if you

> want to email I'm at Eileen.Chiverton@...

> <mailto:Eileen.Chiverton%40Hotmail.com>. Continuing to

> follow your battles with interest, I always read the digests.

>

> Lots of Love,

> Respect! Eileen, and xxxxx

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG.

> Version: 7.5.518 / Virus Database: 269.21.7/1324 - Release Date: 10/03/2008

19:27

>

March 12, 2008

This is brilliant Eileen, well done on all the success with .

Can I just a squeeze a question in please, how much B6 are you giving, did you notice any initial negatives?

TIA

Vicky

March 12, 2008

This is brilliant Eileen, well done on all the success with .

Can I just a squeeze a question in please, how much B6 are you giving, did you notice any initial negatives?

TIA

Vicky

March 12, 2008

>

PS The floortime DVDs are GREAT so are those by Establishing

> Operations.

>

Congratulations Eileen and ! Thanks for all the great details

about your success so far :-) What huge, huge steps forward.

I have a question about the Floortime DVDs. Are these relatively

new? I watched about 2.5 years ago the entire video set put out by

Greenspan and that was my only complaint about Floortime--none of the

kids in the videos were nearly as severe as my son, and I found the

videos less than helpful. I'd like to get my hands on the DVDs if

they show things with more severe kids.

Thanks,

Anita

March 12, 2008

Eileen,

this is absolutely AMAZING!!! Thank you soooooooo

much for sharing. Thanks too for putting the contentious bit at the end.

I’d love people to be more open about their thoughts on different

programmes (mine are different to ours) but I think on this forum we are

respectful and a little afraid of upsetting people. I think if people truly say

why they did or didn’t choose a certain programme it helps others to make up their minds.

Fantastic story. SARA

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of JULIE GRIFFITHS

Sent: 12 March 2008 06:25

To:

Autism-Biomedical-Europe

Subject: Re: