RE: seen the doctor

[Guest guest]

Hiya Dave

It makes me want to cry just reading your email because I know what its like, we all do, having been there... The day we were diagnosed it was my husband who just had tears rolling down his face. You have to know Harry (bit of a JR Ewing type!!, Whoops maybe you are too young for Dallas... first comparison I could think of since he works for Shell!)... what I'm trying to say is, he is not really that type of guy...not terribly emotional but sensible...

We were living in Oman at this time and only had another week back in the UK, it was probably the worst day of my life. Harry then went into total denial and thot they couldnt possibly diagnose her in such a short time, and his mums best friend (in Norway), who works in the area of special needs, told his mum that didnt look autistic... Helllooo! Probably the most damaging words anybodys ever uttered because it just prolonged the whole process.

You will go through all the cycles of grief and denial and anger... Thats all very natural... We like you hoped it wouldnt be autism, but some sort of language delay or something we had never heard of. I hope your girlfriend will be OK but give her time because we all go at different rates, dont we?

sounds like a great lady and I know she will get you on the right track. Would it help if your girlfriend had a chat with me, I'm sure others will offer this too but you have my number so call if I can help. As for the ABA activities, any one to one you can give Dan will help. As I said I am not an expert but I will help you anyway I can. I havent sent you the stuff I intended to because our laptop sadly expired last week, new one should arrive tomorrow and hopefully we can salvage our hard drive. Getting others to help you out with this is a great idea too... I know its no comfort but at times like this you will be amazed at how good some people can be, its heart warming.

Call me if you want to chat, today I am at home all day working...

One last thing, the day we were diagnosed and life, as we knew it, changed, I called my friend in Oman, she had a little boy with autism too, to tell her our news. She burst out crying and was so upset, much more than me actually, she said to me how much it took her back to when her son was diagnosed. She gave me some words that even then I knew I would always remember.... Caroline one year from now you will feel differently from what you do today.... I didnt really know exactly what she meant cos I was so numb but I do now and I did feel differently. Our anniversary of diagnosis is this week, 23rd March, and one year on from s diagnosis, we began our ABA programme, back in the UK, in our beautiful house, my dog was born that same day and life wasnt fantastic but we were moving forward and thats what matters. You will too.

Lotsa Love and Best Wishes

Caroline

x

[Guest guest]

Hi

I remember every little detail from when

my son was diagnosed 6 years ago and they are not happy memories. I found it difficult to accept but as

soon as I was able to help I felt much more in control. Starting the GF/CF diet resulted in

immediate improvements, we also did and do ABA and have only started biomed. The sooner you start the better. Regards ABA it is difficult getting started without

some supervision, and I can understand that you want to save your money for

biomed. What would perhaps help

with ABA would

be to visit local families who are already established, perhaps you could learn

some things from them. In the past

we have had lots of families visit our program and I (as I am sure others)

would be happy to help.

Good luck

Elaine

From: Autism Treatment [mailto:Autism Treatment ] On Behalf Of dava mcgrath

Sent: 21 March 2006 10:43

Autism Treatment

Subject:

seen the doctor

Hi Caroline,

hope things are OK with you and your family, we seen the consultant

peadiatrician and our son Dan was diagnosed with ASD, I had been dreading this

and the devestation it brings. They gave us a booklet on ASD and sent us

on our way as the next appointment due. My girlfriend did have hope that

Dan maybe not diagnosed and I was worrying about nothing so shes not really

coping atall. Dan however is as happy as ever jumping around and shouting

" tweet tweet " like he is one of the penguines off pingu. We re

going to see Muscroft on Friday I m trying to talk my girlfriend into

reading about the biomedical theories and start Dan on a GFCF diet although

shes not buying it at the moment. I m hoping that may be able to

persuade her. I think she needs a bit of time for it all to sink

in. I ve tried some of them ABA

pointers you have given me and have had a little success with Dan responding to

a few things. I ve got a few tutors lined up and have starting reading

about the subjects. Dont think I am going to get a specialist in as it

just costs too much and I d rather spend it on tests and medications on the bio

medical model. Theres so many theories around though its mind bogelling.

take

care

dave

[Guest guest]

Sara is that the book where the girl goes to Switzerland for treatment?

I'm sure that was the first book I ever read when I suspected my oldest had autism, it really set me on the road to look for answers, really inspirational.

Vicky

P.S. Should say the first book I ever read about autism lol, I had read the odd book before that lol

[Guest guest]

Darn I'm going to be nuts all evening now wondering what the book was I read, think it was about AIT, it was a true story, and the woman was also from New York, she had 2 girls but only one with autism I think.

Never mind lol

Vicky

x

[Guest guest]

In a message dated 21/03/2006 22:40:36 GMT Standard Time, MaddiganV@... writes:

Darn I'm going to be nuts all evening now wondering what the book was I read, think it was about AIT, it was a true story, and the woman was also from New York, she had 2 girls but only one with autism I think.

>>>Sound of a Miracle Anable S something?

Mandi x

[Guest guest]

Dave,

Although nothing to do with biomedical,

Maurice’s ‘Let me hear your voice’ was a life-changing book for me. It

really helps with not always trusting the experts, it’s also good at putting

your feelings and devastation into words and helps you grieve/ realise you’re

not alone, etc.

Sara

seen the doctor

Hi Caroline,

hope things are OK with you and your family, we seen the consultant

peadiatrician and our son Dan was diagnosed with ASD, I had been dreading this

and the devestation it brings. They gave us a booklet on ASD and sent us

on our way as the next appointment due. My girlfriend did have hope that

Dan maybe not diagnosed and I was worrying about nothing so shes not really

coping atall. Dan however is as happy as ever jumping around and shouting

" tweet tweet " like he is one of the penguines off pingu. We re

going to see Muscroft on Friday I m trying to talk my girlfriend into

reading about the biomedical theories and start Dan on a GFCF diet although

shes not buying it at the moment. I m hoping that may be able to

persuade her. I think she needs a bit of time for it all to sink

in. I ve tried some of them ABA pointers you have given me and have had a

little success with Dan responding to a few things. I ve got a few tutors

lined up and have starting reading about the subjects. Dont think I am

going to get a specialist in as it just costs too much and I d rather spend it

on tests and medications on the bio medical model. Theres so many

theories around though its mind bogelling.

take care

dave

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[Guest guest]

No, it’s just the book

that everyone tells you to read before doing ABA. She was a mum of 2

autistic children in New York in the 80s and talks about her experiences with the ‘experts’ and with

ABA in a

well written novel. She also edited the main manual (or at least the one I was

recommended) for ABA/VB – sorry never remember the names of things.

Sara

Re:

seen the doctor

Sara is

that the book where the girl goes to Switzerland for treatment?

I'm

sure that was the first book I ever read when I suspected my oldest had autism,

it really set me on the road to look for answers, really inspirational.

Vicky

P.S.

Should say the first book I ever read about autism lol, I had read the odd book

before that lol

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[Guest guest]

Dave,

I wanted to share something that I hope might help both you and your

girlfriend. I just had my son in for his official diagnosis. Where

I live, it is about a 14 month wait for that. Everyone we saw, SLP,

OT, dev. Ped, etc, was a bit taken aback by us. We weren't

devestated. We weren't sad. We were, in fact, acting like the

three days were a bit of a vacation for us. Because, in fact, they

were. Only one child to look after, no meals to cook (we were far

from home), etc. And no one had to tell us our son was autistic.

We've known for what now seems a lifetime already.

However, if these people had seen my husband and I when our son

first regressed about 16 months ago, they would have seen very

different people. Neither of us could stop crying. I felt

hopeless. Guilty (what had I done to cause this?). I despaired for

my sweet smart boy who no longer laughed, no longer seemed to care

about us or anything except his few favourite videos. Who hurt

himself on purpose all the time. Who could no longer speak. The

future could not have been more frightening.

My son is still very much autistic. But he is not the same little

boy who I described above. Biomedical interventions have made a

huge difference. It hasn't been one success after another. That is

for sure. But overall, we are progressing in the ways that are most

important to me. He is healthier. He can laugh. He smiles at me

sometimes. He can communicate through gestures and taking our hand

and a few words. A big part of this progress has come from

Floortime therapy which we do at home. Not only has it helped my

son, it has helped the rest of the family learn to connect with him

where he is at. It has made us happier--a wonderful byproduct of

making him happier.

Certainly parents have every right to grieve when their child

receives a diagnosis of ASD. But do know that you are in the right

place to help your child. And months from now, you will be

exhausted, I am sure, but your child will be improving, and you will

also be a lot more hopeful. And in spite of everything, you will

also be stronger. I did not believe anything of the sort when I

first realized my son was autistic. But it has turned out to be

true. And when I read posts from the strong, generous, optimistic

people on this board, I believe it is true of them also.

My best wishes,

Anita

[Guest guest]

Oh is it belle Stehli - Sound of a Miracle

Rings a bell

Caroline

x

[Guest guest]

Hi Dave

There's lots of really helpful and sound advice from listers - allow

me to add my tuppenceworth

1 Biomed is great but you need something to help your child 'learn

how to learn' ABA is fab for this. Biomed/gf/cf diet and ABA go

together hand in glove! Dan's peers are 'soaking up learning

experiences around them like little sponges' and you've got get him

able to imitate, learn from others, access skills and knowledge.

Okay you maybe feel like you can't afford this financially yourself

but you have to find ways of accessing funding so, here's three point

plan

1) Get your LEA to assess him for a statement of Educational Needs

NOW.

The sooner you have an assessment and statement, the quicker you'll

get funding! It took us a whole year to get the funding - which if

you're not doing ABA or another intervention for Dan is a year lost

and they don't have too many years to play with. We now have full

funding for ABA 40 /week 50 weeks per year, plus Sensory Integration

and Speech and Language Therapy. We've aged 20 years in process -

believe me, that's difficult when you are knocking fifty - but was

it worth it? YES, YES AND YES! We now have a four and half yr old

doing 11 times and 2 times tables, reading single words at a seven

year old level, with perfect pitch, playing piano both hands chords,

with all five fingers scales, arpeggios,- whatever they are -

haven't a clue- totally tone deaf - choosing clothes to wear,

saying 'no, I want to pour the milk,' showing anticipation of future

rewards - e.g. I'm saving this till later- This is all a million

miles away from the constant running up and down, answering back the

same question with echolalia , not responding to his name, not saying

hello/goodbye, Mummy/Daddy we had one year ago.

But you've got to get on the train now 'cos it's about to leave the

station and steam off without you!

The longer you let your LEA prevaricate and deny your child the

education they need and deserve, the more you are almost complicit in

that denial.

Your LEA will say, 'wait and see' 'needs to be seen by specialist

support teacher etc' ALL BALONEY - for want of a better word......!

Empower yourself and write in now - just request assessment for a

statement of educational needs !

Confused?.....Angry? - you will be!! with all the pretexts they

invent to deny your child an education and a future. But use that

anger positively to galvanise your strength and determination to

recover your child.

Meanwhile, plan your ammo - match fire power with fire power. You

need Ed Psychologist and Speech and language therapy reports

advocating ABA 40 hrs wk 50 weeks year to rebut the LEA's

unsubstantiated Ed Psych report to say 'he's doing fine, let's wait

and see - different day, same old merde!!

2) Get everything you're entitled to

a) Disability living allowance and carer's allowance (around £5k

annually - enough to fund maybe 8 ABA workshops!)

£60 off your winter gas bill for having disabled person living

with you

c) rebate on council tax for using room as therapy room

d) funding for your ABA - choose your fittest friend and get them to

do a cycle run/bungee jump, whatever- we raised £12,000 from a

sponsored cycle run which my sister did (and she's 50!) You can do

it!!

3) Find ABA tutors, get ABA provider lined up and READ, READ, READ

all about it!! Read ABA, Speech and Language therapy stuff,Biomed

books, dietary intervention, stories of hope and recovery from

autism, Maurice is a good place to start.

Find out if Dan has sensory issues - balance/coordination, etc- don't

believe your NHS cos they only cater of the child on the 1st centile.

Get an indep Occupational Therapist to assess him but meanwhile write

down your own observations and read SensoryIntegration books- Does

your NHS PCT have books to borrow on this- there's lots you can do -

at the swing park and funky fun house ! That doesn't cost much!

You won't have time to grieve because you'll just be too busy.

Take heart and inspiration from the wonderful experiences of those on

this list and many others and tread their path to recover your son.

Much of the hard work has been done by their trial and error so use

their experiences, knowledge and expertise to make the best life

possible for your son.

All the best (having now run out of steam and exclamation marks!)

Rhona

ps If you want the Hannen book 'More than words' which works as handy

precursor to ABA, I'll send you this. let me know your details. Full

of ideas to get your child interacting, talking etc.,