Re: New UK member

[Guest guest]

Hi Jan - welcome to our group:

We have several UK members who I am sure will help you out quite a

bit! You're lucky to have noticed your daughter's plagio so young.

Hopefully, you'll see some improvement with repositioning. Check out

www.plagiocephaly.org then click repositioning tips for some good

ideas.

I have copied & pasted this message a member posted regarding UK

treatments - he posted this in January of this year to help fellow UK

parents.....I hope some info is useful to you. Best of luck with

repositioning, please keep us updated. Welcome Again.

Debbie Abby's mom DOCgrad

MI

Here is his post:::::

Hi,

We recently found this group very useful as we were desperately

searching round to figure out what was best for our daughter Molly

and things were quite confused here in the UK.

I therefore wanted to post something about the UK in the hope that

others may find this posting in the future.

(FYI, Regarding Molly it turns out that her case is quite mild and

does not require helmet therapy.)

1. In the UK things are very confused but it is clear that you child

should go and see one of the four regional craniofacial centres in

Liverpool, Birmingham, London and Oxford.

These guys are very negative on helmets but are the real experts.

2. For the helmet point of view, there is only one guy to talk to and

that is Dr. Blecher. You can find a link to him on the website and

his email is: Joerg.C.Blecher@...

3. There is a guy in Bristol who is doing helmets. I haven't met him

and didn't get a helmet off him but my strong feeling is that Dr.

Blecher is more experienced and offering a much higher quality

soltuion.

I hope this is of use and thanks to all for your help up to now.

Cheers,

Van Buren

> Hi, my name is Jan and I have a 13 week old daughter, whom

I

> believe has positional plagiocephaly. I noticed almost since birth

> that she preferred to sleep with her head to her right.

Unfortunatley

> I did not realise that this could lead to a flat spot (well

actually

> more than just a spot, its the whole side of her head, also her ear

> is now jutting out on that side) which she now most definately has.

I

> am currently trying to re-position her when she sleeps but am

finding

> this difficult.

>

> What I could really do with is some info from anyone in the UK as

to

> what treatnment they have had/where etc. I have an appointment with

> my GP to discuss the problem but I am concerned he may fob me off

> with " she will grow out of it... " so I would like to be well

> informed before I see him if you see what I mean.

>

> Also has anyone found any of the 'sleep positioners'sold in the USA

> anywhere in the UK or had any success with anything to get their

> child to sleep with their head on the opposite side to the flat

side.

> I have tried a rolled up towel under her shoulder but am worried

> about her being smothered by it.

>

> Looking forwrad to hearing from you.

>

> Many Thanks

>

> Jan

[Guest guest]

Welcome, Carolyn. I am from the UK (Cumbria) but live in the USA. It will

be interesting to hear how things like Aspergers are addressed in Blighty.

When I attempted to tell my sister in the UK about my son, via telephone,

she dismissed the behaviours as something that all kids do. I wish it was

that simple.

Andy

( ) New UK member

>

>

> Hi, my name is Carolyn and I am new to this group. I hope you don't

> mind me introducing myself like this.

> I have a grown up daughter with aspergers who is also a single

> parent. She was diagnosed at the age of thirty after recognising

> problems with her son's behaviour she could relate to. A lot has

> happened since then. At first I felt relief that at last she could

> accept there was a difference about her and then felt angry about all

> the years we as a family had struggled with her condition without any

> support. We have also learned lots about Aspergers but still live in

> a world which does not have any real recognition of it. I do what I

> can for aspergeres awareness within my own social and work arena but

> there are a lot of people who can't or refuse to understand and that

> can be hurtful.

> My daughter has two sons, one is diagnosed on the autistic spectrum

> with multiple behaviour problems. Problems for who I ask? But I

> realise anything that can't be understood becomes a problem for

> someone.

> She has another son with learning difficulties. We think he has

> aspergers too and need to have him assessed. He is the quieter of the

> two and has had his needs missed over the years. His brother is

> violent and prone to outbursts of bad and filthy language. There is a

> little sister aged two. We don't know if she has autistic traits yet

> though she will be lucky to escape any. She is hyperactive to some

> degree but that might be typical of a two year old.

> I have the elder son living with me most of the time and I find

> support needs for my daughter is ever increasing and I am juggling

> with work, support and caring to the point I have practically no time

> to myself. My husband is the same. We have to admit that this will

> continue for the rest of our lives and it is a difficult thing to

> accept.

> Are there any other British members in this group? We find that here

> in the Uk, support for families with autism varies dramatically

> according to where you live. It would be good to compare notes. My

> daughter is being successful in opening a support group in her home

> locality with the support and interest of her son's psycholgist. But

> there is a long and difficult road ahead.

> If anyone takes time to read this, thank you! If there are any

> grandparents who would like to respond, please do. If there are any

> Brits interested in comparing progress on the UK scene, I would love

> to hear from you.

> Best wishes

> Carolyn

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome to our group. Carolyn!

I am not from UK, quite far from there. how about the middle east. ?

But we as a group here , feel very close to each other despite the

geographical spread, and I can vouch for the group that even from afar it is

a very supportive and arm group>!

My son with AS is 12.

F

" When the power of love overcomes the love of power the world will know

peace. "

-- Jimi Hendrix

( ) New UK member

Hi, my name is Carolyn and I am new to this group. I hope you don't

mind me introducing myself like this.

I have a grown up daughter with aspergers who is also a single

parent. She was diagnosed at the age of thirty after recognising

problems with her son's behaviour she could relate to. A lot has

happened since then. At first I felt relief that at last she could

accept there was a difference about her and then felt angry about all

the years we as a family had struggled with her condition without any

support. We have also learned lots about Aspergers but still live in

a world which does not have any real recognition of it. I do what I

can for aspergeres awareness within my own social and work arena but

there are a lot of people who can't or refuse to understand and that

can be hurtful.

My daughter has two sons, one is diagnosed on the autistic spectrum

with multiple behaviour problems. Problems for who I ask? But I

realise anything that can't be understood becomes a problem for

someone.

She has another son with learning difficulties. We think he has

aspergers too and need to have him assessed. He is the quieter of the

two and has had his needs missed over the years. His brother is

violent and prone to outbursts of bad and filthy language. There is a

little sister aged two. We don't know if she has autistic traits yet

though she will be lucky to escape any. She is hyperactive to some

degree but that might be typical of a two year old.

I have the elder son living with me most of the time and I find

support needs for my daughter is ever increasing and I am juggling

with work, support and caring to the point I have practically no time

to myself. My husband is the same. We have to admit that this will

continue for the rest of our lives and it is a difficult thing to

accept.

Are there any other British members in this group? We find that here

in the Uk, support for families with autism varies dramatically

according to where you live. It would be good to compare notes. My

daughter is being successful in opening a support group in her home

locality with the support and interest of her son's psycholgist. But

there is a long and difficult road ahead.

If anyone takes time to read this, thank you! If there are any

grandparents who would like to respond, please do. If there are any

Brits interested in comparing progress on the UK scene, I would love

to hear from you.

Best wishes

Carolyn

[Guest guest]

Thank you Andy, F and . It is good to know there is so much

global support.

I have just finished helping one grandson (15)with his English exam

homework. He is allowed to type it on the computer so at least thats

a step in the right direction for him. He didn't do too badly. We

went over punctuation, spelling and tense. I don't know if he

understood all of it but he tried. Its difficult knowing where to

draw the line. It is his homework and should reflect his ability

after all.

Nice hearing from you.... and Andy, we are in Newcastle upon Tyne,

not too far from your native Cumbria.

cheers

Carolyn UK

>

>

> >Hi, my name is Carolyn and I am new to this group. I hope you don't

> >mind me introducing myself like this.

> >I have a grown up daughter with aspergers who is also a single

> >parent. She was diagnosed at the age of thirty after recognising

> >problems with her son's behaviour she could relate to. A lot has

> >happened since then. At first I felt relief that at last she could

> >accept there was a difference about her and then felt angry about

all

> >the years we as a family had struggled with her condition without

any

> >support. We have also learned lots about Aspergers but still live

in

> >a world which does not have any real recognition of it. I do what I

> >can for aspergeres awareness within my own social and work arena

but

> >there are a lot of people who can't or refuse to understand and

that

> >can be hurtful.

> >My daughter has two sons, one is diagnosed on the autistic spectrum

> >with multiple behaviour problems. Problems for who I ask? But I

> >realise anything that can't be understood becomes a problem for

> >someone.

> >She has another son with learning difficulties. We think he has

> >aspergers too and need to have him assessed. He is the quieter of

the

> >two and has had his needs missed over the years. His brother is

> >violent and prone to outbursts of bad and filthy language. There

is a

> >little sister aged two. We don't know if she has autistic traits

yet

> >though she will be lucky to escape any. She is hyperactive to some

> >degree but that might be typical of a two year old.

> >I have the elder son living with me most of the time and I find

> >support needs for my daughter is ever increasing and I am juggling

> >with work, support and caring to the point I have practically no

time

> >to myself. My husband is the same. We have to admit that this will

> >continue for the rest of our lives and it is a difficult thing to

> >accept.

> >Are there any other British members in this group? We find that

here

> >in the Uk, support for families with autism varies dramatically

> >according to where you live. It would be good to compare notes. My

> >daughter is being successful in opening a support group in her home

> >locality with the support and interest of her son's psycholgist.

But

> >there is a long and difficult road ahead.

> >If anyone takes time to read this, thank you! If there are any

> >grandparents who would like to respond, please do. If there are any

> >Brits interested in comparing progress on the UK scene, I would

love

> >to hear from you.

> >Best wishes

> >Carolyn

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Carolyn

I am from the UK and have a 13 yr old son with Aspergers, from what

I have read it is indeed a bit of a lottery as to where you live and

the support you get. I belong to a few AS sites including Aspergers

UK which is another group, everyone on all the sites I belong

to are extremely friendly and have a wealth of stories to tell and

experiences to share.

Good luck and welcome to the group

Sue

>

> Hi, my name is Carolyn and I am new to this group. I hope you

don't

> mind me introducing myself like this.

> I have a grown up daughter with aspergers who is also a single

> parent. She was diagnosed at the age of thirty after recognising

> problems with her son's behaviour she could relate to. A lot has

> happened since then. At first I felt relief that at last she could

> accept there was a difference about her and then felt angry about

all

> the years we as a family had struggled with her condition without

any

> support. We have also learned lots about Aspergers but still live

in

> a world which does not have any real recognition of it. I do what

I

> can for aspergeres awareness within my own social and work arena

but

> there are a lot of people who can't or refuse to understand and

that

> can be hurtful.

> My daughter has two sons, one is diagnosed on the autistic

spectrum

> with multiple behaviour problems. Problems for who I ask? But I

> realise anything that can't be understood becomes a problem for

> someone.

> She has another son with learning difficulties. We think he has

> aspergers too and need to have him assessed. He is the quieter of

the

> two and has had his needs missed over the years. His brother is

> violent and prone to outbursts of bad and filthy language. There

is a

> little sister aged two. We don't know if she has autistic traits

yet

> though she will be lucky to escape any. She is hyperactive to some

> degree but that might be typical of a two year old.

> I have the elder son living with me most of the time and I find

> support needs for my daughter is ever increasing and I am juggling

> with work, support and caring to the point I have practically no

time

> to myself. My husband is the same. We have to admit that this will

> continue for the rest of our lives and it is a difficult thing to

> accept.

> Are there any other British members in this group? We find that

here

> in the Uk, support for families with autism varies dramatically

> according to where you live. It would be good to compare notes. My

> daughter is being successful in opening a support group in her

home

> locality with the support and interest of her son's psycholgist.

But

> there is a long and difficult road ahead.

> If anyone takes time to read this, thank you! If there are any

> grandparents who would like to respond, please do. If there are

any

> Brits interested in comparing progress on the UK scene, I would

love

> to hear from you.

> Best wishes

> Carolyn

[Guest guest]

Re: ( ) New UK member

>

>and Andy, we are in Newcastle upon Tyne,

So I won't mention the score of the match I paid $15.00 to watch this

morning. :>)

[Guest guest]

> He didn't do too badly. We

> went over punctuation, spelling and tense. I don't know if he

> understood all of it but he tried. Its difficult knowing where to

> draw the line. It is his homework and should reflect his ability

> after all.

Carolyn, with homework and going over things like you mentioned above,

I don't think that's " over the line " really, as I consider that

teaching them. I mean, lots of kids don't quite " get it " in school

for whatever reasons. So working with them at home, making

suggestions, explaining, etc., I personally think is fine.

My AS son had OCD really bad in 6th grade, around age 12; he's now 16

and in grade 10. He had to dictate his work to me for a while. I

wrote what he said pretty much. But I thought of it as, if he asked

me to read a completed assignment, I'd make suggestions or corrections

(punctuation or whatever), so helping as he wrote it wasn't too much

different. I even told his teachers that it was HIS work, they could

be sure, as I use much simpler words (not so high a vocabulary as

him).

Gotta go!