I have not posted for a while but I do check in every few weeks or so
to see how everyone is doing... I'm a rather shy person but this group
is unique and a essential form of communication between us, who live
our lives with Weaver Syndrome and one site I'm truly at home with
because as each one of you speak of your child your experiences your
question and worries, I see my life with Nathan and at the end of the
day we are the only ones who can help one another with all our own day
to day experiences which may not be medical but are equally important
to us mum living with a child with Weaver Syndrome

With the kindest of regards

Sandy & Nathan  (aged 8 tomorrow 8th Feb)    xxxxxx

They have done comparative Genome Hybradisation on Logan, and one of
the duplicates found were extra x chromosones in the rods and cones in
his eyes.  (hope that makes sense)  Have these been found in anyone
elses child?

Hope you are all well and enjoying the start of the new year

Jacquie and Logan

Hi Jacquie and Logan

Thank you for Nathan's birthday wishes...Its so nice to meet you x
I'm sure you have plenty to say or contribute Jacquie... but
sometimes its nice knowing there is a place you can go and ask a
question or whatever ... When ever we have to see any new health
professional or a new doctor they never know anything about Weaver's
but here there is none of that ...do you know what I mean because we
all share this syndrome in various degrees meaning some of our kids
are less abled by weavers than others but that doesn't matter... what
matters is that we all live this disorder...sorry I tend to waffle on
a bit anyway like I said its nice to meet you both, take care


Hugs
Sandy & Nathan xx



--- In WSSA@yahoogroups.com, jacqueline miller <jacq1976@...> wrote:
>
> Hi Sandy
>  
> I dont post that often either as im still new to Weavers and dont
have much useful information to give at the moment.  Happy Birthday
for tomorrow Nathan
>  
> Love from
>  
> Jacquie and Logan xx
>  
> --- On Sat, 2/7/09, Sandy <znandra40@...> wrote:
>
> From: Sandy <znandra40@...>
> Subject: [WSSA] Hello everyone
> To: WSSA@yahoogroups.com
> Date: Saturday, February 7, 2009, 6:48 PM
>
>
>
>
>
>
> I have not posted for a while but I do check in every few weeks or
so
> to see how everyone is doing... I'm a rather shy person but this
group
> is unique and a essential form of communication between us, who
live
> our lives with Weaver Syndrome and one site I'm truly at home with
> because as each one of you speak of your child your experiences
your
> question and worries, I see my life with Nathan and at the end of
the
> day we are the only ones who can help one another with all our own
day
> to day experiences which may not be medical but are equally
important
> to us mum living with a child with Weaver Syndrome
>
> With the kindest of regards
>
> Sandy & Nathan (aged 8 tomorrow 8th Feb) xxxxxx
>

Happy Birthday Nathan!!  Best of wishes for a wonderful day.  It has
been a while since I last posted.  Not much new going on with Abby.
She turned 10 in September, is 5'9" now and wheres a size 13 in men's
shoes.  She has started on medication for ADHD which has helped her to
focus better during school.  We had to try several before we found a
medicine that worked well for her.  She is more emotional now as she
is in the pre-puberty stage.  Dr. Weaver said she will stop growing
once she reaches puberty, temporarily, so I am looking forward to
that.  We are going to be seeing Dr. Weaver again next month for our 2
year followup.  I am interested in what he thinks and what he has
learned, if anything.  Has anyone else seen Dr. Weaver lately?  Have
you learned anything new?

Hugs and Kisses to all,

Greta & Abby







--- In WSSA@yahoogroups.com, "Sandy" <znandra40@...> wrote:
>
> I have not posted for a while but I do check in every few weeks or so
> to see how everyone is doing... I'm a rather shy person but this group
> is unique and a essential form of communication between us, who live
> our lives with Weaver Syndrome and one site I'm truly at home with
> because as each one of you speak of your child your experiences your
> question and worries, I see my life with Nathan and at the end of the
> day we are the only ones who can help one another with all our own day
> to day experiences which may not be medical but are equally important
> to us mum living with a child with Weaver Syndrome
>
> With the kindest of regards
>
> Sandy & Nathan  (aged 8 tomorrow 8th Feb)    xxxxxx
>

Hey Greta & Abby

Thank you for your reply x I'm glad that Abby is doing well its
wonderful to hear some positive news...we have also been told
Nathan's growth rate wont slow down until puberty (which will
determined their adult height) I'm not to sure what Nathans exact
height is but he is bigger than my 11 year old daughter (which you
can see in PHOTOS)

once again thanks for your reply Greta wishing all the best for you
and all your family

Sandy & Nathan   xxxx



--- In WSSA@yahoogroups.com, "Greta" <g.lomom@...> wrote:
>
> Happy Birthday Nathan!!  Best of wishes for a wonderful day.  It has
> been a while since I last posted.  Not much new going on with Abby.
> She turned 10 in September, is 5'9" now and wheres a size 13 in
men's
> shoes.  She has started on medication for ADHD which has helped her
to
> focus better during school.  We had to try several before we found a
> medicine that worked well for her.  She is more emotional now as she
> is in the pre-puberty stage.  Dr. Weaver said she will stop growing
> once she reaches puberty, temporarily, so I am looking forward to
> that.  We are going to be seeing Dr. Weaver again next month for
our 2
> year followup.  I am interested in what he thinks and what he has
> learned, if anything.  Has anyone else seen Dr. Weaver lately?  Have
> you learned anything new?
>
> Hugs and Kisses to all,
>
> Greta & Abby
>
>
>
>
>
>
>
> --- In WSSA@yahoogroups.com, "Sandy" <znandra40@> wrote:
> >
> > I have not posted for a while but I do check in every few weeks
or so
> > to see how everyone is doing... I'm a rather shy person but this
group
> > is unique and a essential form of communication between us, who
live
> > our lives with Weaver Syndrome and one site I'm truly at home
with
> > because as each one of you speak of your child your experiences
your
> > question and worries, I see my life with Nathan and at the end of
the
> > day we are the only ones who can help one another with all our
own day
> > to day experiences which may not be medical but are equally
important
> > to us mum living with a child with Weaver Syndrome
> >
> > With the kindest of regards
> >
> > Sandy & Nathan  (aged 8 tomorrow 8th Feb)    xxxxxx
> >
>

Hi Keira

I'm not to sure but I found this on the following link about Dr David
Weaver.



www.healthgrades.com/directory_search/physician/profiles/dr-md-
reports/Dr-David-Weaver-MD-D95C8625.cfm

               EMAIL ADDRESS : David.Weaver@...


Nathan and I live in the UK so I have never met him but when Nathan
was about 2 years old I did email Dr Weaver! I recall we didn't wait
to long for his reply and we found him to be such a friendly man! he
answered all our questions and pointed us in the right direction on
the internet where to find more info on Weaver's but it tends to be
in the form of medical text. he concluded that if we feel we ever
needed to email him again not to hesitate in doing so...such a lovely
man I would truly encourage you to email him

Thank you for taking the time to reply to me Keira much appreciated
if you do email lets know how you get on...Good luck

with Kind Regards
Sandy & Nathan  xxxxx





--- In WSSA@yahoogroups.com, "Keira James" <kjandjp@...> wrote:
>
> Hi,
>
>
>
> We are another of the infrequent posters to the forum but regularly
read
> with interest how everyone is going.
>
> Our son Oliver will be 5 soon and is making fantastic progress.
>
> We believe Oli is the only kid to be diagnosed with Weaver here in
Australia
> and since the original diagnosis contact with geneticists/experts
has been
> pretty limited as no one really understands or has much knowledge
of the
> situation.
>
> We would like to be able to get in contact with Dr Weaver, in one
way it
> would be nice to at least talk with someone who has more knowledge
and
> understanding of the condition than we have acquired.
>
> If anyone could forward on email address or some other of making an
initial
> contact with Dr Weaver or his team it would be very much
appreciated.
>
> All our best to you all and your families.
>
>
>
> Keira, John, Oliver & Niamh.
>
>
>
> Keira James
>
>
>
> Watervale-Mintaro Road, Watervale  SA  5452
>
> PO Box 762, Watervale  SA  5452
>
> 08 8843-0178   0412 423 282
>
> kjandjp@...
>
> P Please consider the environment before printing this e-mail
>
>
>
>
>
>
>
>
>
> From: WSSA@yahoogroups.com [mailto:WSSA@yahoogroups.com] On Behalf
Of Greta
> Sent: Sunday, 8 February 2009 2:47 PM
> To: WSSA@yahoogroups.com
> Subject: [SPAM][WSSA] Re: Hello everyone
>
>
>
> Happy Birthday Nathan!! Best of wishes for a wonderful day. It has
> been a while since I last posted. Not much new going on with Abby.
> She turned 10 in September, is 5'9" now and wheres a size 13 in
men's
> shoes. She has started on medication for ADHD which has helped her
to
> focus better during school. We had to try several before we found a
> medicine that worked well for her. She is more emotional now as she
> is in the pre-puberty stage. Dr. Weaver said she will stop growing
> once she reaches puberty, temporarily, so I am looking forward to
> that. We are going to be seeing Dr. Weaver again next month for our
2
> year followup. I am interested in what he thinks and what he has
> learned, if anything. Has anyone else seen Dr. Weaver lately? Have
> you learned anything new?
>
> Hugs and Kisses to all,
>
> Greta & Abby
>
> --- In WSSA@yahoogroups.com <mailto:WSSA%
40yahoogroups.com> , "Sandy"
> <znandra40@> wrote:
> >
> > I have not posted for a while but I do check in every few weeks
or so
> > to see how everyone is doing... I'm a rather shy person but this
group
> > is unique and a essential form of communication between us, who
live
> > our lives with Weaver Syndrome and one site I'm truly at home
with
> > because as each one of you speak of your child your experiences
your
> > question and worries, I see my life with Nathan and at the end of
the
> > day we are the only ones who can help one another with all our
own day
> > to day experiences which may not be medical but are equally
important
> > to us mum living with a child with Weaver Syndrome
> >
> > With the kindest of regards
> >
> > Sandy & Nathan (aged 8 tomorrow 8th Feb) xxxxxx
> >
>

Hi Greta....

Sorry it took me a while to reply we went to stay in a log cabin in
the welsh mountains ..a much needed break

wow I know what you mean about having to laugh at the irony of it all
I must of admit I have had to learn to laugh about it all regarding
Nathan's size when he was younger it was such an ordeal just to go
shopping for his clothes, which was every six weeks or so Paul always
did it lol

There is something that I have always wondered about ... each time
Nathan gets a cold he will loose his voice up to 3 weeks at a time
and I wondered if any other mums have noticed this or it has anything
to do with their 'low pitched cry' as infants? its something I have
always been curious about

anyway good luck with Dr Weaver please lets' know how you get
on ...until then take care

Sandy  xx





--- In WSSA@yahoogroups.com, Greta Holmes <g.lomom@...> wrote:
>
> Sandy,
>
> I love the new pictures you posted of Nathan.  He is taller than
his sister.  Abby is now taller than me.  I have to make her sit so I
can brush her hair,  and she puts her arms on my shoulders when we
hug.  I find myself laughing about it all of the time.  My 10 year
old is passing her shoes to her father and looking down at her
mother.  You have to laugh about it...
>
> I will let everyone know what Dr. Weaver says when we see him at
our visit.  If anyone has questions for him I would be happy to ask
and report back.  Just let me know.
>
> Best wishes to all.
>
> Greta & Abby
>
>
>
>
> ________________________________
> From: Sandy <znandra40@...>
> To: WSSA@yahoogroups.com
> Sent: Saturday, February 7, 2009 1:48:58 PM
> Subject: [WSSA] Hello everyone
>
>
> I have not posted for a while but I do check in every few weeks or
so
> to see how everyone is doing... I'm a rather shy person but this
group
> is unique and a essential form of communication between us, who
live
> our lives with Weaver Syndrome and one site I'm truly at home with
> because as each one of you speak of your child your experiences
your
> question and worries, I see my life with Nathan and at the end of
the
> day we are the only ones who can help one another with all our own
day
> to day experiences which may not be medical but are equally
important
> to us mum living with a child with Weaver Syndrome
>
> With the kindest of regards
>
> Sandy & Nathan  (aged 8 tomorrow 8th Feb)    xxxxxx
>

Hello everyone, hope all is well for you and your families! I wanted to
introduce our newest member, Magda from Poland. She is the godparent of a
recently diagnosed child named Kuba. The parents do not speak English (names are
Kasia & Tomek),therefore, the godmother is trying to get information for/to
them. She has asked to become a member and share in our experiences. Like most
of us at that time, the newly diagnosed family is wanting to know all they can
on this syndrome.
So welcome Magda! Please ask anything you wish, I am sure one of the great and
knowledgable mothers/family members on here can help you!
April
Mother to Devon, now 7!!

Welcome Magda.  My name is Greta and I have a 10 year old daughter who was
diagnosed with Weaver Syndrome at the age of two.  I hope you find the answers
you are looking for.  Just remember that we all have different stories, so you
might have to do some reading of previous posts to find our what might be close
to your situation.  Hope we can help!

Greta, mother of Abby




--- In WSSA@yahoogroups.com, "April" <ahooburg79@...> wrote:
>
> Hello everyone, hope all is well for you and your families! I wanted to
introduce our newest member, Magda from Poland. She is the godparent of a
recently diagnosed child named Kuba. The parents do not speak English (names are
Kasia & Tomek),therefore, the godmother is trying to get information for/to
them. She has asked to become a member and share in our experiences. Like most
of us at that time, the newly diagnosed family is wanting to know all they can
on this syndrome.
> So welcome Magda! Please ask anything you wish, I am sure one of the great and
knowledgable mothers/family members on here can help you!
> April
> Mother to Devon, now 7!!
>

I couple of weeks ago we received a phone call from Nathans school reporting to
us that something serious had  happened in school involving Nathan! As you can
imagine we rushed to the school were we were told had `attacked a little girl in
his class! I was filled with horror at the mere thought of it, luckily   the
little girl wasn't hurt thank god, but she was upset and crying! so we took him
home there and then…after sitting him down and taking to him it turns out that
he attacked her because she was just sitting in his `chair'…no one at that point
had realized that he had focused so much on his chair (Nathan has many autistic
traits)

The following day we had a meeting with his teacher and the special needs
teacher etc  they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .

A week later we had an appointment with community paediatrician and she gave us
2 phone numbers to ring even though people who get these numbers usually have a
diagnosis (autistic nurse who can put us in touch with various services that can
help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because  I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state I
didn't know how to react I didn't know what to say to Nathan I even didn't know
how to punish him as he does not fully understand what he actually did! I think
I need help and some advise…if it was you what would you do in this situation?

Sandy  xxx

--- In WSSA@yahoogroups.com, "Sandy" <znandra40@...> wrote:

> I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had  happened in school involving Nathan! As you
can imagine we rushed to the school were we were told had `attacked a little
girl in his class! I was filled with horror at the mere thought of it, luckily  
the little girl wasn't hurt thank god, but she was upset and crying! so we took
him home there and then…after sitting him down and taking to him it turns out
that he attacked her because she was just sitting in his `chair'…no one at that
point had realized that he had focused so much on his chair (Nathan has many
autistic traits)
>
> The following day we had a meeting with his teacher and the special needs
teacher etc  they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
>
> A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because  I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state I
didn't know how to react I didn't know what to say to Nathan I even didn't know
how to punish him as he does not fully understand what he actually did! I think
I need help and some advise…if it was you what would you do in this situation?
>
> Sandy  xxx
>


Hey Sandy,
          I understand what you are going through, even though Earl is not in
school he is around other children alot and still has no speach ability so he
acts out often. Luckily his cousins are older and understand. I say call the
numbers, they may not know about weavers like so many others don't, but this
might prompt them to look into it. And if they evaluate him and look into his
case they'll see that Nathan like so many of our kids, does have autistic like
behaviors. Even if they can't help they may know someone who can. But whatever
you do you have to try.

Sincerley,
Jenny

Hi Jenny....thank you for your support its soooo appreciated...its the strange
feeling of 'isolation' we are feeling it feels a bit like shock! we all deal
with many things on a daily basis and on a personal level ya Nathan has his
'funny' ways which make him such a unique little boy...but I never expected this
may be we were being a little naive but thank you for your kind words Jenny ...I
hope you earl and all your family are doing ok

Hugs   Sandy  xxx




--- In WSSA@yahoogroups.com, "Jenny" <myjenny_80@...> wrote:
>
> --- In WSSA@yahoogroups.com, "Sandy" <znandra40@> wrote:
>
> > I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had  happened in school involving Nathan! As you
can imagine we rushed to the school were we were told had `attacked a little
girl in his class! I was filled with horror at the mere thought of it, luckily  
the little girl wasn't hurt thank god, but she was upset and crying! so we took
him home there and then…after sitting him down and taking to him it turns out
that he attacked her because she was just sitting in his `chair'…no one at that
point had realized that he had focused so much on his chair (Nathan has many
autistic traits)
> >
> > The following day we had a meeting with his teacher and the special needs
teacher etc  they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> >
> > A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because  I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state I
didn't know how to react I didn't know what to say to Nathan I even didn't know
how to punish him as he does not fully understand what he actually did! I think
I need help and some advise…if it was you what would you do in this situation?
> >
> > Sandy  xxx
> >
>
>
> Hey Sandy,
>          I understand what you are going through, even though Earl is not in
school he is around other children alot and still has no speach ability so he
acts out often. Luckily his cousins are older and understand. I say call the
numbers, they may not know about weavers like so many others don't, but this
might prompt them to look into it. And if they evaluate him and look into his
case they'll see that Nathan like so many of our kids, does have autistic like
behaviors. Even if they can't help they may know someone who can. But whatever
you do you have to try.
>
> Sincerley,
> Jenny
>

Hi April...

Thank you for your response to my email you always talk so much sense and I
appreciate your questions as they are so relevant...The FBA you speak of sounds
similar to the Journal we now part take in between the teachers and ourselves of
everything Nathan does at school and at home, which has helped a lot!

You mentioned five disorders of the autistic spectrum? I don't know anything
about autism a part from the obvious traits that everyone knows about, you will
have to tell me more about that April please when you have time x

I don't know what grade means April sorry lol but I can tell you Nathan is now
in year 3 (the year he makes his 1st Holy Communion)he has 3 more years in
primary school than at 11 yrs he will then go to secondary/high school

Nathan did have extra support (a lady used to watch him at play/lunch times) up
until last year when the school claimed that they thought he didn't need it any
more which Paul and I disagreed with at the time but the community paediatrician
said she would like Nathan to have this support re established plus within the
class room also which I think can only benefit Nathan teachers and all other
kids in his class

Thanks again April for your supporting words it helps so much I will keep you
updated

Blessings to you and your family

Sandy  xxx




--- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> Hey Sandy! Sorry things are going a little rough right now. I have been there
so many times with Devon it is not funny. We keep a daily log of his behavior at
school, called a FBA...if you would like more information, ask... Anyways
about the autistic diagnosis...schools get more help and can have different
guide lines if there is an autistic diagnosis. Although they will get the same
supports if the diagnosis is one of the autism spectrum disorders (five
disorders). Devon falls under the PDD-NOS (one of the autism spectrum
disorders) and health impaired category for special education qualification.
> Is Nathan being mainstreamed (in an inclusive setting)? What grade? Does he
have a support aid all day, or does he need one?
> Sorry, I guess I am asking more questions than helping...
> Devon is in first grade, and this is his fifth year of public school (three
years pre-k, then K). Hope to hear from you soon!
> April
>  
>  
>
> --- On Sat, 3/21/09, Sandy <znandra40@...> wrote:
>
>
> From: Sandy <znandra40@...>
> Subject: [WSSA] What should we do???
> To: WSSA@yahoogroups.com
> Date: Saturday, March 21, 2009, 10:20 AM
>
>
>
>
>
>
> I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had happened in school involving Nathan! As you can
imagine we rushed to the school were we were told had `attacked a little girl in
his class! I was filled with horror at the mere thought of it, luckily the
little girl wasn't hurt thank god, but she was upset and crying! so we took him
home there and then…after sitting him down and taking to him it turns out that
he attacked her because she was just sitting in his `chair'…no one at that
point had realized that he had focused so much on his chair (Nathan has many
autistic traits)
>
> The following day we had a meeting with his teacher and the special needs
teacher etc they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
>
> A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state
I didn't know how to react I didn't know what to say to Nathan I even didn't
know how to punish him as he does not fully understand what he actually did! I
think I need help and some advise…if it was you what would you do in this
situation?
>
> Sandy xxx
>

Hi Sandy...

I am so sorry to hear of the difficult time you are having.  Hang in there, it
will get better.  First of all you should find out what services Nathan is able
to get with his current diagnosis.  Here in the states we have what is called an
IEP (Individual Education Plan) that is reviewed yearly by the teachers,
therapists, and parents.  We meet and discuss the services that Abby will get
for the up coming school year.  It is then we decide who is going to do what, if
she will have an aide, or helper, ride the bus, how much time she will spend in
the regular class, what subjects she needs extra help, and what our goals are
for her to achieve that year.  If there is something I think Abby needs, I
demand it.  It is my legal right as a parent to do so.  By law they have to
provide what Abby needs.  I will not sign the IEP until they come to an
agreement with me about Abby.  We did have to add another diagnosis to keep some
of her aide services because she was doing so well.  She was labeled as OMD
(other medical disorder) now they added ADHD, as well.  She is impulsive at
times and has a hard time with change.

When Abby was younger she had even a harder time with change.  We had to always
keep her informed of what was going on ahead of time in order to keep her from
getting upset.  We had her teachers and helpers keep a schedule at Abby's desk
of daily tasks and events.  This way she was able to follow what was going on
and what was going to happen next.  This made her feel like she was "in control"
of the things going to happen.  She did much better with this.  We even fixed a
sheet the teacher would send home to let me know of any special events going to
happen the next day and schedule so I could go over it with her the night
before.  This has gotten much better with her as she has gotten older.  She
still likes to know what is going on, but we can just tell her now and she will
follow along.  But she does get very upset if there is something she wants to do
and they have to cancel it at the last minute.  We are still working thru that.

I think I would call the numbers they gave you and get all the information they
can give.  It is hard to make a decision unless you have all the information. 
If they can not give you the help you need then they may be able to point you in
the right direction.  Find out what your parent rights are.  We have a law here
that parents rights are given before any meeting with the school.  It is
important to know what you can demand, and don't be afraid to ask for it.  The
school needs to give Nathan EVERYTHING he needs to learn and be educated to the
best of his ability.  He does need a helper in the class, to make sure that he
is staying on task and is able to do his work, and anywhere else you think he
needs extra help.

Autism is so broad.  It is PDD (pervasive development disorder) and has a wide
range of severity depending on the characteristics the child shows.  There are
many characteristics that Weaver Syndrome have that are the same as autism. 
When Abby was first diagnosed as developmental delay they thought she had
autism.   There is so much information available online you should be able to
find out what you need to know.  Just remember that Nathan more than likely is
showing just the characteristics of autism, and is really not autistic.  There
is a difference, but you need to do what you have to do in order to get the
services he needs in school.  You can later drop the autism diagnosis or label
if needed.  Also look at sensory defensive disorder, or sensory integration
disorder  and see if this applies to Nathan.  When Abby would get very upset,
when she was younger, we would have to hold her very tight.  She couldn't stand
if you just brushed her skin, the lights would bother her, certain sounds,
elevators, swinging...etc.  We got her a weighted vest that she would wear
during the day for short periods of time or when she would start to get upset. 
It would immediately calm her down.  The pressure on her body would sooth her. 
I know that a lot of children with autism use weighted vests and blankets to
keep them calm.  This might work with Nathan.  Look into that as well.  Abby
grew out of this as she got older.

I hope that I helped some.  Just remember that you do what is best for you and
Nathan.  You know your child better than anyone, and you know what is best for
him.  Don't settle for nothing less than the best!  Prayers are with you.

Greta


--- In WSSA@yahoogroups.com, "Sandy" <znandra40@...> wrote:
>
>
> Hi April...
>
> Thank you for your response to my email you always talk so much sense and I
appreciate your questions as they are so relevant...The FBA you speak of sounds
similar to the Journal we now part take in between the teachers and ourselves of
everything Nathan does at school and at home, which has helped a lot!
>
> You mentioned five disorders of the autistic spectrum? I don't know anything
about autism a part from the obvious traits that everyone knows about, you will
have to tell me more about that April please when you have time x
>
> I don't know what grade means April sorry lol but I can tell you Nathan is now
in year 3 (the year he makes his 1st Holy Communion)he has 3 more years in
primary school than at 11 yrs he will then go to secondary/high school
>
> Nathan did have extra support (a lady used to watch him at play/lunch times)
up until last year when the school claimed that they thought he didn't need it
any more which Paul and I disagreed with at the time but the community
paediatrician said she would like Nathan to have this support re established
plus within the class room also which I think can only benefit Nathan teachers
and all other kids in his class
>
> Thanks again April for your supporting words it helps so much I will keep you
updated
>
> Blessings to you and your family
>
> Sandy  xxx
>
>
>
>
> --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> >
> > Hey Sandy! Sorry things are going a little rough right now. I have been
there so many times with Devon it is not funny. We keep a daily log of his
behavior at school, called a FBA...if you would like more information,
ask... Anyways about the autistic diagnosis...schools get more help and can
have different guide lines if there is an autistic diagnosis. Although they will
get the same supports if the diagnosis is one of the autism spectrum disorders
(five disorders). Devon falls under the PDD-NOS (one of the autism spectrum
disorders) and health impaired category for special education qualification.
> > Is Nathan being mainstreamed (in an inclusive setting)? What grade? Does he
have a support aid all day, or does he need one?
> > Sorry, I guess I am asking more questions than helping...
> > Devon is in first grade, and this is his fifth year of public school (three
years pre-k, then K). Hope to hear from you soon!
> > April
> >  
> >  
> >
> > --- On Sat, 3/21/09, Sandy <znandra40@> wrote:
> >
> >
> > From: Sandy <znandra40@>
> > Subject: [WSSA] What should we do???
> > To: WSSA@yahoogroups.com
> > Date: Saturday, March 21, 2009, 10:20 AM
> >
> >
> >
> >
> >
> >
> > I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had happened in school involving Nathan! As you can
imagine we rushed to the school were we were told had `attacked a little girl in
his class! I was filled with horror at the mere thought of it, luckily the
little girl wasn't hurt thank god, but she was upset and crying! so we took him
home there and then…after sitting him down and taking to him it turns out that
he attacked her because she was just sitting in his `chair'…no one at that
point had realized that he had focused so much on his chair (Nathan has many
autistic traits)
> >
> > The following day we had a meeting with his teacher and the special needs
teacher etc they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> >
> > A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state
I didn't know how to react I didn't know what to say to Nathan I even didn't
know how to punish him as he does not fully understand what he actually did! I
think I need help and some advise…if it was you what would you do in this
situation?
> >
> > Sandy xxx
> >
>

Hi April

I read the link you are right some very interesting facts! there was so many I
could relate too and apply to Nathan and his behaviour I don't know whether to
feel relieved or sad I suppose I feel a bit of both (I do have a tendency to
bury my head) anyway I rang the NSD Nurse and I was told that she is on annual
leave this week but she will ring me next week to arrange a home visit which is
great because although I don't really know what type of help we need I do
realize we need some sort of help...thanks for the support and encouragement
April!

Getting back to the school thing lol…. If Devon is 7 I suppose he would be in
the same year as Nathan year 3 only if Devon is turning 8 before of September
this year if not he would be in year 2

Our kids start Nursery part time at 3 then at 4 they enter reception class full
time (8:45 - 15:00) then year 1 2 3 etc until year 7 when they enter
secondary/high school until year 11 (age 16) when they have the option to leave
school or stay on another year. If they choose to leave they then can either
start work or go to college or university (only if they are clever enough can
they attend university)

Anyway April Il keep you updated on how we get on  Thanks again for all your
help… take care

Sandy   xx







--- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> No problem Sandy. I'm glad I could help, anytime! We all have days like this.
It is nice to have parents to talk to about it, especially ones that can
actually relate!Yes the journal can be very helpful! It should state what was
going on right before the behavior, during and after, along with duration and
consequences. This way if there are any patterns or repetitive issues, I can see
it and help get it fixed.
> Autism is so fascinating to me.
http://www.nimh.nih.gov/health/publications/autism/nimhautismspectrum.pdf
> this link should help answer some of your questions. There are five diagnosis
that make up ASD (Autism Spectrum Disorders); autism, asperger syndrome, rett
syndrome, pervasive developmental delay and
> childhood disintegrative disorder . This link has a description of them all.
If you have any more questions, ask!
> LOL, I have no idea how to interpret your grades either...Devon is 7. He
started pre-school at 3.
> Do you have special education, or is he normal functioning besides behavior? I
guess I am asking, what are his other delays besides behavior?
> Talk with you soon!
>
> --- On Sat, 3/21/09, Sandy <znandra40@...> wrote:
>
>
> From: Sandy <znandra40@...>
> Subject: [WSSA] Re: Sandy
> To: WSSA@yahoogroups.com
> Date: Saturday, March 21, 2009, 6:09 PM
>
>
>
>
>
>
>
> Hi April...
>
> Thank you for your response to my email you always talk so much sense and I
appreciate your questions as they are so relevant...The FBA you speak of sounds
similar to the Journal we now part take in between the teachers and ourselves of
everything Nathan does at school and at home, which has helped a lot!
>
> You mentioned five disorders of the autistic spectrum? I don't know anything
about autism a part from the obvious traits that everyone knows about, you will
have to tell me more about that April please when you have time x
>
> I don't know what grade means April sorry lol but I can tell you Nathan is now
in year 3 (the year he makes his 1st Holy Communion)he has 3 more years in
primary school than at 11 yrs he will then go to secondary/high school
>
> Nathan did have extra support (a lady used to watch him at play/lunch times)
up until last year when the school claimed that they thought he didn't need it
any more which Paul and I disagreed with at the time but the community
paediatrician said she would like Nathan to have this support re established
plus within the class room also which I think can only benefit Nathan teachers
and all other kids in his class
>
> Thanks again April for your supporting words it helps so much I will keep you
updated
>
> Blessings to you and your family
>
> Sandy xxx
>
> --- In WSSA@yahoogroups. com, April Hooper <ahooburg79@ ...> wrote:
> >
> > Hey Sandy! Sorry things are going a little rough right now. I have been
there so many times with Devon it is not funny. We keep a daily log of his
behavior at school, called a FBA...if you would like more information,
ask... Anyways about the autistic diagnosis... schools get more help and can
have different guide lines if there is an autistic diagnosis. Although they will
get the same supports if the diagnosis is one of the autism spectrum disorders
(five disorders). Devon falls under the PDD-NOS (one of the autism spectrum
disorders) and health impaired category for special education qualification.
> > Is Nathan being mainstreamed (in an inclusive setting)? What grade? Does he
have a support aid all day, or does he need one?
> > Sorry, I guess I am asking more questions than helping...
> > Devon is in first grade, and this is his fifth year of public school (three
years pre-k, then K). Hope to hear from you soon!
> > April
> >  
> >  
> >
> > --- On Sat, 3/21/09, Sandy <znandra40@ ..> wrote:
> >
> >
> > From: Sandy <znandra40@ ..>
> > Subject: [WSSA] What should we do???
> > To: WSSA@yahoogroups. com
> > Date: Saturday, March 21, 2009, 10:20 AM
> >
> >
> >
> >
> >
> >
> > I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had happened in school involving Nathan! As you can
imagine we rushed to the school were we were told had `attacked a little girl in
his class! I was filled with horror at the mere thought of it, luckily the
little girl wasn't hurt thank god, but she was upset and crying! so we took him
home there and then…after sitting him down and taking to him it turns out
that he attacked her because she was just sitting in his `chair'…no one at
that point had realized that he had focused so much on his chair (Nathan has
many autistic traits)
> >
> > The following day we had a meeting with his teacher and the special needs
teacher etc they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> >
> > A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because I am frightened of being
rejected because Nathan hasn't a diagnosis for autism they may not help us and
if they don't…well I just don't know what we will do? ….I'm in such
a confused state I didn't know how to react I didn't know what to say to Nathan
I even didn't know how to punish him as he does not fully understand what he
actually did! I think I need help and some advise…if it was you what would
you do in this situation?
> >
> > Sandy xxx
> >
>

Hi Greta

Thanks for your reply it was very informative especially how you described how
things work where you live and how your country approaches things and how
everything just seems to be in place for you to utilise to get the service that
you may need which is wonderful...

Here in the UK I think it works slightly different it also make a difference
which part of the UK you live, different regions offer difference service have
different ways prioritizing who can have what !

for example were I live in Liverpool we were initially referred by our GP to the
hospital … they then referred us to the 'Disability Team' and they decide what
service you can utilize...

just like the numbers I was given by the doctor last week, she did stated that
people with a child with a `diagnosis' of autism get referred to this service,
the doctor also did say they may not help us!

Anyway I rang them this morning and the person I was told to ask for was in fact
on holiday this week but if I ring her next week she may set up a home visit...
fingers crossed

Thanks for all your kind words of encouragement Greta Il keep you up dated on
how we get on! until than take care

Sandy xxx



--- In WSSA@yahoogroups.com, "Greta" <g.lomom@...> wrote:
>
> Hi Sandy...
>
> I am so sorry to hear of the difficult time you are having.  Hang in there, it
will get better.  First of all you should find out what services Nathan is able
to get with his current diagnosis.  Here in the states we have what is called an
IEP (Individual Education Plan) that is reviewed yearly by the teachers,
therapists, and parents.  We meet and discuss the services that Abby will get
for the up coming school year.  It is then we decide who is going to do what, if
she will have an aide, or helper, ride the bus, how much time she will spend in
the regular class, what subjects she needs extra help, and what our goals are
for her to achieve that year.  If there is something I think Abby needs, I
demand it.  It is my legal right as a parent to do so.  By law they have to
provide what Abby needs.  I will not sign the IEP until they come to an
agreement with me about Abby.  We did have to add another diagnosis to keep some
of her aide services because she was doing so well.  She was labeled as OMD
(other medical disorder) now they added ADHD, as well.  She is impulsive at
times and has a hard time with change.
>
> When Abby was younger she had even a harder time with change.  We had to
always keep her informed of what was going on ahead of time in order to keep her
from getting upset.  We had her teachers and helpers keep a schedule at Abby's
desk of daily tasks and events.  This way she was able to follow what was going
on and what was going to happen next.  This made her feel like she was "in
control" of the things going to happen.  She did much better with this.  We even
fixed a sheet the teacher would send home to let me know of any special events
going to happen the next day and schedule so I could go over it with her the
night before.  This has gotten much better with her as she has gotten older. 
She still likes to know what is going on, but we can just tell her now and she
will follow along.  But she does get very upset if there is something she wants
to do and they have to cancel it at the last minute.  We are still working thru
that.
>
> I think I would call the numbers they gave you and get all the information
they can give.  It is hard to make a decision unless you have all the
information.  If they can not give you the help you need then they may be able
to point you in the right direction.  Find out what your parent rights are.  We
have a law here that parents rights are given before any meeting with the
school.  It is important to know what you can demand, and don't be afraid to ask
for it.  The school needs to give Nathan EVERYTHING he needs to learn and be
educated to the best of his ability.  He does need a helper in the class, to
make sure that he is staying on task and is able to do his work, and anywhere
else you think he needs extra help.
>
> Autism is so broad.  It is PDD (pervasive development disorder) and has a wide
range of severity depending on the characteristics the child shows.  There are
many characteristics that Weaver Syndrome have that are the same as autism. 
When Abby was first diagnosed as developmental delay they thought she had
autism.   There is so much information available online you should be able to
find out what you need to know.  Just remember that Nathan more than likely is
showing just the characteristics of autism, and is really not autistic.  There
is a difference, but you need to do what you have to do in order to get the
services he needs in school.  You can later drop the autism diagnosis or label
if needed.  Also look at sensory defensive disorder, or sensory integration
disorder  and see if this applies to Nathan.  When Abby would get very upset,
when she was younger, we would have to hold her very tight.  She couldn't stand
if you just brushed her skin, the lights would bother her, certain sounds,
elevators, swinging...etc.  We got her a weighted vest that she would wear
during the day for short periods of time or when she would start to get upset. 
It would immediately calm her down.  The pressure on her body would sooth her. 
I know that a lot of children with autism use weighted vests and blankets to
keep them calm.  This might work with Nathan.  Look into that as well.  Abby
grew out of this as she got older.
>
> I hope that I helped some.  Just remember that you do what is best for you and
Nathan.  You know your child better than anyone, and you know what is best for
him.  Don't settle for nothing less than the best!  Prayers are with you.
>
> Greta
>
>
> --- In WSSA@yahoogroups.com, "Sandy" <znandra40@> wrote:
> >
> >
> > Hi April...
> >
> > Thank you for your response to my email you always talk so much sense and I
appreciate your questions as they are so relevant...The FBA you speak of sounds
similar to the Journal we now part take in between the teachers and ourselves of
everything Nathan does at school and at home, which has helped a lot!
> >
> > You mentioned five disorders of the autistic spectrum? I don't know anything
about autism a part from the obvious traits that everyone knows about, you will
have to tell me more about that April please when you have time x
> >
> > I don't know what grade means April sorry lol but I can tell you Nathan is
now in year 3 (the year he makes his 1st Holy Communion)he has 3 more years in
primary school than at 11 yrs he will then go to secondary/high school
> >
> > Nathan did have extra support (a lady used to watch him at play/lunch times)
up until last year when the school claimed that they thought he didn't need it
any more which Paul and I disagreed with at the time but the community
paediatrician said she would like Nathan to have this support re established
plus within the class room also which I think can only benefit Nathan teachers
and all other kids in his class
> >
> > Thanks again April for your supporting words it helps so much I will keep
you updated
> >
> > Blessings to you and your family
> >
> > Sandy  xxx
> >
> >
> >
> >
> > --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> > >
> > > Hey Sandy! Sorry things are going a little rough right now. I have been
there so many times with Devon it is not funny. We keep a daily log of his
behavior at school, called a FBA...if you would like more information,
ask... Anyways about the autistic diagnosis...schools get more help and can
have different guide lines if there is an autistic diagnosis. Although they will
get the same supports if the diagnosis is one of the autism spectrum disorders
(five disorders). Devon falls under the PDD-NOS (one of the autism spectrum
disorders) and health impaired category for special education qualification.
> > > Is Nathan being mainstreamed (in an inclusive setting)? What grade? Does
he have a support aid all day, or does he need one?
> > > Sorry, I guess I am asking more questions than helping...
> > > Devon is in first grade, and this is his fifth year of public school
(three years pre-k, then K). Hope to hear from you soon!
> > > April
> > >  
> > >  
> > >
> > > --- On Sat, 3/21/09, Sandy <znandra40@> wrote:
> > >
> > >
> > > From: Sandy <znandra40@>
> > > Subject: [WSSA] What should we do???
> > > To: WSSA@yahoogroups.com
> > > Date: Saturday, March 21, 2009, 10:20 AM
> > >
> > >
> > >
> > >
> > >
> > >
> > > I couple of weeks ago we received a phone call from Nathans school
reporting to us that something serious had happened in school involving Nathan!
As you can imagine we rushed to the school were we were told had `attacked a
little girl in his class! I was filled with horror at the mere thought of it,
luckily the little girl wasn't hurt thank god, but she was upset and crying! so
we took him home there and then…after sitting him down and taking to him it
turns out that he attacked her because she was just sitting in his `chair'…no
one at that point had realized that he had focused so much on his chair (Nathan
has many autistic traits)
> > >
> > > The following day we had a meeting with his teacher and the special needs
teacher etc they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> > >
> > > A week later we had an appointment with community paediatrician and she
gave us 2 phone numbers to ring even though people who get these numbers usually
have a diagnosis (autistic nurse who can put us in touch with various services
that can help with this behaviour) now Iv had these numbers for 2 days and I
still haven't rang them yet… why? probably because I am frightened of being
rejected because Nathan hasn't a diagnosis for autism they may not help us and
if they don't…well I just don't know what we will do? ….I'm in such a
confused state I didn't know how to react I didn't know what to say to Nathan I
even didn't know how to punish him as he does not fully understand what he
actually did! I think I need help and some advise…if it was you what would you
do in this situation?
> > >
> > > Sandy xxx
> > >
> >
>

--- In WSSA@yahoogroups.com, "Sandy" <znandra40@...> wrote:
>
> I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had  happened in school involving Nathan! As you
can imagine we rushed to the school were we were told had `attacked a little
girl in his class! I was filled with horror at the mere thought of it, luckily  
the little girl wasn't hurt thank god, but she was upset and crying! so we took
him home there and then…after sitting him down and taking to him it turns out
that he attacked her because she was just sitting in his `chair'…no one at that
point had realized that he had focused so much on his chair (Nathan has many
autistic traits)
>
> The following day we had a meeting with his teacher and the special needs
teacher etc  they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
>
> A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because  I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state I
didn't know how to react I didn't know what to say to Nathan I even didn't know
how to punish him as he does not fully understand what he actually did! I think
I need help and some advise…if it was you what would you do in this situation?
>
> Sandy  xxx
>
Hello I am the mother of Shane I don't post very much but I felt the urge to do
so this time.  See my Shane has autism also (Aspergers to be exact) and he has
some of the same issues also.  But by getting a true dx it has helped because we
have ABA tutoring ans such and the teachers know what to expect of him.  I know
it is hard to deal with I went through all the same emotions.  I asked God why
did he have to add one more thing to my sons plate.  See Shane as about 10
diffrent diagnosis any where from Weaver's to asthma to low IQ, but then I
realized the reason was God had plans for him.  Anyways what I am trying to say
is get a diagnosis of Autism or PDD and jsut do like we did for Weavers,
research, hit it head on and see if your area has a Walk for Autism group or any
kind of support group (some groups will let you join even before you get a
diagnosis). You may also want to talk to his teachers and make an area in his
class that does belong to him and ask them if the are going to rearrange things
give him warning(like a day or a few hours beforehand) so he can adjust.  We
have to do that even for Dr. appt and such.  It is true they do not adjust well.
Hope it helps
Danielle Auvenshine Georgia USA)
mother of Shane

Hi April

you know I don't really know? Nathans brothers Jonathan 23 and Jamie 18 when
they hit puberty they just seemed to sailed through it apart from the obvious
signs like voice breaking and body hair it just gradual and then it was over.
Evan with my eldest daughter (Iv put all their photos in Nathan album) Jessica
was again gradual and uneventful she didn't have mood swings etc she just seem
to deal with all the changes. Rebecca my 11 year old Iv noticed has just started
puberty and I suspect I will have a few more dramas with her lol

All I have notice with Nathan is a change in his behaviour and his wellbeing he
seems so unhappy more aggressive crying more so angry at times no patients which
I suppose could be subtle symptoms of puberty

Talk to you again very soon take care April

San  xx






--- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> No problem Sandy, glad I could help! This is what this support group is here
for. Greta mentioned that many of the kids with weavers also have autistic
features, kids can have the autistic features (tendencies) and not be autistic,
they can be "autistic like." They will perform some tests and ask you questions,
I am happy you have called, sometimes its th first step that is so scary.
> Devon will be 8 in October, so would be in 2. Kids have to be 5 before
kindergarten starts, then they go to 1st, 2nd, and so on till they pass a tests
in 12th grade. This is new, I never had to pass a test to graduate. The kids are
usually 18 or 19 years old by then. They can then join the service, go to work
or college. This is so interesting for me, thanks for sharing!
> Has Nathan shown any signs of starting puberty? Devon did/was last summer, he
was only 6! It has since stopped completely, all pubic hair fell out and
everything! His bone age advanced by three years during his early puberty!!
Anyways, just thought I would ask. Talk to you later!
> April Hooper
> --- On Mon, 3/23/09, Sandy <znandra40@...> wrote:
>
>
> From: Sandy <znandra40@...>
> Subject: [WSSA] Re: Sandy
> To: WSSA@yahoogroups.com
> Date: Monday, March 23, 2009, 5:21 AM
>
>
>
>
>
>
> Hi April
>
> I read the link you are right some very interesting facts! there was so many I
could relate too and apply to Nathan and his behaviour I don't know whether to
feel relieved or sad I suppose I feel a bit of both (I do have a tendency to
bury my head) anyway I rang the NSD Nurse and I was told that she is on annual
leave this week but she will ring me next week to arrange a home visit which is
great because although I don't really know what type of help we need I do
realize we need some sort of help...thanks for the support and encouragement
April!
>
> Getting back to the school thing lol…. If Devon is 7 I suppose he would be
in the same year as Nathan year 3 only if Devon is turning 8 before of September
this year if not he would be in year 2
>
> Our kids start Nursery part time at 3 then at 4 they enter reception class
full time (8:45 - 15:00) then year 1 2 3 etc until year 7 when they enter
secondary/high school until year 11 (age 16) when they have the option to leave
school or stay on another year. If they choose to leave they then can either
start work or go to college or university (only if they are clever enough can
they attend university)
>
> Anyway April Il keep you updated on how we get on Thanks again for all your
help… take care
>
> Sandy xx
>
> --- In WSSA@yahoogroups. com, April Hooper <ahooburg79@ ...> wrote:
> >
> > No problem Sandy. I'm glad I could help, anytime! We all have days like
this. It is nice to have parents to talk to about it, especially ones that can
actually relate!Yes the journal can be very helpful! It should state what was
going on right before the behavior, during and after, along with duration and
consequences. This way if there are any patterns or repetitive issues, I can see
it and help get it fixed.
> > Autism is so fascinating to me. http://www.nimh. nih.gov/health/
publications/ autism/nimhautis mspectrum. pdf
> > this link should help answer some of your questions. There are five
diagnosis that make up ASD (Autism Spectrum Disorders); autism, asperger
syndrome, rett syndrome, pervasive developmental delay and
> > childhood disintegrative disorder . This link has a description of them all.
If you have any more questions, ask!
> > LOL, I have no idea how to interpret your grades either...Devon is 7. He
started pre-school at 3.
> > Do you have special education, or is he normal functioning besides behavior?
I guess I am asking, what are his other delays besides behavior?
> > Talk with you soon!
> >
> > --- On Sat, 3/21/09, Sandy <znandra40@ ..> wrote:
> >
> >
> > From: Sandy <znandra40@ ..>
> > Subject: [WSSA] Re: Sandy
> > To: WSSA@yahoogroups. com
> > Date: Saturday, March 21, 2009, 6:09 PM
> >
> >
> >
> >
> >
> >
> >
> > Hi April...
> >
> > Thank you for your response to my email you always talk so much sense and I
appreciate your questions as they are so relevant...The FBA you speak of sounds
similar to the Journal we now part take in between the teachers and ourselves of
everything Nathan does at school and at home, which has helped a lot!
> >
> > You mentioned five disorders of the autistic spectrum? I don't know anything
about autism a part from the obvious traits that everyone knows about, you will
have to tell me more about that April please when you have time x
> >
> > I don't know what grade means April sorry lol but I can tell you Nathan is
now in year 3 (the year he makes his 1st Holy Communion)he has 3 more years in
primary school than at 11 yrs he will then go to secondary/high school
> >
> > Nathan did have extra support (a lady used to watch him at play/lunch times)
up until last year when the school claimed that they thought he didn't need it
any more which Paul and I disagreed with at the time but the community
paediatrician said she would like Nathan to have this support re established
plus within the class room also which I think can only benefit Nathan teachers
and all other kids in his class
> >
> > Thanks again April for your supporting words it helps so much I will keep
you updated
> >
> > Blessings to you and your family
> >
> > Sandy xxx
> >
> > --- In WSSA@yahoogroups. com, April Hooper <ahooburg79@ ...> wrote:
> > >
> > > Hey Sandy! Sorry things are going a little rough right now. I have been
there so many times with Devon it is not funny. We keep a daily log of his
behavior at school, called a FBA...if you would like more information,
ask... Anyways about the autistic diagnosis... schools get more help and
can have different guide lines if there is an autistic diagnosis. Although they
will get the same supports if the diagnosis is one of the autism spectrum
disorders (five disorders). Devon falls under the PDD-NOS (one of the autism
spectrum disorders) and health impaired category for special education
qualification.
> > > Is Nathan being mainstreamed (in an inclusive setting)? What grade? Does
he have a support aid all day, or does he need one?
> > > Sorry, I guess I am asking more questions than helping...
> > > Devon is in first grade, and this is his fifth year of public school
(three years pre-k, then K). Hope to hear from you soon!
> > > April
> > >  
> > >  
> > >
> > > --- On Sat, 3/21/09, Sandy <znandra40@ ..> wrote:
> > >
> > >
> > > From: Sandy <znandra40@ ..>
> > > Subject: [WSSA] What should we do???
> > > To: WSSA@yahoogroups. com
> > > Date: Saturday, March 21, 2009, 10:20 AM
> > >
> > >
> > >
> > >
> > >
> > >
> > > I couple of weeks ago we received a phone call from Nathans school
reporting to us that something serious had happened in school involving Nathan!
As you can imagine we rushed to the school were we were told had `attacked a
little girl in his class! I was filled with horror at the mere thought of it,
luckily the little girl wasn't hurt thank god, but she was upset and crying! so
we took him home there and then…after sitting him down and taking
to him it turns out that he attacked her because she was just sitting in his
`chair'…no one at that point had realized that he had focused so
much on his chair (Nathan has many autistic traits)
> > >
> > > The following day we had a meeting with his teacher and the special needs
teacher etc they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> > >
> > > A week later we had an appointment with community paediatrician and she
gave us 2 phone numbers to ring even though people who get these numbers usually
have a diagnosis (autistic nurse who can put us in touch with various services
that can help with this behaviour) now Iv had these numbers for 2 days and I
still haven't rang them yet… why? probably because I am frightened
of being rejected because Nathan hasn't a diagnosis for autism they may not help
us and if they don't…well I just don't know what we will do?
….I'm in such a confused state I didn't know how to react I didn't
know what to say to Nathan I even didn't know how to punish him as he does not
fully understand what he actually did! I think I need help and some
advise…if it was you what would you do in this situation?
> > >
> > > Sandy xxx
> > >
> >
>

Hi Greta

Thanks for your reply it was very informative especially how you described how
things work where you live and how your country approaches things and how
everything just seems to be in place for you to utilise to get the service that
you may need which is wonderful...

Here in the UK I think it works slightly different it also make a difference
which part of the UK you live, different regions offer difference service have
different ways prioritizing who can have what !

for example were I live in Liverpool we were initially referred by our GP to the
hospital … they then referred us to the 'Disability Team' and they decide what
service you can utilize...

just like the numbers I was given by the doctor last week, she did stated that
people with a child with a `diagnosis' of autism get referred to this service,
the doctor also did say they may not help us!

Anyway I rang them this morning and the person I was told to ask for was in fact
on holiday this week but if I ring her next week she may set up a home visit...
fingers crossed

Thanks for all your kind words of encouragement Greta Il keep you up dated on
how we get on! until than take care

Sandy xxx




--- In WSSA@yahoogroups.com, "Greta" <g.lomom@...> wrote:
>
> Hi Sandy...
>
> I am so sorry to hear of the difficult time you are having.  Hang in there, it
will get better.  First of all you should find out what services Nathan is able
to get with his current diagnosis.  Here in the states we have what is called an
IEP (Individual Education Plan) that is reviewed yearly by the teachers,
therapists, and parents.  We meet and discuss the services that Abby will get
for the up coming school year.  It is then we decide who is going to do what, if
she will have an aide, or helper, ride the bus, how much time she will spend in
the regular class, what subjects she needs extra help, and what our goals are
for her to achieve that year.  If there is something I think Abby needs, I
demand it.  It is my legal right as a parent to do so.  By law they have to
provide what Abby needs.  I will not sign the IEP until they come to an
agreement with me about Abby.  We did have to add another diagnosis to keep some
of her aide services because she was doing so well.  She was labeled as OMD
(other medical disorder) now they added ADHD, as well.  She is impulsive at
times and has a hard time with change.
>
> When Abby was younger she had even a harder time with change.  We had to
always keep her informed of what was going on ahead of time in order to keep her
from getting upset.  We had her teachers and helpers keep a schedule at Abby's
desk of daily tasks and events.  This way she was able to follow what was going
on and what was going to happen next.  This made her feel like she was "in
control" of the things going to happen.  She did much better with this.  We even
fixed a sheet the teacher would send home to let me know of any special events
going to happen the next day and schedule so I could go over it with her the
night before.  This has gotten much better with her as she has gotten older. 
She still likes to know what is going on, but we can just tell her now and she
will follow along.  But she does get very upset if there is something she wants
to do and they have to cancel it at the last minute.  We are still working thru
that.
>
> I think I would call the numbers they gave you and get all the information
they can give.  It is hard to make a decision unless you have all the
information.  If they can not give you the help you need then they may be able
to point you in the right direction.  Find out what your parent rights are.  We
have a law here that parents rights are given before any meeting with the
school.  It is important to know what you can demand, and don't be afraid to ask
for it.  The school needs to give Nathan EVERYTHING he needs to learn and be
educated to the best of his ability.  He does need a helper in the class, to
make sure that he is staying on task and is able to do his work, and anywhere
else you think he needs extra help.
>
> Autism is so broad.  It is PDD (pervasive development disorder) and has a wide
range of severity depending on the characteristics the child shows.  There are
many characteristics that Weaver Syndrome have that are the same as autism. 
When Abby was first diagnosed as developmental delay they thought she had
autism.   There is so much information available online you should be able to
find out what you need to know.  Just remember that Nathan more than likely is
showing just the characteristics of autism, and is really not autistic.  There
is a difference, but you need to do what you have to do in order to get the
services he needs in school.  You can later drop the autism diagnosis or label
if needed.  Also look at sensory defensive disorder, or sensory integration
disorder  and see if this applies to Nathan.  When Abby would get very upset,
when she was younger, we would have to hold her very tight.  She couldn't stand
if you just brushed her skin, the lights would bother her, certain sounds,
elevators, swinging...etc.  We got her a weighted vest that she would wear
during the day for short periods of time or when she would start to get upset. 
It would immediately calm her down.  The pressure on her body would sooth her. 
I know that a lot of children with autism use weighted vests and blankets to
keep them calm.  This might work with Nathan.  Look into that as well.  Abby
grew out of this as she got older.
>
> I hope that I helped some.  Just remember that you do what is best for you and
Nathan.  You know your child better than anyone, and you know what is best for
him.  Don't settle for nothing less than the best!  Prayers are with you.
>
> Greta
>
>
> --- In WSSA@yahoogroups.com, "Sandy" <znandra40@> wrote:
> >
> >
> > Hi April...
> >
> > Thank you for your response to my email you always talk so much sense and I
appreciate your questions as they are so relevant...The FBA you speak of sounds
similar to the Journal we now part take in between the teachers and ourselves of
everything Nathan does at school and at home, which has helped a lot!
> >
> > You mentioned five disorders of the autistic spectrum? I don't know anything
about autism a part from the obvious traits that everyone knows about, you will
have to tell me more about that April please when you have time x
> >
> > I don't know what grade means April sorry lol but I can tell you Nathan is
now in year 3 (the year he makes his 1st Holy Communion)he has 3 more years in
primary school than at 11 yrs he will then go to secondary/high school
> >
> > Nathan did have extra support (a lady used to watch him at play/lunch times)
up until last year when the school claimed that they thought he didn't need it
any more which Paul and I disagreed with at the time but the community
paediatrician said she would like Nathan to have this support re established
plus within the class room also which I think can only benefit Nathan teachers
and all other kids in his class
> >
> > Thanks again April for your supporting words it helps so much I will keep
you updated
> >
> > Blessings to you and your family
> >
> > Sandy  xxx
> >
> >
> >
> >
> > --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> > >
> > > Hey Sandy! Sorry things are going a little rough right now. I have been
there so many times with Devon it is not funny. We keep a daily log of his
behavior at school, called a FBA...if you would like more information,
ask... Anyways about the autistic diagnosis...schools get more help and can
have different guide lines if there is an autistic diagnosis. Although they will
get the same supports if the diagnosis is one of the autism spectrum disorders
(five disorders). Devon falls under the PDD-NOS (one of the autism spectrum
disorders) and health impaired category for special education qualification.
> > > Is Nathan being mainstreamed (in an inclusive setting)? What grade? Does
he have a support aid all day, or does he need one?
> > > Sorry, I guess I am asking more questions than helping...
> > > Devon is in first grade, and this is his fifth year of public school
(three years pre-k, then K). Hope to hear from you soon!
> > > April
> > >  
> > >  
> > >
> > > --- On Sat, 3/21/09, Sandy <znandra40@> wrote:
> > >
> > >
> > > From: Sandy <znandra40@>
> > > Subject: [WSSA] What should we do???
> > > To: WSSA@yahoogroups.com
> > > Date: Saturday, March 21, 2009, 10:20 AM
> > >
> > >
> > >
> > >
> > >
> > >
> > > I couple of weeks ago we received a phone call from Nathans school
reporting to us that something serious had happened in school involving Nathan!
As you can imagine we rushed to the school were we were told had `attacked a
little girl in his class! I was filled with horror at the mere thought of it,
luckily the little girl wasn't hurt thank god, but she was upset and crying! so
we took him home there and then…after sitting him down and taking to him it
turns out that he attacked her because she was just sitting in his `chair'…no
one at that point had realized that he had focused so much on his chair (Nathan
has many autistic traits)
> > >
> > > The following day we had a meeting with his teacher and the special needs
teacher etc they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> > >
> > > A week later we had an appointment with community paediatrician and she
gave us 2 phone numbers to ring even though people who get these numbers usually
have a diagnosis (autistic nurse who can put us in touch with various services
that can help with this behaviour) now Iv had these numbers for 2 days and I
still haven't rang them yet… why? probably because I am frightened of being
rejected because Nathan hasn't a diagnosis for autism they may not help us and
if they don't…well I just don't know what we will do? ….I'm in such a
confused state I didn't know how to react I didn't know what to say to Nathan I
even didn't know how to punish him as he does not fully understand what he
actually did! I think I need help and some advise…if it was you what would you
do in this situation?
> > >
> > > Sandy xxx
> > >
> >
>

Hello Danielle its nice to meet you....

I read your reply and your words made me cry and I don't cry often! but I can
just tell that you know what your talking about and that your own experiences
has taken you down a road no one expects to travel down! And you are so
right....

  I have to meet this head on, and find the right organisation that will benefits
Nathan and that will help and educate us because we do need it. I have 5
children from 23 down and I know the parameters of 'normal' are huge but this is
so different its hard to define but I always knew Nathan's behaviour was up and
above what we all consider 'normal' but we just plodded along busy dealing with
all his other problems like his seizure, getting the right boots to support his
ankles etc and so on.

we looked upon his behaviour as little odd even funny at times and its amazing
how quickly a parent can get accustomed to this behaviour. I actually listed on
paper the differences in Nathans behaviour and I was staggered

Here in Liverpool we have a rather distinctive sounding accent as do all my
kids...but Nathan does not have any accent at all! he users a lot of American
words in replace of English words (maybe because of TV) words like garbage
instead of rubbish etc He switches off He was very late talking 3years old when
he 1st started talking. He would and still does line all his toys up. He
develops obsession over different things He is scared of what we consider
'normal sounds' like the hover motorbikes the list is endless!

You also made possibly the most important point of all that all these behaviour
issues we share with our children we should try and get a diagnosis for because
they have Weaver Syndrome! and its the only way of getting a true picture of
what Weaver syndrome really is and what a parent with a newly diagnosed child
can look out for to prepare themselves for their possible future could hold
because when reading anything on Weaver syndrome the behaviour characteristics
are barely mention, if at all. that really needs to be change

Thank you Danielle you will never know just how much you have helped me today
its quite clear to me why God may of chosen you to be the mother of a child with
Weaver's...because you can reach people...Thank you

Sandy  xxx






--- In WSSA@yahoogroups.com, "ddauvenshine" <ddauvenshine@...> wrote:
>
> --- In WSSA@yahoogroups.com, "Sandy" <znandra40@> wrote:
> >
> > I couple of weeks ago we received a phone call from Nathans school reporting
to us that something serious had  happened in school involving Nathan! As you
can imagine we rushed to the school were we were told had `attacked a little
girl in his class! I was filled with horror at the mere thought of it, luckily  
the little girl wasn't hurt thank god, but she was upset and crying! so we took
him home there and then…after sitting him down and taking to him it turns out
that he attacked her because she was just sitting in his `chair'…no one at that
point had realized that he had focused so much on his chair (Nathan has many
autistic traits)
> >
> > The following day we had a meeting with his teacher and the special needs
teacher etc  they reported that even if they move anything around in his class
room it upsets and unsettles him for a few days. To cut a long story short the
school is pushing us to get some sort of diagnosis for autism or aspersers in
relation to Nathans behaviour .
> >
> > A week later we had an appointment with community paediatrician and she gave
us 2 phone numbers to ring even though people who get these numbers usually have
a diagnosis (autistic nurse who can put us in touch with various services that
can help with this behaviour) now Iv had these numbers for 2 days and I still
haven't rang them yet… why? probably because  I am frightened of being rejected
because Nathan hasn't a diagnosis for autism they may not help us and if they
don't…well I just don't know what we will do? ….I'm in such a confused state I
didn't know how to react I didn't know what to say to Nathan I even didn't know
how to punish him as he does not fully understand what he actually did! I think
I need help and some advise…if it was you what would you do in this situation?
> >
> > Sandy  xxx
> >
> Hello I am the mother of Shane I don't post very much but I felt the urge to
do so this time.  See my Shane has autism also (Aspergers to be exact) and he
has some of the same issues also.  But by getting a true dx it has helped
because we have ABA tutoring ans such and the teachers know what to expect of
him.  I know it is hard to deal with I went through all the same emotions.  I
asked God why did he have to add one more thing to my sons plate.  See Shane as
about 10 diffrent diagnosis any where from Weaver's to asthma to low IQ, but
then I realized the reason was God had plans for him.  Anyways what I am trying
to say is get a diagnosis of Autism or PDD and jsut do like we did for Weavers,
research, hit it head on and see if your area has a Walk for Autism group or any
kind of support group (some groups will let you join even before you get a
diagnosis). You may also want to talk to his teachers and make an area in his
class that does belong to him and ask them if the are going to rearrange things
give him warning(like a day or a few hours beforehand) so he can adjust.  We
have to do that even for Dr. appt and such.  It is true they do not adjust well.
> Hope it helps
> Danielle Auvenshine Georgia USA)
> mother of Shane
>

This a question to each and all.....

Recently Nathan was diagnosed with Asparagus, which got me wondering, how many
of our kids with Weaver Syndrome, exhibit or show signs of Autistic
characteristics/trait's within their behaviour

Also just how many have an actual diagnoses? because this just maybe significant
to Weaver Syndrome itself....There doesn't seem to be that much research going
on, I realize the 'few' affected by this disorder does not warrant research or
should I say warrants money to finance research! Maybe we should do our own?

All replies and comments appreciated

With Kind Regards

Sandy x

--- In WSSA@yahoogroups.com, "Sandy" <znandra40@...> wrote:
>
> This a question to each and all.....
>
> Recently Nathan was diagnosed with Asparagus, which got me wondering, how many
of our kids with Weaver Syndrome, exhibit or show signs of Autistic
characteristics/trait's within their behaviour
>
> Also just how many have an actual diagnoses? because this just maybe
significant to Weaver Syndrome itself....There doesn't seem to be that much
research going on, I realize the 'few' affected by this disorder does not
warrant research or should I say warrants money to finance research! Maybe we
should do our own?
>
> All replies and comments appreciated
>
> With Kind Regards
>
> Sandy x
>


Dear Sandy,
             Earl just turned five last week and I have been asked if he was
autistic all his life. Ever since he was a baby he has exhibited behaviors that
are often seen in autistic children. the biggest is his inability to deal with
certain stimuli. his physical therapists had mentioned autism and i know they
did some tests but nothing ever really came from it. but i have also been
thinking about it alot lately, especially with all the coverage on autism these
days. and ur right, maybe we should just research it ourselves!!

Best Wishes,
Jenny