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 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
>

--- 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

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

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!!
>

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!!

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
>

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
> >
>

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
> >
>

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 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
>

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

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

This is a fine mechanism to find others who are facing the same
challenges!  My son, Kendall, is 28.  He works full time at our local
airport as a wheelchair agent and does wonderfully.  We are grateful
for all of the physical therapists, occupational therapists, and
speech therapists, school district special education teachers and
Special Olympics participants that have helped him.  He wasn't thought
to be able to stand or walk without aid - but rides his bike
everywhere and uses the bike and bus to get himself anywhere he wants!
He wasn't thought to be able to speak clear enough to communicate with
people - but has wonderful conversations with airplane passengers.  He
once was an "Information Staff" at a local hospital.
Hang in there, each one of you!  Take full advantage of all the
medical early interventions and you, too, will have a wonderful,
Gentle Giant as a family member!  It takes work; it's all worth it!
Alene of Colorado Springs

--- In WSSA@yahoogroups.com, Selina Regan <reganselina@...> wrote:
>
> Hi sarah
> Welcome to the group.You are properably at a very raw stage at the
moment .but without trying to sound condescending.....hang in there
it definately  does get easier .
> Please  feel free to pick our brains ,not that we know it all ,But
we have all been through those awful new times when you can just feel
so overwhelmed.
> Try to keep positive and do take care of YOU!!
> Regards
> Selina ,Mum to Charlie now almost 7!!and doing fantastically!(well
i think so anyway.Im so proud of him)
>
>
> ________________________________
> From: April <ahooburg79@...>
> To: WSSA@yahoogroups.com
> Sent: Monday, 19 January, 2009 2:42:27
> Subject: [WSSA] Welcome New Member...Sarah!
>
>
> Just wanted to welcome our newest member Sarah to the group.
> Welcome Sarah! She has a two year old and doctors are suspecting
> Weavers.
> You have come to the right place!
> My name is April; I have a 7 year old son with Weaver Syndrome. He
was
> diagnosed at about 14 months. He had many health issues and obvious
> developmental delays, he was sent for therapy at about 9 months of
age.
> I was kind of in denial for awhile, thought of many excuses for the
> delays. I knew he was big...well anyways, thats a long story from
then
> till now. My family has been through a lot and learned a great deal
on
> the way. Any questions you may have or feelings you would like to
> express, please do so. There are many wonderful and knowledgeable
> mothers on here, I am sure someone will be able to help. Hope to
hear
> from you soon!
> Best Wishes
> April
> Mom to Devon, 7
>




Welcome Sarah, my name is Jenny and my son Earl is going to be 5 this
year. It's a long and hard road but talking to the the other mom's
here saved my sanity. I hope it helps you too.
Sincerley,
Jenny mom of Earl

Just wanted to welcome our newest member Sarah to the group.
Welcome Sarah! She has a two year old and doctors are suspecting
Weavers.
You have come to the right place!
My name is April; I have a 7 year old son with Weaver Syndrome. He was
diagnosed at about 14 months. He had many health issues and obvious
developmental delays, he was sent for therapy at about 9 months of age.
I was kind of in denial for awhile, thought of many excuses for the
delays. I knew he was big...well anyways, thats a long story from then
till now. My family has been through a lot and learned a great deal on
the way. Any questions you may have or feelings you would like to
express, please do so. There are many wonderful and knowledgeable
mothers on here, I am sure someone will be able to help. Hope to hear
from you soon!
Best Wishes
April
Mom to Devon, 7

Hello everyone! I hope all is well for you and your families, Devon is
doing good, behavior is still our/his biggest issue. We have been busy
getting ready for Christmas and the New Year. I will be adding some
poems in the files, so when you get a chance, read them. I find when I
am having a hard day, a poem helps, I hope it comforts you as well. I
am also a new "moderator" of this site, so please bare with me while I
figure this all out(I think I may have it down now :), although, time
will tell!) Hope to hear from all of you soon! Best wishes to you all!
April

Dear Members,

As life gets busy and demands more and more of my time, I find that I
need help keeping up with WSSA.

I've chosen a member who has been known to me through WSSA and another
overgrowth syndrome site for about 4 years to assist me with my duties
here to keep WSSA a safe place for all of you.

Please Welcome April as your new Moderator.

If you have any questions, please feel free to contact me or April.

Thank you!

Elizabeth
Owner/WSSA

Hi Selena and the rest of you moms.

We too are getting ready for the holidays.  The kids are excited about
Thanksgiving, this Thurs., and seeing all the family.  I know
Thanksgiving is a US holiday, which is a day to give thanks for what
we have and be with family.  It is also a day to eat a lot of food and
not feel guilty about it.

My kids are all excited about Christmas and Santa coming.  We decorate
our Christmas tree on the evening of Thanksgiving, so the kids are
raring to go.

Here in Kentucky the weather is getting cold, we have already had some
light snow.  The kids are ready to go sledding at the sight of
flurries.  Today it is rainy and gloomy.

Abby is doing great in school.  The 1st nine weeks she scored all A's
and one B, 2nd nine weeks she scored all A's.  We are so proud of her.
  She is still on medication for the ADHD and will most likely be for
the rest of her life.  Her last ultrasounds on her abdomen and her
blood labs were good.  She does get emotional often, but we are
working on that.

Hope everyone is doing well.  Hug those kids and hold them tight.
Cherish the moments with them.

Happy Holidays!!

Greta







--- In WSSA@yahoogroups.com, "reganselina" <reganselina@...> wrote:
>
> Hi Girls
>
> Hope everyone is well and all getting excited about christmas.
> There hasnt been much activity on the site in a few weeks so just
> thought id post a Hi to you all.
> we are well here in cold and wet ireland.
> all my crew are well and counting down the days to santa coming
>
> Charlies surgery has been postponed until after Christmas, which was
> a disappointment .
> He is really in fantastic form and doing so well.It definately gets
> easier as they get older.....so all you mums with little ones out
> there hang on in there , the dust will settle and life will get
> easier!!
>
> I must get organised and post some photos  to show you all what a
> handsome little man he is !!!!
>
> Anyway hope all you little ones are diong well !!
>
> Take care and get posting!!!
> Selina
>

--- In WSSA@yahoogroups.com, "reganselina" <reganselina@...> wrote:
>
> Hi Girls
>
> Hope everyone is well and all getting excited about christmas.
> There hasnt been much activity on the site in a few weeks so just
> thought id post a Hi to you all.
> we are well here in cold and wet ireland.
> all my crew are well and counting down the days to santa coming
>
> Charlies surgery has been postponed until after Christmas, which
was
> a disappointment .
> He is really in fantastic form and doing so well.It definately gets
> easier as they get older.....so all you mums with little ones out
> there hang on in there , the dust will settle and life will get
> easier!!
>
> I must get organised and post some photos  to show you all what a
> handsome little man he is !!!!
>
> Anyway hope all you little ones are diong well !!
>
> Take care and get posting!!!
> Selina
>



> Hi Selina,
            Glad to hear Charlie's well, looking forward to a surgery
is not as much fun as looking forward to a present, but it sounds
like he's being a very brave boy!
             My daughter is already pulling out all the Christmas
decorations so that she can start putting them up on Friday!
             Hope everyone is well and Little Earl and I send our love.
Take care,
    Jenny

Hi Girls

Hope everyone is well and all getting excited about christmas.
There hasnt been much activity on the site in a few weeks so just
thought id post a Hi to you all.
we are well here in cold and wet ireland.
all my crew are well and counting down the days to santa coming

Charlies surgery has been postponed until after Christmas, which was
a disappointment .
He is really in fantastic form and doing so well.It definately gets
easier as they get older.....so all you mums with little ones out
there hang on in there , the dust will settle and life will get
easier!!

I must get organised and post some photos  to show you all what a
handsome little man he is !!!!

Anyway hope all you little ones are diong well !!

Take care and get posting!!!
Selina

--- In WSSA@yahoogroups.com, "April" <ahooburg79@...> wrote:
>
> Hi all. Hope all is going well for everyone. I just wanted to post
and
> tell eveyone Devon will be seven this weekend, my oh my how time
flies!
> I have added Devon's school picture to the photos, he looks SO much
> older! Hope to hear from you all soon, take care!
> April, mom to Devon
>
> PS. Jenny....do you have any recent pics of Earl? It has always
amazed
> me on how much our little boys resemble eachother, they look closer
> than brothers, almost like twins, anyways, I would love to see a
recent
> pic of him. Hope all is well for you and yours!
>




  Hi April
   I posted some pics of earl at his birthday party this may he and
devon do still look alike but now you can see the difference in age
between them. happy early birthday to devon!!!!