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
> > >
> >
>