Hello every one:

my son goes to allegro in morristown,
district is not provididng transportation without the harness
i have been transporatation since january
does any body know any advocates or attorneys who works on a sliding
scale,i might need to go to mediation bcoz
my district gave us only 10 minutes to vocalize our concerns and they
left the meeting roon saying that this is it
do we have a case? any body knows people who are taking probono cases?

any help will be highly appreciatable..

Thanks
Asma

--- In Care-to-ShareSupportNetwork@yahoogroups.com, "allyhalps"
<allyhalps@...> wrote:
>
> --- In Care-to-ShareSupportNetwork@yahoogroups.com, "April Larsen"
> <ALarsen65@> wrote:
> >
> > I don't want to step out of line but this similar story was
repeated
> at
> > the SPAN meeting on Basic Rights and the woman named Erin stated
flat
> > out if you request this in writing the study team has to test
your
> > child by law.  But it has to be in writing and the SPAN site has
> basic
> > special needs laws on it you can  use for reference.  As Erin
said,
> > anyone that can read can learn the laws to advocate for their
child.
> >
> > April
> >
> I understand what you are saying. I was not at the SPAN meeting
because
> I never knew about the org. As far as my basic rights, it was
withheld
> until a few days ago. The minute I found out about my son's needs,
I
> was on the internet, talking with other parents, and found out that
> there was a group online that my husband and I could turn to for
help.
> We only want to be steered in the right direction. We're finding
out
> that more parents in our community are at a loss on education and
basic
> rights for these disorders. So I apologize.
>
> Ally
>
Hi April, were you at the span meeting too?   I think the problem
might lie in the fact that This Mom is very intimidated and that
English is not her first language.  Yes, anyone can go and read, once
one is aware that the information is available, but, it is probably
written on a level that is difficult to understand.   I think that
she really needs to get an attorney, and I dont think that a bus
driver is qualified to make a decision.  It also sounds like the
school district has NOT exhausted other measures BEFORE putting a
harness on the child.  I dont think ANY child should be put in
restraints unless it is necessary.   I also dont know who would check
this childs extremities for circulatory compromise, (too tight) while
he is riding in the bus for almost one hour.  When I do restraint
documentation as an RN, I MUST DOCUMENT and ASSESS for any
circulatory problems every 15 minutes.  Anyway, It is sad that a
prisoner in jail is treated better than an autistic child in this
state.   I pray for the Mom from Monday nite, and Erin, and for you
April, I have learned what Pragmatic Semantic Disorder is from you
and I wish you the strength and patience to continue to fight for
him.  Diane

--- In Care-to-ShareSupportNetwork@yahoogroups.com, "April Larsen"
<ALarsen65@...> wrote:
>
> I don't want to step out of line but this similar story was repeated
at
> the SPAN meeting on Basic Rights and the woman named Erin stated flat
> out if you request this in writing the study team has to test your
> child by law.  But it has to be in writing and the SPAN site has
basic
> special needs laws on it you can  use for reference.  As Erin said,
> anyone that can read can learn the laws to advocate for their child.
>
> April
>
I understand what you are saying. I was not at the SPAN meeting because
I never knew about the org. As far as my basic rights, it was withheld
until a few days ago. The minute I found out about my son's needs, I
was on the internet, talking with other parents, and found out that
there was a group online that my husband and I could turn to for help.
We only want to be steered in the right direction. We're finding out
that more parents in our community are at a loss on education and basic
rights for these disorders. So I apologize.

Ally

Hi everyone,

Our April support meeting has been cancelled.  Our next support meeting
will be held Monday, May 14 from 7-9:30 pm.

We hope to see all of you at our speaking engagement featuring Valerie
Powers Smith on April 16 at 7 pm.  See flyer on our website under
events...

Thank you

Tina Rear

Hi Diane/Asma

 

I just tried to call Asma because she has a meeting tomorrow but got her VM.  In a previous email I gave you another advocates name and telephone number and some of my thoughts on the topic at hand.  I left on Asma's VM that she should follow up and read that email and try to reach out to one of the advocates.

 

Unfortunately I am not around allot so counting on me to get all the telephone numbers and information is not going to be very helpful in a crunch.  Anyone can go online and look up Valerie's information to contact her further.

 

Hope that helps!

 

Tina

---

From: Care-to-ShareSupportNetwork@yahoogroups.com [mailto:Care-to-ShareSupportNetwork@yahoogroups.com] On Behalf Of Diane Lang-LaMorticella
Sent: Wednesday, March 28, 2007 2:02 PM
To: Care-to-ShareSupportNetwork@yahoogroups.com
Subject: Re: [Care-to-ShareSupportNetwork] RE : HARNESS

Hi Asma,  I sent you some info about the April 16 meeting in Hillsboro at 7pm.   I used my other email   Camrykid99@earthlink.net   so please open it if you get it!   I always have trouble getting these things to work, my husband is the computer person, I just type away and hope for the best!   I sent it to you twice, in case it didnt work.   The attorney who will be there that date is Valerie Powers Smith,   I think you should ask Tina if she has Valerie's phone number, and I think you should call her.  I hope this whole mess turns out good for you and your family!!  I hope you and your husband are doing well with all this stress!!    Another group is the organization for Autism research   www.reseachautism.org      I am praying for you and your family!  Sincerely, Diane

Asma <asmarehmans@yahoo.com> wrote:

Dear diane:

this is Asma i met u yesterday at span workshop,after i u gave me the
group info ,i have found and joined this group, i am happy to be part
of the group since meeting is on thursday 29 ,i will appreciate if i
can talk to tina via phone since i hardly find time to sit on computer
i can explain her the situation and welcome her helpful suggestions..

God Bless U
Thank u so much for all ur support

Asma

---

Don't pick lemons.
See all the new 2007 cars at Yahoo! Autos.

Dear diane:

this is Asma i met u yesterday at span workshop,after i u gave me the
group info ,i have found and joined this group, i am happy to be part
of the group since meeting is on thursday 29 ,i will appreciate if i
can talk to tina via phone since i hardly find time to sit on computer
i can explain her the situation and welcome her helpful suggestions..

God Bless U
Thank u so much for all ur support

Asma

Dear diane:

this is Asma i met u yesterday at span workshop,after i u gave me the
group info ,i have found and joined this group, i am happy to be part
of the group since meeting is on thursday 29 ,i will appreciate if i
can talk to tina via phone since i hardly find time to sit on computer
i can explain her the situation and welcome her helpful suggestions..

God Bless U
Thank u so much for all ur support

Asma

Dear diane:

this is Asma i met u yesterday at span workshop,after i u gave me the
group info ,i have found and joined this group, i am happy to be part
of the group since meeting is on thursday 29 ,i will appreciate if i
can talk to tina via phone since i hardly find time to sit on computer
i can explain her the situation and welcome her helpful suggestions..

God Bless U
  Thank u so much for all ur support

Asma

And I wanted to point out that our issues with health care insurance
also stem from the soul-less crew at United HealthCare in that they
feel Autism our our son's disorder of Semantic Pragmatic Disorder is
not enough of a medical need for any therapy.

We are in the process of getting two more evaluations completed in time
to submit in a formal appeal.

April

I don't want to step out of line but this similar story was repeated at
the SPAN meeting on Basic Rights and the woman named Erin stated flat
out if you request this in writing the study team has to test your
child by law.  But it has to be in writing and the SPAN site has basic
special needs laws on it you can  use for reference.  As Erin said,
anyone that can read can learn the laws to advocate for their child.

April

Tina this might be a bit out of the way for your family but in S.
Plainfield there are two great spots we found.  Ricochet Gym has for
$110 a gym party for an hour followed by a party room and they put all
your kids gifts in a bag so you don't have to suffer through kids
having a fit while opening them!  You supply the cake and adult
beverages and the place gives you snacks and juice.  We loved it.

Also the American Gymnastics Academy off S. Clinton does specialize in
special needs gym therapy.

I can get you the info - if you wish email me off line to remind me.

April in Piscataway

Patty, with all due resrpect, I dont think it is in your friends best interest for you to gather suggestions and repeat them to her.  As a mother of 2 children, one of whom has special needs, AND having my own chronic medical issue, I can understand your friends feelings.  I truly feel that your friend needs professional support and guidance, like Tina suggested.  Depending on the age of the child, there are several avenues to get this important kind of individual help.   Misinformation now could not only be bad for the child, but also anxiety producing and gut wrenching for the Mom.   Please encourage her to seek professional help, and she will be stronger and better able to help her child.   Diane

Tina Rear <tina@caretosharenj.com> wrote:

Patty

 

Hopefully Kerry's earlier email should help your friend and hopefully provide some guidance and next steps..  As mentioned earlier my intent is for this to be a forum for everyone to get the support they need and deserve, that is why we are here. 

 

What I want to clarify is that sometimes it is easy for people to misconstrue information they receive over email as "the answer" since someone else has done it, instead of taking that information and seeking what Kerry and I both recommended early which is professional support.  It appears that in this instance that is the best support we can provide beside someone to talk to, when they are ready.

 

I want to make sure that if people are posting questions pertaining to a "taser gun" or any other methodology that appears extreme to some, that we are careful about how we promote or deny that type of intervention or any other without the guidance of a professional.  I have been on many chat groups and websites that give good information and allot of bad advice to people and it is hard to know what is appropriate and what is not. 

 

I would hate for someone to have said that someone on the Care-to-Share or any other support network for that matter told them that "it worked for their child" so they did it without consulting a professional and then something happens... this is a fine line that I want to ensure the integrity of for everyone's sake. 

 

I apologize if you did not interpret my intention for caution as a reaction that I did not want to support or help this family, as that was not my intent.  There is a forum in which we need to communicate here and I would hope that is respected and abided by.

 

Respectfully,

 

Tina

---

From: Care-to-ShareSupportNetwork@yahoogroups.com [mailto:Care-to-ShareSupportNetwork@yahoogroups.com] On Behalf Of Patty and Patrick Jokiel
Sent: Tuesday, March 20, 2007 12:12 PM
To: Care-to-ShareSupportNetwork@yahoogroups.com
Subject: Re: [Care-to-ShareSupportNetwork] Behavior emergency

Hi Tina...

As a support group leader myself, I am well aware of the dangers in assuming an expert role when members are seeking guidance on their issues. All I am simply doing is asking for information about what current members have found useful in dealing with similar issues in their own lives in order to pass this information onto my friend - I am not seeking expert advice. My friend is shy and would not feel comfortable discussing her situation with other members of this particular group. As a friend (who hasn't had to deal with behavior concerns like this myself), I was only hoping to hear what other parents have done in similar circumstances and to forward this info. on to my friend. Are we not here to support one another in facing the challenges we encounter in our daily lives?

Patty

On Mar 20, 2007, at 10:46 AM, Tina Rear wrote:

Hi Patty,

Care-to-Share is also a support group located in Somerset County, NJ. If your friend would like to attend our meetings please tell her we would love to have her join us.. Our flyer and meeting schedule are on our Yahoo group. Maybe as a group we can talk through some of the issues that might stem from the behavior and see if we can brainstorm to help them cope with the situation and be able to look outside of the box for solutions..

I would suggest her consulting a behaviorist for some in-home intervention. This situation sounds serious and I would not recommend using anything like what you described based on another parent recommendation without consult of a professional who can monitor the situation and support the family.

A note to all our members- This site is intended to support families, advocates and professionals who support children with special needs, we can offer ideas that have worked for other children, share your experiences,offer information on professionals who can provide medical services and certainly ask for help when you need it. For those of us who are not medical professionals/therapists who have been trained in a specific intervention I would ask that you respond to someone's request for services/support with compassion, information but be clear that any extreme intervention be supported by a professional so that everyone is clear on your role when offering information.

Thank you for your cooperation and for continuing to support one another!

Tina Rear

Moderator

Care-to-Share Support Network

---

From: Care-to-ShareSupportNetwork@yahoogroups.com [mailto:Care-to-ShareSupportNetwork@yahoogroups.com] On Behalf Of pattyjokiel
Sent: Monday, March 19, 2007 9:35 PM
To: Care-to-ShareSupportNetwork@yahoogroups.com
Subject: [Care-to-ShareSupportNetwork] Behavior emergency

Hello Everyone...
I am the local leader of a support group. My own child with ASD is
quite young, but other members of the group have older children. One
such member has a nonverbal highly behavioral son who has just
realized his own strength. He has at times run off in a busy parking
lot and a grocery store. He knows what he desires and is difficult to
urge otherwise. The mother can control him most of the time, but she
is afraid that a seriously dangerous situation would put him in
peril's way. They are seeking information about something (all I
could think of was a taser gun - not that I think this is a reasonable
solution) that could serve as a last resort if no other options would
work in a dangerous situation. Any ideas?
Patty

---

Be a PS3 game guru.
Get your game face on with the latest PS3 news and previews at Yahoo! Games.

Hi everyone,

Does anyone know of any places I might explore for a birthday party?  I
am looking for somewhere low key unlike Boro, Kid Junction, etc.  Any
therapy places that do birthday parties, etc?

Any help would be great!

Thanks
Tina

Patty

 

Hopefully Kerry's earlier email should help your friend and hopefully provide some guidance and next steps..  As mentioned earlier my intent is for this to be a forum for everyone to get the support they need and deserve, that is why we are here. 

 

What I want to clarify is that sometimes it is easy for people to misconstrue information they receive over email as "the answer" since someone else has done it, instead of taking that information and seeking what Kerry and I both recommended early which is professional support.  It appears that in this instance that is the best support we can provide beside someone to talk to, when they are ready.

 

I want to make sure that if people are posting questions pertaining to a "taser gun" or any other methodology that appears extreme to some, that we are careful about how we promote or deny that type of intervention or any other without the guidance of a professional.  I have been on many chat groups and websites that give good information and allot of bad advice to people and it is hard to know what is appropriate and what is not. 

 

I would hate for someone to have said that someone on the Care-to-Share or any other support network for that matter told them that "it worked for their child" so they did it without consulting a professional and then something happens... this is a fine line that I want to ensure the integrity of for everyone's sake. 

 

I apologize if you did not interpret my intention for caution as a reaction that I did not want to support or help this family, as that was not my intent.  There is a forum in which we need to communicate here and I would hope that is respected and abided by.

 

Respectfully,

 

Tina

---

From: Care-to-ShareSupportNetwork@yahoogroups.com [mailto:Care-to-ShareSupportNetwork@yahoogroups.com] On Behalf Of Patty and Patrick Jokiel
Sent: Tuesday, March 20, 2007 12:12 PM
To: Care-to-ShareSupportNetwork@yahoogroups.com
Subject: Re: [Care-to-ShareSupportNetwork] Behavior emergency

Hi Tina...

As a support group leader myself, I am well aware of the dangers in assuming an expert role when members are seeking guidance on their issues. All I am simply doing is asking for information about what current members have found useful in dealing with similar issues in their own lives in order to pass this information onto my friend - I am not seeking expert advice. My friend is shy and would not feel comfortable discussing her situation with other members of this particular group. As a friend (who hasn't had to deal with behavior concerns like this myself), I was only hoping to hear what other parents have done in similar circumstances and to forward this info. on to my friend. Are we not here to support one another in facing the challenges we encounter in our daily lives?

Patty

On Mar 20, 2007, at 10:46 AM, Tina Rear wrote:

Hi Patty,

Care-to-Share is also a support group located in Somerset County, NJ. If your friend would like to attend our meetings please tell her we would love to have her join us.. Our flyer and meeting schedule are on our Yahoo group. Maybe as a group we can talk through some of the issues that might stem from the behavior and see if we can brainstorm to help them cope with the situation and be able to look outside of the box for solutions..

I would suggest her consulting a behaviorist for some in-home intervention. This situation sounds serious and I would not recommend using anything like what you described based on another parent recommendation without consult of a professional who can monitor the situation and support the family.

A note to all our members- This site is intended to support families, advocates and professionals who support children with special needs, we can offer ideas that have worked for other children, share your experiences,offer information on professionals who can provide medical services and certainly ask for help when you need it. For those of us who are not medical professionals/therapists who have been trained in a specific intervention I would ask that you respond to someone's request for services/support with compassion, information but be clear that any extreme intervention be supported by a professional so that everyone is clear on your role when offering information.

Thank you for your cooperation and for continuing to support one another!

Tina Rear

Moderator

Care-to-Share Support Network

---

From: Care-to-ShareSupportNetwork@yahoogroups.com [mailto:Care-to-ShareSupportNetwork@yahoogroups.com] On Behalf Of pattyjokiel
Sent: Monday, March 19, 2007 9:35 PM
To: Care-to-ShareSupportNetwork@yahoogroups.com
Subject: [Care-to-ShareSupportNetwork] Behavior emergency

Hello Everyone...
I am the local leader of a support group. My own child with ASD is
quite young, but other members of the group have older children. One
such member has a nonverbal highly behavioral son who has just
realized his own strength. He has at times run off in a busy parking
lot and a grocery store. He knows what he desires and is difficult to
urge otherwise. The mother can control him most of the time, but she
is afraid that a seriously dangerous situation would put him in
peril's way. They are seeking information about something (all I
could think of was a taser gun - not that I think this is a reasonable
solution) that could serve as a last resort if no other options would
work in a dangerous situation. Any ideas?
Patty

Hello Everyone...
I am the local leader of a support group.  My own child with ASD is
quite young, but other members of the group have older children.  One
such member has a nonverbal highly behavioral son who has just
realized his own strength.  He has at times run off in a busy parking
lot and a grocery store.  He knows what he desires and is difficult to
urge otherwise.  The mother can control him most of the time, but she
is afraid that a seriously dangerous situation would put him in
peril's way.  They are seeking information about something (all I
could think of was a taser gun - not that I think this is a reasonable
solution) that could serve as a last resort if no other options would
work in a dangerous situation.  Any ideas?
Patty

Hello to everyone. I'm new to the group and to all the info about
insurance, school support and the basics. My husband and I need some
help.
As I read, there is insurance nightmare out there & we are not alone.
How do you make the insurance company understand that this is a health
related issue. We have United Health Care and they are not giving us
help or support. The other nightmare we are facing is the school.
Our son is 4 yrs old (& a twin ) he was just diagnosed with slight/low
autism, slight/low asperger's, S.I.D and auditory integration
dysfunction. We asked the school to retest him through the child study
team & were denied. We don't have OT in Sensory because of budget and
funding. I found one & we're taking him to an OT (sensory) on our own
(out of pocket) Now how do we talk to the school district to get the
proper funding/budget and how do you talk insurance "lingo" to get the
support that you need?
There is so much we learning and trying to do for our son, that the
other things(insurnce,schools etc...) just don't help.
Any info or suggestions would be greatly appreciated!
Thank you!!

Thanks Eileen for sharing that.  Part of the reason I was so down is
the fact that my husband's HR rep, Terry did actually speak to them and
went into a meeting to face off on this but above her they upheld the
UHC policy not to include my son's benefit.  This is why I need a
private case to be filed.

April