New- to the group & Aspergers

[Guest guest]

My name is , and I have 3 children. Gillian is our baby- she's almost 9.

Last year, because of a school shutting down, we were re-shuffled to a different

school in the same district.

The school we are at now has been the school that dealt with the tougher

handicapped cases- the kids who needed more 1 on 1 attention, while the cases of

kids who could more easily function were shuffled to other schools in the

district, or kept in the school they were meant to be in.

The school we're in has a ASD teacher on staff, a full resource/sensory room, a

library of books, videos, cd's and tapes on different Autism subjects, etc.

There are several teachers in the school who have had experience teaching in a

classroom that has kids on varying degrees of the autism spectrum. Last year,

Gillian was in 2nd grade with a teacher who had been teaching kids with autism

and aspergers for years. She had 2 highly functioning autistic children and 1

aspergers child in her class with Gilly.

About halfway through the year, she approached us with a video to watch, and

said that while she obviously can't make a diagnosis, or even suggest that we

try to obtain a diagnosis, she felt very strongly that a lot of the problems we

have with Gillian might be due to an undiagnosed Aspergers syndrome.

At that point, before I had a chance to watch the video, I brought it up with

our pediatrician, who was actually brand new to us. He looked at the paperwork

her teacher provided, and immediatly put her on Straterra for ADHD, despite 3

years of teachers all saying that they didn't feel she had the same problems as

children with ADHD.

I had heard of AS, and had briefly looked into it before. That night, I looked

it up again, and couldn't see where they were getting the idea from that she

might have Asperger's. She looks at us- that was my sticking point. She doesn't

seem to ever get stuck on a topic, and if anything, she's overly emotional and

emotive. I've read time and time again that kids with AS tend to speak in a

dull, monotone voice, which is just not the case with Gillian.

When I did have a chance a few days later to go in to the school and watch the

movie, Intricate Minds 2, I was floored. Watching those kids was like watching

not just Gillian, but my older son, as well. The mannerisms were brought

to life for me in a way that reading never did. I realized that while I thought

of the lack of eye contact as something they avoid all together, it was more

that these kids eyes would just constantly be moving around the room. They'd

stop on you, and move around more. Gillian and are both like that.

The mannerisms were very real, and very much reminded me of Gillian- how she

reacts (or over reacts) to things, how she talks about things and just keeps

going. Socially, she's not where she should be. Before that, I called it

socially immature- she's almost 9, but has the social skills of a 4 or 5 year

old in many ways. She has no friends. Or rather, she thinks everyone she meets

is her best friend, while an outsider will realize that these kids are trying to

get away from her.

It's heart breaking watching how kids act with her, and always has been, because

she tries so hard to make friends. When I was asked by her PED in front of

Gillian how many friends she has, I told him honestly that she doesn't have any.

She butted in and said she has lots of friends- because in her mind, she does.

I'm rambling- something I do. Anyway, by the time we started to sort things out,

it was near the end of the school year. The school wanted to have her formally

tested, but thought that the best time to do so would be in the fall when school

starts up again.

We went through meetings, filled out paper work, and waited. Meanwhile, I

convinced her family doctor that I wanted her tested outside the school as well,

because I'm not sure how far a school diagnosis would go, as far as covering her

at a different school, should we move.

The problem with that is that our insurance will not cover a child psychiatrist,

and I can't seem to find a non-child psychiatrist that will see or treat a child

as young as she is. The places I found that will do the required work to test

her want $2000 out of pocket, up front. That's an expense we can't do. Maybe if

we could make payments, but they were adamant that the money had to be paid up

front.

Now that fall is here, they have started doing all sorts of stuff. Gillian is

going to the Autism room twice a week, she's seeing a speech therapist (I am

guessing this is more due to the test, and not actual speech, because she speaks

mostly fine), a counselor, and even a physical therapist.

I really did mean for this to be shorter than it is, so I apologize.

My main questions right now:

1- is there any programs out there that can help with the costs of getting an

independent test done?

2- I read somewhere that sometimes medications such as anti-depressants are

prescribed. How often does this happen? I'm not against meds, but I'm not

exactly pro-med, either. I never gave her the strattera she was prescribed

because I felt that as long as the school felt she didn't need it, there was no

reason to give it to her.

3- Have any of you noticed the genetic link? I ask this because I've had it on

my mind all summer, because I see me in a lot of the things she does, and it

makes me wonder if I'm not the same as her, whether this is what she has or not.

4- What kind of programs are there that can help outside of school? What are the

costs? I've read that a lot of kids tend to regress in the summer (which is

probably true of all kids, but not quite the same), and I don't know how capable

I would be of keeping everything on track by myself.

5- Have any of you found that having a diagnoses helped or hindered at the

school? I've read and heard from people who have had to fight tooth and nail to

make sure their children are getting what the state requires. On the other hand,

I've also been told that it's rare for the school to actually approach you about

something like this, so several people said I probably have an easier road

ahead of me because of it.

6- Is it normal to want to alternate between crying, and joy because there might

actually be an explanation as to why my child is the way she is? Because we

talk about it pretty freely, and she understands what it means, and understands

that just because they are testing her, it doesn't mean she has it. We're open

about it, and most of the time, I'm fine. But typing this? I just want to cry

because I feel so overwhelmed.

[Guest guest]

To answer some of your main questions:

> 1- I wrote to the Director of Special Education for my child's school

district and requested that he pay for the evaluation. I had a

neuropsychologist who works with children picked out and all her credentials and

her price...and he agreed!

>

> 2- Our son was actually prescribed Concerta (for ADHD) and it has helped him

immensely. We were against it for years, but decided to try it and it really

helped him.

>

> 3- Yes, we think there is a genetic link - we are pretty sure his biological

mother and his uncle have Aspbergers.

>

> 4- Our school offers an extended program in the summer - check and see if your

daughter qualifies. There area also Autism camps that your insurance might help

out with.

>

> 5- I believe it's an easier road with a diagnosis....as long as it's the RIGHT

diagnosis and you feel in your gut that it's correct. Otherwise, they are just

trying to fit your child into a neat little box. If your child fits in that

box, it's nice to know they'll be treated accordingly by getting the help and

understanding they need.

>

> 6- We were both relieved and depressed when he was diagnosed. Relieved to

have something to research and read about and " treat " , but depressed that he'd

been sentenced to something with no cure. It's overwhelming sometimes and

sometimes we feel lucky that he doesn't have something else.

Hope that helps! Keep your head up and work this one day at a time!!

>

[Guest guest]

Great response, .

, you are doing all the right things. I don't know where you live, but there really should be some other options on the private testing. I would say keep looking, even if it is in another town, maybe connected with a Univesity. I have never heard of a psychiatrist wanting all payment up front. That's ridiculous! Our insurance (Blue Cross) paid about 1/2 of the $2000 for testing, and we paid the rest over a few months, as the testing was done and the report compiled. It was actually done by a psychologist, but we were referred to a psychiatrist for treatment. And yes, many AS kids do take anti-depressants like Prozac, but it is also used as anti-anxiety medication, since anxiety is a major problem for AS kids.

I know it is overwhelming at first, but it helps to have parents like the people on this list who have a lot of experience. It sounds like your daughter is in a great school, so she has a head start on many other kids. Keep working with them and let us know how things progress.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: Gaskill Straiton <melissadiane75@...>Subject: ( ) Re: New- to the group & Aspergers Date: Monday, September 27, 2010, 5:51 PM

To answer some of your main questions:> 1- I wrote to the Director of Special Education for my child's school district and requested that he pay for the evaluation. I had a neuropsychologist who works with children picked out and all her credentials and her price...and he agreed!> > 2- Our son was actually prescribed Concerta (for ADHD) and it has helped him immensely. We were against it for years, but decided to try it and it really helped him.> > 3- Yes, we think there is a genetic link - we are pretty sure his biological mother and his uncle have Aspbergers.> > 4- Our school offers an extended program in the summer - check and see if your daughter qualifies. There area also Autism camps that your insurance might help out with.> > 5- I believe it's an easier road with a diagnosis....as long as it's the RIGHT diagnosis and you feel in your gut that it's correct. Otherwise,

they are just trying to fit your child into a neat little box. If your child fits in that box, it's nice to know they'll be treated accordingly by getting the help and understanding they need.> > 6- We were both relieved and depressed when he was diagnosed. Relieved to have something to research and read about and "treat", but depressed that he'd been sentenced to something with no cure. It's overwhelming sometimes and sometimes we feel lucky that he doesn't have something else. Hope that helps! Keep your head up and work this one day at a time!!>

[Guest guest]

Hello Suzanne,

May I ask which anti-anxiety med your child takes? My son has a lot of anxiety too. He is only taking Ritalin right now and I think it may be making it worse.

thanks, Cathleen

From: Suzanne Markwood <suzmarkwood@...> Sent: Tue, September 28, 2010 6:24:28 AMSubject: Re: ( ) Re: New- to the group & Aspergers

Great response, .

, you are doing all the right things. I don't know where you live, but there really should be some other options on the private testing. I would say keep looking, even if it is in another town, maybe connected with a Univesity. I have never heard of a psychiatrist wanting all payment up front. That's ridiculous! Our insurance (Blue Cross) paid about 1/2 of the $2000 for testing, and we paid the rest over a few months, as the testing was done and the report compiled. It was actually done by a psychologist, but we were referred to a psychiatrist for treatment. And yes, many AS kids do take anti-depressants like Prozac, but it is also used as anti-anxiety medication, since anxiety is a major problem for AS kids.

I know it is overwhelming at first, but it helps to have parents like the people on this list who have a lot of experience. It sounds like your daughter is in a great school, so she has a head start on many other kids. Keep working with them and let us know how things progress.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: Gaskill Straiton <melissadiane75@...>Subject: ( ) Re: New- to the group & Aspergers Date: Monday, September 27, 2010, 5:51 PM

To answer some of your main questions:> 1- I wrote to the Director of Special Education for my child's school district and requested that he pay for the evaluation. I had a neuropsychologist who works with children picked out and all her credentials and her price...and he agreed!> > 2- Our son was actually prescribed Concerta (for ADHD) and it has helped him immensely. We were against it for years, but decided to try it and it really helped him.> > 3- Yes, we think there is a genetic link - we are pretty sure his biological mother and his uncle have Aspbergers.> > 4- Our school offers an extended program in the summer - check and see if your daughter qualifies. There area also Autism camps that your insurance might help out with.> > 5- I believe it's an easier road with a diagnosis....as long as it's the RIGHT diagnosis and you feel in your gut that it's correct. Otherwise,

they are just trying to fit your child into a neat little box. If your child fits in that box, it's nice to know they'll be treated accordingly by getting the help and understanding they need.> > 6- We were both relieved and depressed when he was diagnosed. Relieved to have something to research and read about and "treat", but depressed that he'd been sentenced to something with no cure. It's overwhelming sometimes and sometimes we feel lucky that he doesn't have something else. Hope that helps! Keep your head up and work this one day at a time!!>

[Guest guest]

My son does take Prozac, a small dose (1/4 tsp.) each morning. He started at age 9, he is almost 11 now. We've seen no side effects, just a decrease in meltdowns and intense anxiety.SuzanneSent on the Sprint® Now Network from my BlackBerry®From: Cathleen Veloria <cathleen.veloria@...>Sender: Date: Tue, 28 Sep 2010 09:48:28 -0700 (PDT)< >Reply Subject: Re: ( ) Re: New- to the group Aspergers Hello Suzanne, May I ask which anti-anxiety med your child takes? My son has a lot of anxiety too. He is only taking Ritalin right now and I think it may be making it worse. thanks, CathleenFrom: Suzanne Markwood <suzmarkwood@...> Sent: Tue, September 28, 2010 6:24:28 AMSubject: Re: ( ) Re: New- to the group & Aspergers Great response, ., you are doing all the right things. I don't know where you live, but there really should be some other options on the private testing. I would say keep looking, even if it is in another town, maybe connected with a Univesity. I have never heard of a psychiatrist wanting all payment up front. That's ridiculous! Our insurance (Blue Cross) paid about 1/2 of the $2000 for testing, and we paid the rest over a few months, as the testing was done and the report compiled. It was actually done by a psychologist, but we were referred to a psychiatrist for treatment. And yes, many AS kids do take anti-depressants like Prozac, but it is also used as anti-anxiety medication, since anxiety is a major problem for AS kids.I know it is overwhelming at first, but it helps to have parents like the people on this list who have a lot of experience. It sounds like your daughter is in a great school, so she has a head start on many other kids. Keep working with them and let us know how things progress.~~~~~~~~~~~~~~~~~~~~~~Suzannesuzmarkwood@...From: Gaskill Straiton <melissadiane75@...>Subject: ( ) Re: New- to the group & Aspergers Date: Monday, September 27, 2010, 5:51 PM To answer some of your main questions:> 1- I wrote to the Director of Special Education for my child's school district and requested that he pay for the evaluation. I had a neuropsychologist who works with children picked out and all her credentials and her price...and he agreed!> > 2- Our son was actually prescribed Concerta (for ADHD) and it has helped him immensely. We were against it for years, but decided to try it and it really helped him.> > 3- Yes, we think there is a genetic link - we are pretty sure his biological mother and his uncle have Aspbergers.> > 4- Our school offers an extended program in the summer - check and see if your daughter qualifies. There area also Autism camps that your insurance might help out with.> > 5- I believe it's an easier road with a diagnosis....as long as it's the RIGHT diagnosis and you feel in your gut that it's correct. Otherwise,they are just trying to fit your child into a neat little box. If your child fits in that box, it's nice to know they'll be treated accordingly by getting the help and understanding they need.> > 6- We were both relieved and depressed when he was diagnosed. Relieved to have something to research and read about and "treat", but depressed that he'd been sentenced to something with no cure. It's overwhelming sometimes and sometimes we feel lucky that he doesn't have something else. Hope that helps! Keep your head up and work this one day at a time!!>

[Guest guest]

Thanks Suzanne. I've seen from these posts a lot of parents trying Prozac with good results.

Cathleen

From: "suzmarkwood@..." <suzmarkwood@...> Sent: Tue, September 28, 2010 11:19:03 AMSubject: Re: ( ) Re: New- to the group & Aspergers

My son does take Prozac, a small dose (1/4 tsp.) each morning. He started at age 9, he is almost 11 now. We've seen no side effects, just a decrease in meltdowns and intense anxiety.Suzanne Sent on the Sprint® Now Network from my BlackBerry®

From: Cathleen Veloria <cathleen.veloria@...>

Sender:

Date: Tue, 28 Sep 2010 09:48:28 -0700 (PDT)

< >

Reply

Subject: Re: ( ) Re: New- to the group Aspergers

Hello Suzanne,

May I ask which anti-anxiety med your child takes? My son has a lot of anxiety too. He is only taking Ritalin right now and I think it may be making it worse.

thanks, Cathleen

From: Suzanne Markwood <suzmarkwood@...> Sent: Tue, September 28, 2010 6:24:28 AMSubject: Re: ( ) Re: New- to the group & Aspergers

Great response, .

, you are doing all the right things. I don't know where you live, but there really should be some other options on the private testing. I would say keep looking, even if it is in another town, maybe connected with a Univesity. I have never heard of a psychiatrist wanting all payment up front. That's ridiculous! Our insurance (Blue Cross) paid about 1/2 of the $2000 for testing, and we paid the rest over a few months, as the testing was done and the report compiled. It was actually done by a psychologist, but we were referred to a psychiatrist for treatment. And yes, many AS kids do take anti-depressants like Prozac, but it is also used as anti-anxiety medication, since anxiety is a major problem for AS kids.

I know it is overwhelming at first, but it helps to have parents like the people on this list who have a lot of experience. It sounds like your daughter is in a great school, so she has a head start on many other kids. Keep working with them and let us know how things progress.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: Gaskill Straiton <melissadiane75@...>Subject: ( ) Re: New- to the group & Aspergers Date: Monday, September 27, 2010, 5:51 PM

To answer some of your main questions:> 1- I wrote to the Director of Special Education for my child's school district and requested that he pay for the evaluation. I had a neuropsychologist who works with children picked out and all her credentials and her price...and he agreed!> > 2- Our son was actually prescribed Concerta (for ADHD) and it has helped him immensely. We were against it for years, but decided to try it and it really helped him.> > 3- Yes, we think there is a genetic link - we are pretty sure his biological mother and his uncle have Aspbergers.> > 4- Our school offers an extended program in the summer - check and see if your daughter qualifies. There area also Autism camps that your insurance might help out with.> > 5- I believe it's an easier road with a diagnosis....as long as it's the RIGHT diagnosis and you feel in your gut that it's correct. Otherwise,

they are just trying to fit your child into a neat little box. If your child fits in that box, it's nice to know they'll be treated accordingly by getting the help and understanding they need.> > 6- We were both relieved and depressed when he was diagnosed. Relieved to have something to research and read about and "treat", but depressed that he'd been sentenced to something with no cure. It's overwhelming sometimes and sometimes we feel lucky that he doesn't have something else. Hope that helps! Keep your head up and work this one day at a time!!>