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Hi everyone,

My son has Pre B All and down syndrome (5 yrs old) and was diagnosed on Aug 11th. He was on a study but I took him off at the beginning onf interm maintenance because he was hit so hard with the intensified consolidation phase. He has gained his weight back because he now has a feeding tube thanks to side effects of the chemo. He is beginning the delayed intensified phase next week and I am so nervous. Can anyone tell me in detail about their experience through this stage. We went to MD for a second opinion last month and they suggested Denver Children's hospital to keep him on anti viral, antibiotics and antifungal medication through this phase of treatment. They also suggested that if he is hospitalized to keep him through the remainder of this phase. If anyone can share their experience with me to how their child did at this phase and what to expect I would really

appreciate it. Thanks.

Connie Gliott

Never miss a thing. Make your homepage.

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Hi Connie,Sorry to hear that your son was diagnosed with ALL and that he has had such a difficult time. My son Tristan was diagnosed with pre B ALL 10 years ago just after his 4th birthday! He is almost 14 now. He was in POG 9605 and had lots and lots of horrible side effects, many hospital admissions, infections (including bacterial meningitis) stopped eating, etc. etc. Most of that happened the first 6 months of treatment - that was for him, the hardest part (induction and consolidation). Late intensification and continuation (weeks 25-130) were much, much better for him and he stayed pretty well for most of that. He was treated here in Houston at Texas Children's Hospital. I can hardly believe that it's been 10 years since he was diagnosed but I hope I can encourage you when I say that it got much, much better after the fist 6 months. Of course each child is different but I wanted to share our experience with you. To look at Tristan now you would never know all of the things he has been through. I've attached a photo of him with his 3 sisters - not sure if it will come through or not. with Blessings,Thirza Ritter

On Feb 2, 2008, at 1:54 PM, Connie Gliott wrote:Hi everyone,My son has Pre B All and down syndrome (5 yrs old) and was diagnosed on Aug 11th.  He was on a study but I took him off at the beginning onf interm maintenance because he was hit so hard with the intensified consolidation phase.  He has gained his weight back because he now has a feeding tube thanks to side effects of the chemo.  He is beginning the delayed intensified  phase next week and I am so nervous.  Can anyone tell me in detail about their experience through this stage.  We went to MD for a second opinion last month and they suggested Denver Children's hospital to keep him on anti viral, antibiotics and antifungal medication through this phase of treatment.  They also suggested that if he is hospitalized to keep him through the remainder of this phase.  If anyone can share their experience with me to how their child did at this phase and what to expect  I would really appreciate it.  Thanks. Connie GliottNever miss a thing. Make your homepage.

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My son went off treatment in March 07 and was diagnosed Oct. 03, when he was 3. He's 8 now. He had an awful time of it in treatment and, like your son, was hit hard by treatment, became malnourished, and had to have a feeding tube put in during IM. DI was hard, with a couple hospitalizations and a lot of transfusions and neutropenia, but not as bad as IM. He was able to be home through most of it even though he felt bad and was very neutropenic. My best advice is to take a day at a time; it's so hard to predict and is different from kid to kid. I will say that I'm sure the feeding tube saved 's life, and you'll be glad to have it during DI.

Hopes and prayers that does well. I'll post 's website here, it has a journal history of the whole treatment and pictures in the photo page, etc. Feel free to poke around it if that helps at all.

Beth, 's mom

www.caringbridge.org/in/kylefacts

Re: [ ] new to group

Hi everyone,

My son has Pre B All and down syndrome (5 yrs old) and was diagnosed on Aug 11th. He was on a study but I took him off at the beginning onf interm maintenance because he was hit so hard with the intensified consolidation phase. He has gained his weight back because he now has a feeding tube thanks to side effects of the chemo. He is beginning the delayed intensified phase next week and I am so nervous. Can anyone tell me in detail about their experience through this stage. We went to MD for a second opinion last month and they suggested Denver Children's hospital to keep him on anti viral, antibiotics and antifungal medication through this phase of treatment. They also suggested that if he is hospitalized to keep him through the remainder of this phase. If anyone can share their experience with me to how their child did at this phase and what to expect I would really appreciate it. Thanks.

Connie Gliott

Never miss a thing. Make your homepage.

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  • 3 weeks later...

Hi Connie, We joined a study for our daughter in September and so far so good.

The

hopes of the study are to decrease the toxicity of the treatments so she won't

have as

many side effects later on. She's handled the treatment amazingly well so far,

and we're

just finishing up round 4 of six rounds. I wouldn't hesitate to try a study.

Carey, mom to Chelsea, Ds, AML, 2 years old

>

> My son went off treatment in March 07 and was diagnosed Oct. 03, when he

was 3.

He's 8 now. He had an awful time of it in treatment and, like your son, was hit

hard by

treatment, became malnourished, and had to have a feeding tube put in during IM.

DI was

hard, with a couple hospitalizations and a lot of transfusions and neutropenia,

but not as

bad as IM. He was able to be home through most of it even though he felt bad and

was

very neutropenic. My best advice is to take a day at a time; it's so hard to

predict and is

different from kid to kid. I will say that I'm sure the feeding tube saved

's life, and

you'll be glad to have it during DI.

>

> Hopes and prayers that does well. I'll post 's website here, it has a

journal

history of the whole treatment and pictures in the photo page, etc. Feel free to

poke

around it if that helps at all.

>

> Beth, 's mom

> www.caringbridge.org/in/kylefacts

>

>

>

> Re: [ ] new to group

>

>

>

> Hi everyone,

> My son has Pre B All and down syndrome (5 yrs old) and was diagnosed on

Aug

11th. He was on a study but I took him off at the beginning onf interm

maintenance

because he was hit so hard with the intensified consolidation phase. He has

gained his

weight back because he now has a feeding tube thanks to side effects of the

chemo. He is

beginning the delayed

> intensified phase next week and I am so nervous. Can anyone tell me in

detail about

their experience through this stage. We went to MD for a second

opinion last

month and they suggested Denver Children's hospital to keep him on anti viral,

antibiotics

and antifungal medication through this phase of treatment. They also suggested

that if he

is hospitalized to keep him through the remainder of this phase. If anyone can

share their

experience with me to how their child did at this phase and what to expect I

would really

appreciate it. Thanks.

>

> Connie Gliott

>

>

>

>

> -------------------------------------------------------------------

-----------

> Never miss a thing. Make your homepage.

>

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Carey,

Hi there! was diagnosed in August. He just started DI which is his last round of intense treatment. Unfortunately, he is one week into it and was diagnosed yesterday with pnemonia. They started him on antibiotics last night and I am praying they start working here in the next couple of days. I am glad to hear your child has breezed through everyting so far. That is wonderful. had a difficult two week stay in the hospital at the end of consolidation. I was worried I was going to lose him. Although he has pnemonia right now other than the nasty cough he is still doing pretty well and has not run any fevers. I pray he starts getting better before his counts drop anymore. Well welcome to the group. We are Loveland, CO and is treated at Denver Children's Hospital.. Where are you located?

Connie Gliott

's mom 5

Re: [ ] new to group> > > > Hi everyone,> My son has Pre B All and down syndrome (5 yrs old) and was diagnosed on Aug 11th. He was on a study but I took him off at the beginning onf interm maintenance because he was hit so hard with the intensified consolidation phase. He has gained his weight back because he now has a feeding tube thanks to side effects of the chemo. He is beginning the delayed> intensified phase next week and I am so nervous. Can anyone tell me in detail about their experience through this stage. We went to MD for a second opinion last month and they suggested Denver Children's hospital to keep him on anti viral, antibiotics and antifungal medication through this phase of treatment. They also suggested that if he is hospitalized to keep him through the remainder of this phase. If anyone can share their experience

with me to how their child did at this phase and what to expect I would really appreciate it. Thanks.> > Connie Gliott> > > > > ------------ --------- --------- --------- --------- --------- ------------> Never miss a thing. Make your homepage.>

Never miss a thing. Make your homepage.

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  • 10 months later...

Welcome.

My daughter Chloe is almost done with treatment for ALL (March 2 is her OT date) she has had some rough patches during the first year of treatment. The last year has been great, and this past month she has been sick on and off for most of the month, so its been a little rough again. I am looking forward to all of this being over!! Looking forward to getting to know you. Does your son have a Caringbridge or a Care Page?

, Mom to Chloe (age 6 Down Syndrome and Pre B Cell ALL dx 11/30/06 COG AALL-0331 low risk standard arm. 3 more months to go!!!!)

CaringBridge.org/visit/Chloemalena

**************One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)

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Welcome ti the group Dawn. I am , mom to Jimmy. Jimmy had just turned two when he was diagnosed with AML. He will be four on Jan. 4, 2009.

Merry Christmas,

Collick

http://www.caringbridge.org/visit/jimmycollick--- On Mon, 12/22/08, breakofdayinaz <breakofdayinaz@...> wrote:

From: breakofdayinaz <breakofdayinaz@...>Subject: [ ] New to group Date: Monday, December 22, 2008, 12:55 AM

Hi-I just wanted to introduce myself. My husband, Dave, and I have two children. Our oldest, TJ, has DS and was diagnosed with high risk ALL in mid July. He recently turned 4, and is doing okay with his treatments. I know that the incidence of leukemia is higher with DS, but I did not anticipate this diagnosis so early in TJ's life. I am looking forward to being a part of this group.Thank you- Dawn

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Hi and welcome Dawn,My youngest, (w/DS), was diagnosed with AML leukemia just after she turned 2. She is 9 years old now and is over 6 years in remission....Yeah. Treatments are rough, but she is dong great now. From: breakofdayinaz <breakofdayinaz@...>Subject: [ ] New to group Date: Monday, December 22, 2008, 12:55 AM

Hi-

I just wanted to introduce myself. My husband, Dave, and I have two

children. Our oldest, TJ, has DS and was diagnosed with high risk ALL

in mid July. He recently turned 4, and is doing okay with his

treatments. I know that the incidence of leukemia is higher with DS,

but I did not anticipate this diagnosis so early in TJ's life. I am

looking forward to being a part of this group.

Thank you- Dawn

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Hi Dawn,

My son was diagnosed with AML when he was 31 months. He is

now 10.5 and doing wonderfully. I know ALL and AML are different but if you

have any questions please feel free to ask.

From:

[mailto: ] On Behalf

Of breakofdayinaz

Sent: December 21, 2008 9:55 PM

Subject: [ ] New to group

Hi-

I just wanted to introduce myself. My husband, Dave, and I have two

children. Our oldest, TJ, has DS and was diagnosed with high risk ALL

in mid July. He recently turned 4, and is doing okay with his

treatments. I know that the incidence of leukemia is higher with DS,

but I did not anticipate this diagnosis so early in TJ's life. I am

looking forward to being a part of this group.

Thank you- Dawn

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My son has DS was diagnosed with high risk preB ALL 10/29/03. He had a rough time but is now 21 months off treatment and doing well. Hang in there and ask any questions you need. There is also a great ALL-KIDS listserve of parents of kids with ALL. I found it very helpful. Their home page is

www.all-kids.org, and you can sign up there, I think.

Beth

[ ] New to group

Hi-I just wanted to introduce myself. My husband, Dave, and I have two children. Our oldest, TJ, has DS and was diagnosed with high risk ALL in mid July. He recently turned 4, and is doing okay with his treatments. I know that the incidence of leukemia is higher with DS, but I did not anticipate this diagnosis so early in TJ's life. I am looking forward to being a part of this group.Thank you- Dawn

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Hi Dawn,

My name is Ann. My son was diagnosed with ALL when he was 2 1/2. He just finished treatment in August. We're actually at the hospital right now because he gets monthly infusions of IVIG (an immune booster) and will continue until spring.

I'm sorry you had to join our little group but I'm glad you found us. You can read more about at his CaringBridge site: www.caringbridge.org/visit/johnbremer

All my best!

Ann

> > From: breakofdayinaz@...> Date: Mon, 22 Dec 2008 05:55:15 +0000> Subject: [ ] New to group> > Hi-> > I just wanted to introduce myself. My husband, Dave, and I have two > children. Our oldest, TJ, has DS and was diagnosed with high risk ALL > in mid July. He recently turned 4, and is doing okay with his > treatments. I know that the incidence of leukemia is higher with DS, > but I did not anticipate this diagnosis so early in TJ's life. I am > looking forward to being a part of this group.> > Thank you- Dawn> > > > > ------------------------------------> >

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Hello Dawn

Welcome to the group.

I'm mum to (9 1/2, DS) who had pre-B ALL diagnosed in

Oct 2004. He was 5 at the time. has been off treatment for 2

years now and is doing well.

I don't post much, but it's comforting having the group here to

discuss things with.

Cheers,

Chris

Adelaide, Australia

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Hi Dawn

My son , 7 years old, was diagnosed at the end of April with ALL Std. High Risk ( due to MRD at the end of induction). He started Long Term maintenance two weeks ago and is doing well now. He spent three weeks in the hospital during Delayed Intensification and had several other hospital stays but didn't have any serious complications.

Hope your holidays go smoothly and welcome to the group!

Jo

[ ] New to group

Hi-I just wanted to introduce myself. My husband, Dave, and I have two children. Our oldest, TJ, has DS and was diagnosed with high risk ALL in mid July. He recently turned 4, and is doing okay with his treatments. I know that the incidence of leukemia is higher with DS, but I did not anticipate this diagnosis so early in TJ's life. I am looking forward to being a part of this group.Thank you- Dawn

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Hi Dawn,I rarely post but wanted to say hello, welcome, and sorry you have to be here.I'm glad TJ is doing OK with the treatments and pray that he continues to do well.My son, Tristan, (DS) was diagnosed with ALL in February of 1998 and has been off treatment for  8 years - he was 4 when he was diagnosed and is now almost 15 (and shaving - yikes!). He had a rough time but we got through it and honestly I now rarely think about the fact he had leukemia. I hope you will find this group a comfort and an encouragement. with many blessings,Thirza Ritter<><On Dec 21, 2008, at 11:55 PM, breakofdayinaz wrote:Hi-I just wanted to introduce myself. My husband, Dave, and I have two children. Our oldest, TJ, has DS and was diagnosed with high risk ALL in mid July. He recently turned 4, and is doing okay with his treatments. I know that the incidence of leukemia is higher with DS, but I did not anticipate this diagnosis so early in TJ's life. I am looking forward to being a part of this group.Thank you- Dawn

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  • 2 weeks later...

Hi Dawn,

Welcome to the group and Happy New Year. My son, , age 6, was diagnosed with standard risk Pre B ALL 08/11/07. He was on a study, but I took him off because he did so poorly through the consolidation stage. He has had some really rough times and been in and out of the hospital a lot. In fact, he was admitted this morning with an infection at his G-tube site. I hope you find the group full of valuable information on concerns and questions you may have, I know they have been quite valuable to me.

Connie

From: breakofdayinaz <breakofdayinaz@...> Sent: Sunday, December 21, 2008 10:55:15 PMSubject: [ ] New to group

Hi-I just wanted to introduce myself. My husband, Dave, and I have two children. Our oldest, TJ, has DS and was diagnosed with high risk ALL in mid July. He recently turned 4, and is doing okay with his treatments. I know that the incidence of leukemia is higher with DS, but I did not anticipate this diagnosis so early in TJ's life. I am looking forward to being a part of this group.Thank you- Dawn

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  • 6 months later...
  • 1 month later...

hi welcome to the group bell <sheridonsmom@...> wrote:

From: Patty <sheridonsmom@...>Subject: ( ) New to group Date: Sunday, August 30, 2009, 9:52 PM

Hi everyone,I guess it's time for me to get out of the denial stage and start looking for solutions or at least coping mechanisms. Our son, Blaise, who is five hPatty and I have Sheridon 7 RTS and Blaise 5 SPITFIRE

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  • 3 months later...

I have an 8 year old girl. My daughter is also a good reader but has a lot of

social issues. She is growing up a lot and seems to be more interested in big

girl things.

I is rare to find girls on the spectrum.

>

> HI,

>

> My 10 year old daughter was just diagnosed with Asperger's. In some ways

> I am having a hard time accepting it, even though I have suspected it for a

> long time. I have thought yes, she does, then second guessed myself and

> said no she doesn't., because she doesn't seem to fit into the mold. But I

> am realizing that this is a broad area and that very few probably fit into

> the mold.

>

> My daughter has trouble with her writing and fine motor skills, and her

> speech is hard to understand if you do not know her and if she is talking

> really fast which she does most of the time.. Her reading is off the

charts.

> She can read a book in no time flat. She also has trouble with social

> cues. She still tends to like things that are for a younger age, but in the

> past couple of months we have seen a change, and it is like we have a tween

in

> the house. Scary thought..lol.

>

> I look forward to hearing others stories and learning from all of you.

>

>

>

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I also have a 8 year old girl with AS. she tends to want to play with children

much younger than her, unless it is her older sister.

i wish she would show signs of wanting to do more " big girl " things, but its

just not happening yet.

> >

> > HI,

> >

> > My 10 year old daughter was just diagnosed with Asperger's. In some ways

> > I am having a hard time accepting it, even though I have suspected it for a

> > long time. I have thought yes, she does, then second guessed myself and

> > said no she doesn't., because she doesn't seem to fit into the mold. But I

> > am realizing that this is a broad area and that very few probably fit into

> > the mold.

> >

> > My daughter has trouble with her writing and fine motor skills, and her

> > speech is hard to understand if you do not know her and if she is talking

> > really fast which she does most of the time.. Her reading is off the

charts.

> > She can read a book in no time flat. She also has trouble with social

> > cues. She still tends to like things that are for a younger age, but in the

> > past couple of months we have seen a change, and it is like we have a tween

in

> > the house. Scary thought..lol.

> >

> > I look forward to hearing others stories and learning from all of you.

> >

> >

> >

>

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How do you find the balance between "pushing" the AS child to do more age appropriate things and letting them be who they are?

I also have a 8 year old girl with AS. she tends to want to play with children much younger than her, unless it is her older sister.i wish she would show signs of wanting to do more "big girl" things, but its just not happening yet.

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  • 3 months later...
Guest guest

I'm sorry you had to seek us out... but we are here for you. My son who

will be 5 in June just entered Maintenance less than a month ago. The first

month of treatment was hard. He gained 16 lbs on the steroids and we were

inpatient most of the first month due to pain control and cellulitis, port

infection. Nate also had previous airway issues as he had a trach for 6 months

after a severe airway infection (unexplained). The trach came out one week

before he was diagnosed with ALL. After we got through induction, Nate did

really well. We were inpatient only one more time after induction.

Our life saver was Zofran for nausea. It really helped Nate. It is my

understanding that children with DS have a lower risk of relapse. Our kids have

a harder time with the intensity of treatment. A little ray of hope for our

kids with DS in my opinion.

Where do you guys live??? Where are you in treatment?

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Guest guest

Hi Tania,

We had to take DJ in to see the doctor yesterday. He seemed extremely tired and wasn't eating like I am used to seeing him eat. They gave him blood and told us that it is to be expected. The chemo he is getting is VERY intense. We live in Pennsylvania and his treatment is at the Janet Weis Children's Hospital. I too was told that children with DS respond better to treatment. It is a scary road and we pray everyday!!

I am so happy to hear that your son is in the Maintenance phase of treatment! It's always such a good feeling to hear more and more success stories!

From: Tania Kothera <taniabsn@...> Sent: Wed, April 28, 2010 8:30:09 AMSubject: [ ] Re:New to group

I'm sorry you had to seek us out... but we are here for you. My son who will be 5 in June just entered Maintenance less than a month ago. The first month of treatment was hard. He gained 16 lbs on the steroids and we were inpatient most of the first month due to pain control and cellulitis, port infection. Nate also had previous airway issues as he had a trach for 6 months after a severe airway infection (unexplained) . The trach came out one week before he was diagnosed with ALL. After we got through induction, Nate did really well. We were inpatient only one more time after induction.Our life saver was Zofran for nausea. It really helped Nate. It is my understanding that children with DS have a lower risk of relapse. Our kids have a harder time with the intensity of treatment. A little ray of hope for our kids with DS in my opinion.Where do you guys live??? Where are you in treatment?

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  • 4 months later...

Shirley, a lot of what you said sounds so familiar to me. My daughter is 13 and was just diagnosed with AS, and she sounds a lot like DJ. She is getting help at school, thank god, and my husband is very involved so I am counting myself lucky.Welcome to the group. From: shirleycarter80@...Date: Mon, 13 Sep 2010 23:18:52 +0000Subject: ( ) New to Group

Hi all, I'm new to the group. My name is Shirley and my son DJ has Asperger's and CAPD. He's very bright so he could not get accomodations in school. I had to quit to homeschool him. He was just recently diagnosised Aspergers. But, then one has said Expressive Language Disorder. He's 12 years old 7th grade and can be so sweet and loving and then so annoying. He thinks things are funny that just arent. He doesn't play with with anyone. He's in the computer constantly. He hardly sleeps. He has OCD on top of all of this. His dad doesn't help at all. We are divorced. He grips about everything that DJ likes so DJ doesn't ever want to go with dad.

Does this sound familar to anyone? Dad never goes to doc appts so he blames me because DJ goes into a meltdown because he doesn't want to go.

Thanks for listening, Shirley

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  • 3 months later...

Hey neighbor I'm Sandy in Henry County.

We were diagnosed in November with aspergers for my 5 yr old son also. The public school teacher in kindergarten told me she was trained because she read a pamphlet, Her answer was to take away recess for bad behavior, he was only getting 10 minutes once a day anyhow.. sigh... I'm starting my son at Danville's Building Blocks or Center for Pediatric Therapy. We go for an evaluation this week. Who diagnosed your child? someone in Roanoke?

I have to be honest with you, I am disappointed by the lack of help here.

Sandy

In a message dated 12/17/2010 8:20:22 P.M. Eastern Standard Time, jdwnddw@... writes:

Hi, I'm new the group. My four year old son was just diagnosed with Asperger's Syndrome and we are looking for all the information we can get! We live in lin County, VA which is outside of Roanoke, VA. He is in a special needs preschool but in there as a "model" student to other special needs children. We had no idea of his condition but now that we know, a lot of things make more sense to us.He currently doesn't have an IEP and I've heard that lin County is not the easiest place to live with a special needs child. Can anyone who may live in the area give me some advice on schools that are better?Any information will be most appreciated! Merry Christmas.

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Hi Sandy! Your poor little guy getting his recess taken away for something that

he can not help, breaks my heart. I can't imagine a teacher saying they were

trained from a pamphlet! And then to take away his recess....my son is a sensory

seeker so that would be very devastating to him, and only make him more

disruptive in class. I'm sorry to hear that about your son. Jake, my son's

pre-school teacher does have 2 Master's degrees in special education, and has

been very helpful in pointing us in the right direction. We saw Dr. Kerkering in

Roanoke. We really liked her a lot. We took our son last year to UVA, and I have

to admit that I was not impressed with their evaluation. I felt the one in

Roanoke was much more thorough (which surprised me!). The dr at UVA told us we

were looking at ADHD but he was too young to give a diagnosis.

My concern is after my son leaves this teacher, and her special pre-K class

where we go from there. I'm sure not every teacher will be so understanding and

helpful. I've been told by a person who worked in the lin County school

system that getting special servies is like pulling teeth. I really am trying to

get information on area schools to make the right decision, and whether we

should move to another area. I personally would like to homeschool and try to

find social groups for my son.

Let me know what you think about the Danville Center. Merry Christmas

>

> Hey neighbor I'm Sandy in Henry County.

> We were diagnosed in November with aspergers for my 5 yr old son also.

> The public school teacher in kindergarten told me she was trained because

> she read a pamphlet, Her answer was to take away recess for bad behavior, he

> was only getting 10 minutes once a day anyhow.. sigh... I'm starting my

> son at Danville's Building Blocks or Center for Pediatric Therapy. We go

> for an evaluation this week. Who diagnosed your child? someone in Roanoke?

> I have to be honest with you, I am disappointed by the lack of help here.

> Sandy

>

>

> In a message dated 12/17/2010 8:20:22 P.M. Eastern Standard Time,

> jdwnddw@... writes:

>

>

>

>

> Hi, I'm new the group. My four year old son was just diagnosed with

> Asperger's Syndrome and we are looking for all the information we can get! We

> live in lin County, VA which is outside of Roanoke, VA. He is in a

> special needs preschool but in there as a " model " student to other special

needs

> children. We had no idea of his condition but now that we know, a lot of

> things make more sense to us.

>

> He currently doesn't have an IEP and I've heard that lin County is

> not the easiest place to live with a special needs child. Can anyone who may

> live in the area give me some advice on schools that are better?

>

> Any information will be most appreciated! Merry Christmas.

>

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