newbie

September 5, 2008

Hi ,

My daughter also has Lyme but she is just 9 and thankfully she had classic

symptoms and positive blood work. She became sick this summer and just finished

up her antibiotics and thankfully is symptom free. She will have more blood

work in a few weeks but I think we caught things early on.

I started having severe headaches at the age of 20, shortly after

graduating from nursing school and loosing my mom to cancer and thought they

were migraines. I went to a neurologist and after the exam I was told I

probably had an advanced brain tumor. I had a scan and thankfully it showed no

tumor but did show that my skull was extremely thick and that I had a condition

called an Arnold Chiari Malformation. They did a spinal tap and it showed a

pressure of over five times higher then normal. To make a very long story short

I have undergone five brain/skull surgeries, have both a lumbar shunt and a

shunt in my brain. I was also paralyzed on my left side for quite some time

until I finally found a doctor that was willing to treat me (no one wanted to

touch me because I had no insurance and because I had several serious medical

mistakes made on me). I was very fortunate that my symptoms didn't affect me

until I was out of school as I was born with a very rare bone disease that

caused my skull to be really sick. By the time I was 23 I was totally disabled

and not only did my friends stop coming around but my family as well. If it

wasn't for my husband, who back then was just a good friend, I probably would

have been homeless. Thankfully now I am able to walk and have regained full

feeling and strength in my left side. Due to the mistakes made my my first

doctors though I am disabled due to debilitating spine pain. Prior to becoming

disabled though I did work on a Neurosurgical unit. If I can be of any help

please let me know. I do know that there are groups out there for teens with

disabilities if your daughter is interested in that. I know that it helped me

out when I finally found some people online that knew a bit about what I was

going through. If she wanted to chat with me I am more then happy to as well.

Your daughter is so lucky to have such a wonderful, caring mom. Hang in

there.

[ ] Newbie

> Hi! I'm new to this group so I thought I'd just say hello. My

> name is

> and my 16 year old daughter, , has lyme disease. She

> was

> diagnosed in September of 2006 based on 29 symptoms she was showing

> at

> the time. We live in Maine and, because the ELILSA came back

> negative,

> we were unable to have a WEstern Blot done. She was being treated

> in

> Boston by Dr. Sam Donta until recently and now, will be treated by

> Dr.

> Jomes out of Connecticut.

> still has most of the classic lyme symptoms and , recently

> has

> been showing alot of the symptoms for Bartonella. She's missed most

> of

> the last 2 years of school and has lost most of her friends due to

> this

> illness. It's a brutal disease to young people. I would love to

> hear

> from parents of teenagers especially since I am at a total losss

> for

> how to deal with alot of the neurological issues involved. Some

> days

> are just too tough to face even though we do time and again.

> How do you guys deal with the day to day issues from the medical

> and

> lay community regarding this??? has begun to feel like a

> " freak "

> outside her own home and, with the school year approaching, the

> stress

> is really getting to us all....Anyone have any suggestions?

>

September 5, 2008

Im unsure If I already replied to this so...

there are two very good groups for teens, one 'lyme warriors' via health

groups ?moderated by the same Robynn as this?group- and Lymeteens

I know a few of those involved in lymeteens and can give you their emails if you

email me first finrussak@...

reaching out to other teens?living with what they are, helps..

as for the rest--do the best you can and be your child's best advocate

good luck

Finette

Re: [ ] Newbie

Hi ,

My daughter also has Lyme but she is just 9 and thankfully she had classic

symptoms and positive blood work. She became sick this summer and just finished

up her antibiotics and thankfully is symptom free. She will have more blood work

in a few weeks but I think we caught things early on.

I started having severe headaches at the age of 20, shortly after graduating

from nursing school and loosing my mom to cancer and thought they were

migraines. I went to a neurologist and after the exam I was told I probably had

an advanced brain tumor. I had a scan and thankfully it showed no tumor but did

show that my skull was extremely thick and that I had a condition called an

Arnold Chiari Malformation. They did a spinal tap and it showed a pressure of

over five times higher then normal. To make a very long story short I have

undergone five brain/skull surgeries, have both a lumbar shunt and a shunt in my

brain. I was also paralyzed on my left side for quite some time until I finally

found a doctor that was willing to treat me (no one wanted to touch me because I

had no insurance and because I had several serious medical mistakes made on me).

I was very fortunate that my symptoms didn't affect me until I was out of school

as I was born with a very rare bone disease that caused my skull to be really

sick. By the time I was 23 I was totally disabled and not only did my friends

stop coming around but my family as well. If it wasn't for my husband, who back

then was just a good friend, I probably would have been homeless. Thankfully now

I am able to walk and have regained full feeling and strength in my left side.

Due to the mistakes made my my first doctors though I am disabled due to

debilitating spine pain. Prior to becoming disabled though I did work on a

Neurosurgical unit. If I can be of any help please let me know. I do know that

there are groups out there for teens with disabilities if your daughter is

interested in that. I know that it helped me out when I finally found some

people online that knew a bit about what I was going through. If she wanted to

chat with me I am more then happy to as well.

Your daughter is so lucky to have such a wonderful, caring mom. Hang in there.

[ ] Newbie

> Hi! I'm new to this group so I thought I'd just say hello. My

> name is

> and my 16 year old daughter, , has lyme disease. She

> was

> diagnosed in September of 2006 based on 29 symptoms she was showing

> at

> the time. We live in Maine and, because the ELILSA came back

> negative,

> we were unable to have a WEstern Blot done. She was being treated

> in

> Boston by Dr. Sam Donta until recently and now, will be treated by

> Dr.

> Jomes out of Connecticut.

> still has most of the classic lyme symptoms and , recently

> has

> been showing alot of the symptoms for Bartonella. She's missed most

> of

> the last 2 years of school and has lost most of her friends due to

> this

> illness. It's a brutal disease to young people. I would love to

> hear

> from parents of teenagers especially since I am at a total losss

> for

> how to deal with alot of the neurological issues involved. Some

> days

> are just too tough to face even though we do time and again.

> How do you guys deal with the day to day issues from the medical

> and

> lay community regarding this??? has begun to feel like a

> " freak "

> outside her own home and, with the school year approaching, the

> stress

> is really getting to us all....Anyone have any suggestions?

>

October 4, 2008

Hi Cheryl.

Is there any way you could ride the bus with them to see dad and they could ride it with them back? Just work out the $ somehow?

I'm with you.

The idea of them alone on a bus would freak me out.

Robin

From: Cheryl <sweetpeahiker@...>Subject: ( ) Newbie Date: Saturday, October 4, 2008, 4:50 PM

Hi. My name is Cheryl. My daughter was diagnosed with Asperger's,ADD/ADHD, mood and anxiety disorders in July of last year.She is now 14 and her father and I are divorcing. We've been separatednow for 3 years.I have a medical condition that prevents me from driving longdistances. He's been doing the driving back and forth and has beenunderstanding. Now that he has filed for divorce and has a girlfriendin the picture, he wants me to take the responsibility of getting them1/2 way. I have no problem with him taking an extra day's vacation tocompensate for time and no problem with getting less child support oralimony to compensate for money.The biggest issue for me is my 14-year old daughter and her youngersister (age 12) who also has anxiety issues.For those of you here who have Asperger's and for those of you herewho are parents of an Asperger's child, please respond.How

would you feel if you or your Asperger's child was put on a busalone with a younger sibling? What would your anxiety be like? Howwould you feel socially?I'm thinking the anxiety, stress, etc. would be too overwhelming formy children. I appreciate your responses. Thank you.--Cheryl--

October 4, 2008

>

> How would you feel if you or your Asperger's child was put on a bus

> alone with a younger sibling? What would your anxiety be like? How

> would you feel socially?

>

> I'm thinking the anxiety, stress, etc. would be too overwhelming for

> my children. I appreciate your responses. Thank you.

I think it depends on the kid and the bus route. I think my 14yo

aspie would be okay--but he doesn't have attention or hyperactivity

issues, although he does have anxiety issues. But, I don't think he

would find a bus ride stressful since he rides the school bus

everyday. I would definitely have to talk to the driver and have him

watch out for him at least the first time, maybe each time. I imagine

since your daughter has a disability, she may be entitled to sitting

in the front seat or close to it near the driver. What I would worry

about is if the bus goes through low income areas and there are a lot

of questionable people on and around the bus. I'm not sure how I'd

check that out. I guess start out with checking out the bus stations

the bus would leave/arrive/stop at.

Ruth

October 5, 2008

I see a couple of options...but you ex is definitely not thinking about his daughters...he is just being selfish and trying to punish or hurt you.

When you get divorced I would have something put in writing that he is to pick the kids up and he can have them an extra day or deduct some alimony money for his travel expense.

Now there is a couple of things you could do.....

1. Get on the bus with them and take the round trip.

2. Ask a good friend if they could drive you and pay them.

3. Check the yellow pages and newspapers...see if there is a car service...to drive you.

4. Put an ad in the paper and hire your own driver.

I don't think I would put my kids on a bus either alone.

Jan

Jan Rushen

Smile because it is contagious!!!!

From: Cheryl <sweetpeahiker>Subject: ( ) Newbie Date: Saturday, October 4, 2008, 4:50 PM

Hi. My name is Cheryl. My daughter was diagnosed with Asperger's,ADD/ADHD, mood and anxiety disorders in July of last year.She is now 14 and her father and I are divorcing. We've been separatednow for 3 years.I have a medical condition that prevents me from driving longdistances. He's been doing the driving back and forth and has beenunderstanding. Now that he has filed for divorce and has a girlfriendin the picture, he wants me to take the responsibility of getting them1/2 way. I have no problem with him taking an extra day's vacation tocompensate for time and no problem with getting less child support oralimony to compensate for money.The biggest issue for me is my 14-year old daughter and her youngersister (age 12) who also has anxiety issues.For those of you here who have Asperger's and for those of you herewho are parents of an Asperger's child, please respond.How

would you feel if you or your Asperger's child was put on a busalone with a younger sibling? What would your anxiety be like? Howwould you feel socially?I'm thinking the anxiety, stress, etc. would be too overwhelming formy children. I appreciate your responses. Thank you.--Cheryl--

October 5, 2008

My AS son is easily anxious,but he manages bus,train and bus again to get to and from his school and I have given him a cellular,sohe is able to phone /text me at arrival,leave and other situations. Another day he had lost his bus card and wanted me to pick him up. He managed to walk back to where he supposed to have lost the card, looked for it(without success),walked back and waited for me while I got his younger brother from his school.--- Den sön 2008-10-05 skrev and/or Robin Lemke <jrisjs@...>:Från: and/or Robin Lemke <jrisjs@...>Ämne: Re: ( ) NewbieTill: Datum: söndag 5 oktober 2008 03.28

Hi Cheryl.

Is there any way you could ride the bus with them to see dad and they could ride it with them back? Just work out the $ somehow?

I'm with you.

The idea of them alone on a bus would freak me out.

Robin

From: Cheryl <sweetpeahiker>Subject: ( ) Newbie Date: Saturday, October 4, 2008, 4:50 PM

Hi. My name is Cheryl. My daughter was diagnosed with Asperger's,ADD/ADHD, mood and anxiety disorders in July of last year.She is now 14 and her father and I are divorcing. We've been separatednow for 3 years.I have a medical condition that prevents me from driving longdistances. He's been doing the driving back and forth and has beenunderstanding. Now that he has filed for divorce and has a girlfriendin the picture, he wants me to take the responsibility of getting them1/2 way. I have no problem with him taking an extra day's vacation tocompensate for time and no problem with getting less child support oralimony to compensate for money.The biggest issue for me is my 14-year old daughter and her youngersister (age 12) who also has anxiety issues.For those of you here who have Asperger's and for those of you herewho are parents of an Asperger's child, please respond.How

would you feel if you or your Asperger's child was put on a busalone with a younger sibling? What would your anxiety be like? Howwould you feel socially?I'm thinking the anxiety, stress, etc. would be too overwhelming formy children. I appreciate your responses. Thank you.--Cheryl--

Ta semester! - sök efter resor hos Kelkoo. Jämför pris på flygbiljetter och hotellrum: http://www.kelkoo.se/c-169901-resor-biljetter.html

October 5, 2008

Hi Cheryl,

I know exactly what you are dealing with as far as the anxiety

issues. If you have never felt or had anxiety than no one can

possibly know what our kids are going through. I have suffered from

anxiety for years and my son who is an aspie has severe anxiety

issues. He is on medicine for it which helps but doesnt take it all

away. I think anxiety is one of the worst feelins in the world. You

feel so helpless and afraid and out of control. It is a very scary

feeling and for a child to deal with this is so horrible. I know my

son wont ride the bus to school because he is afraid too. I too have

a disability which makes it hard for me to drive long distances. I

dont know if you have anyone that you can carpool with but that is

one idea. I have another mom that picks my son up in the morning and

I pick her son up after school. This works out good for us. You did

mention that there would be another sibling riding on the bus with

him, if this is true then maybe it may be a little easier for your

child to do this. Sometimes if they have a friend or a sibling doing

something with them its not so bad, and once they do it they usually

get over the anxiety as long as they dont have a bad experience with

it. I hope this helps you a little, I dont really know what else to

suggest. Good Luck, (collins mom)

>

> From: Cheryl <sweetpeahiker>

> Subject: ( ) Newbie

>

> Date: Saturday, October 4, 2008, 4:50 PM

>

> Hi. My name is Cheryl. My daughter was diagnosed with Asperger's,

> ADD/ADHD, mood and anxiety disorders in July of last year.

>

> She is now 14 and her father and I are divorcing. We've been

separated

> now for 3 years.

>

> I have a medical condition that prevents me from driving long

> distances. He's been doing the driving back and forth and has been

> understanding. Now that he has filed for divorce and has a

girlfriend

> in the picture, he wants me to take the responsibility of getting

them

> 1/2 way. I have no problem with him taking an extra day's vacation

to

> compensate for time and no problem with getting less child support

or

> alimony to compensate for money.

>

> The biggest issue for me is my 14-year old daughter and her younger

> sister (age 12) who also has anxiety issues.

>

> For those of you here who have Asperger's and for those of you here

> who are parents of an Asperger's child, please respond.

>

> How

> would you feel if you or your Asperger's child was put on a bus

> alone with a younger sibling? What would your anxiety be like? How

> would you feel socially?

>

> I'm thinking the anxiety, stress, etc. would be too overwhelming for

> my children. I appreciate your responses. Thank you.

>

> --Cheryl--

>

> ___________________________________________________

> Sök efter kärleken!

> Hitta din tvillingsjäl på Dejting:

http://ad.doubleclick.net/clk;185753627;24584539;x?

http://se.meetic..net/index.php?mtcmk=148783

>

October 20, 2008

Has the person or child had a hair test to confirm heavy metals?

Make sure they do not have any metal fillings. If they do, those must

be removed by a specially trained dentist first.

Let us a know a little about who will need chelation. Child? Adult? Do

they have fillings? Any vaccines? Has a hair test been done?

The protocol is in the files section for chelation. As are many files

for supplements and other things. Supplements must be used as part of

chelation to provide the body the support it needs.

Pills are what most use. A few use transdermal. suppositories are not

recommended due to the trauma of having to administer them so

frequently. Since we dose on the life of the chelator, this would mean

getting a suppository every three or four hours for three days and two

night. Not a nice thing....oral goes better. Oral would be capsules

that can be opened and mixed into food/drink to administer them.

DMSA, DMPS, and ALA are what you will read about here used sometimes

in combination like dmsa/ala or dmsp/ala.

What has indicated that a heavy liver cleanse is needed?

Liver cleaning is not recommended for heavy metal toxic individuals. I

don't know if your hubby is the one who needs chelation or not. But

it's not something many here have used due to the reason above. Its

too hard on the liver if your metal toxic.

Products like Liver Life, and Milk thistle are great though for

helping liver function. Hulda has good suggestions for liver

cleanses if you choose to pursue them.

Welcome! With more details we can point you to more specific information.

>

> Hi All,

>

> I am new to the group, I am looking into doing a chelation .. I have

NO idea

> where to start. Can someone point me in the direction for a Heavy

Metal

> detox? What products are better? Pills or Suppositories?

>

> My hubby also needs to do a heavy Liver cleaning.. Anyone have any

luck with

> a Liver detox .. we have tired the Liver and gallbladder cleanse but

that

> did not work

>

October 20, 2008

> I am new to the group, I am looking into doing a chelation .. I

have NO idea

> where to start. Can someone point me in the direction for a Heavy

Metal

> detox? What products are better? Pills or Suppositories?

I would recommend that you start by reading this outline:

http://home.earthlink.net/~moriam/Andy_dose_sched.html

> My hubby also needs to do a heavy Liver cleaning.. Anyone have any

luck with

> a Liver detox .. we have tired the Liver and gallbladder cleanse

but that

> did not work

I am curious by what indications you have that it " did not work " .

Generally taking milk thistle tincture is a good thing -- and it is

okay to use for long periods of time (weeks / months). There are

lots of other mild liver helpers, but milk thistle is the biggie, I

think. He may also want to do bowel cleansing and/or kidney

cleansing. I use Dr. Schulze's liver formulas -- but it's not like

I've tried many others and have a clear enough idea of the results to

tell you FROM MY OWN EXPERIENCE that his are best.... LOL.

good wishes,

Moria

>

October 21, 2008

Hi - I live in Hong Kong. Our doc here did studies on ASD kids and the ones

from China are

typically very high in lead (and ones in HK have high mercury). The DAN doc I

saw in LA

helped a mom chelate her adopted child from China at a young age; she said the

kid's metal

excretion on the urine toxic metals collection were the highest the lab had

seen. There are a

lot of toxins over here. If your kid's mineral levels and health are good, you

could do a trial

of DMSA chelation on 4 hour dosing schedule, with something to control yeast

which will

definitely flare up.

February 5, 2009

>

> Where my husband, their NF(natural father), and I are struggling is

> everything we try and work on with both kids for the time we have

> them is totally undone by the lack of parenting with the NM and so

> called boyfriend. Where our concerns have grown with , due

> to beginning of puberty, going to middle school next year,

> underweight to a lack of variety of food, a lack of muscle

> development and toe-walking,this is only the beginning.

This probably isn't what you want to hear, but these problems probably

aren't due to parenting. These are typical symptoms of Asperger and

are not caused by environment. If you really love and want to help

this child, you need to work with the other parents as a team and be

supportive. The four of you should attend school meetings and family

meetings with therapists together. Finger-pointing and working

against the custodial parents is only going to stall the child getting

help. Quite frankly, your and NF's reaction to the NM is very typical

and one I'm sure NM is done with at this point. I know I am. I have

a 14yo with Asperger.

Ruth

February 6, 2009

Welcome to the group! I've gotten some great advice over the years

from this group and others like this on .

I have to chime in that your step-son's behavior and his physical

description sound very typical for someone with AS. AS kids

generally hate to try new things, especially when it comes to food.

What is interesting to me is the variety of food dislikes with AS

kids. My son's friend, for example, eats a peanut butter sandwich

every day for lunch and has done so for years. My son loves pizza,

but won't eat pizza that doesn't have the right kind of cheese or

sauce or isn't the right temperature.

I have 3 kids, 1 with AS and 2 who don't. I parent my AS son much

differently than I do the others. They are all such different

personalities. My son is afraid to swim. He will take a bath, but

won't take a shower, but his sisters love the water and prefer

showers to a bath. My son still has chores, but he does different

chores because some tasks are just too stressful for him because of

his sensory issues. And if he misbehaves, the punishment is

different for him too. I've learned that what works as a punishment

for his sisters just won't work for him.

The middle school years are the toughest for our kids (AS or no AS),

so be prepared for a bumpy ride over the new few years. The social

interactions outside of the classroom are really confusing for AS

kids. And the classwork assignments that ask for opinions and

discussions about feelings will just not make a lot of sense to

someone on the autistic spectrum. My son struggled to keep from

melting down during the school day and then when he got home he

would explode. We switched schools and the tantrums went away. He's

a senior in high school now and is also taking classes at the local

community college and is getting good grades. He still is behind his

peers, but is making progress all the time.

Something to keep in mind is that our AS kids are about 2/3 the

emotional age of their peers so a 15 year old boy with AS is

emotionally 10 years old, although he may be intellectually ahead of

his peers.

So what are your step-son's strengths? I suggest talking to his

birth mother to figure out ways you can work together to help him

get through the next few years. In our case, my son has always been

thin and weak and clumsy, but he loves to hike and run and jump so

we worked with that. We enrolled him in Aikido to help him with his

coordination. The classes were highly structured and so he got

comfortable once he knew the routine. In the middle school years, we

went on a lot of hikes on the weekend and we got him a trampoline so

he could just go and bounce when he got the urge.

Hang in there and keep in touch with the group. This is one of the

few places where you can vent and have people understand exactly

what is going on.

February 7, 2009

Hi Kim,

Welcome to our group!

Eating/Trying new foods can be a very difficult project for some of these kids. My ds (12 yo, hfa) is one of those. He eats pizza by scraping everything off of it first. The only thing I am finding that "works" is to ask him to take one itty bitty bite of a different food at mealtimes. He will do that without a fuss but seldom does he do it twice or think it tastes good enough to want to eat again. So I am really stressing on it. I don't like making a big ordeal over food anyway so it goes against my nature to "deal" with this. But my ds is starting to look like a 3rd world child with the bloated stomach pooching out. It's because all he is eating is bread and starches or any food that is bland. My ds will eat no meat at all and hasn't since he was 2 yo. It is really difficult. Most doc's over the years have not really appreciated the problem. I think they think we are exaggerating or something...

Anyway, I would set up a reward system for taking one bite of new foods on a regular basis. Make it something he can easily "win" at to start with, then you can increase the difficulty of getting prizes or treats as he meets with success. This might encourage him to try new things. One thing I am now doing is that he is learning about the body systems in science class (he e-schools at home) so I have seen him having a lot of interest in this and I have spent a lot of time relating the material to his own body systems. Like now we are doing digestion and I am able to show how the cells need different viatmins and minerals and where we get those, etc.

Do check into school issues - that's a great start. Find out how he is doing with school and what problems he has there, what supports he has in place, if he is successful, making friends, enjoying things, etc. As for not wanting to go out or do new things, that is not uncommon either for some of these kids. I would try easing him out in small doses. Try finding things that would interest him a lot to get involved in. For instance, my ds (now 20 yo, hfa) was nuts about pokemon cards back in the day. So he would go to the local card shop and play in tournaments on the weekend. He never liked going out and still doesn't! But I remember after pokemon died out, he was in to yu-gi-oh and then "Magic, the gathering" cards. So he still plays Magic sometimes.

But if he is into swimming or chess or anything you can interest him in - you can try to find or create a club for kids his age, join a team or take lessons somewhere. Anything from cards to musical instruments to computers...It won't be easy and probably worse since you don't have him very often. It is a tough situation for a lot of us to be in.

You're UniqueJust like everyone else...

( ) Newbie

Hi Everyone!I've spent the last day reading topics and messages with the group and realize we are not alone in this. This is something I have been looking for, parents who can relate to similar situations and their personal advice, whether it works or not.My background: I'm a new step-mom to an 12yo Asperger boy and a 10yo girl. They live with their NM(natural mother) and live with us every other weekend. I have been in their lives for 5 years, they are very accepting of me, I love them like they were my own, however I'm not trying to replace their mom. I'm someone they can rely on and trust and have a great relationship with them, especially the 10yo, step-daughter. Where my husband, their NF(natural father), and I are struggling is everything we try and work on with both kids for the time we have them is totally undone by the lack of parenting with the NM and so called boyfriend. Where our concerns have grown with , due to beginning of puberty, going to middle school next year, underweight to a lack of variety of food, a lack of muscle development and toe-walking,this is only the beginning. I'm becoming more involved in assisting my husband in this decision process, because there hasn't been a sense of urgency to get him the proper help or assistance. It is believed that he does not need any kind of medication, ok to sit and watch shows repetatively, only eat certain things and not try new things, and not try new activities. Both kids do not like to try anything new! When I was their age, we were never dependant on the computer, tv or video games. We were reading, playing outside or games, or playing with our own toys. At this point we are requesting information from the school and see when he was last evaluated and set up a meeting with them, to try and prepare for public middle school or do we find him a charter school? How do we try and incorporate new foods?? For the longest time he would eat pizza by taking the cheese off of it. Now he eats it with the cheese on it. He used to love macaroni and red sauce, however we have now resorted back to plain macaroni and butter. We are fortunate he like milk, of course soda and popcorn chicken and fries. No red meat though. I can't even get him to try a little taste w/o it being 'NO THANK YOU'! Another thing, he continuosly asks or repeats the same things over and over. I'm sorry to babble. I'm hoping for some advice and look forward to writing more and becoming part of the group!Kim

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.233 / Virus Database: 270.10.18/1936 - Release Date: 02/05/09 11:34:00

April 7, 2009

Welcome Carol,I am brian. i am 19 years old an was diagnosed with Aspergers at age 15. I try to adapt to the mainstream world instead of it having to adapt to me. That's what Bill Gates and Vernon (Nobel Prize winner) have to do as they both have Asperger's (Bill Gates not official but plenty of articles online suggest it.)Sincerely, A. WongFrom: carollinares <CarolDE864@...>Subject: ( ) newbie Date: Tuesday, April 7, 2009, 3:32 PM

Hi all! Im Carol and new to the group. Im not new to the struggle. I have a 10 year old Aspie who also has bi-polar and RAD. My DD is creative and challenging and I wouldn't trade her for the world. (Although there are days I'd hand her over for a dime!) I joined the group to connect with other families going through similiar struggles.Im looking to meet/chat with anyone in PA who has an AS child who has trouble maintaining friendships.

April 17, 2009

Hi This group is amazing… highly informative and

completely, 100% supportive. Doesn’t matter how bad of a day you’ve had with

Bay, you can come here and people will “get it”, which feels soooo good

Welcome, hun! I hope you find answers !!

=)

From:

[mailto: ] On

Behalf Of

Sent: Friday, April 17, 2009 12:29 PM

Subject: ( ) newbie

Hi everyone,

I just joined this group on the advice of a friend. My name is and I'm

from Ottawa, Canada.

My son is 12 and we've always had issues with him. He's been diagnosed

with ADHD and ODD. But I'm starting to wonder if there's a possibility that

there's more to it than that, so I'm here to get more information and support.

Looking forward to learning from you

April 17, 2009

Welcome ...this is a great site and great people....post any time and ask anything...we are all open to new ideas and/or problems. This is how we survive...by helping each other....so Welcome.

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: <mayprincess77@...>Subject: ( ) newbie Date: Friday, April 17, 2009, 10:58 AM

Hi everyone,I just joined this group on the advice of a friend. My name is and I'm from Ottawa, Canada.My son is 12 and we've always had issues with him. He's been diagnosed with ADHD and ODD. But I'm starting to wonder if there's a possibility that there's more to it than that, so I'm here to get more information and support.Looking forward to learning from you

April 17, 2009

Thanks for the welcome Jan! I'm looking forward to getting to know everyone.

( ) newbie Date: Friday, April 17, 2009, 10:58 AM

Hi everyone,I just joined this group on the advice of a friend. My name is and I'm from Ottawa, Canada.My son is 12 and we've always had issues with him. He's been diagnosed with ADHD and ODD. But I'm starting to wonder if there's a possibility that there's more to it than that, so I'm here to get more information and support.Looking forward to learning from you

April 23, 2009

Hi Carol! Welcome to the group!

Roxanna

"Suppose you were an idiot. And suppose you were a member of Congress. But I repeat myself." ~ Mark Twain

( ) newbie

Hi all! Im Carol and new to the group. Im not new to the struggle. I have a 10 year old Aspie who also has bi-polar and RAD. My DD is creative and challenging and I wouldn't trade her for the world. (Although there are days I'd hand her over for a dime!) I joined the group to connect with other families going through similiar struggles.Im looking to meet/chat with anyone in PA who has an AS child who has trouble maintaining friendships.

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.45/2045 - Release Date: 04/07/09 06:41:00

April 23, 2009

Welcome !! Feel free to join in the conversation whenever you like!

Roxanna

"Suppose you were an idiot. And suppose you were a member of Congress. But I repeat myself." ~ Mark Twain

( ) newbie

Hi everyone,I just joined this group on the advice of a friend. My name is and I'm from Ottawa, Canada.My son is 12 and we've always had issues with him. He's been diagnosed with ADHD and ODD. But I'm starting to wonder if there's a possibility that there's more to it than that, so I'm here to get more information and support.Looking forward to learning from you

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.59/2064 - Release Date: 04/17/09 07:08:00

May 14, 2009

Hi there and welcome,

I have an 18 yr, old son who has asperger;s syndrome.

you can find alot of useful info. here. Good Luck.

By the way where are you from? We're from Jersey (cental)

Sharon

From: and Dan <danandchelle@...>Subject: ( ) Newbie Date: Thursday, May 14, 2009, 4:40 PM

Helloâ€”

I just wanted to introduce myself to the group. My name is and I have an 8 year-old son diagnosed with High Functioning Autism (I also have two NT boys ages 5 and 2). Thanks for letting me join!

May 15, 2009

Hi ! Welcome to our group!

Roxanna

Autism Happens

( ) Newbie

Helloâ€”

I

just wanted to introduce myself to the group. My name is and I have an

8 year-old son diagnosed with High Functioning

Autism (I also have=2

0two NT boys ages 5 and 2). Thanks for letting me join!

!-- end of AOLMsgPart_2_5be7b6d5-cdd6-448d-b2a3-dbf5b5325e15 -->

We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.

July 20, 2009

Hi ,

Welcome to the group. If 's head is severe I wouldn't wait until 2 mo.

However if it isn't severe, and you are seeing improvement it should be fine to

wait.

As for tummy time - it has its own joys for your daughter to discover ;-) It

helps build upper body strength, and even neck strength. Also it will help her

learn to crawl sooner. Some babies that are only on their backs don't crawl and

go straight to walking. Babies just need to get used to being on their tummies.

Find a colorful mat, or get down on the floor and play with her at eye level.

-christine

sydney, 3.5 yrs, starband grad

>

> Hello,

>

> Our daughter, , was diagnosed with torticollis (left side) and

plagiocephaly. When she was delivered her head was shaped like a cone - she had

been facing down for awhile with her head resting/stuck in the birth canal. The

cone shape went down but left her head mis-shapen. At her 2 month check up the

pediatrician referred us to a physical therapist. We are doing exercises to

correct the tort. and have been educated on other ways to keep off of her

head. We were told that at the 4 month check we could talk about the plag. and

whether or not a helmet is necessary. Is there a reason to wait until the 4

month check up?

> Although we are trying to work on tummy time and do other things off of the

head (there are only so many....) my daughter loves to be on her back to look

and scoot around. I hate denying her this joy! Thanks for any insight/helpful

info. for us.

>

July 20, 2009

Welcome-

Most band/helmet companies do not band until 4 months of age (I think very

rarely maybe 3 months would be the youngest), so that is probably part of the

reason to wait until the 4 month check. In addition, it's best to use this time

for aggressive repositioning to see if you can help correct the shape and avoid

a helmet all together. Unfortunately, that means keeping her up off her head as

much as possible during waking hours, and to position her during sleep so that

she is resting on the non-flat side of her head (and continuously checking on

her during the night to move her head if she switches to the flat side). That

and the stretching and tort exercises should help get some improvement in her

head shape. Whether it will be enough remains to be seen. But if you're going to

go that route, I would suggest taking weekly pictures of her head so you can

compare and contrast and remember where you started as you progress with repo.

I was not told to do aggressive repo with my son, so his head did not improve at

all in the same time frame you're working with. Then we were told he didn't need

a helmet, that it would round out on its own, so we didn't band him at 4 months

old. But after a year went by and there was no more improvement to his head, we

finally banded him at 17 months old, with good results but not as good as if we

had done it when he was 4 months old. So I would suggest committing to the

aggressive repo for a couple of months and if you're still not happy with her

head shape at 4 months old, push for a band. Don't trust that it will round out

on it's own.

Good luck!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5