Introduction

[Guest guest]

Hi Debbie! Welcome to the group. This is a wonderful place for

parental validation and especially for answers to problems we

parents face.

You stated you would like to start a local support group. I am in

the midst of doing that very thing! Here's what I did to get one

going:

I first located the closest Austim chapter and visited one of the

meetings. Those meetings are an hour away from me, have excellent

speakers every month, and are very established with a large group of

parents and professionals. Their meetings are on the 4th Thursday of

every month.

I then contacted the social workers of the local schools as well as

my district special ed department and also the coordinator with a 0-

3 program in my area. I then emailed them the following:

What: Autism Parent Support Group

When: 3rd Thursday of each month

First meeting:

October 18, 2007 7pm

Where: Tom and Kelley (Last Name)

Home address, phone and email address

Topic: What do we hope to achieve?

Childcare will not be provided

(Since many of them don't know me or my situation, I shared my story

but did so as if I were being interviewed. I did this because I

would like to highlight a family of the month as a way to get to

know one another. By doing my own first, it breaks the ice for

others.)

Meet the (our last name)!

After struggling with infertility for 9 years, Tom and Kelley

became parents through the adoption of Noah on February 2, 1994.

Although Noah was sent home with a clean bill of health, 9 days

later he was admitted to the NICU at Children's Memorial Hospital in

Chicago. It was then Tom and Kelley learned Noah had been born with

a rare heart defect; his only survival--a heart transplant. Noah's

parents were told he had one month to live unless a new heart became

available. " Tom and I have a very strong faith in Jesus Christ and

have been able to pray for everything and anything throughout our

lives. " said Kelley " But how could I pray for a new heart when the

answered prayer would result in another child dying? I couldn't. "

On April 12, eight weeks after Noah's diagnosis, a baby girl,

, died in a tragic car accident. Her selfless parents donated

all her organs to science, except her heart which now beats in

Noah's chest. Since his transplant at the age of 2 months old, Noah

hasn't had any sign of rejection or infection. However, he will have

to take multiple medications throughout his life to protect his

heart from rejecting itself.

Noah began PT, OT and speech at (Name of local 0-3 program) when

he was 6 months old and continued through three years old. His

progress was slow but everyone felt it was due to his extensive

medical history. " I remember Noah's physical therapist telling me he

was an enigma " said Kelley. He refused all food which resulted in NG

tube feeding until three years old and G-tube feeding from age 3-

5. " Noah hated the sensation of food in his mouth and would

scream 'Put it in the tube' when it came near his lips. " Kelley

added.

Noah had other behaviors that puzzled his medical team. He

preferred his shadow to toys, memorized and repeated entire videos,

only talked about his special interests and often times seemed as

though he was in another world. When Noah was 8 years old, he was

finally diagnosed with Asperger's Syndrome by a psychologist at

Children's Memorial Hospital in Chicago. Kelley tells of how she was

relieved by the diagnosis because she finally understood

his " language " . She went on to say she had no idea of the magnitude

of what the diagnosis would mean to Noah throughout his life.

Noah is now an 8th grade student at Logan Junior High. Up until

the past year, Noah has remained unaware of his differences.

However, since hitting puberty, he is aware he isn't like other

children. School has become more and more difficult, Noah struggles

with peer interactions, social skills and has become more fearful

of trying new things. Kelley began to reach out to local

professionals but was surprised to find out how little anyone in the

area knows about high functioning autism; especially educators.

After months of searching throughout Illinois for help, Kelley

realized the importance of gathering parents together who have a

child/children on the spectrum. " No one understands the life we and

our children live on a day to day basis. " said Kelley " We need each

other. "

Tom and Kelley have adopted three other children since Noah came

into their lives: (21), Adam (17) and Elaina (8)

That letter is going to be mailed early next week.

I've decided to let the group decide how we will operate. I will

always have a topic that I'll have research but plan to be very

flexible. As for speakers, I plan to go to the Autism chapter

meetings every month and will give this information to those in the

group. I also plan to keep everyone informed about state wide

conferences.

I believe this will be a win-win situation for me and my family as

well as those who will attend. I am excited to hear from other

parents and feel priviledged to be able to bring some good out of

the rough years Tom, Noah and I have shared together.

I hope this helps you! Please keep me informed about your group;

I'll do the same.

Blessings

Kelley

" The shortest bridge between hope and despair is " Thank you Jesus. "

[Guest guest]

Welcome to our group, Tea! Yes, hang on to your eyes when in this group. We do have lulls but then suddenly, everyone will start chatting at once and the posts fly.

There are studies that note problems in the frontal right lobe of the brain in people with autism. That is interesting that they located a cyst in your ds. Will you have to follow up with more scans later to make sure it isn't growing or anything? I'm not that knowledgable about brain cysts. We had a scan done on one of our ds's and he had an abnormal finding in the right frontal lobe - so much so that they repeated the scan so more doc's could examine it. Then they sort of dismissed it all as well. I believe they dismiss these things because they have no clue what it means and no way to actually "fix" it as well. It just "is." I went up and down a roller coaster at the time - this was my child's BRAIN we were discussing, not a lab experiment. lol. It can really stress a parent out.

Anyway, welcome and jump in anytime to the conversation!

RoxannaAutism Happens

( ) Introduction

Been reading messages for a few days now (wow, what a prolific group! *smile*) and thought I should introduce myself.My name is Tea (pronounced like the drink or the golf tool, "tee") and I'm mom to four wonderful boys.My third son was diagnosed two years ago with Asperger's Syndrome. He's currently 9 years old, in grade 4 and mainstreamed at school. My fourth son, youngest, is 7 years old and we're on some waitinglists to get some testing done on him [he has issues, but we haven't pinpointed exactly what they are; at the very least, I know that he isn't neuro-typical, but I can't be more specific at this time]. There's also no doubt in my mind that my husband [father of youngest two] is also an Aspie [but not officially diagnosed].My third son has had a really rough go of things since he was very small. Life has been unusually hard on him. When he was a year old, he was diagnosed with bi-lateral Wilms tumour [cancer in both kidneys] and was treated with chemotherapy, surgery (he only has three-quarters of one kidney now) and radiation. When he was 4, he was diagnosed with a focal seizure disorder [benign Rolandic seizures, or BECTS (benign epilepsy in children with centro-temporal spikes). He was diagnosed with Asperger's Syndrome when he was 7. He also has a slight twisting of the spine due to cancer treatments and we've also been told that he might also have some mild neuropathy due to treatment as well. Due to his medical history and behaviour issues, I did insist on him being seen by a neurologist and asked for an MRI of his brain as I was concerned about growths (he has the WT1 gene; genetic Wilms [his father had the same cancer when he was a year old]) and/or structural abnormalities that might have been contributing to his behaviour. MRI shows that he has an Arachnoid cyst on the surface of his brain on the right side (same side that the EEG showed activity that led to the Rolandic seizure diagnosis) that's about an inch by and inch and a half in size. I have been told by the neurologist and two neurosurgeons that the cyst is an incidental finding and has absolutely nothing to do with his behaviours. I must admit that I don't entirely believe that [i mean, it's quite a coincidence that I ask for a scan as I'm concerned about brain growths/abnormalities, they actually find one but then say it's just a coincidence and not related]. A good friend of mine, in her 40s, was diagnosed as being Aspie a couple of years ago. She recently went in and had a CT done of her head [they were looking for something else]. Her scan results also showed that the right side of her brain was "abnormal." Thankfully, she is aware of everything that's been going on with my son so we were actually able to have a good laugh over her results and she wasn't "frightened" by it.On paper, my son looks a complete mess. In real life, he's doing VERY well. I'd have to say that sensory issues/anxiety are probably our biggest hurdles at the moment. But he goes to a wonderful school and gets lots of support and understanding there.Oh, we live on the Wet Coast of Canada.Nice meeting all of you and hope that I can contribute meaningfully to the group.Sincerely,Tea

[Guest guest]

Welcome Tea!

( ) Introduction

Been reading messages for a few days now (wow, what a prolific group! *smile*) and thought I should introduce myself.My name is Tea (pronounced like the drink or the golf tool, "tee") and I'm mom to four wonderful boys.My third son was diagnosed two years ago with Asperger's Syndrome. He's currently 9 years old, in grade 4 and mainstreamed at school. My fourth son, youngest, is 7 years old and we're on some waitinglists to get some testing done on him [he has issues, but we haven't pinpointed exactly what they are; at the very least, I know that he isn't neuro-typical, but I can't be more specific at this time]. There's also no doubt in my mind that my husband [father of youngest two] is also an Aspie [but not officially diagnosed].My third son has had a really rough go of things since he was very small. Life has been unusually hard on him. When he was a year old, he was diagnosed with bi-lateral Wilms tumour [cancer in both kidneys] and was treated with chemotherapy, surgery (he only has three-quarters of one kidney now) and radiation. When he was 4, he was diagnosed with a focal seizure disorder [benign Rolandic seizures, or BECTS (benign epilepsy in children with centro-temporal spikes). He was diagnosed with Asperger's Syndrome when he was 7. He also has a slight twisting of the spine due to cancer treatments and we've also been told that he might also have some mild neuropathy due to treatment as well. Due to his medical history and behaviour issues, I did insist on him being seen by a neurologist and asked for an MRI of his brain as I was concerned about growths (he has the WT1 gene; genetic Wilms [his father had the same cancer when he was a year old]) and/or structural abnormalities that might have been contributing to his behaviour. MRI shows that he has an Arachnoid cyst on the surface of his brain on the right side (same side that the EEG showed activity that led to the Rolandic seizure diagnosis) that's about an inch by and inch and a half in size. I have been told by the neurologist and two neurosurgeons that the cyst is an incidental finding and has absolutely nothing to do with his behaviours. I must admit that I don't entirely believe that [i mean, it's quite a coincidence that I ask for a scan as I'm concerned about brain growths/abnormalities, they actually find one but then say it's just a coincidence and not related]. A good friend of mine, in her 40s, was diagnosed as being Aspie a couple of years ago. She recently went in and had a CT done of her head [they were looking for something else]. Her scan results also showed that the right side of her brain was "abnormal." Thankfully, she is aware of everything that's been going on with my son so we were actually able to have a good laugh over her results and she wasn't "frightened" by it.On paper, my son looks a complete mess. In real life, he's doing VERY well. I'd have to say that sensory issues/anxiety are probably our biggest hurdles at the moment. But he goes to a wonderful school and gets lots of support and understanding there.Oh, we live on the Wet Coast of Canada.Nice meeting all of you and hope that I can contribute meaningfully to the group.Sincerely,Tea

[Guest guest]

Welome, Tea. Wow,,,,,,,,you sound like one hell of a mother, if you ask me!!!Are your other kids NT? I'm Robin, mom to 4 also. My husband is . Ian, 11, AS, AHDH, mild Tourettes (comes and goes). , 9, Anxiety, OCD. Jack, 7, currently being eval's for processing disorder. Sam(antha), 5, "normal". Ha ha. We're in Wisconsin. Have a great day. RobinTea <tea@...> wrote: Been reading

messages for a few days now (wow, what a prolific group! *smile*) and thought I should introduce myself.My name is Tea (pronounced like the drink or the golf tool, "tee") and I'm mom to four wonderful boys.My third son was diagnosed two years ago with Asperger's Syndrome. He's currently 9 years old, in grade 4 and mainstreamed at school. My fourth son, youngest, is 7 years old and we're on some waitinglists to get some testing done on him [he has issues, but we haven't pinpointed exactly what they are; at the very least, I know that he isn't neuro-typical, but I can't be more specific at this time]. There's also no doubt in my mind that my husband [father of youngest two] is also an Aspie [but not officially diagnosed].My third son has had a really rough go of things since he was very small. Life has been unusually hard on him. When he was a year old, he was diagnosed with bi-lateral Wilms tumour [cancer in both

kidneys] and was treated with chemotherapy, surgery (he only has three-quarters of one kidney now) and radiation. When he was 4, he was diagnosed with a focal seizure disorder [benign Rolandic seizures, or BECTS (benign epilepsy in children with centro-temporal spikes). He was diagnosed with Asperger's Syndrome when he was 7. He also has a slight twisting of the spine due to cancer treatments and we've also been told that he might also have some mild neuropathy due to treatment as well. Due to his medical history and behaviour issues, I did insist on him being seen by a neurologist and asked for an MRI of his brain as I was concerned about growths (he has the WT1 gene; genetic Wilms [his father had the same cancer when he was a year old]) and/or structural abnormalities that might have been contributing to his behaviour. MRI shows that he has an Arachnoid cyst on the surface of his brain on the right side (same side that

the EEG showed activity that led to the Rolandic seizure diagnosis) that's about an inch by and inch and a half in size. I have been told by the neurologist and two neurosurgeons that the cyst is an incidental finding and has absolutely nothing to do with his behaviours. I must admit that I don't entirely believe that [i mean, it's quite a coincidence that I ask for a scan as I'm concerned about brain growths/abnormalities, they actually find one but then say it's just a coincidence and not related]. A good friend of mine, in her 40s, was diagnosed as being Aspie a couple of years ago. She recently went in and had a CT done of her head [they were looking for something else]. Her scan results also showed that the right side of her brain was "abnormal." Thankfully, she is aware of everything that's been going on with my son so we were actually able to have a good laugh over her results and she wasn't "frightened" by

it.On paper, my son looks a complete mess. In real life, he's doing VERY well. I'd have to say that sensory issues/anxiety are probably our biggest hurdles at the moment. But he goes to a wonderful school and gets lots of support and understanding there.Oh, we live on the Wet Coast of Canada.Nice meeting all of you and hope that I can contribute meaningfully to the group.Sincerely,Tea

Check out the hottest 2008 models today at Autos.

[Guest guest]

Hi Roxanna!

The neurosurgeon has said he would follow-up in a couple of years. He gave

me a list of symptoms that if they should start occurring, he wants us to

come in right away [vision problems, severe migraines, balance issues, et

cetera]. But the concensus from the folks we've seen is that they think

that the cyst is stable and they don't believe that it's going to grow or

change.

I liked the last neurosurgeon we saw [and that's the one we'll go back to].

He spent over an hour with me, showed me the MRI scans and patiently

explained as much as he could in simple terms. I appreciated him telling me

that he understood why I had the questions I had and he'd have them too.

But the answer that he gave me that impressed me the most was he kept saying

" current research, " " current studies, " and the way he emphasized the word

" current " implied to me that he wasn't dismissing me outright and there was

a subtle implication that future research/studies might have different

results. I have a lot of respect for professionals who are willing to say

" we don't really know right now, but the information would do have at the

moment indicates blah, blah, and this is why. " I get frustrated with

professionals who answer with " no, that's impossible. Period. End of

story. "

Tea

http://www.caringbridge.org/visit/luke99

[Guest guest]

----- Original Message -----

From: and/or Robin Lemke

Welome, Tea.

Are your other kids NT?

Hi Robin!!

*smile* I was wondering when someone would get around to asking about the

other kids.

No, none of my kids are NT. Heck, who am I kidding, no one in both sides of

the family are NT.

My oldest son, Ken, is ADHD (moderate to severe).

My second son, Connor, hasn't been officially diagnosed with anything, but I

suspect ADD and giftedness. Because he doesn't have the hyperactive part

and mostly because he does really well in school, nobody wants to look at

what his issues are. He's happy, well adjusted and confident, so I don't

feel any need to pursue a diagnosis for him. If it ain't broke, don't fix

it.

My third son, Luke, has been diagnosed with Asperger's Syndrome, Sensory

Processing Dysfunction and Tourette's has also been mentioned (but not

officially diagnosed).

My fourth son, Mike, is currently going through the hoops to find out what

his issues are [teacher informed me yesterday that he spent about 30 minutes

hanging upside down in his chair in class and she finally sent him to the

office because she was concerned about his health as his face was turning

purple, but no matter how she tried to get him to stop hanging upside down,

he just wouldn't stop -- that's just ONE example].

As for me? I'm not NT either. What do I have? Universe only knows. I

come from a long line [family history] of things such as ADHD, OCD,

Hoarding, Sensory Processing Dysfunction, Addiction, Depression, Anxiety,

Phobias, and the list goes on. So I have a little bit of this and that

going on and really the only thing I can say with any certainty is that I'm

non-neuro-typ. Things that were worse when I was a child/younger, are

lessened now as an adult [for example, I had extremely poor socialization

skills as a child and always wanted to be off on my own in my own little

world and not talk to anyone -- now look at me! (although, just because I'm

more open and talk to people doesn't mean that my socialization is that

great, just means that I talk more and sometimes it works out and other

times I can come across as being " rude " or " aggressive. " )] But I guess the

upside to me being non-NT is that I can really relate to my children and

some of the things that they struggle with.

Out of curiosity, how many other parents/caregivers out there also think

they may be non-NT?

Tea

[Guest guest]

Tea, you sound perfectly fine to me!!!Tea <tea@...> wrote: ----- Original Message ----- From: and/or Robin LemkeWelome, Tea.Are your other kids NT?Hi Robin!!*smile* I was wondering when someone would get around to asking about the other kids.No, none of my kids are NT. Heck, who am I kidding, no one in both sides of the family are NT.My oldest son, Ken, is ADHD (moderate to severe).My second son, Connor, hasn't been officially diagnosed with anything, but I suspect ADD and giftedness.

Because he doesn't have the hyperactive part and mostly because he does really well in school, nobody wants to look at what his issues are. He's happy, well adjusted and confident, so I don't feel any need to pursue a diagnosis for him. If it ain't broke, don't fix it.My third son, Luke, has been diagnosed with Asperger's Syndrome, Sensory Processing Dysfunction and Tourette's has also been mentioned (but not officially diagnosed).My fourth son, Mike, is currently going through the hoops to find out what his issues are [teacher informed me yesterday that he spent about 30 minutes hanging upside down in his chair in class and she finally sent him to the office because she was concerned about his health as his face was turning purple, but no matter how she tried to get him to stop hanging upside down, he just wouldn't stop -- that's just ONE example].As for me? I'm not NT either. What do I have? Universe only knows. I

come from a long line [family history] of things such as ADHD, OCD, Hoarding, Sensory Processing Dysfunction, Addiction, Depression, Anxiety, Phobias, and the list goes on. So I have a little bit of this and that going on and really the only thing I can say with any certainty is that I'm non-neuro-typ. Things that were worse when I was a child/younger, are lessened now as an adult [for example, I had extremely poor socialization skills as a child and always wanted to be off on my own in my own little world and not talk to anyone -- now look at me! (although, just because I'm more open and talk to people doesn't mean that my socialization is that great, just means that I talk more and sometimes it works out and other times I can come across as being "rude" or "aggressive.")] But I guess the upside to me being non-NT is that I can really relate to my children and some of the things that they struggle with.Out

of curiosity, how many other parents/caregivers out there also think they may be non-NT?Tea

Pinpoint customers who are looking for what you sell.

[Guest guest]

Welcome Tea,

i was surprised to see the information found you your son's mri. when my youngest was 1 week old, we had an mri done because one of the nurses at the hospital thought he was having seizures. the mri showed some abnormalities that we were originally told would cause him to have severe cognitive deficiencies through his life. a week later, we were told by another pediatric neurologist that the abnormalities were normal. he actually has grey matter where there should be white matter, but since it is equal on both sides, they decided this was ok. i have always wondered if this was an early flag of something and now he is displaying as symptoms.

anyway, i am glad that you are a champion for your family. keep up the good fight!

--. ´¨¨)) -:¦:- ¸.·´ .·´¨¨)) ((¸¸.·´ ..·´ -:¦:- -:¦:- ((¸¸.·´* DubuqueFreecycle

-------------- Original message from Tea <tea@...>: --------------

Been reading messages for a few days now (wow, what a prolific group! *smile*) and thought I should introduce myself.My name is Tea (pronounced like the drink or the golf tool, "tee") and I'm mom to four wonderful boys.My third son was diagnosed two years ago with Asperger's Syndrome. He's currently 9 years old, in grade 4 and mainstreamed at school. My fourth son, youngest, is 7 years old and we're on some waitinglists to get some testing done on him [he has issues, but we haven't pinpointed exactly what they are; at the very least, I know that he isn't neuro-typical, but I can't be more specific at this time]. There's also no doubt in my mind that my husband [father of youngest two] is also an Aspie [but not officially diagnosed].My third son has had a really rough go of things since he was very small. Life has been unusually hard on him. When he was a year old, he was diagnosed with bi-lateral Wilms tumour [cancer in bot

h kidneys] and was treated with chemotherapy, surgery (he only has three-quarters of one kidney now) and radiation. When he was 4, he was diagnosed with a focal seizure disorder [benign Rolandic seizures, or BECTS (benign epilepsy in children with centro-temporal spikes). He was diagnosed with Asperger's Syndrome when he was 7. He also has a slight twisting of the spine due to cancer treatments and we've also been told that he might also have some mild neuropathy due to treatment as well. Due to his medical history and behaviour issues, I did insist on him being seen by a neurologist and asked for an MRI of his brain as I was concerned about growths (he has the WT1 gene; genetic Wilms [his father had the same cancer when he was a year old]) and/or structural abnormalities that might have been contributing to his behaviour. MRI shows that he has an Arachnoid cyst on the surface of his brain on the right side (same side that the EEG

showed activity that led to the Rolandic seizure diagnosis) that's about an inch by and inch and a half in size. I have been told by the neurologist and two neurosurgeons that the cyst is an incidental finding and has absolutely nothing to do with his behaviours. I must admit that I don't entirely believe that [i mean, it's quite a coincidence that I ask for a scan as I'm concerned about brain growths/abnormalities, they actually find one but then say it's just a coincidence and not related]. A good friend of mine, in her 40s, was diagnosed as being Aspie a couple of years ago. She recently went in and had a CT done of her head [they were looking for something else]. Her scan results also showed that the right side of her brain was "abnormal." Thankfully, she is aware of everything that's been going on with my son so we were actually able to have a good laugh over her results and she wasn't "frightened" by it.On paper, m

y son looks a complete mess. In real life, he's doing VERY well. I'd have to say that sensory issues/anxiety are probably our biggest hurdles at the moment. But he goes to a wonderful school and gets lots of support and understanding there.Oh, we live on the Wet Coast of Canada.Nice meeting all of you and hope that I can contribute meaningfully to the group.Sincerely,Tea

[Guest guest]

Andi, Mom of 2 ds

Dakota (Koda) 7 yrs, AS, ADHD, SPD, Anxiety, Depression (mild and

usually only when with his Father)

Braedyn (Bubby) almost 5 yrs, no official dx yet, however, most

definately looking at SPD, Anxiety, ADD (possibly), and PDD-NOS.

As for me, most people say ADHD (though I can sit still for hours and

only get " bouncy " when I'm excited), Panic/Anxiety Disorder, Depression,

PTSD, SPD, and probably AS (there is a 100+ question test online that I

looked at and tried, lol, showed I scored 185/200 and says definate AS.

lol, probably why I can understand Koda so well, and he is the only one

that understands when I explain things using my logic, lol)

Tea wrote:

>

> ----- Original Message -----

> From: and/or Robin Lemke

> Welome, Tea.

> Are your other kids NT?

>

> Hi Robin!!

> *smile* I was wondering when someone would get around to asking about the

> other kids.

> No, none of my kids are NT. Heck, who am I kidding, no one in both

> sides of

> the family are NT.

> My oldest son, Ken, is ADHD (moderate to severe).

> My second son, Connor, hasn't been officially diagnosed with anything,

> but I

> suspect ADD and giftedness. Because he doesn't have the hyperactive part

> and mostly because he does really well in school, nobody wants to look at

> what his issues are. He's happy, well adjusted and confident, so I don't

> feel any need to pursue a diagnosis for him. If it ain't broke, don't fix

> it.

> My third son, Luke, has been diagnosed with Asperger's Syndrome, Sensory

> Processing Dysfunction and Tourette's has also been mentioned (but not

> officially diagnosed).

> My fourth son, Mike, is currently going through the hoops to find out

> what

> his issues are [teacher informed me yesterday that he spent about 30

> minutes

> hanging upside down in his chair in class and she finally sent him to the

> office because she was concerned about his health as his face was turning

> purple, but no matter how she tried to get him to stop hanging upside

> down,

> he just wouldn't stop -- that's just ONE example].

> As for me? I'm not NT either. What do I have? Universe only knows. I

> come from a long line [family history] of things such as ADHD, OCD,

> Hoarding, Sensory Processing Dysfunction, Addiction, Depression, Anxiety,

> Phobias, and the list goes on. So I have a little bit of this and that

> going on and really the only thing I can say with any certainty is

> that I'm

> non-neuro-typ. Things that were worse when I was a child/younger, are

> lessened now as an adult [for example, I had extremely poor socialization

> skills as a child and always wanted to be off on my own in my own little

> world and not talk to anyone -- now look at me! (although, just

> because I'm

> more open and talk to people doesn't mean that my socialization is that

> great, just means that I talk more and sometimes it works out and other

> times I can come across as being " rude " or " aggressive. " )] But I guess

> the

> upside to me being non-NT is that I can really relate to my children and

> some of the things that they struggle with.

>

> Out of curiosity, how many other parents/caregivers out there also think

> they may be non-NT?

>

> Tea

>

>

[Guest guest]

I'm glad you found a doc who will really listen! I found with my ds having MRI's and EEG's that in the end, they had no clue what their findings meant. IOW, they FOUND problems but they had no clue what it meant. I was surprised by that. But we did not pursue anything further. I am glad to hear they are going to keep tabs on the cyst. Loved seeing the pictures too!

RoxannaAutism Happens

Re: ( ) Introduction

Hi Roxanna!The neurosurgeon has said he would follow-up in a couple of years. He gave me a list of symptoms that if they should start occurring, he wants us to come in right away [vision problems, severe migraines, balance issues, et cetera]. But the concensus from the folks we've seen is that they think that the cyst is stable and they don't believe that it's going to grow or change.I liked the last neurosurgeon we saw [and that's the one we'll go back to]. He spent over an hour with me, showed me the MRI scans and patiently explained as much as he could in simple terms. I appreciated him telling me that he understood why I had the questions I had and he'd have them too. But the answer that he gave me that impressed me the most was he kept saying "current research," "current studies," and the way he emphasized the word "current" implied to me that he wasn't dismissing me outright and there was a subtle implication that future research/studies might have different results. I have a lot of respect for professionals who are willing to say "we don't really know right now, but the information would do have at the moment indicates blah, blah, and this is why." I get frustrated with professionals who answer with "no, that's impossible. Period. End of story."Teahttp://www.caringbridge.org/visit/luke99

[Guest guest]

I personally feel a lot of these things are genetic. For you to say you come from a long line of (stuff), made me laugh because I do too. Many people with kids who have autism could probably point to a number of family members with issues of some kind or another. Or in my case, I remember stories about my dad being told by my grandma and they suddenly became so clear to me once I had kids with autism. Aha! lol. I wish my grandma was around so I could ask her questions now!

I don't think that makes us "non-NT" at all. I think we are a little more "colorful" than the average person might be. lol. But I live at the end of a street and in a circle - with houses all around the circle. All my neighbors would be considered "NT" and they are really weird and some, downright mean. They are rude and have poor social skills - at least as it relates to us - (i.e. the people who have handicapped kids) So I would not consider being NT as a narrow definition at all. Especially if people like these are in that category. <GG> I just think because we have kids with autism, we tend to pay more attention to certain skills and definitions than the average person might have to even consider.

RoxannaAutism Happens

Re: ( ) Introduction

----- Original Message ----- From: and/or Robin LemkeWelome, Tea.Are your other kids NT?Hi Robin!!*smile* I was wondering when someone would get around to asking about the other kids.No, none of my kids are NT. Heck, who am I kidding, no one in both sides of the family are NT.My oldest son, Ken, is ADHD (moderate to severe).My second son, Connor, hasn't been officially diagnosed with anything, but I suspect ADD and giftedness. Because he doesn't have the hyperactive part and mostly because he does really well in school, nobody wants to look at what his issues are. He's happy, well adjusted and confident, so I don't feel any need to pursue a diagnosis for him. If it ain't broke, don't fix it.My third son, Luke, has been diagnosed with Asperger's Syndrome, Sensory Processing Dysfunction and Tourette's has also been mentioned (but not officially diagnosed).My fourth son, Mike, is currently going through the hoops to find out what his issues are [teacher informed me yesterday that he spent about 30 minutes hanging upside down in his chair in class and she finally sent him to the office because she was concerned about his health as his face was turning purple, but no matter how she tried to get him to stop hanging upside down, he just wouldn't stop -- that's just ONE example].As for me? I'm not NT either. What do I have? Universe only knows. I come from a long line [family history] of things such as ADHD, OCD, Hoarding, Sensory Processing Dysfunction, Addiction, Depression, Anxiety, Phobias, and the list goes on. So I have a little bit of this and that going on and really the only thing I can say with any certainty is that I'm non-neuro-typ. Things that were worse when I was a child/younger, are lessened now as an adult [for example, I had extremely poor socialization skills as a child and always wanted to be off on my own in my own little world and not talk to anyone -- now look at me! (although, just because I'm more open and talk to people doesn't mean that my socialization is that great, just means that I talk more and sometimes it works out and other times I can come across as being "rude" or "aggressive.")] But I guess the upside to me being non-NT is that I can really relate to my children and some of the things that they struggle with.Out of curiosity, how many other parents/caregivers out there also think they may be non-NT?Tea

[Guest guest]

Hey Jen Welcome to the group. You have come to the right place. You should be happy that you have found out about all of this at such an early age. That helps alot. Yes, bands are the same as helmets. My son has plageocephaly and torticollis as well. We tried repositioning for a few months and it didnt help (the plageo). We also have been taking him to physical therapy once a week (or more) since he was 3 months and he is now 12 months. Dont worry, I doubt your daughter has been uncomfortable with any of this. Did your pediatrician explain what torticollis is? Hope we can help you as you partake on this journey with your daughter.. She will be fine! Tricia mom of Hayden (12 ms tort and plageo- getting a docband this friday)Jen <jad74@...> wrote: Hi, I found out about this group from a friend, and am happy to have joined. I am still just learning the terminology and details about Plagiocephaly. My daughter, Rose is 4 months old. She was diagnosed with positional plagio by her pediatrician at her 2 month check-up. I knew something was wrong, but I didn't know what. The pediatrican said I needed to change her sleep position, and if it didn't work then get a helmet - (are these called bands?) I'm so sad that I didn't know to find her help earlier, but I was at a homeopath and she said that Rose needed cranial work. So, we are set to see someone in October, and I am working on

finding a physical therapist. I am very grateful that I can get my daughter the help she needs, but I am sad for her. I don't know if she's been uncomfortable, or how this has affected her. She has the neck condition as well - torti...? I understand that this occurs in utero. I had a beautiful water birth with her, but she did have a slight case of shoulder distocia. I assume these are things to share with the therapists. is there any other help that people seek for their children with these conditions? Sorry to ramble, I am just very organized in my thoughts regarding this matter. So happy to have joined this group, and I am looking forward to reading your posts.Jen ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Thanks for you response. Is 4 months considered an early age? I feel as though I am racing against the clock to hurry up and help her. Does your son go to PT for the torticollis only? My pediatrician never mentioned the torticollis - i learned about it through a massage therapist friend. I know that pediatricians have to care for the masses, but it is frustrating when something like this is just treated so casually. Rose could have been receiving PT services for 2 months, rather than just waiting. Thanks again for your response, I am really to happy to be able to talk to other moms who are dealing with this. Jen Tricia Nicol <trishnic8@...> wrote: Hey Jen Welcome to the group. You have come to the right place. You should be happy that you have found out about all of this at such an early age. That helps alot. Yes, bands are the same as helmets. My son has plageocephaly and torticollis as well. We tried repositioning for a few months and it didnt help (the plageo). We also have been taking him to physical therapy once a week (or more) since he was 3 months and he is now 12 months. Dont worry, I doubt your daughter has been uncomfortable with any of this. Did your pediatrician explain what torticollis is? Hope we can help you as you partake on this journey with your daughter.. She will be fine! Tricia mom of Hayden (12 ms tort and plageo- getting a docband this

friday)Jen <jad74sbcglobal (DOT) net> wrote: Hi, I found out about this group from a friend, and am happy to have joined. I am still just learning the terminology and details about Plagiocephaly. My daughter, Rose is 4 months old. She was diagnosed with positional plagio by her pediatrician at her 2 month check-up. I knew something was wrong, but I didn't know what. The pediatrican said I needed to change her sleep position, and if it didn't work then get a helmet - (are these called bands?) I'm so sad that I didn't know to find her help earlier, but I was at a homeopath and she said that Rose needed cranial work. So, we are set to see someone in October, and I am working on finding a physical therapist. I am very grateful that I can get my daughter the help she needs, but I am sad for her. I don't know if

she's been uncomfortable, or how this has affected her. She has the neck condition as well - torti...? I understand that this occurs in utero. I had a beautiful water birth with her, but she did have a slight case of shoulder distocia. I assume these are things to share with the therapists. is there any other help that people seek for their children with these conditions? Sorry to ramble, I am just very organized in my thoughts regarding this matter. So happy to have joined this group, and I am looking forward to reading your posts.Jen ><> ><> ><> ><> ><> ><> ><>

><> ><> ><> ><> ><> ><> ><> ><> oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Hi Jen,

you're starting at a good age. Torticollis (tort) definitely makes

plagio more likely since babies will prefer to rest on one side of

their head, encouraging flattening. Physical Therapy is usually

required. They'll show you stretches to do several times a day at

home, so you'll actually be doing most of the work.

Mosts of the " helmets " are called bands, but when you go out in public

people will call it a helmet - because that is what it looks like. A

band opens on one side to allow it to fit over the head, and the top

is open. you can see lots of photos in the photo section for this

group. there are a few helmets that cover the entire head (top too)

but that is less common).

Who are you going to see in october? You will need a prescription from

a doctor to get a band. Many providers (including cranialtech.com)

will do an evaluation without a prescription, but need it to make the

band.

Let us know what questions you have. There are a lot of helpful people

on this site.

-christine

sydney 20 mo starband grad

>

> Hi, I found out about this group from a friend, and am happy to have

> joined. I am still just learning the terminology and details about

> Plagiocephaly. My daughter, Rose is 4 months old. She was

> diagnosed with positional plagio by her pediatrician at her 2 month

> check-up. I knew something was wrong, but I didn't know what. The

> pediatrican said I needed to change her sleep position, and if it

> didn't work then get a helmet - (are these called bands?) I'm so

> sad that I didn't know to find her help earlier, but I was at a

> homeopath and she said that Rose needed cranial work. So, we are

> set to see someone in October, and I am working on finding a

> physical therapist. I am very grateful that I can get my daughter

> the help she needs, but I am sad for her. I don't know if she's

> been uncomfortable, or how this has affected her. She has the neck

> condition as well - torti...? I understand that this occurs in

> utero. I had a beautiful water birth with her, but she did have a

> slight case of shoulder distocia. I assume these are things to

> share with the therapists. is there any other help that people seek

> for their children with these conditions? Sorry to ramble, I am

> just very organized in my thoughts regarding this matter. So happy

> to have joined this group, and I am looking forward to reading your

> posts.

>

> Jen

>

[Guest guest]

Jen 4 months is pretty early. That is usualyl when alot of people are allowed to start the band process. When you do start it, it takes a while before you actually get your child in the band b/c of getting insurance coverage, getting it ordered and fitted for your child. I would reccomend an evaluation from your closest CT location. Where do you live? Even if you get the eval- doesnt mean you HAVE to band... it just gives you alot more info from people who know ALOT about tort and plageo because that is all they do. Usually PT's, Pediatricians, Ortho's, etc know SOME, but they treat alot of kids with different problems so they dont have to time to learn as much about this. Yes my son goes to PT for torticollis only. His plageo was caused by the torticollis- so working on that helps with the plageo- it didnt correct the plageo for him, but it did help with the torticollis ALOT. he still tilts a real little bit at times, but there is a huge

difference from when he was born. I have been happy with those results. YEs, it is very frustrating that alot of PT's dont take this as seriously. Honestly, I just dont think alot of PT's even know enough about it. I am sure they will more in the future. ALot of this stuff is new to everyone because the back to sleep campaign started not too long ago which is part of the problem. I would rely solely on your pediatrician opinion because of this. If you go back and search through some of the old messages on this board... you will hear ALOT of mom's who were in the same situation as you with their pediatrician... actually some even worse. Tricia mom of Hayden 12 ms (tort and plageo- docband this friday!) Dodson <jad74@...> wrote: Thanks for you response. Is 4 months considered an early age? I feel as though I am racing against the clock to hurry up and help her. Does your son go to PT for the torticollis only? My pediatrician never mentioned the torticollis - i learned about it through a massage therapist friend. I know that pediatricians have to care for the masses, but it is frustrating when something like this is just treated so casually. Rose could have been receiving PT services for 2 months, rather than just waiting. Thanks again for your response, I am really to happy to be able to talk to other moms who are dealing with this. Jen Tricia Nicol <trishnic8 > wrote: Hey Jen Welcome to the group. You have come to the right place. You should be happy that you have found out about all of this at such an early age. That helps alot. Yes, bands are the same as helmets. My son has plageocephaly and torticollis as well. We tried repositioning for a few months and it didnt help (the plageo). We also have been taking him to physical therapy once a week (or more) since he was 3 months and he is now 12 months. Dont worry, I doubt your daughter has been uncomfortable with any of this. Did your pediatrician explain what torticollis is? Hope we can help you as you partake on this journey with your daughter.. She will be fine! Tricia mom of Hayden (12 ms tort and plageo- getting a docband

this friday)Jen <jad74sbcglobal (DOT) net> wrote: Hi, I found out about this group from a friend, and am happy to have joined. I am still just learning the terminology and details about Plagiocephaly. My daughter, Rose is 4 months old. She was diagnosed with positional plagio by her pediatrician at her 2 month check-up. I knew something was wrong, but I didn't know what. The pediatrican said I needed to change her sleep position, and if it didn't work then get a helmet - (are these called bands?) I'm so sad that I didn't know to find her help earlier, but I was at a homeopath and she said that Rose needed cranial work. So, we are set to see someone in October, and I am working on finding a physical therapist. I am very grateful that I can get my daughter the help she needs, but I am sad for her. I don't know

if she's been uncomfortable, or how this has affected her. She has the neck condition as well - torti...? I understand that this occurs in utero. I had a beautiful water birth with her, but she did have a slight case of shoulder distocia. I assume these are things to share with the therapists. is there any other help that people seek for their children with these conditions? Sorry to ramble, I am just very organized in my thoughts regarding this matter. So happy to have joined this group, and I am looking forward to reading your posts.Jen ><> ><> ><> ><> ><> ><> ><>

><> ><> ><> ><> ><> ><> ><> ><> oneSearch: Finally, mobile search that gives answers, not web links. ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

[Guest guest]

Can you get a different doc to work with you? Even in a big medical community, there are good and not so good doc's and therapists. If the one you are seeing for meds is not helping, see if you can get in to see a different doc. That might help.

RoxannaAutism Happens

( ) Introduction

I am a newbie, I have a 7yr old who was offically dx's last year, was a normal child until he recieved his shots and from than on he displayed alot of the classic symptoms of Autism, head banging,etc. I kept approaching his doctors about his behaviors and was usually brushed off as being a overly concerned mom, he also has had some hearing problems that have required a number of surgeries, finally after a very rare reaction to a mmr shot that left him hospitalized with acute cerebellar axtaxia with mild dystonia did I finally get an answer.In the mean time, I have had him invloved with the school since the age of 2 for speech therapy and special ed. he has had an IEP in place since the age of 3, however since we live in a small community,we are all learning at the same time.I have lost my job my home and alot of friends over his behaviors, I never really understood if there is a common bond as far as what are some classic behaviors when they have their meltdowns, right now he is on repisdone and at first it seemed to work and now his violent tendancies are getting worse.I need some help as to what kinds of meds I should ask his doc for and what else I can do to try to keep these things in check, As a single parent this is tearing me apart. there are times when I think a residental treatment center would be good for him and than I think of how he wouold feel if I placed him there, please help I have no one to really talk to about the frustations of having a child like him,When you live as close to the worlds best medical center{mayo Clinic} and you really dont get alot of answers from them where would you turn next and how do I deal with these behaviors, he is starting to scare me as I am afraid he is going to hurt himself or someone else,.Jean

[Guest guest]

Thanks for the advice. I live in the western burbs of chicago, and found a CT location 20 min. from my house. yeah! I am going there next week. Repositioning is not working. I have a 3 yr. old, so it's really hard to keep my newborn out of the carseat, etc. What is an ortho? An orthopedic surgeon? I am going to take Rose to cranial sacro therapy in 2 weeks, have you ever done that? Just curious as to what approaches people have taken. Rose is on a waiting list for a physical therapy consult. I used to work in special education, so I am able to implement physical therapy strategies at home, but would also like to have her formally assessed. Any pointers you can give me before my visit to CT? Thanks again for your help. Jen Tricia Nicol <trishnic8@...> wrote: Jen 4 months is pretty early. That is usualyl when alot of people are allowed to start the band process. When you do start it, it takes a while before you actually get your child in the band b/c of getting insurance coverage, getting it ordered and fitted for your child. I would reccomend an evaluation from your closest CT location. Where do you live? Even if you get the eval- doesnt mean you HAVE to band... it just gives you alot more info from people who know ALOT about tort and plageo because that is all they do. Usually PT's, Pediatricians, Ortho's,

etc know SOME, but they treat alot of kids with different problems so they dont have to time to learn as much about this. Yes my son goes to PT for torticollis only. His plageo was caused by the torticollis- so working on that helps with the plageo- it didnt correct the plageo for him, but it did help with the torticollis ALOT. he still tilts a real little bit at times, but there is a huge difference from when he was born. I have been happy with those results. YEs, it is very frustrating that alot of PT's dont take this as seriously. Honestly, I just dont think alot of PT's even know enough about it. I am sure they will more in the future. ALot of this stuff is new to everyone because the back to sleep campaign started not too long ago which is part of the problem. I would rely solely on your pediatrician opinion because of this. If you go back and search through some of the old messages on this board... you will hear ALOT of mom's who

were in the same situation as you with their pediatrician... actually some even worse. Tricia mom of Hayden 12 ms (tort and plageo- docband this friday!) Dodson <jad74sbcglobal (DOT) net> wrote: Thanks for you response. Is 4 months considered an early age? I feel as though I am racing against the clock to hurry up and help her. Does your son go to PT for the torticollis only? My pediatrician never mentioned the torticollis - i learned about it through a massage therapist friend. I know that pediatricians have to care for the masses, but it is frustrating when something like this is just treated so casually. Rose could have been receiving PT services for 2 months, rather than just waiting. Thanks again for your response, I am really to happy to be

able to talk to other moms who are dealing with this. Jen Tricia Nicol <trishnic8 > wrote: Hey Jen Welcome to the group. You have come to the right place. You should be happy that you have found out about all of this at such an early age. That helps alot. Yes, bands are the same as helmets. My son has plageocephaly and torticollis as well. We tried repositioning for a few months and it didnt help (the plageo). We also have been taking him to physical therapy once a week (or more) since he was 3 months and he is now 12 months. Dont worry, I doubt your daughter has been uncomfortable with any of this. Did your pediatrician explain what torticollis is? Hope we can help you as you partake on this journey with your daughter.. She will be fine! Tricia mom of Hayden (12 ms tort and plageo- getting a docband this friday)Jen <jad74sbcglobal (DOT) net> wrote: Hi, I found out about this group from a friend, and am happy to have joined. I am still just learning the terminology and details about Plagiocephaly. My daughter, Rose is 4 months old. She was diagnosed with positional plagio by her pediatrician at her 2 month check-up. I knew something was wrong, but I didn't know what. The pediatrican said I needed to change her sleep position, and if it didn't work then get a helmet - (are these called bands?) I'm so sad that I didn't know to find her help earlier, but I was at a homeopath and she said that Rose needed cranial work. So, we are set to see someone in October, and I am working on finding a physical therapist. I am very grateful that I can get my

daughter the help she needs, but I am sad for her. I don't know if she's been uncomfortable, or how this has affected her. She has the neck condition as well - torti...? I understand that this occurs in utero. I had a beautiful water birth with her, but she did have a slight case of shoulder distocia. I assume these are things to share with the therapists. is there any other help that people seek for their children with these conditions? Sorry to ramble, I am just very organized in my thoughts regarding this matter. So happy to have joined this group, and I am looking forward to reading your posts.Jen ><> ><>

><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> oneSearch: Finally, mobile search that gives answers, not web links. ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

><> ><> ><> ><> ><> Luggage? GPS? Comic books? Check out fitting gifts for grads at Search.

[Guest guest]

Ortho = orthotist, the design and fit things like bands, but also

different types of braces (back brace, leg brace..., even things like

artificial limbs I think, depending on their practice and expertise.

Most types of bands are provided by an ortho who does the casting/scan

and adjustments.

Cranial tech uses " clinicians " which may be trained at physical

therapists, occupational therapist, or nurses before coming to CT

where they are trained on using the docband.

-christine

> Hi, I found out about this group from a friend, and am happy

to have

> joined. I am still just learning the terminology and details about

> Plagiocephaly. My daughter, Rose is 4 months old. She was

> diagnosed with positional plagio by her pediatrician at her 2 month

> check-up. I knew something was wrong, but I didn't know what. The

> pediatrican said I needed to change her sleep position, and if it

> didn't work then get a helmet - (are these called bands?) I'm so

> sad that I didn't know to find her help earlier, but I was at a

> homeopath and she said that Rose needed cranial work. So, we are

> set to see someone in October, and I am working on finding a

> physical therapist. I am very grateful that I can get my daughter

> the help she needs, but I am sad for her. I don't know if she's

> been uncomfortable, or how this has affected her. She has the neck

> condition as well - torti...? I understand that this occurs in

> utero. I had a beautiful water birth with her, but she did have a

> slight case of shoulder distocia. I assume these are things to

> share with the therapists. is there any other help that people seek

> for their children with these conditions? Sorry to ramble, I am

> just very organized in my thoughts regarding this matter. So happy

> to have joined this group, and I am looking forward to reading your

> posts.

>

> Jen

>

>

>

>

>

>

>

>

>

> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

>

>

>

>

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

> oneSearch: Finally, mobile search that gives answers, not

web links.

>

>

>

>

>

>

>

>

>

>

>

>

>

> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

>

>

>

>

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

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

[Guest guest]

You are ery lucky to find a CT location so close. We are driving 4 hours up to cleveland, but I feel that it is worth it! Yes an ortho is an orthapedic surgeon. I guess they are the ones who would sometimes do other kinds of bands. Hayden has done some cranial sacro therapy for his torticollis. I swear it never looks like she is doing much but whenever he has those appts he holds midline alot better. She works on his neck, shoulders, too. Hayden just got his docband yesterday and is doing pretty well with it. He is napping in it now. He pulled at it at first but as long as I keep him occupied it doesnt bother him. Our pt is planning on doing the cranial s. therapy while he has the helmet too.. I guess we will just take it off for part of the appt. I have heard of people on this site doing it during the helmet process and think it helps. we will see. I dont know if I have any advice from CT. since I dont go to the location you are going

to I dont know the tech's there. I guess I would just be open to what they have to say b/c they know alot. and maybe bring a passy or favorite toy for mesauring.. I would make sure that they do measurements during your evaluation and write them down.. people on this website can help you figure out where you daughter is at as far as how mild./severe.. or they may tell you at CT too. Tricia Dodson <jad74@...> wrote: Thanks for the advice. I live in the western burbs of chicago, and found a CT location 20

min. from my house. yeah! I am going there next week. Repositioning is not working. I have a 3 yr. old, so it's really hard to keep my newborn out of the carseat, etc. What is an ortho? An orthopedic surgeon? I am going to take Rose to cranial sacro therapy in 2 weeks, have you ever done that? Just curious as to what approaches people have taken. Rose is on a waiting list for a physical therapy consult. I used to work in special education, so I am able to implement physical therapy strategies at home, but would also like to have her formally assessed. Any pointers you can give me before my visit to CT? Thanks again for your help. Jen Tricia Nicol <trishnic8 > wrote: Jen 4 months is pretty early. That is usualyl when alot of people are allowed to start the band process. When you do start it, it takes a while before you actually get your child in the band b/c of getting insurance coverage, getting it ordered and fitted for your child. I would reccomend an evaluation from your closest CT location. Where do you live? Even if you get the eval- doesnt mean you HAVE to band... it just gives you alot more info from people who know ALOT about tort and plageo because that is all they do. Usually PT's, Pediatricians, Ortho's, etc know SOME, but they treat alot of kids with different problems so they dont have to time to learn as much about this. Yes my son goes to PT for torticollis only. His plageo was caused by the torticollis- so working on that helps with the plageo- it didnt correct the plageo for him, but it did help with the torticollis ALOT. he still tilts a real little bit at times, but there is a huge difference

from when he was born. I have been happy with those results. YEs, it is very frustrating that alot of PT's dont take this as seriously. Honestly, I just dont think alot of PT's even know enough about it. I am sure they will more in the future. ALot of this stuff is new to everyone because the back to sleep campaign started not too long ago which is part of the problem. I would rely solely on your pediatrician opinion because of this. If you go back and search through some of the old messages on this board... you will hear ALOT of mom's who were in the same situation as you with their pediatrician... actually some even worse. Tricia mom of Hayden 12 ms (tort and plageo- docband this friday!) Dodson <jad74sbcglobal (DOT) net> wrote: Thanks for you response.

Is 4 months considered an early age? I feel as though I am racing against the clock to hurry up and help her. Does your son go to PT for the torticollis only? My pediatrician never mentioned the torticollis - i learned about it through a massage therapist friend. I know that pediatricians have to care for the masses, but it is frustrating when something like this is just treated so casually. Rose could have been receiving PT services for 2 months, rather than just waiting. Thanks again for your response, I am really to happy to be able to talk to other moms who are dealing with this. Jen Tricia Nicol <trishnic8 > wrote: Hey Jen Welcome to the group. You have come to the right place. You should be happy that you have found out about all of this at such

an early age. That helps alot. Yes, bands are the same as helmets. My son has plageocephaly and torticollis as well. We tried repositioning for a few months and it didnt help (the plageo). We also have been taking him to physical therapy once a week (or more) since he was 3 months and he is now 12 months. Dont worry, I doubt your daughter has been uncomfortable with any of this. Did your pediatrician explain what torticollis is? Hope we can help you as you partake on this journey with your daughter.. She will be fine! Tricia mom of Hayden (12 ms tort and plageo- getting a docband this friday)Jen <jad74sbcglobal (DOT) net> wrote: Hi, I found out about this group from a friend, and am happy to have joined. I am still just learning the terminology and details about Plagiocephaly. My daughter, Rose is 4

months old. She was diagnosed with positional plagio by her pediatrician at her 2 month check-up. I knew something was wrong, but I didn't know what. The pediatrican said I needed to change her sleep position, and if it didn't work then get a helmet - (are these called bands?) I'm so sad that I didn't know to find her help earlier, but I was at a homeopath and she said that Rose needed cranial work. So, we are set to see someone in October, and I am working on finding a physical therapist. I am very grateful that I can get my daughter the help she needs, but I am sad for her. I don't know if she's been uncomfortable, or how this has affected her. She has the neck condition as well - torti...? I understand that this occurs in utero. I had a beautiful water birth with her, but she did have a slight case of shoulder distocia. I assume these are things to share with the therapists. is there any other help that people seek

for their children with these conditions? Sorry to ramble, I am just very organized in my thoughts regarding this matter. So happy to have joined this group, and I am looking forward to reading your posts.Jen ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> oneSearch: Finally, mobile

search that gives answers, not web links. ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> Luggage? GPS? Comic books? Check out fitting gifts for grads at Search. ><> ><> ><> ><> ><> ><> ><> ><>

><> ><> ><> ><> ><> ><> ><>

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.

[Guest guest]

very helpful, thank you. i will post after this weeks set of appts, and let you know how it's going. i truly appreciate all your insight. hope hayden is adjusting happily to the docband. jenTricia Nicol <trishnic8@...> wrote: You are ery lucky to find a CT location so close. We are driving 4 hours up to cleveland, but I feel that it is worth it! Yes an ortho is an orthapedic surgeon. I guess they are the ones who would sometimes do other kinds of bands. Hayden has

done some cranial sacro therapy for his torticollis. I swear it never looks like she is doing much but whenever he has those appts he holds midline alot better. She works on his neck, shoulders, too. Hayden just got his docband yesterday and is doing pretty well with it. He is napping in it now. He pulled at it at first but as long as I keep him occupied it doesnt bother him. Our pt is planning on doing the cranial s. therapy while he has the helmet too.. I guess we will just take it off for part of the appt. I have heard of people on this site doing it during the helmet process and think it helps. we will see. I dont know if I have any advice from CT. since I dont go to the location you are going to I dont know the tech's there. I guess I would just be open to what they have to say b/c they know alot. and maybe bring a passy or favorite toy for mesauring.. I would make sure that they do measurements during your evaluation and write them down.. people

on this website can help you figure out where you daughter is at as far as how mild./severe.. or they may tell you at CT too. Tricia Dodson <jad74sbcglobal (DOT) net> wrote: Thanks for the advice. I live in the western burbs of chicago, and found a CT location 20 min. from my house. yeah! I am going there next week. Repositioning is not working. I have a 3 yr. old, so it's really hard to keep my newborn out of the carseat, etc. What is an ortho? An orthopedic surgeon? I am going to take Rose to cranial sacro therapy in 2 weeks, have you ever done that? Just curious as to what approaches people have taken. Rose is on a waiting list for a physical therapy consult. I used to work in special education, so I am able to implement physical therapy

strategies at home, but would also like to have her formally assessed. Any pointers you can give me before my visit to CT? Thanks again for your help. Jen Tricia Nicol <trishnic8 > wrote: Jen 4 months is pretty early. That is usualyl when alot of people are allowed to start the band process. When you do start it, it takes a while before you actually get your child in the band b/c of getting insurance coverage, getting it ordered and fitted for your child. I would reccomend an evaluation from your closest CT location. Where do you live? Even if you get the eval- doesnt mean you HAVE to band... it just gives you alot more info from people who know ALOT about tort and plageo because that is all they do. Usually PT's, Pediatricians,

Ortho's, etc know SOME, but they treat alot of kids with different problems so they dont have to time to learn as much about this. Yes my son goes to PT for torticollis only. His plageo was caused by the torticollis- so working on that helps with the plageo- it didnt correct the plageo for him, but it did help with the torticollis ALOT. he still tilts a real little bit at times, but there is a huge difference from when he was born. I have been happy with those results. YEs, it is very frustrating that alot of PT's dont take this as seriously. Honestly, I just dont think alot of PT's even know enough about it. I am sure they will more in the future. ALot of this stuff is new to everyone because the back to sleep campaign started not too long ago which is part of the problem. I would rely solely on your pediatrician opinion because of this. If you go back and search through some of the old messages on this board... you will hear ALOT of

mom's who were in the same situation as you with their pediatrician... actually some even worse. Tricia mom of Hayden 12 ms (tort and plageo- docband this friday!) Dodson <jad74sbcglobal (DOT) net> wrote: Thanks for you response. Is 4 months considered an early age? I feel as though I am racing against the clock to hurry up and help her. Does your son go to PT for the torticollis only? My pediatrician never mentioned the torticollis - i learned about it through a massage therapist friend. I know that pediatricians have to care for the masses, but it is frustrating when something like this is just treated so casually. Rose could have been receiving PT services for 2 months, rather than just waiting. Thanks again for your response, I am really to

happy to be able to talk to other moms who are dealing with this. Jen Tricia Nicol <trishnic8 > wrote: Hey Jen Welcome to the group. You have come to the right place. You should be happy that you have found out about all of this at such an early age. That helps alot. Yes, bands are the same as helmets. My son has plageocephaly and torticollis as well. We tried repositioning for a few months and it didnt help (the plageo). We also have been taking him to physical therapy once a week (or more) since he was 3 months and he is now 12 months. Dont worry, I doubt your daughter has been uncomfortable with any of this. Did your pediatrician explain what torticollis is? Hope we can help you as you partake on this journey with your daughter.. She will be fine! Tricia mom of Hayden (12 ms tort and plageo- getting a docband this friday)Jen <jad74sbcglobal (DOT) net> wrote: Hi, I found out about this group from a friend, and am happy to have joined. I am still just learning the terminology and details about Plagiocephaly. My daughter, Rose is 4 months old. She was diagnosed with positional plagio by her pediatrician at her 2 month check-up. I knew something was wrong, but I didn't know what. The pediatrican said I needed to change her sleep position, and if it didn't work then get a helmet - (are these called bands?) I'm so sad that I didn't know to find her help earlier, but I was at a homeopath and she said that Rose needed cranial work. So, we are set to see someone in October, and I am working on finding a physical therapist. I am very grateful

that I can get my daughter the help she needs, but I am sad for her. I don't know if she's been uncomfortable, or how this has affected her. She has the neck condition as well - torti...? I understand that this occurs in utero. I had a beautiful water birth with her, but she did have a slight case of shoulder distocia. I assume these are things to share with the therapists. is there any other help that people seek for their children with these conditions? Sorry to ramble, I am just very organized in my thoughts regarding this matter. So happy to have joined this group, and I am looking forward to reading your posts.Jen ><>

><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> oneSearch: Finally, mobile search that gives answers, not web links. ><> ><> ><> ><> ><> ><> ><> ><> ><>

><> ><> ><> ><> ><> ><> Luggage? GPS? Comic books? Check out fitting gifts for grads at Search. ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.

[Guest guest]

CT told us 5 months is the best age to start. We waited (ped.'s

advice) till 7.5 months (our choice...ped. would have had us wait

till 9 months). We recieved great results...it truly depends on

severity, growth spurts, etc. Good luck.

> Hi, I found out about this group from a friend, and am happy

to have

> joined. I am still just learning the terminology and details about

> Plagiocephaly. My daughter, Rose is 4 months old. She was

> diagnosed with positional plagio by her pediatrician at her 2

month

> check-up. I knew something was wrong, but I didn't know what. The

> pediatrican said I needed to change her sleep position, and if it

> didn't work then get a helmet - (are these called bands?) I'm so

> sad that I didn't know to find her help earlier, but I was at a

> homeopath and she said that Rose needed cranial work. So, we are

> set to see someone in October, and I am working on finding a

> physical therapist. I am very grateful that I can get my daughter

> the help she needs, but I am sad for her. I don't know if she's

> been uncomfortable, or how this has affected her. She has the neck

> condition as well - torti...? I understand that this occurs in

> utero. I had a beautiful water birth with her, but she did have a

> slight case of shoulder distocia. I assume these are things to

> share with the therapists. is there any other help that people

seek

> for their children with these conditions? Sorry to ramble, I am

> just very organized in my thoughts regarding this matter. So happy

> to have joined this group, and I am looking forward to reading

your

> posts.

>

> Jen

>

>

>

>

>

>

>

>

>

> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

>

>

>

>

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

> oneSearch: Finally, mobile search that gives answers, not

web links.

>

>

>

>

>

>

>

>

>

>

>

>

>

> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

>

>

>

>

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

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

>

>

>

>

>

>

>

>

>

>

>

>

> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><> ><>

>

>

>

>

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

> Boardwalk for $500? In 2007? Ha!

> Play Monopoly Here and Now (it's updated for today's economy) at

Games.

>

[Guest guest]

Hi ,

How is your boy fairing at 7? I found this to be a tough age for dyspraxia

especially in the school system.

I am Janice and my son has apraxia of speech and dyspraxia. He is 12 years old

and just returned to mainstream school after a 'hiatis' in special education.

The kid didn't really need special ed. but he sure did need a break from the

bullies in mainstream! Things are really turning around for him and my boy is

beginning to blossom.

I know a lot about 'beating' the coordination issues that go along with

dyspraxia because we have done it! YEAH! We still have some fine motor issues

left but they are coming along quite nicely and of course, we still have some

speech issues that linger as well. Please don't hesitate to ask questions if

you find yourself 'stuck' anywhere along this road. We all love to share what

has worked for us to help the 'young ones' get through this thing as happy as

possible.

Janice

[sPAM] [ ] introduction

I thought I should introduce myself since I just responded to a message and

haven't even said " hi " to the group since joining!

My son, who is 7 years old, does not have apraxia, but does have dyspraxia

and sensory processing issues. I have found this group to be the most

helpful to me in figuring out how to treat his dyspraxia, so I hope you

don't mind if I lurk and occasionally post. I'll try not to take things too

off topic from the actual purpose of the group.

[Guest guest]

Thanks for asking, Janice. We just started getting OT this past

spring and I am finally starting to see some results. He goes to a wonderful

private OT. I am also blessed that he is in a class with kids that don't

pick on him too much. His biggest social issue is he cries when he gets

frustrated or upset. Other kids and adults don't know how to react to that.

Thankfully at school the kids in his class are used to it and don't say much

(from what I can tell). He's in a Montessori classroom so he has the same

teacher for grades 1-3, and some of the same classmates each year. How did

you guys manage to overcome your son's coordination problems? I had about

given up hope that he would ever be able to play sports without becoming

completely demoralized because he can't do what the other kids do. He's in

karate, but since it's not competitive it doesn't bother him as much. I am

giving him Omega supplements and Vitamin E, but I did not see the dramatic

results that some others reported. However I'm going to keep messing around

with it in the hopes that I just don't have the right combination.

_____

From:

[mailto: ] On Behalf Of Janice

Sent: Friday, October 05, 2007 12:04 PM

Subject: Re: [ ] introduction

Hi ,

How is your boy fairing at 7? I found this to be a tough age for dyspraxia

especially in the school system.

I am Janice and my son has apraxia of speech and dyspraxia. He is 12 years

old and just returned to mainstream school after a 'hiatis' in special

education. The kid didn't really need special ed. but he sure did need a

break from the bullies in mainstream! Things are really turning around for

him and my boy is beginning to blossom.

I know a lot about 'beating' the coordination issues that go along with

dyspraxia because we have done it! YEAH! We still have some fine motor

issues left but they are coming along quite nicely and of course, we still

have some speech issues that linger as well. Please don't hesitate to ask

questions if you find yourself 'stuck' anywhere along this road. We all love

to share what has worked for us to help the 'young ones' get through this

thing as happy as possible.

Janice

[sPAM] [ ] introduction

I thought I should introduce myself since I just responded to a message and

haven't even said " hi " to the group since joining!

My son, who is 7 years old, does not have apraxia, but does have dyspraxia

and sensory processing issues. I have found this group to be the most

helpful to me in figuring out how to treat his dyspraxia, so I hope you

don't mind if I lurk and occasionally post. I'll try not to take things too

off topic from the actual purpose of the group.

[Guest guest]

We struggled with severe gross coordination issues of just about every kind for

years and years. I always had my boy in some type of class well before he ever

was diagnosed with coordination issues. When he was 3, he actually broke his

elbow in gymnastics class! Ever heard of that one? Well, that is how bad it

was...

I had him in badminton lessons when he was a tyke which quickly turned into

'private' badminton lessons in hopes of catching him up to his peer group. He

was in soccer which was actually pretty successful up until the 2nd grade.

Now, I am in Northern Alberta and every dad where I live has their son in one

sport and they take it pretty seriously.... hockey! We started out in hockey

when Mark was 5.... I spent a fortune on private skating lessons to try and keep

him with his peers. When he was 6, the differences between him and the other

kids started to become noticeable and by the time he was 7..... there was simply

no way he could keep up to any of his peers. In the skills practices, Mark

could not do any of the skills and stick-handling and began to become

embarresed.... we dropped out.

We tried swimming and course after course, the other kids would advance forward

but Mark would get held back..... so we dropped this as well. I slowly ran out

of sports for him to participate in and try. We had luck with 2 big ones which

really saved this kid: he could downhill ski with ease and he could bike well.

In my growing frustration with all of the issues that he had with Dyspraxia, in

September, 2006, I found The National Association for Child Development at

http://www.nacd.org

Here is what they had me do to address Mark's gross coordination issues:

We did a crawling (belly crawl), creeping (on hands and knees), marching (high

knees and tapping the alternative raised knee with hand) and Skipping (also

tapping alternate knee with hand) for 3 to 5 months. Each morning we did about

2 minutes of each and each evening we did about 2 minutes of each.

After 1-2 months of this, my son was able to join a basketball team and keep up

with the other kids! Of course, I spent the first month holding my breath and

'waiting' for him to become the team 'dog' but it never happened. This was a

first. 11 years of pain eliminated by 3 to 4 months of crawling like a baby. I

don't know why this works but it does.... it gives the brain a 'do-over'. Now,

his coordination issues were not completely resolved after this but he stopped

falling down the stairs, bumping into the walls, tripping over the side-walk

(and sometimes his own feet); he stopped getting lost all of the time and

started to look where he was going. He slowly but surely changed.....

After this, we also did a lot of other stuff....

We strengthened his body core by lifting a 11 lb medicine ball doing squats and

lifts 2 times daily for 3 minutes per session

We worked his dominant hand by playing catch 2 times daily for 3 to 5 minutes

each.

We played a game called the wepman game... whereby I would issue instructions

...... touch your right hand to your left knee, touch your left hand to your

right foot, touch your left hand to your head.... etc. for about 2 minutes per

day.

Mark was also required to do 45 minutes daily of aerobic exercise.

Fine motor skills are still a work in process and we do a wide variety of

exercises daily to strengthen both his hands and his fingers. This has improved

a lot but it is slow going. His handwriting continues to get better each day

but it is still a difficult area for him.

We are still required to do 30 minutes of aerobic activity on his NACD program

daily. I cannot emphasize how important it is to get our children running and

to keep them running throughout their lives. Running works the central nervous

system, oxygenates the brain and really does develop the kids coordination

abilities.... " Run, Forest, Run! " I always say this jokingly to Mark and he

gives me a good thump!

Right now, he is playing basketball on the front walk with two of the other kids

from his team and he fits right in! You cannot believe the joy and relief that

I feel that he can at last do this successfully. He can at last learn sports

just like any other kid. Will he ever be a super star? Nope... but he will not

be humiliated and he will be able to participate and find joy with his friends

both on and off the playing field.

I highly encourage you to consider designing a regular home program for your

child that addresses the central nervous system or do what I did and go to

http://www.nacd.org and get them to design a program for your child. It is

non-profit (thus pretty easy on the pocket book when you compare it to therapy

charges) and in one year, my son has advanced many, many years. I cannot thank

these people enough. Kim with 4 cuties has successfully designed and

implemented her own home program which also incorporated the crawling to

galloping components and she too has found the same success in addressing her

sons coordination issues.

Our children need to move daily, vigorously and really be stimulated. This does

not have to be 'forever' but I really believe that if Mark had not gone down to

the floor and 'learned' to crawl on his belly in a good cross-pattern (which he

could not do when we started), that he would absolutely not be outside right now

shooting hoops with the boys!

He missed something... some elemental wiring in the the pons and midbrain when

he was young and he had to go back and repeat the process to get the wiring

connected properly. He had to hook up his central nervous system with his

vision.... there was a definate disconnect somewhere that absolutely did not get

better until we did this.

How do I know this? Because I spent thousands and thousands of dollars over the

years in private lessons with private coaches and fitness trainers, absolutely

everyone and anyone I could think of to get this area up to speed for my kid....

and this is what actually worked! And relatively speaking, it didn't take all

that long!

Janice

[sPAM] [ ] introduction

I thought I should introduce myself since I just responded to a message and

haven't even said " hi " to the group since joining!

My son, who is 7 years old, does not have apraxia, but does have dyspraxia

and sensory processing issues. I have found this group to be the most

helpful to me in figuring out how to treat his dyspraxia, so I hope you

don't mind if I lurk and occasionally post. I'll try not to take things too

off topic from the actual purpose of the group.

[Guest guest]

Janice,

Thanks so much for the great explanation! I had been having do

exercises every morning but when school started back, we let it go by the

wayside. One of the exercises we had been doing was cross-crawl marching. I

can't say for sure if it helped, but it wasn't a program specifically

designed for him - it was more a way to get him alert in the morning before

school. His OT has suggested many home exercises for him, but he gets very

uncooperative at home and is almost impossible to work with. I honestly have

not tried hard enough to get him to comply because fighting him when he is

determined to be difficult is so exhausting. I know this is something I have

to work on. Thank you again for the info - it gives me great hope!

_____

From:

[mailto: ] On Behalf Of Janice

Sent: Saturday, October 06, 2007 9:25 PM

Subject: RE: [ ] introduction

We struggled with severe gross coordination issues of just about every kind

for years and years. I always had my boy in some type of class well before

he ever was diagnosed with coordination issues. When he was 3, he actually

broke his elbow in gymnastics class! Ever heard of that one? Well, that is

how bad it was...

I had him in badminton lessons when he was a tyke which quickly turned into

'private' badminton lessons in hopes of catching him up to his peer group.

He was in soccer which was actually pretty successful up until the 2nd

grade.

Now, I am in Northern Alberta and every dad where I live has their son in

one sport and they take it pretty seriously.... hockey! We started out in

hockey when Mark was 5.... I spent a fortune on private skating lessons to

try and keep him with his peers. When he was 6, the differences between him

and the other kids started to become noticeable and by the time he was

7..... there was simply no way he could keep up to any of his peers. In the

skills practices, Mark could not do any of the skills and stick-handling and

began to become embarresed.... we dropped out.

We tried swimming and course after course, the other kids would advance

forward but Mark would get held back..... so we dropped this as well. I

slowly ran out of sports for him to participate in and try. We had luck with

2 big ones which really saved this kid: he could downhill ski with ease and

he could bike well.

In my growing frustration with all of the issues that he had with Dyspraxia,

in September, 2006, I found The National Association for Child Development

at http://www.nacd. <http://www.nacd.org> org

Here is what they had me do to address Mark's gross coordination issues:

We did a crawling (belly crawl), creeping (on hands and knees), marching

(high knees and tapping the alternative raised knee with hand) and Skipping

(also tapping alternate knee with hand) for 3 to 5 months. Each morning we

did about 2 minutes of each and each evening we did about 2 minutes of each.

After 1-2 months of this, my son was able to join a basketball team and keep

up with the other kids! Of course, I spent the first month holding my breath

and 'waiting' for him to become the team 'dog' but it never happened. This

was a first. 11 years of pain eliminated by 3 to 4 months of crawling like a

baby. I don't know why this works but it does.... it gives the brain a

'do-over'. Now, his coordination issues were not completely resolved after

this but he stopped falling down the stairs, bumping into the walls,

tripping over the side-walk (and sometimes his own feet); he stopped getting

lost all of the time and started to look where he was going. He slowly but

surely changed.....

After this, we also did a lot of other stuff....

We strengthened his body core by lifting a 11 lb medicine ball doing squats

and lifts 2 times daily for 3 minutes per session

We worked his dominant hand by playing catch 2 times daily for 3 to 5

minutes each.

We played a game called the wepman game... whereby I would issue

instructions ..... touch your right hand to your left knee, touch your left

hand to your right foot, touch your left hand to your head.... etc. for

about 2 minutes per day.

Mark was also required to do 45 minutes daily of aerobic exercise.

Fine motor skills are still a work in process and we do a wide variety of

exercises daily to strengthen both his hands and his fingers. This has

improved a lot but it is slow going. His handwriting continues to get better

each day but it is still a difficult area for him.

We are still required to do 30 minutes of aerobic activity on his NACD

program daily. I cannot emphasize how important it is to get our children

running and to keep them running throughout their lives. Running works the

central nervous system, oxygenates the brain and really does develop the

kids coordination abilities.... " Run, Forest, Run! " I always say this

jokingly to Mark and he gives me a good thump!

Right now, he is playing basketball on the front walk with two of the other

kids from his team and he fits right in! You cannot believe the joy and

relief that I feel that he can at last do this successfully. He can at last

learn sports just like any other kid. Will he ever be a super star? Nope...

but he will not be humiliated and he will be able to participate and find

joy with his friends both on and off the playing field.

I highly encourage you to consider designing a regular home program for your

child that addresses the central nervous system or do what I did and go to

http://www.nacd. <http://www.nacd.org> org and get them to design a program

for your child. It is non-profit (thus pretty easy on the pocket book when

you compare it to therapy charges) and in one year, my son has advanced

many, many years. I cannot thank these people enough. Kim with 4 cuties has

successfully designed and implemented her own home program which also

incorporated the crawling to galloping components and she too has found the

same success in addressing her sons coordination issues.

Our children need to move daily, vigorously and really be stimulated. This

does not have to be 'forever' but I really believe that if Mark had not gone

down to the floor and 'learned' to crawl on his belly in a good

cross-pattern (which he could not do when we started), that he would

absolutely not be outside right now shooting hoops with the boys!

He missed something... some elemental wiring in the the pons and midbrain

when he was young and he had to go back and repeat the process to get the

wiring connected properly. He had to hook up his central nervous system with

his vision.... there was a definate disconnect somewhere that absolutely did

not get better until we did this.

How do I know this? Because I spent thousands and thousands of dollars over

the years in private lessons with private coaches and fitness trainers,

absolutely everyone and anyone I could think of to get this area up to speed

for my kid.... and this is what actually worked! And relatively speaking, it

didn't take all that long!

Janice

[sPAM] [ ] introduction

I thought I should introduce myself since I just responded to a message and

haven't even said " hi " to the group since joining!

My son, who is 7 years old, does not have apraxia, but does have dyspraxia

and sensory processing issues. I have found this group to be the most

helpful to me in figuring out how to treat his dyspraxia, so I hope you

don't mind if I lurk and occasionally post. I'll try not to take things too

off topic from the actual purpose of the group.