Re: Welcome to all the newbies!!!

[Guest guest]

I just want to second Donna's welcome to all the newbies! I just

don't have time to breathe lately, so I'm having trouble keeping up

with all the replies--but I am reading, lol (you can give me a

quiz!)! I'm working tons, we're buying a new house (doubling the

mortgage-ahhhh!), and all the regular wife/baby stuff, so I'm

sorry! Good luck to everyone. It's worth it!

, mom to Hannah (8mos tomorrow!)DOCbanded 5/12 and 8/12

Cape Cod, Ma

> We have had so many lately and I love that more parents are

catching

> this in time and getting involved - Good work!

> My aname is Donna and I am in Phoenix, AZ and I am the proud mommy

of

> Jaxon Angel 17 months and Xavier Lee 4.5 months (busy, busy). I

> noticed Xavier's head at about 10 days and our ped noticed it at

his

> 2 week check up. We tried repo-ing for 2 months and decided to go

> with the DOcband and he got it just a week before he turned 4

months.

> He has been in it for 4 weeks now and we are seeing such wonderful

> results - like I have said before the hardest part of this whole

> process is deciding whether or not to band!

> I jsut wanted to welcome all of you and let you know what a

wonderful

> place this is with tons and tons of info and great people! I

really

> dont know if I would have banded w/o the advice and support of all

of

> these people!

> Donna

[Guest guest]

Wow Rabecca,

I really enjoyed your story about your son Tyler! It was wonderful to read, was very uplifting and an encouragement to all of us. He is so fortunate to have you, and you him!

Good job mom, and son!

I could relate to the part about it being a "grieving process" to accept what you cannot change. I went through that, but don't feel bad about it anymore like I used to. So I guess it was indeed a process.

Love,

Carolyn

Welcome to all the newbies!!!

Hi guys!!!I just wanted to say welcome to those newly joining us and...CONGRATULATIONS!!! "Congratulations?" you say... YES!!! You have beautifulchildren who have been misunderstood most of their lives. They have beenpicked on, picked apart, and made to feel less than adequate. They havestruggled to fit in, to belong, and to survive, only to time and time againbe told that they aren't trying hard enough, aren't good enough, aren'tpaying attention. They have been filled with statements of "If only youwould..." "Why can't you..." "When will you..." "How could you..." You havequestioned yourselves and your ability to parent. You have wondered why yourchildren are different, why they don't seem to understand things that mostother kids do, why they seem to be either moody, quiet, or restless, whythey may sleep too little or too much, why they are developing differently,why nothing you do seems to be enough... Well, CONGRATULATIONS!!! You havean answer!!!With this answer, amazing things can happen. You can choose to researchAspergers, which will help you to better understand and relate to yourchild. You can choose to obtain extra help, which can minimize some of thedevelopmental hurdles and can better equip your child to handle socialsituations, physical activities, and schedule changes. Through this, yourchild can learn how to choose a goal concerning a delay and can be helped totake small steps to overcome, many times until it is no longer an issue. Youcan now advocate for your child effectively. Your child has a realdiagnosis, one that is accepted in the medical community and that is not tobe ignored by the educational community. Your child can get the help,emotional support, and the accommodations that can make all the differencein their daily lives!!!Though this is a positive step, there is naturally a grieving process, forboth you and your child! You may wonder if there is anything you could havedone to prevent this, if you may have inadvertently caused this, or askyourselves repeatedly why your child couldn't just be normal like everyoneelse's. Your child may feel more estranged now that he/she has this largetitle hanging over his/her head or around the neck, weighing them down,making them feel like they are some how inferior. Though this is a normalphase, it doesn't have to last forever. There are many positive things thatcan come with Aspergers, some which both you and your child may come toappreciate and cherish!!!My son has Aspergers. There is no shame in that diagnosis, and my son is nowproud of that fact, though it did take him time to get there!!! For him, itmeans that he has had to try harder to accomplish some things. When he wasdiagnosed at 9 1/2, he had large motor skill/balance delays. His fine motorskills were almost non-existent. Multi-step processes were extremely hardfor him to follow, and he stuck to a rigid schedule (that only he seemed toknow all of). He had extreme sensory issues with sounds, tastes, and light.One of his eyes didn't track all the way across with the other when lookingfrom left to right, and it wasn't caught by all the eye doctors he had seenpreviously. This made looking/reading/writing/studying very difficult,though he could accomplish it by doing everything upside down and backwards(so that he was writing/reading from right to left upside down). We hadalways thought this practice was odd and had tried to change it previouslyto no avail. He wasn't making friends at school and was often picked on (byolder kids especially, but also by kids his own age). He had gotten hurtseveral times by other kids at school and didn't know why they were actingthe way they were. He couldn't read body language and had major troublerelating... Yet there were other things too. He could choose a subject andresearch the heck out of it without ever getting tired. He could domultiplication and division in his head and was reading chapter books,albeit it upside down, from bottom (which was really the top but turned) upclear as a bell by the time he started kindergarten. He was reading mycollege level books and quizzing me for my college tests by 1st grade, andhas been studying for fun...Now, things are a bit different. Tyler is no longer 9 years old. He is 14,and I couldn't be any happier with him!!! Tyler went through occupationaltherapy, where they worked on increasing neuro-connections and pathways forquite some time through different activities. He worked on balance, largemotor skills, and fine motor skills. By the time he left, he could crawl,army crawl, hop on one foot, stand on one foot, follow up to 8-step taskswithout reminders of what came next, could read right side up, was beginningto be able to write legibly, and had decreased his extreme sensorysensitivities. His Occupational Therapist recommended a local Tae Kwon Dofacility that had a teacher that not only had a degree in the art, but alsoin child psychology. The teacher understood Tyler's difficulties andencouraged him to continue trying. He learned self-respect, discipline,social skills, and motor skills in a very controlled, safe environment andhas continued for the past 3 1/2 years. He joined a social skills group,which allowed him to safely explore relationships and learn how to betterrelate to others. The approach taken was very concrete, helping the kidsmake eye contact, identifying different facial expressions or bodymovements, problem solving, conflict resolution, role playing etc. It didhelp and he continued in the group for 3 years. Tyler was able to getaccommodations at school through a 504 plan. He was able to be in the frontof the room so that all the visual distractions didn't continue pulling athim. He wasn't placed near the teacher's desk, which kept him from thephysical distractions of people continually shuffling past his seat orbumping him. His writing was accepted (instead of having him continuallyrewrite everything and never having it good enough) and he was allowed totake writing assignments home to type them. He was given emotional supportand was watched over so that he no longer could be harassed by otherstudents. They actually permanently expelled two of them who didn't seem tobe able to stop their behaviors towards him in 6th grade(they wererepeatedly given 1-3 day suspensions and it continued until they weremissing more days than they were attending). That sent a message to therest... Bullying or harassing Tyler was no longer tolerated.This summer, we began signs of "puberty". He began having trouble focusing,no matter the tools he tried to use to get back on track. He was constantlyfrustrated and stressed that he had little impulse control and "seemed to bestuck on fast forward". His moods began to swing wildly and he would get tothe point of vibrating and sweating profusely as he tried to bringeverything back into control. Well, as you might imagine, we took him intohis doctor, who said that this wasn't uncommon. His doctor had Tyler tryAdderal, which was like putting a can of gasoline on the fire. Tyler wascrying a lot, not wanting to go anywhere because he was worried about notbeing in control of his behaviors, was getting into trouble, had no impulsecontrol at all, and was miserable... Yep, we went back to the doctor and heimmediately switched Tyler to a progressive dose of Straterra (one thatincreased to full strength over 6 weeks, with every two weeks being a stepup in strength). Within 3 days of Tyler hitting 40 mg, we noticed majorimprovement. He was able to think things through again, was able toconcentrate on his likes(obsessions), was controlling his impulses, andbegan feeling like he had "a chance" again. When it was bumped to 60 mg, wenoticed even more profound changes... He is now noticing some of the subtlebody language others use and is asking us to interpret it. Once heunderstands it, he reacts appropriately to it!!! He has had his first realfeelings of knowing he was over-stimulated, and we have shown himappropriate ways of coping with this (where as before he would beginstimming or would start chasing others around pretending he was an animal,or just go really looney). This has been a great school year for him sofar... He is beginning to form real friendships (already and withouthelp!!!), and the other kids no longer view him as "over the top" or the"oddest kid in the class." When a bully began picking on him this year, hetold us and we contacted the school. The kid was kicked out and a safetyplan was set up. When the other child violated the safety plan upon hisreturn to school, Tyler went to the counselor, who verified his account withwitnesses, and the bully was kicked out again. When he returned, he waswarned and didn't last the day... He was not allowed back onto my son's teamand has been transferred to another team so that there is no chance forcontact between the two... Tyler was able to follow the protocol withoutmelting down, without acting out, without getting overly loud oremotional... He was able to voice his concerns and then take appropriateactions to rectify the situation!!! (big step forward!)Today, Tyler is a self-confident young man. He is getting straight A's inschool in honors and advanced classes. Because he is in with the "nerds"with the advanced classes, his oddities are more accepted by students he isin with and teachers alike. He still has some disjointed movements, but lastmonth was able to pass his 20-hour long black belt test in December 2003. Heis able to defend himself without becoming overly emotional or out ofcontrol. It is all very methodical now, without even a thought or emotiongiven to it. It is instinct and he no longer even seems to hear what otherssay or see what they do when it is negative or directed at him unless itbecomes a physical threat! He has made a couple friends, who he now callsand enjoys hanging around. He is in the creative writing club, the chessclub, the robotics club, the marching band, and drama club at school. He iseven part of a social youth group at our church and is now accepted by allthe kids! Once a week, he takes an archery class and once a week he takesfencing at the local parks and recreation.He is still methodical and scheduled, but it actually works to ouradvantage. He puts all his activities on our family calendar so that we knowwhen we need to take him here or there... He has chess club one night aweek, drama twice a week, creative writing one night a week, youth grouptwice a week, robotics club once a week, archery once a week, fencing once aweek, school 5 days a week and Aspergers Game Club once a month. (he wantsto add Teen Aspie Club once a month as well, but hasn't yet figured out howto fit it into his schedule). We told him he can maintain his own scheduleas long as his grades stay up and he can fulfill the requirements of each ofthe activities. So far, he is doing GREAT, though we sometimes feel morelike a taxi service than parents...Am I proud of my son??? YOU BET!!! Am I glad he is an ASPIE??? YES!!! If heweren't, he wouldn't be so determined, so scheduled, so intense, or sofocused. He is a very loving and loyal son who has taken what he has beendealt and has made the best of it!!!Does that mean life with Tyler is easy? Absolutely NOT! He is still soscheduled that it can be painful at times to change... If he getsstressed/overwhelmed and needs to relax, he sometimes still makes loudanimal noises, hides in the basement, chases kids while pretending he is anape, gets arm movements or ticks that he can't control, or can't stoptalking (and yes, that can be a serious problem, especially in the middle ofthe night or at school!!!) He needs continual support, loving affection, andreassurance that he is doing well... And he is now hormonal!!! (though a bitdelayed in how to handle it, as he is just now starting to notice girls...)Anyway, I just wanted to say welcome to the group. Having a child withAspergers may be difficult, but it definitely isn't all bad. Like any kid,you will find traits you like and others you won't... but for better orworse they are still there... It is how you handle them that counts!!!~hugs to all~Rabecca

[Guest guest]

Thanks

That is just what I need to hear such a

fantastic up lifting story, would you mind if I past it around to my family to

help them understand AS & how special these children are.

Thanks again for sharing; each day when I log

in to read the stories etc of the group, I can feel the road ahead getting easier

Hugs

Narelle

Geelong, Australia.

Welcome to all the newbies!!!

Hi guys!!!

I just wanted to say welcome to those newly

joining us and...

CONGRATULATIONS!!! " Congratulations? "

you say... YES!!! You have beautiful

children who have been misunderstood most of their

lives. They have been

picked on, picked apart, and made to feel less

than adequate. They have

struggled to fit in, to belong, and to survive,

only to time and time again

be told that they aren't trying hard enough,

aren't good enough, aren't

paying attention. They have been filled with

statements of " If only you

would... " " Why can't you... "

" When will you... " " How could you... " You have

questioned yourselves and your ability to parent.

You have wondered why your

children are different, why they don't seem to

understand things that most

other kids do, why they seem to be either moody,

quiet, or restless, why

they may sleep too little or too much, why they

are developing differently,

why nothing you do seems to be enough... Well,

CONGRATULATIONS!!! You have

an answer!!!

With this answer, amazing things can happen. You

can choose to research

Aspergers, which will help you to better

understand and relate to your

child. You can choose to obtain extra help, which

can minimize some of the

developmental hurdles and can better equip your child

to handle social

situations, physical activities, and schedule

changes. Through this, your

child can learn how to choose a goal concerning a

delay and can be helped to

take small steps to overcome, many times until it

is no longer an issue. You

can now advocate for your child effectively. Your

child has a real

diagnosis, one that is accepted in the medical

community and that is not to

be ignored by the educational community. Your

child can get the help,

emotional support, and the accommodations that can

make all the difference

in their daily lives!!!

Though this is a positive step, there is naturally

a grieving process, for

both you and your child! You may wonder if there

is anything you could have

done to prevent this, if you may have

inadvertently caused this, or ask

yourselves repeatedly why your child couldn't just

be normal like everyone

else's. Your child may feel more estranged now

that he/she has this large

title hanging over his/her head or around the

neck, weighing them down,

making them feel like they are some how inferior.

Though this is a normal

phase, it doesn't have to last forever. There are

many positive things that

can come with Aspergers, some which both you and

your child may come to

appreciate and cherish!!!

My son has Aspergers. There is no shame in that

diagnosis, and my son is now

proud of that fact, though it did take him time to

get there!!! For him, it

means that he has had to try harder to accomplish

some things. When he was

diagnosed at 9 1/2, he had large motor

skill/balance delays. His fine motor

skills were almost non-existent. Multi-step

processes were extremely hard

for him to follow, and he stuck to a rigid

schedule (that only he seemed to

know all of). He had extreme sensory issues with

sounds, tastes, and light.

One of his eyes didn't track all the way across

with the other when looking

from left to right, and it wasn't caught by all

the eye doctors he had seen

previously. This made

looking/reading/writing/studying very difficult,

though he could accomplish it by doing everything

upside down and backwards

(so that he was writing/reading from right to left

upside down). We had

always thought this practice was odd and had tried

to change it previously

to no avail. He wasn't making friends at school

and was often picked on (by

older kids especially, but also by kids his own

age). He had gotten hurt

several times by other kids at school and didn't

know why they were acting

the way they were. He couldn't read body language

and had major trouble

relating... Yet there were other things too. He

could choose a subject and

research the heck out of it without ever getting

tired. He could do

multiplication and division in his head and was

reading chapter books,

albeit it upside down, from bottom (which was

really the top but turned) up

clear as a bell by the time he started

kindergarten. He was reading my

college level books and quizzing me for my college

tests by 1st grade, and

has been studying for fun...

Now, things are a bit different. Tyler is no

longer 9 years old. He is 14,

and I couldn't be any happier with him!!! Tyler

went through occupational

therapy, where they worked on increasing

neuro-connections and pathways for

quite some time through different activities. He

worked on balance, large

motor skills, and fine motor skills. By the time

he left, he could crawl,

army crawl, hop on one foot, stand on one foot,

follow up to 8-step tasks

without reminders of what came next, could read

right side up, was beginning

to be able to write legibly, and had decreased his

extreme sensory

sensitivities. His Occupational Therapist

recommended a local Tae Kwon Do

facility that had a teacher that not only had a

degree in the art, but also

in child psychology. The teacher understood

Tyler's difficulties and

encouraged him to continue trying. He learned

self-respect, discipline,

social skills, and motor skills in a very

controlled, safe environment and

has continued for the past 3 1/2 years. He joined

a social skills group,

which allowed him to safely explore relationships

and learn how to better

relate to others. The approach taken was very

concrete, helping the kids

make eye contact, identifying different facial

expressions or body

movements, problem solving, conflict resolution,

role playing etc. It did

help and he continued in the group for 3 years.

Tyler was able to get

accommodations at school through a 504 plan. He

was able to be in the front

of the room so that all the visual distractions

didn't continue pulling at

him. He wasn't placed near the teacher's desk,

which kept him from the

physical distractions of people continually

shuffling past his seat or

bumping him. His writing was accepted (instead of

having him continually

rewrite everything and never having it good enough)

and he was allowed to

take writing assignments home to type them. He was

given emotional support

and was watched over so that he no longer could be

harassed by other

students. They actually permanently expelled two

of them who didn't seem to

be able to stop their behaviors towards him in 6th

grade(they were

repeatedly given 1-3 day suspensions and it

continued until they were

missing more days than they were attending). That

sent a message to the

rest... Bullying or harassing Tyler was no longer

tolerated.

This summer, we began signs of

" puberty " . He began having trouble focusing,

no matter the tools he tried to use to get back on

track. He was constantly

frustrated and stressed that he had little impulse

control and " seemed to be

stuck on fast forward " . His moods began to

swing wildly and he would get to

the point of vibrating and sweating profusely as

he tried to bring

everything back into control. Well, as you might

imagine, we took him into

his doctor, who said that this wasn't uncommon.

His doctor had Tyler try

Adderal, which was like putting a can of gasoline

on the fire. Tyler was

crying a lot, not wanting to go anywhere because

he was worried about not

being in control of his behaviors, was getting

into trouble, had no impulse

control at all, and was miserable... Yep, we went

back to the doctor and he

immediately switched Tyler to a progressive dose

of Straterra (one that

increased to full strength over 6 weeks, with

every two weeks being a step

up in strength). Within 3 days of Tyler hitting 40

mg, we noticed major

improvement. He was able to think things through

again, was able to

concentrate on his likes(obsessions), was

controlling his impulses, and

began feeling like he had " a chance "

again. When it was bumped to 60 mg, we

noticed even more profound changes... He is now

noticing some of the subtle

body language others use and is asking us to

interpret it. Once he

understands it, he reacts appropriately to it!!!

He has had his first real

feelings of knowing he was over-stimulated, and we

have shown him

appropriate ways of coping with this (where as

before he would begin

stimming or would start chasing others around

pretending he was an animal,

or just go really looney). This has been a great

school year for him so

far... He is beginning to form real friendships

(already and without

help!!!), and the other kids no longer view him as

" over the top " or the

" oddest kid in the class. " When a bully

began picking on him this year, he

told us and we contacted the school. The kid was kicked

out and a safety

plan was set up. When the other child violated the

safety plan upon his

return to school, Tyler went to the counselor, who

verified his account with

witnesses, and the bully was kicked out again.

When he returned, he was

warned and didn't last the day... He was not

allowed back onto my son's team

and has been transferred to another team so that

there is no chance for

contact between the two... Tyler was able to

follow the protocol without

melting down, without acting out, without getting

overly loud or

emotional... He was able to voice his concerns and

then take appropriate

actions to rectify the situation!!! (big step

forward!)

Today, Tyler is a self-confident young man. He is

getting straight A's in

school in honors and advanced classes. Because he

is in with the " nerds "

with the advanced classes, his oddities are more

accepted by students he is

in with and teachers alike. He still has some

disjointed movements, but last

month was able to pass his 20-hour long black belt

test in December 2003. He

is able to defend himself without becoming overly

emotional or out of

control. It is all very methodical now, without

even a thought or emotion

given to it. It is instinct and he no longer even

seems to hear what others

say or see what they do when it is negative or

directed at him unless it

becomes a physical threat! He has made a couple

friends, who he now calls

and enjoys hanging around. He is in the creative

writing club, the chess

club, the robotics club, the marching band, and

drama club at school. He is

even part of a social youth group at our church

and is now accepted by all

the kids! Once a week, he takes an archery class

and once a week he takes

fencing at the local parks and recreation.

He is still methodical and scheduled, but it

actually works to our

advantage. He puts all his activities on our

family calendar so that we know

when we need to take him here or there... He has

chess club one night a

week, drama twice a week, creative writing one

night a week, youth group

twice a week, robotics club once a week, archery

once a week, fencing once a

week, school 5 days a week and Aspergers Game Club

once a month. (he wants

to add Teen Aspie Club once a month as well, but

hasn't yet figured out how

to fit it into his schedule). We told him he can

maintain his own schedule

as long as his grades stay up and he can fulfill

the requirements of each of

the activities. So far, he is doing GREAT, though

we sometimes feel more

like a taxi service than parents...

Am I proud of my son??? YOU BET!!! Am I glad he is

an ASPIE??? YES!!! If he

weren't, he wouldn't be so determined, so

scheduled, so intense, or so

focused. He is a very loving and loyal son who has

taken what he has been

dealt and has made the best of it!!!

Does that mean life with Tyler is easy? Absolutely

NOT! He is still so

scheduled that it can be painful at times to

change... If he gets

stressed/overwhelmed and needs to relax, he

sometimes still makes loud

animal noises, hides in the basement, chases kids

while pretending he is an

ape, gets arm movements or ticks that he can't

control, or can't stop

talking (and yes, that can be a serious problem,

especially in the middle of

the night or at school!!!) He needs continual

support, loving affection, and

reassurance that he is doing well... And he is now

hormonal!!! (though a bit

delayed in how to handle it, as he is just now

starting to notice girls...)

Anyway, I just wanted to say welcome to the group.

Having a child with

Aspergers may be difficult, but it definitely

isn't all bad. Like any kid,

you will find traits you like and others you

won't... but for better or

worse they are still there... It is how you handle

them that counts!!!

~hugs to all~

Rabecca