Re: Welcome New Members and New Diagnoses!!! (long)

[Guest guest]

Hi Rabecca-

This is a great post. I am wondering if you could share a little

about your son's early years. Did he have any motor or language

delays or oddities in speech as a toddler/preschooler that were

addressed with therapy, or did you only begin therapy after he was

dx'd? Did he/does he have problem solving, abstract thinking, and/or

incorporating multiple perspective issues? Was there an early dx

that was incorrect or were the issues not noticed until later? Just

curious. This is a great post for all struggling with the challenges

of a child with Aspergers.

> 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... Now things are a bit different. Tyler is no longer 9 years

old. He is

> 13 1/2, and I couldn't be 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 (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.

>

> 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. He is able

to

> defend himself without becoming 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! He has made a couple

> friends. He may still not think to call them or even go out with

them, but

> there is one in his school that he hangs with at school, one in

martial arts

> that he hangs with there, and one in youth group... Yeah, can you

believe

> it? He is part of a social youth group and is accepted by all the

kids! He

> is still methodical and scheduled, but it actually works to our

advantage.

> He prints off his schedule for the week so that we know when we

need to take

> him here or there... He has chess club one night a week, youth

group twice a

> week, robotics club twice a week, martial arts 2-5 days 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

> and needs to relax, he often makes loud animal noises, 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 isn't accepted by many

at his

> school due to his behaviors (though they don't bug him due to his

being able

> to defend himself now). He is often still the scapegoat of many who

don't

> understand, who think it must be him who did something because he

> seems... " weird " . 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 girls are still thought of as

aliens from

> outer space...)

>

> 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

[Guest guest]

,

How about if I

start even further back??? ~winks~ When I was three months pregnant, I began

having bleeding and cramping. The doctors covered by my insurance at that time

were sure that the baby wasn’t placed high enough in the uterus and that I

would loose him. They recommended a DNC. I had lost a child less than a year

prior to SIDS and was emotionally and mentally dead set against loosing

another. The cramping and bleeding went on for another 2 ½ months, with me

being rushed into the ER almost weekly. By the end of this time, my mom

convinced me to go to a doctor outside our insurance plan for a second opinion.

(My husband had shared with her that he had seen my chart and they had the word

“SIDS” in bold red letters across the top of the top page, so the doctors who

saw me discounted my emotions/thoughts and sent me on my way) For a second opinion,

I went to a public health clinic. Upon a visual exam (something the doctors

under the covered plan refused to do, saying they might contaminate the area)

the doctor remarked that I had a very severe vaginal infection. They began

running tests. I tested positive for vaginal strep. Because I had had the

infection for so long, it had spread into the uterus and there was another infection

within the amniotic fluid. They told me that I had two options… The first was

to abort the pregnancy (late term abortion). My other option was to take

medication that would clear the infections, but that could have serious side

effects. They said that there was a good chance that Tyler would be born deaf

and blind… We chose life and to cancel the health insurance policy that

required us to go back to the doctors who put him at risk!!!

When Tyler was

born, he didn’t open his eyes. Though the doctors could get the pupils to

respond to light, he refused to open them of his own accord for three weeks.

Then it was squinting(even in darkened rooms) and his eyes didn’t track

together or seem to focus… We knew he could hear well. He was so sensitive

hearing wise that any miniscule sound was painful to him. A normal volume on

the radio or TV, another child talking or laughing, our bumping into something

or setting something down too hard on the table… Yet we were ecstatic… HE COULD

HEAR!!! When one of his eyes started to focus and partially track, we

celebrated for over a week… HE COULD SEE!!! Every little thing became

monumental. Tyler had a heart monitor because every time he fell asleep, he

slowed or stopped breathing and didn’t restart without intervention (very scary

for parents who had one already die of SIDS)He had stopped breathing 18 times

in his first 24 hours of life… Thankfully, he grew out of this as well…

When Tyler was

an infant, we noticed him missing milestones. The doctors explained this away,

saying that many kids hooked to a machine 24 hours a day were delayed, but that

they caught up later on. We noticed that he would focus on one thing for

extended periods of time. The doctors explained this away too… When he skipped

markers, the doctors said that if they weren’t met by the time he was five,

then it would be time to worry, that we were being overly paranoid… At one

year, Tyler was not talking. He could not crawl or go from laying to sitting

up. He couldn’t let go of something and remain standing in one spot. Yet, when

he learned to roll over at 8 ½ months, he concentrated on trying from back to

front one direction… Then when he was on his front, he very methodically tried

to roll the same direction to his back… He learned how to continue rolling to

the right and could roll all the way across the floor in one direction. Within

another day, he learned how kicking his feet could change his body position so

that he could go around obstacles while rolling around the house… He didn’t

learn how to roll the other direction until 11 months old, but could get

anywhere he wanted to get in the house. The doctors said that he wasn’t

probably going to be a crawler, that he had learned a different mode of

transportation instead.

At 13 months, if

we set Tyler in front of a couch on one side of a small room, he could very

carefully turn around and lean forward. Then he would literally run across the

room until he grabbed onto the other couch on the other side. If there was more

than 7 feet between the two, he would end up landing on his face, as he was as

yet unable to catch himself with his hands/arms or able to stand up without

falling or moving forward by stepping. This was the way he took his first

steps.

Tyler didn’t

start trying to talk much until he was 2-2 ½. Then, when he said something, it

was all ran together, but was in complete sentences instead of individual

words. He skipped the word stage and went on to sentences. Much of what he said

was a repetition of songs and books that we had read to him. He could recite

whole Doctor Sues books, songs that I sang to him, rhymes that we had done,

finger plays without any motions, etc. If he heard it, it seemed he could recite

it, but still didn’t do much with individual words. By 3, he became obsessed

with things. He began asking questions, telling us about his observations, play

acting in his own little world. He also would play along side others, but it

seemed he always led the group in activities, his activities… Others his age at

that time naturally followed along, because he seemed to know so much and have

so many ideas of what to try. He was our little absent minded scientist… At 3 ½

Tyler picked up a magazine at the checkout counter of the grocery store. He

turned it upside down and began reading the headlines aloud. It was our first

clue that he could read. Numbers and amounts also fascinated Tyler at that time.

He could play for hours with a couple containers and different material to put

in them, seeing how much they weighed, how much fit in which etc. At four, he

learned how to do an awkward crawl and could run, but still couldn’t catch

himself when he fell. His doctors were all thrilled with his progress, saying

that they had been right all along, that he had more than caught up with the

kids his own age. After all, look at how smart he was!

Prior to

Kindergarten, our school had a day that the kids came in to meet the teacher

and allow the teacher to determine if they were ready to start or if they

should hold off another year. Tyler was very excited because he viewed school

as a place of learning, and that was still his obsession. He had been setting

his own alarm for over six months and doing a “school morning routine” to

prepare for the day he would start. Before we left the house, we warned him

that part of the time we would be talking to his teacher and that he would have

to be patient. To occupy himself, he brought along a new Goosebumps book that

he was reading. His teacher tried really hard. I have to give her that… but it

didn’t go real well as far as Tyler was concerned. She looked down upon him, as

if she knew more, and that really got him going. She told him that he would learn

his letters. He showed her how he could read his book. She told him that he

could learn the difference of “to, two, and too” and he recited them to her and

told her how he liked to read the dictionary. She told him that he would learn

his numbers, and he told her that he could multiply and divide. She told him

that he needed to concentrate on adding and subtracting and he asked her why he

should if he already knew how to do that. Later that month, she finally got him…

She could show him how to write and how to cut… Well, she tried… sort of… She

put the paper in front of him several times that year, but she didn’t do

anything to help him with his grip or to support his learning how to make

shapes (we didn’t know he had spatial issues at that time or that his eyes

couldn’t track in one direction). He still couldn’t color something in, write

any letter without picking up his pencil 15-30 times and trying to create it

like a photograph of something. Lines didn’t make sense to him. He didn’t see

the continuity of them. He could recognize whole shapes like letters but didn’t

seem to be able to create them. Most of the time in kindergarten, the teacher

was so frustrated with him that she either had him trying to lay down his head

and sleep so that he wasn’t correcting her or the other kids or she was

frustrated that he couldn’t do something as simple as writing. She finally gave

up, saying that he just wouldn’t be able to do that yet, that it would kick in

in its own good time.

His 1-2 grade

teacher thought he was the heaven and the earth and that his shortcomings didn’t

matter at all. She figured that eventually, everyone would write on computers

anyway, so why stress over him not being able to get his thoughts or answers on

paper. She let him spend much of his day in the library, where the librarian

taught him the Dewy Decimal System and how to find subjects he was interested

in. Thus began his obsession with libraries and research. Through his

experiments he caused several power surges in our neighborhood, one minor

outage, and one blown transformer that they had to replace. We felt quite lucky

that he didn’t burn down the house. It took us a while to explain the idea of

safety and that not all experiments are safe. He hadn’t thought of the

potential negative consequences, just that he might be successful in getting

certain experiments to work. I honestly don’t know where he got the idea that

he could weld with a battery in a light socket and a couple strands of metal

that I still don’t know where he found… It was one of his successful attempts,

but boy it made me mad, as the flying sparks created burn holes in the rug and shorted

out our power… AGAIN!!!

His 3rd

grade year is when it all hit the fan. His teacher was a perfectionist. If something

wasn’t written clearly or “right” it had to be redone. No matter how many times

I went to her, she insisted on keeping him in every recess to recopy his work,

which was never good enough the second time around either. He missed the breaks

and had absolutely no social interaction. The other kids noticed him being

singled out and began to really bully him severely. The teacher didn’t help by

stopping her oral quizzes and staring at him until he was finished writing the

answer. Since the other kids were faster, they would look up, see where she was

looking, and then they would look at him too. He would end up with the entire

class looking at him after every question, making the pressure worse,

especially since she would count words wrong that he spelled right just because

his writing wasn’t neat enough. We began experiencing major emotional

difficulties with him. His shortcomings became magnified. He felt like such a

failure, an outsider, someone would just couldn’t succeed. Anxiety and

depression set it and he began crying at school, screaming at people, and fell

further and further behind in school. His physical skills seemed to deteriorate

with the stress. Since his concentration was off, he was unable to keep up the compensations

he had figured out. He just couldn’t think fast enough to react. Yet, he wanted

so badly to be normal. He took off trying to ride a bike without training

wheels. He got less than three houses before he fell and required both sub-dermal

and surface stitches on his face because he still couldn’t balance for long or catch

himself when he fell. We began noticing that he really did act younger than the

other kids his age. He still pretended he was an animal often, made weird

noises, played beside others instead of with them, and had many lacking skills…

It was at this time that we asked for a letter from the teacher stating the

behaviors and skill deficits she saw and were finally able to get a doctor to

give us a referral for diagnostics.

We had never

heard of Asperger’s Syndrome. The name alone was enough to send me into a panic…

What was wrong with our son? It sounded so serious, so official and yet so

gross (the doctor pronounced it “Ass Burgers”) We were devastated at first… How

could our little boy who overcame so much have a syndrome? He was so good at so

many things… What did we do wrong??? Anyway, that was when my research started,

and it hasn’t ever stopped… I thank the Lord for my son. He has taught me so

much about life, about myself, and about perseverance! I am a better person

because of who he is, and I let him know that often (which has really helped

the self esteem over the years!!!)

Anyway, I think

this is what you were kind of looking for…

~hugs~

Rabecca

Hi Rabecca-

This is a great post. I am wondering if you could share a little

about your son's early years. Did he have any motor or language

delays or oddities in speech as a toddler/preschooler that were

addressed with therapy, or did you only begin therapy after he was

dx'd? Did he/does he have problem solving, abstract thinking, and/or

incorporating multiple perspective issues? Was there an early dx

that was incorrect or were the issues not noticed until later? Just

curious. This is a great post for all struggling with the challenges

of a child with Aspergers.

[Guest guest]

Sheesh,

The spacing in my last post was really.... er.... interesting...

Sorry about the spacing between paragraphs!!!

Rabecca

[Guest guest]

Wow! Rabecca, I can hardly type for the tears! That is the greatest explanation I have ever heard! You need to take a moment and pat yourself on the back for a job well done and pat you son on the back for me too!(softly)

My son is just 91/2 yrs. and I can relate to alot of the issues in your letter. I fall short on not understanding why he can't do some of the things that I think he should do. I'm learning and I'm also ashamed of the way I have treated him at times. When he can't do something he freezes up and then I yell because he isn't doing it and then I feel bad for yelling. I'm learning and I apologize to him quite often for all my mistakes but I know that it still hurts him down deep and I don't want to do that to him.

I'm glad you posted because now I am determined to go out of my way to understand him more and to encourage him more in the future.

Thank you,

Sally

Welcome New Members and New Diagnoses!!! (long)

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... Now things are a bit different. Tyler is no longer 9 years old. He is13 1/2, and I couldn't be happier with him!!! Tyler went throughoccupational therapy, where they worked on increasing neuro-connections andpathways for quite some time through different activities. He worked onbalance, large motor skills, and fine motor skills. By the time he left, hecould crawl, army crawl, hop on one foot, stand on one foot, follow up to8-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 extremesensory sensitivities. His Occupational Therapist recommended a local TaeKwon 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 difficultiesand encouraged 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 (they were repeatedly given 1-3day suspensions and it continued until they were missing more days than theywere attending). That sent a message to the rest... Bullying or harassingTyler was no longer tolerated.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. He is able todefend himself without becoming emotional or out of control. It is all verymethodical now, without even a thought or emotion given to it. It isinstinct and he no longer even seems to hear what others say or see whatthey do when it is negative or directed at him! He has made a couplefriends. He may still not think to call them or even go out with them, butthere is one in his school that he hangs with at school, one in martial artsthat he hangs with there, and one in youth group... Yeah, can you believeit? He is part of a social youth group and is accepted by all the kids! Heis still methodical and scheduled, but it actually works to our advantage.He prints off his schedule for the week so that we know when we need to takehim here or there... He has chess club one night a week, youth group twice aweek, robotics club twice a week, martial arts 2-5 days a week, school 5days a week and Aspergers Game Club once a month. (he wants to add TeenAspie Club once a month as well, but hasn't yet figured out how to fit itinto his schedule). We told him he can maintain his own schedule as long ashis grades stay up and he can fulfill the requirements of each of theactivities. So far, he is doing GREAT, though we sometimes feel more like ataxi 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 gets stressedand needs to relax, he often makes loud animal noises, chases kids whilepretending 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 inthe middle of the night or at school!!!) He isn't accepted by many at hisschool due to his behaviors (though they don't bug him due to his being ableto defend himself now). He is often still the scapegoat of many who don'tunderstand, who think it must be him who did something because heseems..."weird". 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 girls are still thought of as aliens fromouter space...)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]

Sally,

Don't be too hard on yourself. This is a learning process for all of

us and we don't become " perfect " overnight... Heck, I won't ever get

there... but I can wake up each morning and try my best to be as good

as I can... and that is all I can do!!! ~winks~ It sounds like you

have a great spirit and your heart is in the right place. I know your

son is lucky to have you as a mom, and that like many of us, you

probably give until you feel you have nothing left to give!!! Then is

when it is the hardest for me, when I feel like I am empty and at the

end of my rope. Thankfully, I am figuring out how to " refill " so that

we don't experience that as often... I am so glad you found my post

useful. I never know whether or not to post because I have a really

different perspective on all of this than some, and I don't want to

offend or ever make anyone feel bad... All I have is my own

experience, if you know what I mean... Anyway, thanks for the

response!!!

~hugs~

Rabecca

> Wow! Rabecca, I can hardly type for the tears! That is the greatest

explanation I have ever heard! You need to take a moment and pat

yourself on the back for a job well done and pat you son on the back

for me too!(softly)

> My son is just 91/2 yrs. and I can relate to alot of the issues in

your letter. I fall short on not understanding why he can't do some

of the things that I think he should do. I'm learning and I'm also

ashamed of the way I have treated him at times. When he can't do

something he freezes up and then I yell because he isn't doing it and

then I feel bad for yelling. I'm learning and I apologize to him

quite often for all my mistakes but I know that it still hurts him

down deep and I don't want to do that to him.

> I'm glad you posted because now I am determined to go out of my way

to understand him more and to encourage him more in the future.

>

> Thank you,

> Sally

>

[Guest guest]

,

That experience was one of the worst things I have ever gone through,

and that is saying something! Yet, as odd as it may seem, I am

sometimes almost grateful for that teacher (not that I would ever

want my son to have her or anyone like her again!!!) After all, if it

weren't for her extreme behavior, would we have ever taken the steps

we took to get him diagnosed? Would he still be struggling with so

many issues? How would he be doing now in Junior High if he didn't

get the help? I can't even imagine what life would have been like for

him... and I don't want to!!! In a way, her awful behavior led to a

positive outcome... My son has grown so much since then… for example…

I am a home childcare provider. 7 years ago, I took on a little boy

who was almost two years old. He was bright, funny and very

attentive. He seemed to have many of the skills Tyler was struggling

with, yet they shared many similarities as well. This little guy put

110% into everything he did. He was social and eager to please the

adults around him… Yet, as hard as he tried, he was still having some

developmental difficulties. He was here when Tyler went through his

3rd grade year. Being such an emotionally in-tune kid, he comforted

Tyler, giving him his undying loyalty and unconditional acceptance,

which meant a LOT to Tyler. Well, this little boy is in 3rd grade

this year, and wouldn't you know it, but he got a teacher just like

Tyler had. It has been the worst experience of his life! He went from

such a positive little tike to one that screamed out in his sleep

about school, had long bouts of depression and anxiety, couldn't

perform normal school functions and they were spiraling down with his

self esteem… He even self inflicting pain and injury to himself

during class in order to " control " the emotions and focus… It has

been a long haul, one that led right up to the superintendent of the

district. It cost over $3000 in testing that the school wouldn't

provide and wasn't covered under insurance…

But there is good news here… Tyler remembered what it was like to go

through that. Once he found out, he wanted to reestablish contact

with the kid in order to be a support person. Tyler wanted to share

with him coping mechanisms, and strategies on how to get through

until things could be changed. He also gave him support when we all

decided to pull him out until the district could come up with a

better environment for him. He reminded his friend what all he went

through, told him about what " testing " would be like, and told him

how wonderful it was to know what was going on so that everyone

could " get off your back " . He also told him about the various groups

he " got to join " and the neat stuff he got to do in OT. This really

boosted the 3rd graders spirits back up and he told his mom, " If

Tyler can do it, so can I! " Well, the diagnostics came in yesterday,

on the day he was finally able to start at a different grade school

with a supportive staff (I can vouch for this school… and he will do

AWESOME!!!)

It turned out that this little guy is dyslexic, dispraxic,

inattentive ADHD, has sensory issues, has spacial issues, has

tracking issues with his eyes, and has dismorphia. Even with all

this, he had been able to overcome enough to learn how to read enough

to enjoy it… He just couldn't create the letters and numbers. He is

incredibly smart, but couldn't get it down on paper. He talks in

complex thoughts, but his schoolwork didn't show his abilities… The

other school was talking about holding him back next year due to his

writing skills and small motor skill awkwardness… Can you believe

that??? How devastating is it to a kid to try his best and to be

continually beaten down for it. It was so bad that he wasn't allowed

to do the assignments that the other class was doing because he " had

late work " or " messy work that needed to be rewritten " . His mother

wasn't allowed to have him type any assignments or to write for him

as he dictated. When they corrected papers in class, he was sent to

sit in the hallway " so he wouldn't cheat " . He wasn't allowed recesses

since mid-September due to not having his work done… AND HE WAS DOING

3 HOURS OF HOMEWORK A NIGHT PLUS WORKING ALL WEEKEND ON IT WITHOUT

TAKING MANY BREAKS!!! I am just so glad he is now going to get the

help he needs…

His new school is already working out well. In two days, they have

had him choose new goals of what he wants to accomplish this year and

what difficulties he wants to work on. They praised his choices

instead of putting them down or discounting them. They accommodated

his speed without making issue of it and they gave him an appropriate

amount of work (because they were given a heads up on his

difficulties before he ever enrolled). The teacher gives lots of

feedback and connects well with him. His spirits are already rising,

even though he is scared to death that he will mess up and be sent

back to " the other place… " No matter how much reassurance he is

given, he is scared to death that he won't be good enough, but Tyler

is coming in handy with that too. He remembers that feeling and is

able to talk with him about it. He is learning it is normal to feel

the way he does right now, and that having different strengths and

weaknesses is okay… even if they have a name. After all, " Tyler says

so! "

Anyway, if Tyler hadn't gone through what he had or gotten diagnosed,

he couldn't help out our little friend. The 3rd grader wouldn't have

remembered Tyler overcoming anything and would have felt isolated

and " different " the way Tyler did. I know this is long, but I guess

my point is… Sometimes the experiences are more about what you do

after they occur than what was done to you. Tyler could have chosen

to continue being a victim, but he much prefers the new role (new to

him!) of being a mentor!!!

~hugs~

Rabecca

> That is an incredible story! Thank you so much for sharing. I am

> just in awe. I want to bop that 3rd grade teacher!

[Guest guest]

Anyway, if Tyler hadn't gone through what he had or gotten diagnosed,

he couldn't help out our little friend. The 3rd grader wouldn't have

remembered Tyler overcoming anything and would have felt isolated

and " different " the way Tyler did. I know this is long, but I guess

my point is. Sometimes the experiences are more about what you do

after they occur than what was done to you. Tyler could have chosen

to continue being a victim, but he much prefers the new role (new to

him!) of being a mentor!!!

~hugs~

Rabecca

Good story , thanks for sharing it and your other post which was

very helpful. For new members; if you join your states Autism society,

many have a leading library of the books folks have been mentioning

lately. That way you can read and purchase later if you want a copy. A

very good reference is 'The Oasis Guide to Asperger Syndrome' by

Bashe and Barbara Kirby. They also have a web site

www.aspergersyndrome.org. Take care, Gail

[Guest guest]

Rabecca,

I'm sure that your letter touched a lot of people and if we all keep telling of our experiences then we can learn from each other.

I just put my son back in PS school after schooling at home for 11/2 yrs. In first grade the teacher was a perfectionists and of course he wasn't writing and doing well on tests and she kept saying that he had to try harder. At the time we had no idea that he was Autistic. To make a long story short, he has come along way since then, I put him in Taekwondo also and it sure has helped his motor skills and confidence and with the one on one teaching I found out that he just learns differently than other children.He is the one that wanted to go back to school and I finally gave in because he was so sad. He wanted to be back with the other children, which was a blessing to me because, he hardly even talked to anyone else in first grade.

I'm staying on top of the situation now that I know what he needs.

Alot of people don't realize that they need sensory input to help them concentrate.

Thanks again,

Sally

Re: Welcome New Members and New Diagnoses!!! (long)

Sally,Don't be too hard on yourself. This is a learning process for all of us and we don't become "perfect" overnight... Heck, I won't ever get there... but I can wake up each morning and try my best to be as good as I can... and that is all I can do!!! ~winks~ It sounds like you have a great spirit and your heart is in the right place. I know your son is lucky to have you as a mom, and that like many of us, you probably give until you feel you have nothing left to give!!! Then is when it is the hardest for me, when I feel like I am empty and at the end of my rope. Thankfully, I am figuring out how to "refill" so that we don't experience that as often... I am so glad you found my post useful. I never know whether or not to post because I have a really different perspective on all of this than some, and I don't want to offend or ever make anyone feel bad... All I have is my own experience, if you know what I mean... Anyway, thanks for the response!!!~hugs~Rabecca> Wow! Rabecca, I can hardly type for the tears! That is the greatest explanation I have ever heard! You need to take a moment and pat yourself on the back for a job well done and pat you son on the back for me too!(softly) > My son is just 91/2 yrs. and I can relate to alot of the issues in your letter. I fall short on not understanding why he can't do some of the things that I think he should do. I'm learning and I'm also ashamed of the way I have treated him at times. When he can't do something he freezes up and then I yell because he isn't doing it and then I feel bad for yelling. I'm learning and I apologize to him quite often for all my mistakes but I know that it still hurts him down deep and I don't want to do that to him. > I'm glad you posted because now I am determined to go out of my way to understand him more and to encourage him more in the future.> > Thank you,> Sally>

[Guest guest]

Rabecca, Wow!

You tell really good stories! You should write a book about your son

it is soooo interesting. There were a few things you mentioned like

not putting out his hands when learning to walk that I could remember

Toby doing and not really thinking about that having anything to do

with Autism. What a truly amazing young man you have. You are really

lucky and must be immensly proud of him.

He will probably be somekind of rocket scientist!!

Thank you for sharing:)

Sherryxx

> ,

>

>

>

> How about if I start even further back??? ~winks~ When I was three

months

> pregnant, I began having bleeding and cramping. The doctors covered

by my

> insurance at that time were sure that the baby wasn't placed high

enough in

> the uterus and that I would loose him. They recommended a DNC. I

had lost a

> child less than a year prior to SIDS and was emotionally and

mentally dead

> set against loosing another. The cramping and bleeding went on for

another 2

> ½ months, with me being rushed into the ER almost weekly. By the

end of this

> time, my mom convinced me to go to a doctor outside our insurance

plan for a

> second opinion. (My husband had shared with her that he had seen my

chart

> and they had the word " SIDS " in bold red letters across the top of

the top

> page, so the doctors who saw me discounted my emotions/thoughts and

sent me

> on my way) For a second opinion, I went to a public health clinic.

Upon a

> visual exam (something the doctors under the covered plan refused

to do,

> saying they might contaminate the area) the doctor remarked that I

had a

> very severe vaginal infection. They began running tests. I tested

positive

> for vaginal strep. Because I had had the infection for so long, it

had

> spread into the uterus and there was another infection within the

amniotic

> fluid. They told me that I had two options… The first was to abort

the

> pregnancy (late term abortion). My other option was to take

medication that

> would clear the infections, but that could have serious side

effects. They

> said that there was a good chance that Tyler would be born deaf and

blind…

> We chose life and to cancel the health insurance policy that

required us to

> go back to the doctors who put him at risk!!!

>

>

>

> When Tyler was born, he didn't open his eyes. Though the doctors

could get

> the pupils to respond to light, he refused to open them of his own

accord

> for three weeks. Then it was squinting(even in darkened rooms) and

his eyes

> didn't track together or seem to focus… We knew he could hear well.

He was

> so sensitive hearing wise that any miniscule sound was painful to

him. A

> normal volume on the radio or TV, another child talking or

laughing, our

> bumping into something or setting something down too hard on the

table… Yet

> we were ecstatic… HE COULD HEAR!!! When one of his eyes started to

focus and

> partially track, we celebrated for over a week… HE COULD SEE!!!

Every little

> thing became monumental. Tyler had a heart monitor because every

time he

> fell asleep, he slowed or stopped breathing and didn't restart

without

> intervention (very scary for parents who had one already die of

SIDS)He had

> stopped breathing 18 times in his first 24 hours of life…

Thankfully, he

> grew out of this as well…

>

>

>

> When Tyler was an infant, we noticed him missing milestones. The

doctors

> explained this away, saying that many kids hooked to a machine 24

hours a

> day were delayed, but that they caught up later on. We noticed that

he would

> focus on one thing for extended periods of time. The doctors

explained this

> away too… When he skipped markers, the doctors said that if they

weren't met

> by the time he was five, then it would be time to worry, that we

were being

> overly paranoid… At one year, Tyler was not talking. He could not

crawl or

> go from laying to sitting up. He couldn't let go of something and

remain

> standing in one spot. Yet, when he learned to roll over at 8 ½

months, he

> concentrated on trying from back to front one direction… Then when

he was on

> his front, he very methodically tried to roll the same direction to

his

> back… He learned how to continue rolling to the right and could

roll all the

> way across the floor in one direction. Within another day, he

learned how

> kicking his feet could change his body position so that he could go

around

> obstacles while rolling around the house… He didn't learn how to

roll the

> other direction until 11 months old, but could get anywhere he

wanted to get

> in the house. The doctors said that he wasn't probably going to be a

> crawler, that he had learned a different mode of transportation

instead.

>

>

>

> At 13 months, if we set Tyler in front of a couch on one side of a

small

> room, he could very carefully turn around and lean forward. Then he

would

> literally run across the room until he grabbed onto the other couch

on the

> other side. If there was more than 7 feet between the two, he would

end up

> landing on his face, as he was as yet unable to catch himself with

his

> hands/arms or able to stand up without falling or moving forward by

> stepping. This was the way he took his first steps.

>

>

>

> Tyler didn't start trying to talk much until he was 2-2 ½. Then,

when he

> said something, it was all ran together, but was in complete

sentences

> instead of individual words. He skipped the word stage and went on

to

> sentences. Much of what he said was a repetition of songs and books

that we

> had read to him. He could recite whole Doctor Sues books, songs

that I sang

> to him, rhymes that we had done, finger plays without any motions,

etc. If

> he heard it, it seemed he could recite it, but still didn't do much

with

> individual words. By 3, he became obsessed with things. He began

asking

> questions, telling us about his observations, play acting in his

own little

> world. He also would play along side others, but it seemed he

always led the

> group in activities, his activities… Others his age at that time

naturally

> followed along, because he seemed to know so much and have so many

ideas of

> what to try. He was our little absent minded scientist… At 3 ½

Tyler picked

> up a magazine at the checkout counter of the grocery store. He

turned it

> upside down and began reading the headlines aloud. It was our first

clue

> that he could read. Numbers and amounts also fascinated Tyler at

that time.

> He could play for hours with a couple containers and different

material to

> put in them, seeing how much they weighed, how much fit in which

etc. At

> four, he learned how to do an awkward crawl and could run, but

still couldn'

> t catch himself when he fell. His doctors were all thrilled with his

> progress, saying that they had been right all along, that he had

more than

> caught up with the kids his own age. After all, look at how smart

he was!

>

>

>

> Prior to Kindergarten, our school had a day that the kids came in

to meet

> the teacher and allow the teacher to determine if they were ready

to start

> or if they should hold off another year. Tyler was very excited

because he

> viewed school as a place of learning, and that was still his

obsession. He

> had been setting his own alarm for over six months and doing

a " school

> morning routine " to prepare for the day he would start. Before we

left the

> house, we warned him that part of the time we would be talking to

his

> teacher and that he would have to be patient. To occupy himself, he

brought

> along a new Goosebumps book that he was reading. His teacher tried

really

> hard. I have to give her that… but it didn't go real well as far as

Tyler

> was concerned. She looked down upon him, as if she knew more, and

that

> really got him going. She told him that he would learn his letters.

He

> showed her how he could read his book. She told him that he could

learn the

> difference of " to, two, and too " and he recited them to her and

told her how

> he liked to read the dictionary. She told him that he would learn

his

> numbers, and he told her that he could multiply and divide. She

told him

> that he needed to concentrate on adding and subtracting and he

asked her why

> he should if he already knew how to do that. Later that month, she

finally

> got him… She could show him how to write and how to cut… Well, she

tried…

> sort of… She put the paper in front of him several times that year,

but she

> didn't do anything to help him with his grip or to support his

learning how

> to make shapes (we didn't know he had spatial issues at that time

or that

> his eyes couldn't track in one direction). He still couldn't color

something

> in, write any letter without picking up his pencil 15-30 times and

trying to

> create it like a photograph of something. Lines didn't make sense

to him. He

> didn't see the continuity of them. He could recognize whole shapes

like

> letters but didn't seem to be able to create them. Most of the time

in

> kindergarten, the teacher was so frustrated with him that she

either had him

> trying to lay down his head and sleep so that he wasn't correcting

her or

> the other kids or she was frustrated that he couldn't do something

as simple

> as writing. She finally gave up, saying that he just wouldn't be

able to do

> that yet, that it would kick in in its own good time.

>

>

>

> His 1-2 grade teacher thought he was the heaven and the earth and

that his

> shortcomings didn't matter at all. She figured that eventually,

everyone

> would write on computers anyway, so why stress over him not being

able to

> get his thoughts or answers on paper. She let him spend much of his

day in

> the library, where the librarian taught him the Dewy Decimal System

and how

> to find subjects he was interested in. Thus began his obsession with

> libraries and research. Through his experiments he caused several

power

> surges in our neighborhood, one minor outage, and one blown

transformer that

> they had to replace. We felt quite lucky that he didn't burn down

the house.

> It took us a while to explain the idea of safety and that not all

> experiments are safe. He hadn't thought of the potential negative

> consequences, just that he might be successful in getting certain

> experiments to work. I honestly don't know where he got the idea

that he

> could weld with a battery in a light socket and a couple strands of

metal

> that I still don't know where he found… It was one of his successful

> attempts, but boy it made me mad, as the flying sparks created burn

holes in

> the rug and shorted out our power… AGAIN!!!

>

>

>

> His 3rd grade year is when it all hit the fan. His teacher was a

> perfectionist. If something wasn't written clearly or " right " it

had to be

> redone. No matter how many times I went to her, she insisted on

keeping him

> in every recess to recopy his work, which was never good enough the

second

> time around either. He missed the breaks and had absolutely no

social

> interaction. The other kids noticed him being singled out and began

to

> really bully him severely. The teacher didn't help by stopping her

oral

> quizzes and staring at him until he was finished writing the

answer. Since

> the other kids were faster, they would look up, see where she was

looking,

> and then they would look at him too. He would end up with the

entire class

> looking at him after every question, making the pressure worse,

especially

> since she would count words wrong that he spelled right just

because his

> writing wasn't neat enough. We began experiencing major emotional

> difficulties with him. His shortcomings became magnified. He felt

like such

> a failure, an outsider, someone would just couldn't succeed.

Anxiety and

> depression set it and he began crying at school, screaming at

people, and

> fell further and further behind in school. His physical skills

seemed to

> deteriorate with the stress. Since his concentration was off, he

was unable

> to keep up the compensations he had figured out. He just couldn't

think fast

> enough to react. Yet, he wanted so badly to be normal. He took off

trying to

> ride a bike without training wheels. He got less than three houses

before he

> fell and required both sub-dermal and surface stitches on his face

because

> he still couldn't balance for long or catch himself when he fell.

We began

> noticing that he really did act younger than the other kids his

age. He

> still pretended he was an animal often, made weird noises, played

beside

> others instead of with them, and had many lacking skills… It was at

this

> time that we asked for a letter from the teacher stating the

behaviors and

> skill deficits she saw and were finally able to get a doctor to

give us a

> referral for diagnostics.

>

>

>

> We had never heard of Asperger's Syndrome. The name alone was

enough to send

> me into a panic… What was wrong with our son? It sounded so

serious, so

> official and yet so gross (the doctor pronounced it " Ass Burgers " )

We were

> devastated at first… How could our little boy who overcame so much

have a

> syndrome? He was so good at so many things… What did we do wrong???

Anyway,

> that was when my research started, and it hasn't ever stopped… I

thank the

> Lord for my son. He has taught me so much about life, about myself,

and

> about perseverance! I am a better person because of who he is, and

I let him

> know that often (which has really helped the self esteem over the

years!!!)

>

>

>

> Anyway, I think this is what you were kind of looking for…

>

>

> ~hugs~

> Rabecca

>

>

>

>

> Hi Rabecca-

> This is a great post. I am wondering if you could share a little

> about your son's early years. Did he have any motor or language

> delays or oddities in speech as a toddler/preschooler that were

> addressed with therapy, or did you only begin therapy after he was

> dx'd? Did he/does he have problem solving, abstract thinking, and/or

> incorporating multiple perspective issues? Was there an early dx

> that was incorrect or were the issues not noticed until later? Just

> curious. This is a great post for all struggling with the challenges

> of a child with Aspergers.

>