Re: HELLO EVERYONE, My Intro - - WARNING: LONG

[Guest guest]

Hello Grace and welcome to the group. I'm sure having twin girls with autism is a challenge, but you WILL rise to it because you HAVE to; there really is no choice in the matter for parents. As much of as cliche as it sounds, "that which does not break me, makes me stronger" is true, but the author forgot to add at the end of the statement, "EVENTUALLY". Denial is part of the process, don't beat yourself up for not accepting the diagnosis of autism sooner. Denial is what allows us to build up the strength to move on to the accepting stage.

As far as I'm concerned, you are on the right track- read, read, read, and educate yourself.

And about the crying "jags", those are OK, too. We've all been there, and sometimes I still have my low moments and I cry about how unfair life is and why does MY daughter have autism (she's eight now). Then there are the great moments, the times when I see something "click" in her eyes and the moments when nothing could be brighter than her smile which lights my world.

Good luck on your journey, and again, welcome to the group!

Vickie N.

[Guest guest]

God Speed to you Grace, we probably all feel akin to you and your journey

ahead. As time passes I have become aware that we actually have children

that are amazing. Imagine being put into a wold that is an absolute foreign

object to you, just the fact that our kids reach out to be any part of our

confusing world is a gift. I cant imagine any greater gift than having a

child who is a complete part of your soul, everything my daughter is comes

from our heart, every word she speaks, every learned motion comes from us.

Make your life easy during this " racoon " stage. Do you need lamps on the

table? Does the silverware have to be in a drawer that is reachable. The

hardest thing of all for us, but in the end the most rewarding

was...Yikes...why would we allow a TV in the house since it became more

important and comforting than ies family. Out went the TV and in about

1 month...of pure(your know what) She started seeking us out for

entertainment as we made everything we did look like a blast. Structure will

also help you in your day. You are about to spend years and years

sacrificing who you are in order to help your girls find out who they are.

You will never be alone.

[Guest guest]

welcome aboard, this is a great group and lots of people online to give you support. my girl is 13 now and i remember when the school and doctors announced the word "autism" to us. we were sad and knew parenting would be unlike what we had envisioned it to be! i even tried to take my girl to gym class and mommie & me groups until i realized that she was not talking or interacting with the other children-it took me awhile to accept this dx but once accepted it, i have done everything to keep a TEAM of professionals around us and have a behaviorist come to home and behavior assistant come to home and line up respite caregivers etc. you see, we had a choice-we adopted. we adopted from Romania back in 1991-little did we know the word austim and if we had-our little girl would not have been saved from the orphanage. We thought she was delayed but due to neglect and environmental reasons. There is a new term they are using now and that is: "institutionalized autism". I have never once regretted bringing her home-we only love her more because she needs more love. But we had so much to learn about behaviors and parenting a child w/autism. ~heidiho~ melbourne fl HELLO EVERYONE, My Intro - - WARNING: LONG Hi everyone,I went on a "support group joining rampage" in the last several days, allabout autism. I guess this signifies that I am at the end of my denialphase, and the beginning of my "accept and make a difference" stage? Goodgrief, I hope so. What a long and ugly two years it's been!Oh, I guess introducing myself would be appropriate. My name is Grace, momto Sydney and Madison, twin girls, age 3 yrs and 3 months. My husband isShaun, and he is a GP dentist here in Northern California. We've beenmarried for 4.5 years - - he is 32, and I am holding on tight to 28....although it is due to end in 2 months (gulp). We've been "together" for,gosh.... about 8 years now?Oh, back to the topic. As mentioned, Syd and Madi are twins, born 6.5 hoursapart, and also - - one was a natural delivery, and Madison was a c-sectionbaby. Long story short, it was quite a nightmarish delivery, but a partycompared to the pregnancy! The girls are really fabulous children.Autistic or not, I would not change them for all the normal kids in theworld. (Today was a good day, if you can't tell, because normally, Iwould offer them to you, and include FREE SHIPPING and get a writtenguarantee of NO RETURNS!!)For the time being, here is where we are, where diagnoses are concerned.Madison is on the spectrum somewhere, although for right now, the pedineurologist will only say 'PDD-NOS' - - as if that somehow makes my world alittle brighter. She does not speak. She makes a lot of sounds - -syllables and such - -- but no true words. In fact, she doesn't even careto repeat a word after me, although she rather enjoys it when I repeat afterher, and she will continue 'the game'; IF she feels like it.Sydney.... well, she is just a big mystery to everyone, myself included.I've read enough on this topic to know without a dx that my little Madisonis indeed autistic, or at LEAST that she will indeed be dx'd with autism.(yep.... I still have that flicker of hope that somehow, we will wake up oneday and she will be speaking in sentences....)With Sydney, I really can't say. When the specialists say 'borderline' - -Sydney is who they speak of.She doesn't have speech - - - although she understands more than Madison,and heeds me more than her sister also. Eye contact is no problem, and sheplays well with anyone EXCEPT her twin, go figure. She does not throwtantrums unless you take away her toys, or I have to turn off a videobecause Madison is on the verge of a tantrum because of SOMETHING in thevideo..... She WILL repeat after me when I say words that she knows....simple ones, like "uh-oh" or "puppy" and things like that. (Very, very fewwords, I should add). She POINTS - - but moreso because I taught her topoint. I daresay that it did not come to her naturally. I had to point toevery inch of every page on every book to make her point to things. Now shepoints at anything, even when she isn't indicating something! ;o* Herfavorite toys are not bizarre, like Madison's choices sometimes are. Imean, Syd likes stuffed animals and books, as well as push button toys andthe likes. Madi likes little pieces of paper (which is rather cute) andstars - - - and does play with push button toys, but usually with only ONEbutton. One gets very sick of hearing "E is for Elmo" all day long.......I've taken the batteries out of most of the noise-making toys now. :)Nonetheless, she also has a lot of similar traits to Madison - - and otherautistic kids - - - and with the two of them, they keep me very "busy", toput it super-mildly.So as you can see - my two girls are different, but both have in common thefact that they do not speak. I have been forewarned by the case manager atthe Regional Center and my own neurologist that if at all possible, bothwill be dx'd with autism in order to qualify for the services they need.Their appointment to see the neurologist again is at the end of July. In acouple of months, we expect to start speech therapy, occupational therapy,and some sort of preschool with the Pleasanton School District. (I amalready rolling my sleeves up for this dreaded IEP business). It seems theonly 'therapy' they will not be needing is physical therapy.I've suspected something was "not quite right" since Madison was a littleover a year old, when two things happened. She lost her ability to repeatafter me and babble, and secondly - - she started plugging her ears. Thelatter coincided with my yelling at her, because it was also at this timeshe started to climb everything and anything, and I was yelling for thebetter part of the day. But by 18 months, I was doing research on theinternet and in books, and - - - well, I just knew. You can imagine myhorror when one day I realized that Sydney wasn't saying a word more thanher sister. Oh, and did I mention - - they are FRATERNAL twins? Lucky forme, I was able to spend about a year in full denial. I would just bang myhead against the monitor (not literally, mind you) everytime I continued onmy reading quest about autism, and found another similarity or symptom thatI matched up with my girls. Every story I read would make me bawl my eyesout, but being the moron I am, I kept on reading, totally oblivious to thefact that IGNORANCE is indeed bliss. Well, now I know, and now it's toolate to change it. (Go figure, I forget the day of the week, I forget thatI am not wearing clothes, and I forget that my husband is home, but I can'tforget that my girls have problems for even a single minute of my day.)I have 'theories' of what caused this, but I also know and accept that thesetheories will probably be proven wrong time and again. I'll probably have amillion more theories before I am done theorizing, LOL. But to my lastdying breath, I will find out what went awry, and what happened here. Lifeis tough around here, and I won't even kid you guys by saying that I amhappy on most days. I am usually quite miserable and totally at my wit'send. Quite often, you can find all three of us sprawled out on the floor,crying our hearts out. (My husband comes home to a sight like this onoccasion, LOL.) But.... like all of you, I am trying my best, and if mybest is not as great as someone else's on some days, so be it. I'm learningquickly that I just can't compare myself to this mom or that mom, and liveanother day - - just as comparing my girls to other kids will get menowhere very rapidly. I am thinking that the best place to concentrate allthis pent up anger and energy I have in me is to read, learn, and speculate.While my girls ARE difficult and surely not what I was expecting -- they arealso the most perfect creatures I've ever laid eyes on. I am constantlyamazed at how perfect their imperfections can be. (I'm sure all of you outthere can relate to what I mean). I don't understand why God would thinkthis would be something I can handle.... two autistic kids, goodheavens..... but my choices seem to be either to prove He was wrong bygiving up and failing at my life - - - OR to live up to His expectationsand rise to the occasion, so to speak. (Or on some days, I like to think ofthis as 'Showing HIM he picked on the WRONG person!" LOL) Whatever thereasons are for having these two girls end up in my life, in my home, and inmy heart - - - I am thankful. I may not always show it, but I am. Heck, Imay not even know it most of the time - - but I hereby put it inriting - - - I am thankful for my wonderful little girls.I am also thankful that there are others out there like my girls, and likeme. I would never wish this on any of you, ever. But so long as you guysare out there with me, it's a little less lonely, and a little less bleak...and I can't complain about that. I guess I should thank my lucky stars mygirls don't have some syndrome that will end up being named after them!(Could you imagine??? Being the ONLY known person on the face of the planetto have a child with a certain disease???) In addition to this, I feelLOADS better seeing that there ARE little GIRLS out there with thiscondition. For awhile there, I was feeling REALLY flabbergasted that I hadbeat all the odds by having twins (which do NOT run in my familyanywhere...) and then having them so far apart in different birthing routes,and then to have two GIRLS end up being autistic..... boy, was I bummed outand ready to move to Vegas to try my luck. But I see now that in that lastdept, I didn't beat such high odds afterall...............................So anyhow, I just wanted to introduce myself (in a long winded kind of wayLOL) and also thank you guys for sharing your opinions, stories, and adviceso freely. I am relatively new to this world of yours - - - but am learningas much as I can, as efficiently as I can. So - - - thanks. :)Grace

[Guest guest]

Welcome Grace , I love your daughters names our road is bumpy ,a few

curves and on really good days as smooth as glass but its a special road and

us wild moms can drive anything I was not doing too good with all the

autism information (did not find out about it till she was 10 years old )

then I joined this group and a few others . It does make a difference,Grace.

In your letter you said ( flicker of hope ,we will wake up and she will be

speaking in sentences) I did too every single night I prayed to hear

said Mommy but now ohhhh me ! lol has been labeled with severe autism

, she has alot of usual behaviors but she is wonderful ,my best friend and a

great ,super daughter who is 15 years old and about to go to High school in

August. (mom is not ready for this) Right now as I am typing this ,thinking

about when was 3 , 4 ,5 years old ,well, she did not talk , could not

walk down a flight of stairs , I did not let her near water ,I did not take

her anywhere for fear of people commenting on her behavior . Grace , let me

tell ya , this girl goes everywhere and does anything she wants . I accepted

her just the way she is and if others dont like it well , so what! I want to

share the good ,bad and the ugly with you Good > She goes to musuems,

zoos, art gallerys,etc. we go all summer.She swims like a fish at the pool ,

at the lake she rides the jet ski , she rides horses, and last week at the

pizza hut the waitress ask us what we wanted to drink and Looked her

in the face and said Dr. Pepper !!!!!! now the bad...well she is so excited

about going to High school that she is wanting her back pack today and

yesterday and the day before that ! Yes, I am pulling what is left of my

gray hair out . She is very picky about things , any and everything must be

in order . We are learning to live with it slowly ,very slowy . My son knows

his room must be clean or else the clean patol will get him. is 9

years old and loves her with all his heart . now the ugly..... well she will

loudly state she has got to go poop! ( silly I know but I am proud of her

for saying it ) she flaps her hands alot and people stare but we dont care

anymore. She is happy and laughs soooo much.She hugs us ,ask us for sugars

,and takes her baby doll everywhere we go. If some one is rude to us ,we

laugh and go on. If someone ask about , and I tell them how

special she is. She washes dishes , clothes ,dusts ,makes her bed, I dont

think many 15 year old girls do all that she does. I am very proud of her.

She has come a long way but still has a way to go. She is also deaf from

high fevers and ear infections. She wears hearing aids and signs alittle to

me. She talks ,not in sentences but Lord she does talk and talk and talk....

takes after her mom lol.

I am 42 ,hubby Ted is 44 and we have been married for 20 years. He has had a

very hard time accepting but he has come a long way too. Last weekend

we had friends to the lake and was very social to everyone. Ted was

shocked at how good is. He has not spent time with her. He has been

afraid of her because she could not talk . This coming week he is going to

take a vacation and go with us to places we love to go. Grace , I talk to

,I point , I name any and everything. She can read important things

,not a book but things like signs , menus, labels. She has speech .O.T. and

P.T. at school. If you ever have questions or just want to talk ,I am here.

Sincerely, Donna ( mom to 15 and 9 )

-----------------------------------------------------

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HELLO EVERYONE, My Intro - - WARNING: LONG

> Hi everyone,

>

> I went on a " support group joining rampage " in the last several days, all

> about autism. I guess this signifies that I am at the end of my denial

> phase, and the beginning of my " accept and make a difference " stage? Good

> grief, I hope so. What a long and ugly two years it's been!

>

> Oh, I guess introducing myself would be appropriate. My name is Grace,

mom

> to Sydney and Madison, twin girls, age 3 yrs and 3 months. My husband is

> Shaun, and he is a GP dentist here in Northern California. We've been

> married for 4.5 years - - he is 32, and I am holding on tight to 28....

> although it is due to end in 2 months (gulp). We've been " together " for,

> gosh.... about 8 years now?

>

> Oh, back to the topic. As mentioned, Syd and Madi are twins, born 6.5

hours

> apart, and also - - one was a natural delivery, and Madison was a

c-section

> baby. Long story short, it was quite a nightmarish delivery, but a party

> compared to the pregnancy! The girls are really fabulous children.

> Autistic or not, I would not change them for all the normal kids in the

> world. (Today was a good day, if you can't tell, because normally, I

> would offer them to you, and include FREE SHIPPING and get a written

> guarantee of NO RETURNS!!)

>

> For the time being, here is where we are, where diagnoses are concerned.

> Madison is on the spectrum somewhere, although for right now, the pedi

> neurologist will only say 'PDD-NOS' - - as if that somehow makes my world

a

> little brighter. She does not speak. She makes a lot of sounds - -

> syllables and such - -- but no true words. In fact, she doesn't even

care

> to repeat a word after me, although she rather enjoys it when I repeat

after

> her, and she will continue 'the game'; IF she feels like it.

> Sydney.... well, she is just a big mystery to everyone, myself included.

> I've read enough on this topic to know without a dx that my little Madison

> is indeed autistic, or at LEAST that she will indeed be dx'd with autism.

> (yep.... I still have that flicker of hope that somehow, we will wake up

one

> day and she will be speaking in sentences....)

>

> With Sydney, I really can't say. When the specialists say 'borderline' -

-

> Sydney is who they speak of.

> She doesn't have speech - - - although she understands more than Madison,

> and heeds me more than her sister also. Eye contact is no problem, and

she

> plays well with anyone EXCEPT her twin, go figure. She does not throw

> tantrums unless you take away her toys, or I have to turn off a video

> because Madison is on the verge of a tantrum because of SOMETHING in the

> video..... She WILL repeat after me when I say words that she knows....

> simple ones, like " uh-oh " or " puppy " and things like that. (Very, very few

> words, I should add). She POINTS - - but moreso because I taught her to

> point. I daresay that it did not come to her naturally. I had to point

to

> every inch of every page on every book to make her point to things. Now

she

> points at anything, even when she isn't indicating something! ;o* Her

> favorite toys are not bizarre, like Madison's choices sometimes are. I

> mean, Syd likes stuffed animals and books, as well as push button toys and

> the likes. Madi likes little pieces of paper (which is rather cute) and

> stars - - - and does play with push button toys, but usually with only ONE

> button. One gets very sick of hearing " E is for Elmo " all day long.......

> I've taken the batteries out of most of the noise-making toys now.

> Nonetheless, she also has a lot of similar traits to Madison - - and other

> autistic kids - - - and with the two of them, they keep me very " busy " , to

> put it super-mildly.

>

> So as you can see - my two girls are different, but both have in common

the

> fact that they do not speak. I have been forewarned by the case manager

at

> the Regional Center and my own neurologist that if at all possible, both

> will be dx'd with autism in order to qualify for the services they need.

> Their appointment to see the neurologist again is at the end of July. In

a

> couple of months, we expect to start speech therapy, occupational therapy,

> and some sort of preschool with the Pleasanton School District. (I am

> already rolling my sleeves up for this dreaded IEP business). It seems

the

> only 'therapy' they will not be needing is physical therapy.

>

> I've suspected something was " not quite right " since Madison was a little

> over a year old, when two things happened. She lost her ability to repeat

> after me and babble, and secondly - - she started plugging her ears. The

> latter coincided with my yelling at her, because it was also at this time

> she started to climb everything and anything, and I was yelling for the

> better part of the day. But by 18 months, I was doing research on the

> internet and in books, and - - - well, I just knew. You can imagine my

> horror when one day I realized that Sydney wasn't saying a word more than

> her sister. Oh, and did I mention - - they are FRATERNAL twins? Lucky

for

> me, I was able to spend about a year in full denial. I would just bang my

> head against the monitor (not literally, mind you) everytime I continued

on

> my reading quest about autism, and found another similarity or symptom

that

> I matched up with my girls. Every story I read would make me bawl my

eyes

> out, but being the moron I am, I kept on reading, totally oblivious to the

> fact that IGNORANCE is indeed bliss. Well, now I know, and now it's too

> late to change it. (Go figure, I forget the day of the week, I forget

that

> I am not wearing clothes, and I forget that my husband is home, but I

can't

> forget that my girls have problems for even a single minute of my day.)

>

> I have 'theories' of what caused this, but I also know and accept that

these

> theories will probably be proven wrong time and again. I'll probably have

a

> million more theories before I am done theorizing, LOL. But to my last

> dying breath, I will find out what went awry, and what happened here.

Life

> is tough around here, and I won't even kid you guys by saying that I am

> happy on most days. I am usually quite miserable and totally at my wit's

> end. Quite often, you can find all three of us sprawled out on the floor,

> crying our hearts out. (My husband comes home to a sight like this on

> occasion, LOL.) But.... like all of you, I am trying my best, and if my

> best is not as great as someone else's on some days, so be it. I'm

learning

> quickly that I just can't compare myself to this mom or that mom, and live

> another day - - just as comparing my girls to other kids will get me

> nowhere very rapidly. I am thinking that the best place to concentrate

all

> this pent up anger and energy I have in me is to read, learn, and

speculate.

>

> While my girls ARE difficult and surely not what I was expecting -- they

are

> also the most perfect creatures I've ever laid eyes on. I am constantly

> amazed at how perfect their imperfections can be. (I'm sure all of you

out

> there can relate to what I mean). I don't understand why God would think

> this would be something I can handle.... two autistic kids, good

> heavens..... but my choices seem to be either to prove He was wrong by

> giving up and failing at my life - - - OR to live up to His expectations

> and rise to the occasion, so to speak. (Or on some days, I like to think

of

> this as 'Showing HIM he picked on the WRONG person! " LOL) Whatever the

> reasons are for having these two girls end up in my life, in my home, and

in

> my heart - - - I am thankful. I may not always show it, but I am. Heck,

I

> may not even know it most of the time - - but I hereby put it in

> riting - - - I am thankful for my wonderful little girls.

>

> I am also thankful that there are others out there like my girls, and like

> me. I would never wish this on any of you, ever. But so long as you guys

> are out there with me, it's a little less lonely, and a little less

bleak...

> and I can't complain about that. I guess I should thank my lucky stars my

> girls don't have some syndrome that will end up being named after them!

> (Could you imagine??? Being the ONLY known person on the face of the

planet

> to have a child with a certain disease???) In addition to this, I feel

> LOADS better seeing that there ARE little GIRLS out there with this

> condition. For awhile there, I was feeling REALLY flabbergasted that I

had

> beat all the odds by having twins (which do NOT run in my family

> anywhere...) and then having them so far apart in different birthing

routes,

> and then to have two GIRLS end up being autistic..... boy, was I bummed

out

> and ready to move to Vegas to try my luck. But I see now that in that

last

> dept, I didn't beat such high odds afterall...............................

>

> So anyhow, I just wanted to introduce myself (in a long winded kind of way

> LOL) and also thank you guys for sharing your opinions, stories, and

advice

> so freely. I am relatively new to this world of yours - - - but am

learning

> as much as I can, as efficiently as I can. So - - - thanks.

>

> Grace

>

>

>

>

>

>

[Guest guest]

Hello, Grace. Your girls are at a tough age -- even if they weren't

autistic, three years old is a tough age. There will always be

dificulties and challenges, but things will get easier (and harder)

as they grow up.

You are right not to compare them to other children. My daughter is

twenty-one, and it can still make me cry to compare her to the other

children her own age. So don't do it if you can help it.

I guess I never had a denial stage with Juniper, because she wasn't

diagnosed until she was almost six. We'd known since she was only a

few months old that something wasn't right, so by the time we got a

diagnosis, even though it was a shock, it was also a relief. I think

the hardest thing, when there is something wrong with one of your

children, is not knowing what it is so you can start doing something

about it.

Do you have anyone nearby (family or a close friend) who can give you

respite from time to time? That will help, and you need to continue

to nurture your relationship with your husband, also. Too often

marriages break up when there is a handicapped child in the house,

and can you imagine how hard it would be to take care of those two

little girls by yourself? So treasure your husband and your

relationship.

Have you looked into the dietary interventions for autistic

children? That would be a really important place to start, as if

they are among the very large percentage of autistic children who

have symptoms of celiac disease, the celiac disease is causing

nutrients to not get to their brains and they are at a critical age

still for their brain development. So no matter how hard changing

the family diet may be, that is the first and most important step to

take. You may see some improvement in their behavior fairly quickly,

too, if they haven't been on the gluten and casein free diet already,

and that would help you to cope better. I wish we'd known about the

special diet when Juniper was little, because she had the symptoms of

celiac disease -- now I don't see a lot of improvement from the diet,

I think we started too late. So if you aren't already on it, please

don't wait.

You mentioned God in your message. If you believe in Him, a church

family could be a big help to you in the years to come, too. I hope

you don't think I'm being bossy, it's just that I've been there --

not with twins, thankfully!! Juniper was all I could handle with her

two older sisters, and God knew that! -- and hope to help others get

through a little better than I did! My heart goes out to you and

your family.

Kathleen

Stonycroft

Sanbornton, NH

> Hi everyone,

>

> I went on a " support group joining rampage " in the last several

days, all

> about autism. I guess this signifies that I am at the end of my

denial

> phase, and the beginning of my " accept and make a difference "

stage? Good

> grief, I hope so. What a long and ugly two years it's been!

>

> Oh, I guess introducing myself would be appropriate. My name is

Grace, mom

> to Sydney and Madison, twin girls, age 3 yrs and 3 months. My

husband is

> Shaun, and he is a GP dentist here in Northern California. We've

been

> married for 4.5 years - - he is 32, and I am holding on tight to

28....

> although it is due to end in 2 months (gulp). We've

been " together " for,

> gosh.... about 8 years now?

>

> Oh, back to the topic. As mentioned, Syd and Madi are twins, born

6.5 hours

> apart, and also - - one was a natural delivery, and Madison was a c-

section

> baby. Long story short, it was quite a nightmarish delivery, but a

party

> compared to the pregnancy! The girls are really fabulous children.

> Autistic or not, I would not change them for all the normal kids in

the

> world. (Today was a good day, if you can't tell, because

normally, I

> would offer them to you, and include FREE SHIPPING and get a written

> guarantee of NO RETURNS!!)

>

> For the time being, here is where we are, where diagnoses are

concerned.

> Madison is on the spectrum somewhere, although for right now, the

pedi

> neurologist will only say 'PDD-NOS' - - as if that somehow makes

my world a

> little brighter. She does not speak. She makes a lot of sounds - -

> syllables and such - -- but no true words. In fact, she doesn't

even care

> to repeat a word after me, although she rather enjoys it when I

repeat after

> her, and she will continue 'the game'; IF she feels like it.

> Sydney.... well, she is just a big mystery to everyone, myself

included.

> I've read enough on this topic to know without a dx that my little

Madison

> is indeed autistic, or at LEAST that she will indeed be dx'd with

autism.

> (yep.... I still have that flicker of hope that somehow, we will

wake up one

> day and she will be speaking in sentences....)

>

> With Sydney, I really can't say. When the specialists

say 'borderline' - -

> Sydney is who they speak of.

> She doesn't have speech - - - although she understands more than

Madison,

> and heeds me more than her sister also. Eye contact is no problem,

and she

> plays well with anyone EXCEPT her twin, go figure. She does not

throw

> tantrums unless you take away her toys, or I have to turn off a

video

> because Madison is on the verge of a tantrum because of SOMETHING

in the

> video..... She WILL repeat after me when I say words that she

knows....

> simple ones, like " uh-oh " or " puppy " and things like that. (Very,

very few

> words, I should add). She POINTS - - but moreso because I taught

her to

> point. I daresay that it did not come to her naturally. I had to

point to

> every inch of every page on every book to make her point to

things. Now she

> points at anything, even when she isn't indicating something! ;o*

Her

> favorite toys are not bizarre, like Madison's choices sometimes

are. I

> mean, Syd likes stuffed animals and books, as well as push button

toys and

> the likes. Madi likes little pieces of paper (which is rather

cute) and

> stars - - - and does play with push button toys, but usually with

only ONE

> button. One gets very sick of hearing " E is for Elmo " all day

long.......

> I've taken the batteries out of most of the noise-making toys

now.

> Nonetheless, she also has a lot of similar traits to Madison - -

and other

> autistic kids - - - and with the two of them, they keep me

very " busy " , to

> put it super-mildly.

>

> So as you can see - my two girls are different, but both have in

common the

> fact that they do not speak. I have been forewarned by the case

manager at

> the Regional Center and my own neurologist that if at all possible,

both

> will be dx'd with autism in order to qualify for the services they

need.

> Their appointment to see the neurologist again is at the end of

July. In a

> couple of months, we expect to start speech therapy, occupational

therapy,

> and some sort of preschool with the Pleasanton School District. (I

am

> already rolling my sleeves up for this dreaded IEP business). It

seems the

> only 'therapy' they will not be needing is physical therapy.

>

> I've suspected something was " not quite right " since Madison was a

little

> over a year old, when two things happened. She lost her ability to

repeat

> after me and babble, and secondly - - she started plugging her

ears. The

> latter coincided with my yelling at her, because it was also at

this time

> she started to climb everything and anything, and I was yelling for

the

> better part of the day. But by 18 months, I was doing research on

the

> internet and in books, and - - - well, I just knew. You can

imagine my

> horror when one day I realized that Sydney wasn't saying a word

more than

> her sister. Oh, and did I mention - - they are FRATERNAL twins?

Lucky for

> me, I was able to spend about a year in full denial. I would just

bang my

> head against the monitor (not literally, mind you) everytime I

continued on

> my reading quest about autism, and found another similarity or

symptom that

> I matched up with my girls. Every story I read would make me bawl

my eyes

> out, but being the moron I am, I kept on reading, totally oblivious

to the

> fact that IGNORANCE is indeed bliss. Well, now I know, and now

it's too

> late to change it. (Go figure, I forget the day of the week, I

forget that

> I am not wearing clothes, and I forget that my husband is home, but

I can't

> forget that my girls have problems for even a single minute of my

day.)

>

> I have 'theories' of what caused this, but I also know and accept

that these

> theories will probably be proven wrong time and again. I'll

probably have a

> million more theories before I am done theorizing, LOL. But to my

last

> dying breath, I will find out what went awry, and what happened

here. Life

> is tough around here, and I won't even kid you guys by saying that

I am

> happy on most days. I am usually quite miserable and totally at my

wit's

> end. Quite often, you can find all three of us sprawled out on the

floor,

> crying our hearts out. (My husband comes home to a sight like this

on

> occasion, LOL.) But.... like all of you, I am trying my best, and

if my

> best is not as great as someone else's on some days, so be it. I'm

learning

> quickly that I just can't compare myself to this mom or that mom,

and live

> another day - - just as comparing my girls to other kids will get

me

> nowhere very rapidly. I am thinking that the best place to

concentrate all

> this pent up anger and energy I have in me is to read, learn, and

speculate.

>

> While my girls ARE difficult and surely not what I was expecting --

they are

> also the most perfect creatures I've ever laid eyes on. I am

constantly

> amazed at how perfect their imperfections can be. (I'm sure all of

you out

> there can relate to what I mean). I don't understand why God would

think

> this would be something I can handle.... two autistic kids, good

> heavens..... but my choices seem to be either to prove He was wrong

by

> giving up and failing at my life - - - OR to live up to His

expectations

> and rise to the occasion, so to speak. (Or on some days, I like to

think of

> this as 'Showing HIM he picked on the WRONG person! " LOL)

Whatever the

> reasons are for having these two girls end up in my life, in my

home, and in

> my heart - - - I am thankful. I may not always show it, but I

am. Heck, I

> may not even know it most of the time - - but I hereby put it in

> riting - - - I am thankful for my wonderful little girls.

>

> I am also thankful that there are others out there like my girls,

and like

> me. I would never wish this on any of you, ever. But so long as

you guys

> are out there with me, it's a little less lonely, and a little less

bleak...

> and I can't complain about that. I guess I should thank my lucky

stars my

> girls don't have some syndrome that will end up being named after

them!

> (Could you imagine??? Being the ONLY known person on the face of

the planet

> to have a child with a certain disease???) In addition to this, I

feel

> LOADS better seeing that there ARE little GIRLS out there with this

> condition. For awhile there, I was feeling REALLY flabbergasted

that I had

> beat all the odds by having twins (which do NOT run in my family

> anywhere...) and then having them so far apart in different

birthing routes,

> and then to have two GIRLS end up being autistic..... boy, was I

bummed out

> and ready to move to Vegas to try my luck. But I see now that in

that last

> dept, I didn't beat such high odds

afterall...............................

>

> So anyhow, I just wanted to introduce myself (in a long winded kind

of way

> LOL) and also thank you guys for sharing your opinions, stories,

and advice

> so freely. I am relatively new to this world of yours - - - but am

learning

> as much as I can, as efficiently as I can. So - - - thanks.

>

> Grace

[Guest guest]

made a good point about the TV -- one I should have made, but

figured I'd said enough!! And I'm glad also to hear that we aren't

the only family with no TV!! We've only had one for a couple of

brief periods in the whole 25 years my husband and I have been

married, actually -- we didn't get rid of it just for Juniper's sake,

but for all our sakes. Our other two daughters did much better

without one, too.

Kathleen

Stonycroft

Sanbornton, NH

[Guest guest]

Hi Grace

Glad to have you on the list. I am new to this list also.

Have only been here a couple of weeks. It is a great place to get

information and support. The age of three is a tough age for every

child and twins would be twice the work. I am sure you will find

everyone here a great support to you.

Tracey

Grace Keh wrote:

Hi everyone,

I went on a "support group joining rampage" in the last several

days, all

about autism. I guess this signifies that I am at the end

of my denial

phase, and the beginning of my "accept and make a difference" stage?

Good

grief, I hope so. What a long and ugly two years it's been!

Oh, I guess introducing myself would be appropriate. My name

is Grace, mom

to Sydney and Madison, twin girls, age 3 yrs and 3 months.

My husband is

Shaun, and he is a GP dentist here in Northern California.

We've been

married for 4.5 years - - he is 32, and I am holding on tight to

28....

although it is due to end in 2 months (gulp). We've been

"together" for,

gosh.... about 8 years now?

Oh, back to the topic. As mentioned, Syd and Madi are twins,

born 6.5 hours

apart, and also - - one was a natural delivery, and Madison was

a c-section

baby. Long story short, it was quite a nightmarish delivery,

but a party

compared to the pregnancy! The girls are really fabulous

children.

Autistic or not, I would not change them for all the normal kids

in the

world. (Today was a good day, if you can't tell,

because normally, I

would offer them to you, and include FREE SHIPPING and get a written

guarantee of NO RETURNS!!)

For the time being, here is where we are, where diagnoses are concerned.

Madison is on the spectrum somewhere, although for right

now, the pedi

neurologist will only say 'PDD-NOS' - - as if that somehow

makes my world a

little brighter. She does not speak. She makes a lot

of sounds - -

syllables and such - -- but no true words. In fact,

she doesn't even care

to repeat a word after me, although she rather enjoys it when I

repeat after

her, and she will continue 'the game'; IF she feels like

it.

Sydney.... well, she is just a big mystery to everyone, myself

included.

I've read enough on this topic to know without a dx that my little

Madison

is indeed autistic, or at LEAST that she will indeed be dx'd with

autism.

(yep.... I still have that flicker of hope that somehow, we will

wake up one

day and she will be speaking in sentences....)

With Sydney, I really can't say. When the specialists say

'borderline' - -

Sydney is who they speak of.

She doesn't have speech - - - although she understands more

than Madison,

and heeds me more than her sister also. Eye contact is no

problem, and she

plays well with anyone EXCEPT her twin, go figure. She does

not throw

tantrums unless you take away her toys, or I have to turn off a

video

because Madison is on the verge of a tantrum because of SOMETHING

in the

video..... She WILL repeat after me when I say words

that she knows....

simple ones, like "uh-oh" or "puppy" and things like that. (Very,

very few

words, I should add). She POINTS - - but moreso because I

taught her to

point. I daresay that it did not come to her naturally.

I had to point to

every inch of every page on every book to make her point to things.

Now she

points at anything, even when she isn't indicating something!

;o* Her

favorite toys are not bizarre, like Madison's choices sometimes

are. I

mean, Syd likes stuffed animals and books, as well as push button

toys and

the likes. Madi likes little pieces of paper (which is rather

cute) and

stars - - - and does play with push button toys, but usually with

only ONE

button. One gets very sick of hearing "E is for Elmo" all

day long.......

I've taken the batteries out of most of the noise-making toys now.

Nonetheless, she also has a lot of similar traits to Madison -

- and other

autistic kids - - - and with the two of them, they keep me very

"busy", to

put it super-mildly.

So as you can see - my two girls are different, but both have in

common the

fact that they do not speak. I have been forewarned by the

case manager at

the Regional Center and my own neurologist that if at all possible,

both

will be dx'd with autism in order to qualify for the services they

need.

Their appointment to see the neurologist again is at the end of

July. In a

couple of months, we expect to start speech therapy, occupational

therapy,

and some sort of preschool with the Pleasanton School District.

(I am

already rolling my sleeves up for this dreaded IEP business).

It seems the

only 'therapy' they will not be needing is physical therapy.

I've suspected something was "not quite right" since Madison was

a little

over a year old, when two things happened. She lost her ability

to repeat

after me and babble, and secondly - - she started plugging her

ears. The

latter coincided with my yelling at her, because it was also at

this time

she started to climb everything and anything, and I was yelling

for the

better part of the day. But by 18 months, I was doing research

on the

internet and in books, and - - - well, I just knew. You can

imagine my

horror when one day I realized that Sydney wasn't saying a word

more than

her sister. Oh, and did I mention - - they are FRATERNAL

twins? Lucky for

me, I was able to spend about a year in full denial. I would

just bang my

head against the monitor (not literally, mind you) everytime I

continued on

my reading quest about autism, and found another similarity or

symptom that

I matched up with my girls. Every story I read would

make me bawl my eyes

out, but being the moron I am, I kept on reading, totally oblivious

to the

fact that IGNORANCE is indeed bliss. Well, now I know, and

now it's too

late to change it. (Go figure, I forget the day of the week,

I forget that

I am not wearing clothes, and I forget that my husband is home,

but I can't

forget that my girls have problems for even a single minute of

my day.)

I have 'theories' of what caused this, but I also know and accept

that these

theories will probably be proven wrong time and again. I'll

probably have a

million more theories before I am done theorizing, LOL. But

to my last

dying breath, I will find out what went awry, and what happened

here. Life

is tough around here, and I won't even kid you guys by saying that

I am

happy on most days. I am usually quite miserable and totally

at my wit's

end. Quite often, you can find all three of us sprawled out

on the floor,

crying our hearts out. (My husband comes home to a sight

like this on

occasion, LOL.) But.... like all of you, I am trying my best,

and if my

best is not as great as someone else's on some days, so be it.

I'm learning

quickly that I just can't compare myself to this mom or that mom,

and live

another day - - just as comparing my girls to other kids

will get me

nowhere very rapidly. I am thinking that the best place to

concentrate all

this pent up anger and energy I have in me is to read, learn, and

speculate.

While my girls ARE difficult and surely not what I was expecting

-- they are

also the most perfect creatures I've ever laid eyes on. I

am constantly

amazed at how perfect their imperfections can be. (I'm sure

all of you out

there can relate to what I mean). I don't understand why

God would think

this would be something I can handle.... two autistic kids, good

heavens..... but my choices seem to be either to prove He was wrong

by

giving up and failing at my life - - - OR to live up

to His expectations

and rise to the occasion, so to speak. (Or on some days,

I like to think of

this as 'Showing HIM he picked on the WRONG person!" LOL)

Whatever the

reasons are for having these two girls end up in my life, in my

home, and in

my heart - - - I am thankful. I may not always show it, but

I am. Heck, I

may not even know it most of the time - - but I hereby put it in

riting - - - I am thankful for my wonderful little

girls.

I am also thankful that there are others out there like my girls,

and like

me. I would never wish this on any of you, ever. But

so long as you guys

are out there with me, it's a little less lonely, and a little

less bleak...

and I can't complain about that. I guess I should thank my

lucky stars my

girls don't have some syndrome that will end up being named after

them!

(Could you imagine??? Being the ONLY known person on the

face of the planet

to have a child with a certain disease???) In addition to

this, I feel

LOADS better seeing that there ARE little GIRLS out there with

this

condition. For awhile there, I was feeling REALLY flabbergasted

that I had

beat all the odds by having twins (which do NOT run in my family

anywhere...) and then having them so far apart in different birthing

routes,

and then to have two GIRLS end up being autistic..... boy, was

I bummed out

and ready to move to Vegas to try my luck. But I see now

that in that last

dept, I didn't beat such high odds afterall...............................

So anyhow, I just wanted to introduce myself (in a long winded kind

of way

LOL) and also thank you guys for sharing your opinions, stories,

and advice

so freely. I am relatively new to this world of yours - -

- but am learning

as much as I can, as efficiently as I can. So - - - thanks.

Grace

[Guest guest]

Hi Grace,

I have a minute (literally) to respond to you.I am a twin Mom too.My

kids are 3.10 months.Daughter has autism,son is typical,although we do have

some concerns about him.Not sure if it's ADHD or just being whacked out for

having me as a Mom the past year.Don't want to bore the group with my details

AGAIN so Email me at MMHJCONLEY@...'m sure we have lots in common

In Friendship, Jo