Re: Introduction to the group

[Guest guest]

>

>Hi Mark,

I agree with everything that Ruth says. Early intervention and being

aware of her diagnosis can only help Miki develop to her full

potential.

If it is any consolation, my son, now 13, was a delightful baby and

preschooler. Bright, outgoing, no problems going to childcare or

different situations, huge vocabulary and easygoing nature. There was

no indication of AS. Once he started school, he had some attention

issues, but he was not hyperactive in any way, so we dismissed any

suggestion of ADHD. A smaller, private school seemed to solve that

problem. Later in elementary, he had problems finishing schoolwork

and homework, we put that down to fine motor issues and poor/slow

handwriting. He has always had a good group of friends.

He became anxious at school in 5th grade. A psychologist gave him

some relaxation tapes and did a few sessions of talk therapy. No

suggestion of AS.

In middle school, it all came to a head and he was failing across all

subjects, was curling up in his seat and hiding under desks.

Difficulty making friends.

We had him assessed a year ago and the neuropsych came back with NLD,

signs of OCD and possibly a tic disorder. The school psych finally

dx'ed AS late '08.

It has been a difficult journey and we are still struggling to find

the most effective ways to support his learning. I feel so sad

sometimes that we didn't know earlier and that we have missed many

years of intervention that may have avoided his current difficulties.

Kylie

> I can't imagine what early intervention could hurt as long as they

> don't ignore her intellectual needs, as she is obviously very

bright.

> Unfortunately, if she is HFA or Asperger, yes, the differences do

> usually get more troublesome as they get older and the demands

placed

> on them get more complex. However, early intervention for HFA/AS

is a

> new thing, too new for people to really know the effect. Every year

> they dx kids younger and younger, and I really think the early

> intervention will make a difference. Especially since by definition

> kids who are HFA/AS have intellectual strengths to draw on to help

> them learn strategies. I would have loved to have known what was

> going on with my son at your daughter's age, so I would say " go

with it " .

>

> Ruth

>

[Guest guest]

Hello Vickie,

Your reply as well as others just confirms my belief that the real

help comes from talking with parents. With Ruth's comments and

yours, I am finally getting a clear picture of my child. I would say

that your comments are really hitting home. I'm just reading this

now and I can't say for certain how my child is communicating but now

I can see that language is very complex and you're right, by the time

we wait for her to get old enough for any delays to become known,

you've missed a lot of time where we could be working with her.

I think your comments have persuaded me to go ahead and order the

examinations since they are available to me, and I can see that I'll

just have to be even more diligent to make sure that what is being

assessed is really applicable to my child. But now I think that

better identifying specific areas to work on would be in my child's

best interests. thanks

Mark

>

> Hi Mark, I had a couple of thoughts as I was reading your reply to

> Ruth. I have a 10 year old PDD-NOS/Mild Aspergers son. I also

have

> 7 and 4 year old girls. When my youngest daughter, Maya, was not

> quite 3 years old the school district offered testing for early

> childhood. Without having any indication of any problems we said

> sure what the heck and had her tested. She was very much like how

> you described Miki.

>

> She was a very good speaker and seemed to have a good vocabulary.

> She was a quiet girl, somewhat reserved but feerless, great motor

> skill. Anyway, they held a evaluation and we expected them to say

> that she was developing typically but low and behold they asked if

> they could do some follow up evaluations. We thought that she was

> probably just being Maya and being a reserved child was unco-

> operative. They spent some time observing her at day care and did

> some more tests and then we had the meeting where they shared their

> results.

>

> What they determined was that she had some cognitive language

> delays. What that meant in our case was that she seemed to not

> understand question words like who, what, where, when and why.

What

> this meant to us was that she would often say something like " I

want

> that " we would ask " what do you want " and she would repeat " I want

> that " and get upset. We always just thought that was Maya being

> stubborn. What they explained is that she didn't understand our

> question and didn't know how to answer. She also did not interact

> with others. She seemed to us to be a rather reserved child who

> wouldn't open up to others until she new them quite well but in

fact

> was just not interacting with anyone. If she needed something she

> would just go without and kind of slink into the background instead

> of asking for help. She was very compliant and couldn't stand to

be

> yelled at by us.

>

> Anyway, fast foreward a year and a half. She has been in early

> childhood since then and let me tell you what a difference in this

> child! She is outgoing and talkative like crazy. She is so

stubborn

> and independant. Still fearless. She will now go up to other kids

> and play where before she never did. She still shows some

cognitive

> language delays but it is getting better every day. She does show

> some similarities to my son and we are keeping an eye on it. She

> seems to have some trouble transitioning. Like if she is playing or

> watching tv she won't answer unless we really yell or get right

into

> her face.

>

> Long story but my point is that presumably the day care people are

> seeing something and I would not hesitate to proceed with an

> evaluation because if there is some sort of delay now is the time

to

> address it.

>

> Maya is doing fabulously well and has made so much progress. And

> while she and s (my son) were very diffent children it is

hard

> not to ask ourselves if we had known about some of his problems

when

> he was two would early intervention minimized his symptoms? We

will

> never know and had no way of knowing then.

>

> Good Luck,

> Vickie

>

[Guest guest]

>

>Hello Lori:

You asked: > I'm just curious-with Miki.what symptoms do YOU see

and are you concerned

> about? In reading your response to Ruth, I'm thinking other

possibilities,

> but really want to read about the specific concerns you DO have.

>

>

> That's a very good question and I'm so happy you asked it.

Briefly, as I think back - my wife and I noticed how she was such an

extremely amiable baby, only fussed when she was hungry and never

missed a meal. Then we noticed her advanced ability to stand and

walk and never crawled. My wife works in day care, and would come

home and work with Miki, so very soon at an early age she could name

and identify many many things. And as I said, she climbs like a

monkey and is much more physically able than children her age.

What began to give us concerns or caused us to wonder to ourselves -

without even the faintest idea that there could be something wrong

with our child other than just being different was:

She could watch TV for long periods of time, and would be like deaf

to us and to the world when she was doing it. Way too focused I

thought. She didn't say daddy or mommy. She repeated what we said,

or the last part, and still probably does that too much.

I expected her to be somewhat aloof or independent after she started

walking but it seemed to me that she was too much so. I began to

miss the times she seemed to like to be held. (As I said, now at 28

months she seems to be coming back around wanting to be held or sit

in my lap for long periods of time, but just when she wants.)

We live in Japan, we are not Japanese. But we are always taking Miki

to Japanese playgrounds with a lot of children, since she is an only

child. I noticed from the beginning how excited she gets when there

are a lot of children on the playground as opposed to playing alone,

but it is like she comes up to them, and then just stands there.

I've watched other children (usually older) fasicinated I supposed

that she looks different try to engage her to run or follow them and

it looks like she's just 'out of sync' like she don't realize or

recognize the non-verbal cues the other children are giving. They

seem to look at her puzzled when they don't get a reaction out of

her. I used to think that it was because they spoke Japanese but now

I see that she is that way with the other children in the daycare who

are mostly Americans. On the other hand it didn't seem like she

acted that much different from those children who were her exact age.

Also, we've noticed if a child takes a toy away from her or bumps

her - she's like 'whatever' barely reacts and only recently will

clutch her toy and say 'mine.' She has always struck me as the

saying goes, very smart, self-sufficient, strong willed in what she

likes and doesn't like, but also very compliant, easily entertained

and very flexible in schedules and activities and sort of just dances

to the beat of her own drum.

The last thing though since all of this stuff started with the

specialists about six weeks ago, it seems like every time we target

some " problem' behavior, with the books and stuff they are giving us

for intervention, Miki seems to immediately respond and improve. The

day care has said there is a dramatic change in her joining the group

and staying with the class. The teacher also was told to start

getting her to do that where before Miki was 'allowed' to do whatever

she wanted.

At the same time as I learn more and more, I do believe there is some

reason for concern, and the comments about the type of conversation

Miki is now having where she doesn't answer questions, or had

developed I statements, makes me wonder. Since she is not 2 1/2 yet

I'm thinking as long as she keeps making daily progress maybe we'll

know a lot more by the time she is three.

Mark

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of marklutz32210

> Sent: Tuesday, February 24, 2009 6:28 PM

>

> Subject: ( ) Re: Introduction to the group

>

>

>

> To Ruth: I want to thank you for giving me some specifics and of

> course thanks to everyone who has responded which has been so

> helpful:

>

> In response to the specifics: You said, . . . > Some things my

> aspie did or didn't do at your daughter's age that were

> > atypical.

> >

> > - Had a much smaller vocabulary and talked much less than normal.

>

> We didn't worry about it because his receptive language was

excellent

> and we had no problems communicating with him. Didn't " babble " much

> as a baby.

>

> Miki's vocabulary has been huge and way before two could say

> individually the alphabet, counts to twenty in three languages, at

20

> months went to the zoo and on a bus tour shouted out all the names

of

> the animals correctly. Mostly used one word to get what she wanted

> but ever since a teacher at around 20 mos suggested a language

deplay

> we started insisting she use two to three word sentences which she

> has begun doing and reduced her tv time and interacted with her

> more.

> >

> > - Reacted to social interactions reasonably appropriately, but

> rarely initiated them.

>

> Maybe before but now Miki seems to be initiating things constantly -

> now demanding our attention when before she was very aloof and

almost

> seemed distant.

> >

> > - Never pointed at things to " show " us.

>

> Now just within the last several weeks Miki is bring us toys and

> things to look at and especially now she is picking out dvds she

> wants to watch and bringing them to me.

> >

> > - Had a hard time " labeling " things. Referred to my husband and

> > myself both as " mommy daddy " and called both his twin brother and

> > himself " ga-ga " .

>

> Yes, this was a bit of concern for me in that she would say Momma

or

> DaDa if we said it first, but JUST LAST NIGHT, when I came home she

> came running to the door with her arms outstretched yelling

> excitedly, Daddy!

>

> You can imagine how much I have been looking forward to that -

> wondering if that was ever going to happen.

>

> >

> > - Had poor emotional control and appeared " stubborn " .

>

> Miki since birth has always been 'atypical' in that she is so easy

> going, so flexible, so calm, and typically never fussed unless she

> was hungry. Of course now that we're in the two's we see more flare

> ups when things don't go her way but she also get's over it almost

> instantly and very easily can be distrated with another thing or

> activity.

> >

> > - Didn't adapt to new situations very well. Enough so that we

> didn't

> > visit people or go places as much as we would have. Beyond what is

> > typical for a 2yo. I gave up on going to church. He would cry and

> > cry and the nursery people would come get me, and in the

sanctuary,

> he

> > would spend the whole time trying to get away from me and bolt to

> the

> > door. I never heard a word of the sermon and it was pointless.

> When

> > we did go somewhere, it had to be carefully planned to avoid

> meltdowns

> > (bring plenty of drinks and snacks and time the car ride with

> naptime,

> > etc.).

>

> Again, Miki has not been like this. She has always gone everywhere

> with us, spending 8 10 12 hours out and about. Her behavior and

> manners at a resturant have caused people to come up and compliment

> us. At the store she gets wound up but after scolding her or on a

> rare occassion a 'swat on the butt' she is very well behaved in the

> store. Now she can pick out her cookies etc, and I give her money

> and she, all by herself, finds her way to the check out and

presents

> the cookies and money to the cashier.

>

> This included everyday things like shopping. Again, beyond

> > typical 2yo. I didn't even think about daycare or preschool until

> he

> > was 4--luckily my husband could be home during the day.

>

> Miki has always been in day care, so it is natural for her. She

does

> tend to like to play on her own but now that the teacher (after I

met

> and told her to be firmer with her) is now doing more of what the

> other kids are doing.

>

> >

> > - Saying he was a picky eater is a gross understatement. He was

way

> > beyond being a picky eater. He had a handful of things that he

> would eat.

>

> Miki since birth has been very easy to get to eat, so much so, we

are

> now watching to make sure she isn't gaining extra weight. She of

> course has her favorite things but she'll try just about anything,

at

> least once.

>

> >

> > - Didn't read our emotions unless they were extreme. He couldn't

> tell

> > when we were angry until we got to the point where we " lost it " .

It

> > was hard to get him to " follow the flow " . I used to have to give

> him

> > a sharp spank on the bottom just to get him to pay attention to

me

> and

> > switch gears rather than as punishment.

>

> Again I would agree with everything you just said, except that now

> she seems to becoming more and more responsive. Before it seemed

> like she was deaf the way she ignored us. Now, we see that if she

is

> watching TV, we do have to shout to make sure we're heard over the

TV

> and then she responds. But when the TV is off, now, we can just say

> her name or give her a command and she responds right away. The

swat

> has come when she is refusing to obey and acting up. And it's never

> hard but becasue it is so rare I think that is what upsets her

more.

> but it gets her attention and modifies her behavior. but I also

> notice my wife speaks to her over and over to get her to comply and

I

> speak once or twice before I discipline and now, clearly in the

store

> or where ever, our daughter behaves better for me.

>

> >

> > - Hated swinging very high; it scared him to death. It also took

him

> > much longer than typical to start climbing playground equipment.

>

> (please don't take any comments of mine as bragging, I wouldn't

even

> talk about this stuff if it wasn't for the sake of figuring out

> what's best for my daughter)

>

> This is the area that Miki has been the MOST unsual. She never

> crawled, never wanted help learning to walk, walked early. Then

> turned into a little monkey, even to the point we took her out of a

> crib and put into a toddler bed and then put her in a bunk bed

where

> she climbs a ladder to her bed. We've never encouraged or showed

her

> anything on the playground equipment and she keeps up with kids

twice

> her size and isn't intimitated in the least. I can't swing or throw

> her high enough for her taste and the favorite thing in the store

for

> her is riding the escaluator. She's always been fearless when it

> comes to things like that.

>

> As you can see it seems like my daughter has some 'mild' symptoms

of

> either HFA or ASD, but then it's like she is also like the Enstein

> Syndrome, or who knows something else, but so far it doesn't seem

to

> fit neatly into a box.

>

> What I'm wondering is if there is 'something' to all this, should I

> expect 'with intervention' worse problems ahead, the same, or less?

>

> Thanks

>

> Mark

>

> >

>

[Guest guest]

When my son was 2, we moved him from an in-home daycare to a pre-

school type daycare. Right around 3 years old, we were told that

they thought he might have autism. We had him evaluated by the

school system. They said he had the vocabulary of a 4 year old but

the sentence structure of a 2 year old. We enrolled him in a

special program with speech emphasis.

We were in complete denial. We didn't want to even entertain the

idea that our son had autism.

When he was 4, we moved. At first we didn't say anything to the

preschool. I think we were hoping it would all go away. It

didn't. We had to start up the whole preschool thing again.

At one point, the person in charge of the daycare in the new city

said that she thought he had Asperger's. This was an easier word

for me to hear. So, I started doing some research. I was still in

denial - especially when I started to see the word Autism in my

research.

When he began kindergarten, we started having even MORE issues. It

was awful. I asked our family doctor about Asperger's and Autism and

he said he didn't think that was the case and sent me to a special

hospital for a developmental evaluation. I got the answer I wanted,

that nothing was wrong, and there was no diagnosis of autism.

Looking back, it was a complete waste of my time.

Our son had speech therapy through his IEP, but it wasn't anywhere

near enough support. He was having a lot of behavioral issues as

well as communication issues. It also didn't help that the teacher

was complety frustrated.

At one point, I told the special ed teacher who was in charge of his

IEP that I suspected Asperger's and she told me that she was also

wondering about it. I told her I had no idea how to get him

diagnosed and she suggested a pediatric neurologist.

Taking our son to the pediatric neurologist was really, really

difficult as we were still hoping not to get the diagnosis we were

having such a hard time even thinking it might be a possibility.

However, after seeing our son, talking with him, and getting a

history, there was no question in the doctor's mind. Our son was

officially diagnosed with High Functioning Autism. He has a lot

more of the characteristics of Asperger's for the most part, but

with his language delay, he was given the HFA diagnosis.

It was a very, very tough time in my life. It was very difficult to

accept. I did a lot of research and reading. I wish we could have

had him diagnosed sooner. Early intervention is VERY important. If

I only knew then what I know now...

Our son is now 10. He has an IEP and the staff in place to help. I

have become the advocate for our son. I am very in very close

contact with the school staff. He is doing well this year (knock on

wood). I think part of it has to do with maturing. I have read

that the onset of puberty things change -- many times for the better.

My advice to you, in a nutshell, is to find the best pediatric

neurologist you can and get a diagnosis. Once you have a diagnosis,

do all the research you can. Don't immediately medicate your

child. Find out what ALL your options are. Diet changes have

helped my son tremendously. Be open minded to what some might

consider alternative options.

I wish you all the best. My thoughts are with you through this

difficult time. If you have questions, you can email me if you like.

Jill

>

> Hello,

>

> My name is Mark and my wife is Joanne, and our daughter is Miki,

who recently was evaluated in the daycare as having the symptoms of

either Aspergers or High Functioning Autism.  This has suddenly

immersed my wife and I in a sea of more questions than answers and

reading the writings of the 'professionals' seems to make it worse,

so I thought, better to listen and learn from parents, who are able

to observe their children better than anyone else. 

>

> I'd liked to think I'm neither accepting or rejecting, but only

want the best for my child.  

>

>     Thanks

>

> Mark

>

[Guest guest]

>

> Hello everyone,

>

> My name is Noelle Katai, and I am the host of the national aromatherapy TV

show, " Everybody Nose " on Veria TV. It currently airs on DISH Satellite and

Verizon FiOS.

 Nice to see you here my friend, I know you will enjoy this lively, creative,

passionate group!

Be well,

Markel

Managing Partner

www.eoilco.com

www.eoilcolab.com

www.GreenTerpene.com

[Guest guest]

>

> Hello everyone,

>

> My name is Noelle Katai, and I am the host of the national aromatherapy TV

show, " Everybody Nose " on Veria TV. It currently airs on DISH Satellite and

Verizon FiOS.

I'd like to see this on Comcast cable, do you have any expectations of this??

Carol