Re: My daughters first diagnosis

[Guest guest]

>> My daughter has been with an OT for over a year...has IEP and is an

>> all out exceptional child...so much so that my early diagnosis of AS may

>> have and probably will go unseen unless she is " Officially " diagnosed or

>> given a label, which I hate to do as a father... " labels are so unfair " ,

>> but will do what it takes to get her needed help! <<

Don't think of it as a label, think of it as a signpost, a way to explain

her way of thinking, which just happens to be different to the majority.

Different isn't wrong! But it is likely that she will need those around her

(eg school teachers etc) to take account of her difference and make the

appropriate accomodations, and for that she will need the bit of paper with

the word written on it, otherwise she will suffer.

in England

[Guest guest]

Thank you for that...sometimes I need to hear from people like yourself who know what I may be in for. I love my daughter and know you love your child as well!!! Keep in touch with me and let me know how you are. Rowell <nancy@...> wrote: >> My daughter has been with an OT for over a year...has IEP and is an >> all out exceptional child...so much so that my early diagnosis of AS may >> have and probably will go unseen unless she is "Officially" diagnosed or >> given a label, which I hate to do as a father..."labels are so unfair", >> but will do what it takes to get her needed help! <<Don't think of it as a label, think of it as a signpost, a way to explain her way of thinking, which just happens to be different to the majority.

Different isn't wrong! But it is likely that she will need those around her (eg school teachers etc) to take account of her difference and make the appropriate accomodations, and for that she will need the bit of paper with the word written on it, otherwise she will suffer. in England

[Guest guest]

Hi Dad,

Dad here. I was relieved when my son was diagnosed. Now that we know what its called we can look it up and get the information we need on how to deal with it and how to help him learn to deal with it.

Lots of information out there. Making the time to find it, sort through it, digest it, learn how to implement it, implement it, while doing all the other responsabilites of a father, has been very challenging, quite emotionaly and physically draining. But as you said, "what ever it takes...", that IS what we Dads do!

The first several years I relied on my wife to do all the research and implement a plan of action. This wasn't enough for me and it wasn't fair to both my wife and son. The more I go to seminars, workshops, etc. the more I learn about my son's special abilities and the way he precieves and functions in the world. This has been an eye opening experience for me. Has helped me grow as a father and as a human being. I can enjoy my son more, now that I know more. He can enjoy me more. My wife and I have a better understanding with each other as well, not so many disagreements. When we aren't on the same track, we are at least on paralel tracks going in the same direction.

Have not yet had a problem with any labels. In fact, it has helped to identify his needs and get him the sopports he needs.

Thians Dad

>just want to hear some experienced feedback on your first "diagnosis"Thank you soooo much...a concerned dad

[Guest guest]

I have a unique perspective in that I have a child like yours and was

one myself. I figured out my son is aspergers only last year (age

13) and myself shortly after. I am no stranger to autism though

because my 6 year old was diagnosed 4 years ago but he is low-

functioning so for him it is obvious to anyone immediately.

There are pluses and minuses to getting a label so I'll lay out the

issues to help you make a decision. The benefits to getting your

child labeled are: 1) you may be able to get services paid for

through the school district to help her (yet there is no guaruntee),

2) the school would be more willing to make accomodations for her to

succeed and 3) things that she may do wrong in school would be

better understood. On the downside, her getting an official label

could be bad for the following reasons, 1) the school would have

lower expectations and excuse away her not learning as her fault, not

theirs, 2) if the classmates know, they might treat her different,

3) your you are self-insured you will most likely be dropped or if

you have insurance through your work and it is a small company, they

may be dropped (this happened to me) and 4) when she gets older and

has learned to adapt, it may be difficult for her to shake the label

thus causing difficult getting into college or a job. In my opinion,

getting an official diagnosis is good for a child that is low-

functioning but possibly not for a high-functioning. This is an

individual decision though.

Do I mean that one should remain in the dark? No. I believe that if

a parent educates themself enough and are honest enough with

themself, they are more than capable of determining what the child's

label should be themself. All a doctor sees is a moment in time with

a child but a parent knows them through and through. I also believe

it is very important that the child knows. I did not know as a child

and always thought of myself as stupid. My son did not really

improve with his social skills until he knew because he felt so

defeated he didn't try.

I would encourage you to keep doing what you are doing. Have her

tell you about her day and instruct her on how to handle situations.

AS kids do not understand how to act socially intuitively and

therefore must be taught. Read her social stories that will tell her

what to do in certain situations before they arise. Point out

regularly what her strengths are. To get a better understanding of

her world, read Freaks, Geeks and Aspergers Syndrome by Luke

. He is a 13 year old boy with aspergers that talks about

what it is like and what he has learned in order to cope.

>

> My beautifull daughter Jayda is 6 yrs. old now and is the most

important little thing in this dads life. I had discovered at the

age of around 2 that she had something going on that I really had no

knowledge about, however a twist of my childhood would come into play.

> I reallized my daughter saw and did certain things that a

childhood friend had done when I was young that brought me to

absolute conclusions that my daughter had this previously unknown or

rather....no one knew what was called AS.

> My daughter has been with an OT for over a year...has IEP

and is an all out exceptional child...so much so that my early

diagnosis of AS may have and probably will go unseen unless she

is " Officially " diagnosed or given a label, which I hate to do as a

father... " labels are so unfair " , but will do what it takes to get her

needed help!

> As a father, it seems only I can see the problem, even after

her OT had seen it and had written his thoughts on the matter to both

her school and neurologist.

> I guess my greatest concern is the outcome of what the

neurologist says and if this is a good idea...as far as just giving

her a label. Or should I keep giving her my undevided attention and

continue with OT and see how she adjusts socially with her peers?

Keep in mind that sociall concerns are at the TOP of my list being

that she is a single child and can instantly turn a child away by

offering said child a strange gift such a a piece of paper with their

name on it. She gives it with her heart and some children see it as

just a piece of paper and toss it. I see how much time she spends on

such things and how very important these things are and get

heartbroken because other children do not understand it.

> Every morning is a very delicate and constructed

event...and I'm sure most of you reading this can relate.

> I have so much to say about the subject, however not enough

room in this e-mail...just want to hear some experienced feedback on

your first " diagnosis "

> Thank you soooo much...a concerned dad

>

[Guest guest]

Concerened dad, I can relate....Big time... My son is now 10 years old and to this day struggles with social issues. It is especially hard because he is now showing an interest in girls. He drew a picture and gave it to a girl at school only to have her turn it down. He came home and told me about it. I was heartbroken for him and said "Well that wasnt very nice of her, you never refuse a gift."And he said "Mom it's ok, girls are just that way." Such insight from my baby...... His reaction gave me some consolation. My son also attaneds a social skills group withother boys his age with AS which gives them a chance to practice appropriate social skills and learn what is NOT appropriate. It definately helps. He is also provided daily social skills lessons at school which you may want to consider asking for from your school. They may try to refuse but fight them on that one. Get it into her IEP.... Iknow how sad you can feel for your child. I know

how painful it is to see them struggle socially. And that is really the issue.... social skills. Most of these kids do great in other areas. My son made honor roll but cant make a friend to save his life. Other than his group of course which has been a lifesaver as far as making friends goes. Good luck to you! in Lancaster, CaLISA FORBIS <lisadanjayda@...> wrote: My beautifull daughter Jayda is 6 yrs. old now and is the most important little thing in this dads life. I had discovered at the age of around 2 that she had something going on that I really had no knowledge about, however a twist of my childhood would come into play. I reallized my daughter saw and did certain things that a childhood friend had done when I was young that

brought me to absolute conclusions that my daughter had this previously unknown or rather....no one knew what was called AS. My daughter has been with an OT for over a year...has IEP and is an all out exceptional child...so much so that my early diagnosis of AS may have and probably will go unseen unless she is "Officially" diagnosed or given a label, which I hate to do as a father..."labels are so unfair", but will do what it takes to get her needed help! As a father, it seems only I can see the problem, even after her OT had seen it and had written his thoughts on the matter to both her school and neurologist. I guess my greatest concern is the outcome of what the neurologist says and if this is a good idea...as far as just giving her a label. Or should I keep giving her my undevided attention and continue with OT and see how she adjusts

socially with her peers? Keep in mind that sociall concerns are at the TOP of my list being that she is a single child and can instantly turn a child away by offering said child a strange gift such a a piece of paper with their name on it. She gives it with her heart and some children see it as just a piece of paper and toss it. I see how much time she spends on such things and how very important these things are and get heartbroken because other children do not understand it. Every morning is a very delicate and constructed event...and I'm sure most of you reading this can relate. I have so much to say about the subject, however not enough room in this e-mail...just want to hear some experienced feedback on your first "diagnosis" Thank you soooo much...a concerned dad

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[Guest guest]

my son, who is 7, just got diagnosed with as. which i

thought was a good thing. right? we have it in black

and white. a diagnosis. finally. now with a

dianosis we can get help. services. wrong!! i have

passed the letter onto our school and i was actually

told that he might be diagnosed AS but that is outside

of the school. What? sorry if i offend any teachers

out there but a teacher can diagnose my child but a

neruologist can't? i don't think so. boy was i hot.

nobody wants to " label " a child. i had the same

problem. they told me that it would be terrible to

put a " label " on them. they don't think about how

they are hurting the children by not receiving

services.. i asked once, who would know? if he had a

" label " who would know about it? its not like we are

going to wear i have AS shirts everyday. very

frustrating.

good luck. i feel like i am still stuck in the same

spot with a diagnosis. a " label " hasn't changed

anything for us. there is always tomorrow. i try to

stay positive.

carrie

--- LISA FORBIS <lisadanjayda@...> wrote:

> My beautifull daughter Jayda is 6 yrs. old now and

> is the most important little thing in this dads

> life. I had discovered at the age of around 2 that

> she had something going on that I really had no

> knowledge about, however a twist of my childhood

> would come into play.

> I reallized my daughter saw and did certain

> things that a childhood friend had done when I was

> young that brought me to absolute conclusions that

> my daughter had this previously unknown or

> rather....no one knew what was called AS.

> My daughter has been with an OT for over a

> year...has IEP and is an all out exceptional

> child...so much so that my early diagnosis of AS may

> have and probably will go unseen unless she is

> " Officially " diagnosed or given a label, which I

> hate to do as a father... " labels are so unfair " , but

> will do what it takes to get her needed help!

> As a father, it seems only I can see the

> problem, even after her OT had seen it and had

> written his thoughts on the matter to both her

> school and neurologist.

> I guess my greatest concern is the outcome of

> what the neurologist says and if this is a good

> idea...as far as just giving her a label. Or should

> I keep giving her my undevided attention and

> continue with OT and see how she adjusts socially

> with her peers? Keep in mind that sociall concerns

> are at the TOP of my list being that she is a single

> child and can instantly turn a child away by

> offering said child a strange gift such a a piece of

> paper with their name on it. She gives it with her

> heart and some children see it as just a piece of

> paper and toss it. I see how much time she spends

> on such things and how very important these things

> are and get heartbroken because other children do

> not understand it.

> Every morning is a very delicate and

> constructed event...and I'm sure most of you reading

> this can relate.

> I have so much to say about the subject,

> however not enough room in this e-mail...just want

> to hear some experienced feedback on your first

> " diagnosis "

> Thank you soooo much...a concerned dad

>

__________________________________________________

[Guest guest]

I think it depends on the school. My son's AS diagnosis was medical (by MD

not psychologist) so I absolutely would not let them ignore it or it would

be against the law. NCLB. He had a full IEP within weeks, an aid,

services, you name it. They spend 4 years telling me there was NO problem

because he got A's but the minute I had " proof " they knew they could not

deny the other problems existed any more.

I was lucky and also has a great teacher stand up in the meeting and list

all the issues he saw in my son that could be addressed with school

interventions and services!

Re: My daughters first " diagnosis "

my son, who is 7, just got diagnosed with as. which i

thought was a good thing. right? we have it in black

and white. a diagnosis. finally. now with a

dianosis we can get help. services. wrong!! i have

passed the letter onto our school and i was actually

told that he might be diagnosed AS but that is outside

of the school. What? sorry if i offend any teachers

out there but a teacher can diagnose my child but a

neruologist can't? i don't think so. boy was i hot.

nobody wants to " label " a child. i had the same

problem. they told me that it would be terrible to

put a " label " on them. they don't think about how

they are hurting the children by not receiving

services.. i asked once, who would know? if he had a

" label " who would know about it? its not like we are

going to wear i have AS shirts everyday. very

frustrating.

good luck. i feel like i am still stuck in the same

spot with a diagnosis. a " label " hasn't changed

anything for us. there is always tomorrow. i try to

stay positive.

carrie

--- LISA FORBIS <lisadanjayda@...> wrote:

> My beautifull daughter Jayda is 6 yrs. old now and

> is the most important little thing in this dads

> life. I had discovered at the age of around 2 that

> she had something going on that I really had no

> knowledge about, however a twist of my childhood

> would come into play.

> I reallized my daughter saw and did certain

> things that a childhood friend had done when I was

> young that brought me to absolute conclusions that

> my daughter had this previously unknown or

> rather....no one knew what was called AS.

> My daughter has been with an OT for over a

> year...has IEP and is an all out exceptional

> child...so much so that my early diagnosis of AS may

> have and probably will go unseen unless she is

> " Officially " diagnosed or given a label, which I

> hate to do as a father... " labels are so unfair " , but

> will do what it takes to get her needed help!

> As a father, it seems only I can see the

> problem, even after her OT had seen it and had

> written his thoughts on the matter to both her

> school and neurologist.

> I guess my greatest concern is the outcome of

> what the neurologist says and if this is a good

> idea...as far as just giving her a label. Or should

> I keep giving her my undevided attention and

> continue with OT and see how she adjusts socially

> with her peers? Keep in mind that sociall concerns

> are at the TOP of my list being that she is a single

> child and can instantly turn a child away by

> offering said child a strange gift such a a piece of

> paper with their name on it. She gives it with her

> heart and some children see it as just a piece of

> paper and toss it. I see how much time she spends

> on such things and how very important these things

> are and get heartbroken because other children do

> not understand it.

> Every morning is a very delicate and

> constructed event...and I'm sure most of you reading

> this can relate.

> I have so much to say about the subject,

> however not enough room in this e-mail...just want

> to hear some experienced feedback on your first

> " diagnosis "

> Thank you soooo much...a concerned dad

>

__________________________________________________

[Guest guest]

, excellent explanation! You put my thinking into words I could

not have come up with myself.

>

>

> >> My daughter has been with an OT for over a year...has IEP

and is an

> >> all out exceptional child...so much so that my early diagnosis

of AS may

> >> have and probably will go unseen unless she is " Officially "

diagnosed or

> >> given a label, which I hate to do as a father... " labels are so

unfair " ,

> >> but will do what it takes to get her needed help! <<

>

> Don't think of it as a label, think of it as a signpost, a way to

explain

> her way of thinking, which just happens to be different to the

majority.

> Different isn't wrong! But it is likely that she will need those

around her

> (eg school teachers etc) to take account of her difference and

make the

> appropriate accomodations, and for that she will need the bit of

paper with

> the word written on it, otherwise she will suffer.

>

> in England

>

[Guest guest]

Concerned Dad,

I will never forget the day I got my son's first official diagnosis.

He was 6.5 years old and the school district had sent us for gifted

testing because their psych. couldn't get him to focus with her.

Though I knew something wasn't right I felt like I was sucker punched

so to say. It's one thing to find out your child doesn't meet the

criteria for the gifted program, it's another thing to come home with a

ASD diagnosis. I cried for 2 weeks straight and continue to do so at

times.

But it has helped us understand his odd behaviors and his difficulty in

making friends. It took the diagnosis to wake us up and make related

services available for him.

Good luck to you, I know you feel like the wind has been knocked out of

you. I did too

Cass

[Guest guest]

My experience has been the opposite. I realize from being part of this group that my school may be unusual. But they have worked with me as part of his educational team to create the best plan to help my son achieve at his highest level. The autism teacher, the 3rd grade teacher, the para and the OT team has worked to create a plan that has helped my 8 year old son blossom in the last year. His classmates understand that sometimes responds differently or may get over excited and "get in their space" and have been helped to respond positively to him. He has friends and is never teased or left out due to the label.

I think you need to really look at the system you are working in to see how responsive the teams are! Our kids are amazing and the thing I have learned over the last 5 year is that we make the biggest difference. It may be hard some days or years but as the kids develope their special talents - they also help us develop ours! I agree with the other parents who say that they have grown and become better people! I know it is definately true for my husband and I.

Best wishes on finding the best path for your family!

LJ