Re: Telling your child his diagnosis

[Guest guest]

Hi ,

My son is only 6, but we've already started explaining his illness to him.

He realizes that the other kids don't go to speech appointments or take meds

three times a day and he suffers from a poor self esteem. For these

reasons, we have found it helpful to explain that he was sick alot as a baby

and while other babies were learning things and getting strong, he was too

sick to do those things. We explain that the illness was nobody's fault and

that he's a great kid, but he's got a lot of work to do to catch up. When

he's discouraged or frustrated, I remind him of how many people are helping

him like his family, Dr. Goldberg, his teachers and therapists and that we

all are proud of him.

Being 11, your son is well aware that he's different and he's probably eager

to know why. Knowing that part of his trouble relating to peers is the

result of an illness may help him not feel as defective. Out of curiosity

what are you doing with him now to help him with his remaining gap in

development? It sounds like the school stopped helping. Are you still

working with Dr. Goldberg? (You've probably explained this in a previous

post, but I have such a poor memory sometimes)

April

Telling your child his diagnosis

> Okay, for those who don't remember me :-), my child

> was diagnosed at 4.5 (could have been diagnosed sooner),

> we started aba at 5, " finished " formalized programming by

> 2nd grade. He isn't " recovered " but some would argue he

> isn't autistic (I have long ago given up on the label game).

>

> He has some " residual " issues (more emotional.. more adhd like..)

>

> When and how have some told their children about their diagnosis?

> I read the sumlin notes (from the Me-list).. and well. the sumlins

> are in another world. :-) Their child seems to have been completely

> normal and recovered and not of the same issues as my child.

>

> My child is 11 now... and it may be time to address what in the

> heck all those funky 3 inch binders in our laundry room are

> about (from our ABA program). He knows about the tutors and has even

> asked me about them but we never brought up the " A " word. He somehow

> has decided that Dr. Goldberg was a psychologist. He was remembering

> a flight out to California when he was around 7.

>

> Any advice? Insight? It is so hard to believe that not that long

> ago, I was a new parent of a relatively young child....

>

>

> hargadine@...

>

>

>

>

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent Coalition.

>

>

[Guest guest]

April, this is a great reply.

Not only explanatory but true to the T.

Thanks for this.

>

> Hi ,

>

> My son is only 6, but we've already started explaining his illness

to him.

> He realizes that the other kids don't go to speech appointments or

take meds

> three times a day and he suffers from a poor self esteem. For

these

> reasons, we have found it helpful to explain that he was sick alot

as a baby

> and while other babies were learning things and getting strong, he

was too

> sick to do those things. We explain that the illness was nobody's

fault and

> that he's a great kid, but he's got a lot of work to do to catch

up. When

> he's discouraged or frustrated, I remind him of how many people

are helping

> him like his family, Dr. Goldberg, his teachers and therapists and

that we

> all are proud of him.

>

> Being 11, your son is well aware that he's different and he's

probably eager

> to know why. Knowing that part of his trouble relating to peers

is the

> result of an illness may help him not feel as defective. Out of

curiosity

> what are you doing with him now to help him with his remaining gap

in

> development? It sounds like the school stopped helping. Are you

still

> working with Dr. Goldberg? (You've probably explained this in a

previous

> post, but I have such a poor memory sometimes)

>

> April

>

> Telling your child his diagnosis

>

>

> > Okay, for those who don't remember me :-), my child

> > was diagnosed at 4.5 (could have been diagnosed sooner),

> > we started aba at 5, " finished " formalized programming by

> > 2nd grade. He isn't " recovered " but some would argue he

> > isn't autistic (I have long ago given up on the label game).

> >

> > He has some " residual " issues (more emotional.. more adhd like..)

> >

> > When and how have some told their children about their diagnosis?

> > I read the sumlin notes (from the Me-list).. and well. the

sumlins

> > are in another world. :-) Their child seems to have been

completely

> > normal and recovered and not of the same issues as my child.

> >

> > My child is 11 now... and it may be time to address what in the

> > heck all those funky 3 inch binders in our laundry room are

> > about (from our ABA program). He knows about the tutors and has

even

> > asked me about them but we never brought up the " A " word. He

somehow

> > has decided that Dr. Goldberg was a psychologist. He was

remembering

> > a flight out to California when he was around 7.

> >

> > Any advice? Insight? It is so hard to believe that not that long

> > ago, I was a new parent of a relatively young child....

> >

> >

> > hargadine@...

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

Coalition.

> >

> >

[Guest guest]

Hi -

I haven't faced this yet with my son, but I work hard

to teach him the foundations that his body being

healthy and the food he eats is important to how his

brain works. He's seven, and he has witnessed

(retroactively) for himself plenty of times how a

certain food can make the rest of the day go downhill

for him (get very stressed and tempermental, etc), or

how other really bad days resulted in the discovery of

him having a fever, etc.

Socially, I have started recently pointing out

(kindly) how he was responsible for an interaction

w/another kid going bad, how he mis-interpreted an

intention or something (in addition to what he could

do different next time), etc. I do this in a way that

suggests that these things are learned, lots of people

have to learn it, you have to work at it, etc etc, and

I present this in a matter-of-fact way that suggests

that it is normal. He's not at the stage yet where he

is aware of differences, but functioning-wise, seems

similar to your son.

I feel this the recommendations of teaching a child

about sexuality applies to teaching children about

their personal struggles: you answer the question that

they actually ask, ie re: ABA- we used to do these

things to teach your brain how to do this..., or Dr G

is your doctor, he gave you medicines to help your

body get healthy and establishing the understanding

that healthy body is critical to properly functioning

brain. You teach them that when their body/brain

isn't healthy (or more importantly in our kids'

perceptions " while it's getting healthier " ) that there

are exercises we can do to teach them what they need

to learn.

I think that is so important to teach our kids - but

somehow balancing it so they won't blame everything on

being sick so they don't learn to work hard at

learning to do better - that their diet and health is

critical to their ability to do things and be

'mentally healthy', 'cause these kids are going to

grow up, hopefully leave the home and be functioning

adults responsible for their own healthcare someday,

and we want them to learn that working to overcome

various struggles is a positive goal and that the

answers to accomplishing it are out there.

I struggled w/so many things similar to my son growing

up... the social problems, the sensory problems,

strange habits and focuses, had PANDAS then Tourette's

without knowing it - which was quite isolating and

confusing when I realized other kids did not do many

of the things I did (toe-walking, spinning, OCD-type

things, had quite a few years with some strong

similarities to Asperger, but always had the optimism

that there was a key to learning how to structure life

and learn habits to be a " normal person " , learn to

make friends, etc. Why I inherently knew this, I

don't know... other than calculated observation of

people and what they do, how they do it, etc. (My mom

didn't understand, so she couldn't teach me.) I'm

glad I have the inborn optimisim I did - it's the only

thing that kept me from being suicidal in my teens

when you want so badly to connect with people and are

utterly incapable of it... that, and having lots of

interest in things I could enjoy and appreciate as a

solitary child, like the outdoors w/woods and creeks

and canoes, pets/hobbies like fish and reptiles, dirt

bikes, books, etc.

I can only speculate that it could have possibly

helped my very poor self-esteem and severe anxiety to

at least have a partial understanding of why I was so

different and why it was so hard for me to be like

anyone else. Too much understanding may have been too

emotionally isolating, but maybe not, since I never

stopped believing that it was possible to learn to

change myself. I certainly knew I was unique, and I

knew I was very intelligent acedemically, and I knew I

had a few gifts that someone would appreciate in me

one day, and I had every hope in the world that I

would not be lonely forever. It would have helped if

I had felt like someone else had the ability to help

teach me. It would have been far less terrifying than

it was if I had known that there was support out there

to teach me.

Funny thing, though. I never once asked why I was

different, why this was so hard, why I didn't have

friends, anything. The only way my mom knew I was

aware was by my posture of insecurity, and she bounced

back and forth in assumptions that my lack of eye

contact was either extreme shyness, or intentional

rebellion to close people out, be aloof, ignore her,

or otherwise be emotionally cold and distant. You can

imagine how intense home life could be for someone

whose child is obviously not right but has no idea

why, and how the freudian assumptions can take over

and you start assuming your child was molested or

otherwise damaged by someone, or how the child is

doing it on purpose, etc, and the resulting chaos your

parenting would take on.

I think some people worry that telling a child will

isolate them and make them feel too different. I

spent my entire childhood learning coping mechanisms

anyway, so understanding what I was struggling against

would have given me more acceptance of my problems,

but I cannot see many ways it would have hurt me. I

was already neurotically too self-aware of my

dysfunction and too self-critical (and that hasn't

totally gone away) anyway, a certifiable hypochondriac

that in my early adulthood wanted to diagnose myself

w/half the mental disorders out there. I think it

would have been a relief to understand exactly which

ones I was actually facing! (lol).

I guess that's the long-way of saying, yeah, you might

as well tell him at least some, though not necessarily

full detail, as he asks, and just build on it as he

asks, point out problems and help him understand that

this is an area " needing work " , that he is " teaching

his brain " , and that whatever is hard has a teaching

method. They already know they're different anyway,

even if they don't seem to care, there's a lot more

emotional self-evaluation going on inside the brain

that it never occurs to them to voice.

It's not like when your child hits puberty and the

teens that he's not going to be supremely ticked off

that he's different, and very emotional about it, but

if you provide a strong foundation now that there is

knowledge to help teach what isn't coming easily, he

will maintain some optimism when the real emotional

pain kicks in. You can use the binders to refer to

things that " used to be hard for you to do, and now

look how good you are at that! " You celebrate with

him now over all these accomplishments, then you set

the stage for trust when he enters those devastating

teen years and he struggles to interact with peers

(and it's not easy even for your average 'NT') and is

suffering all the heartbreak of rejection - so that

when you say 'It will come', somewhere in the deep

dark recesses of his adolescent hormonally-screwed-up

brain, he'll hear it and believe it at least on a

subconcious level. Even test to see if he has the

emotional memory of how frustrated certain things that

he has now overcome would make him, and brightly point

out how great he has done, and celebrate it.

At this age, treat it like it has been on a journey,

and that he is the star of it with tons and tons of

success, and make him proud of what a wonderful little

boy he is, and how nice people (therapists) are so

good at helping teach. Reflect on games they used to

play with him, and casually mention what those games

teach kids to do. And celebrate interests that are

unique to him that typical kids don't do (like my

son's love of motors and electrical circuits -

something he knows is different about him and likes to

be different at).

Sorry this turned into a novel! lol.

--- eahcsca <hargadine@...> wrote:

> Okay, for those who don't remember me :-), my

> child

> was diagnosed at 4.5 (could have been diagnosed

> sooner),

> we started aba at 5, " finished " formalized

> programming by

> 2nd grade. He isn't " recovered " but some would

> argue he

> isn't autistic (I have long ago given up on the

> label game).

>

> He has some " residual " issues (more emotional.. more

> adhd like..)

>

> When and how have some told their children about

> their diagnosis?

> I read the sumlin notes (from the Me-list).. and

> well. the sumlins

> are in another world. :-) Their child seems to have

> been completely

> normal and recovered and not of the same issues as

> my child.

>

> My child is 11 now... and it may be time to address

> what in the

> heck all those funky 3 inch binders in our laundry

> room are

> about (from our ABA program). He knows about the

> tutors and has even

> asked me about them but we never brought up the " A "

> word. He somehow

> has decided that Dr. Goldberg was a psychologist. He

> was remembering

> a flight out to California when he was around 7.

>

> Any advice? Insight? It is so hard to believe that

> not that long

> ago, I was a new parent of a relatively young

> child....

>

>

> hargadine@...

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi April,

This is EXACTLY how we've handled it with our son. And how I deal

with occasional questions from peers at school.

Donna

>

> Hi ,

>

> My son is only 6, but we've already started explaining his illness

to him.

> He realizes that the other kids don't go to speech appointments or

take meds

> three times a day and he suffers from a poor self esteem. For these

> reasons, we have found it helpful to explain that he was sick alot

as a baby

> and while other babies were learning things and getting strong, he

was too

> sick to do those things. We explain that the illness was nobody's

fault and

> that he's a great kid, but he's got a lot of work to do to catch up.

When

> he's discouraged or frustrated, I remind him of how many people are

helping

> him like his family, Dr. Goldberg, his teachers and therapists and

that we

> all are proud of him.

>

> Being 11, your son is well aware that he's different and he's

probably eager

> to know why. Knowing that part of his trouble relating to peers is the

> result of an illness may help him not feel as defective. Out of

curiosity

> what are you doing with him now to help him with his remaining gap in

> development? It sounds like the school stopped helping. Are you still

> working with Dr. Goldberg? (You've probably explained this in a

previous

> post, but I have such a poor memory sometimes)

>

> April

>

> Telling your child his diagnosis

>

>

> > Okay, for those who don't remember me :-), my child

> > was diagnosed at 4.5 (could have been diagnosed sooner),

> > we started aba at 5, " finished " formalized programming by

> > 2nd grade. He isn't " recovered " but some would argue he

> > isn't autistic (I have long ago given up on the label game).

> >

> > He has some " residual " issues (more emotional.. more adhd like..)

> >

> > When and how have some told their children about their diagnosis?

> > I read the sumlin notes (from the Me-list).. and well. the sumlins

> > are in another world. :-) Their child seems to have been completely

> > normal and recovered and not of the same issues as my child.

> >

> > My child is 11 now... and it may be time to address what in the

> > heck all those funky 3 inch binders in our laundry room are

> > about (from our ABA program). He knows about the tutors and has even

> > asked me about them but we never brought up the " A " word. He somehow

> > has decided that Dr. Goldberg was a psychologist. He was remembering

> > a flight out to California when he was around 7.

> >

> > Any advice? Insight? It is so hard to believe that not that long

> > ago, I was a new parent of a relatively young child....

> >

> >

> > hargadine@...

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

Coalition.

> >

> >

[Guest guest]

, this is so intriguing. I have a question on something you

touched on. You said it didn't even occur to you to ask the

questions as to why you were different. Any idea why this is? I

always wonder if it is the feeling or the thought or the language

that is missing.

Thanks for all of your insight.

>

> > Okay, for those who don't remember me :-), my

> > child

> > was diagnosed at 4.5 (could have been diagnosed

> > sooner),

> > we started aba at 5, " finished " formalized

> > programming by

> > 2nd grade. He isn't " recovered " but some would

> > argue he

> > isn't autistic (I have long ago given up on the

> > label game).

> >

> > He has some " residual " issues (more emotional.. more

> > adhd like..)

> >

> > When and how have some told their children about

> > their diagnosis?

> > I read the sumlin notes (from the Me-list).. and

> > well. the sumlins

> > are in another world. :-) Their child seems to have

> > been completely

> > normal and recovered and not of the same issues as

> > my child.

> >

> > My child is 11 now... and it may be time to address

> > what in the

> > heck all those funky 3 inch binders in our laundry

> > room are

> > about (from our ABA program). He knows about the

> > tutors and has even

> > asked me about them but we never brought up the " A "

> > word. He somehow

> > has decided that Dr. Goldberg was a psychologist. He

> > was remembering

> > a flight out to California when he was around 7.

> >

> > Any advice? Insight? It is so hard to believe that

> > not that long

> > ago, I was a new parent of a relatively young

> > child....

> >

> >

> > hargadine@...

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Ah, yes...me, too, actually. I was VERY OCD and had some mild

Tourette's that would pop up occasionally. It drove my parents,

especially my mom, to distraction. My mother would yell at me,

" Donna, STOP SQUEAKING!! " As if...! And of course, I was the poster

child for " better living through chemistry " eating. We had all kinds

of sugary, red-dye-laden, milk-based junk around the house, all the

time.

>

> > , this is so intriguing. I have a question

> > on something you

> > touched on. You said it didn't even occur to you to

> > ask the

> > questions as to why you were different. Any idea

> > why this is? I

> > always wonder if it is the feeling or the thought or

> > the language

> > that is missing.

> > Thanks for all of your insight.

> >

>

>

> __________________________________________________

>

[Guest guest]

I will write more on this later (I need to clean my house!) but...

I thought everyone would find this... either sad, ironic, or kinda

funny.. in a sick way...

My son fools around a lot on the internet.. and he tends to like to

look up " new things " to study about..

I walked into the room.. and sure enough... he had a segment on

autism up and was reading it. Right now, he knows that he has a ton

in common with ADHD and that he takes meds to control it. He doesn't

know about the autism label.

I asked him what he was doing.. (thinking.. maybe this is a segway

into the conversation) when he looks up at me and says " reading

about autism. Man.. thats messed up. I mean, that is really scarey

stuff. "

oookay.. I chicked out. :-) I will take the sex ed questions over

this anyday...

[Guest guest]

At least your mom figured it out at all! It never dawned on mine. Of

course, back in the stone-age when I was growing up (the late 60's,

lol!), very few people, except for " the crackpots " , made any

connection at all between diet and behavioral disorders. Food

allergies were known to run in my family. I was not thought to be

allergic to milk, but my older sister was. Of course, I adored it and

drank it by the bottle. Hmmmmmmmmm...

In retrospect, the most significant thing about my childhood condition

is the fact that I had scarlet fever (a generalized strep infection)

when I was 7 years old. My anxiety/Tourette's/OCD issues started when

I was 8. Coincidence? I think not! :-) In fact, my mom often said

that my personality completely changed when I was 8. And it did. I

was a happy, outgoing child who became shy, withdrawn, beset by

irrational fears, had nightmares, and twitched and squeaked. My poor

parents wasted thousands of dollars by putting me in traditional

psychoanalysis!

Donna

>

> > Ah, yes...me, too, actually. I was VERY OCD and had

> > some mild

> > Tourette's that would pop up occasionally. It drove

> > my parents,

> > especially my mom, to distraction. My mother would

> > yell at me,

> > " Donna, STOP SQUEAKING!! " As if...! And of

> > course, I was the poster

> > child for " better living through chemistry " eating.

> > We had all kinds

> > of sugary, red-dye-laden, milk-based junk around the

> > house, all the

> > time.

> >

>

> __________________________________________________

>

[Guest guest]

My 9 yr old ASD boy was at the beach. After standing next to a boy

who was making a sandcastle for 15 mins, Guy noticed he was

white..white..white. Crouching on his knees trying to get a closer

look at the boy's eyes my son annouces to the world that he thinks

the subject in front of him is an albino.

I sat down next to them and while the other boy continued to build

his sandcastle I talked to my son about people and their differences.

How some times you can see that people are a bit different from

others by how they look. Other times you can see that people are

different by how the behave-just like you. He looked at me. And then

I talked about how he had just spoken, and how the other boy may have

felt when he did. Then I pointed out some of the things that he has

difficulty doing and is good at doing that other people don't do to

the same degree. Which he realises. I then talked about the label,

Autism, and what it is an indication of. Accepting and respecting

others and their differences as we would like them to respect and

value us

My boy values being intelligence.

I asked him if he could be social likes the kids at school, play with

them, but he would have to drop a few IQ points would he like to? He

was very tempted to be a social butterfly but he loves the way he is.

He gets heaps of personal pleasure from reading and learning.

We then had a full on discussion about Andy Warhole and his abilitiy

to see the world from a different prospective than most people. How

valuable his work was at helping people see art in every day objects.

And how andy, just like my son, would have liked to be a machine.

Emotions are hard for alot of people to handle.

My son loved this little intelectual discussion and stated that he

could feel his IQ level increasing..lol

not long ago I was reading a blog from a man who has asd asperges? is

a university lecturer how has a son with the same inclinations. He

felt that Autism just IS. Maybe advice about telling your child about

his diagnosis should come from some one who knows how it feels to

recieve a label.

My paed (told me he himselfis add) dislikes labels and prefers to

talk symptoms. The only time he labeled my adhd boys (apart from

initial contact) is when he needed gov approval to write the

perscription for their meds. When I have asked him if they are adhd

he asked who wanted to know. He said we don't need a label to deal

with the issues. Please note, that with Autism, funding and school

support is attached to receiveing the label.