Re:Discussion about labels
Deb Lewis
***He interacts with people, but his social skills are a bit lacking. He
regularly says inappropriate things. ***
My social skills are lacking. Partly because I don't enjoy socializing. I haven't had the patience or inclination to develop nice social skills. I don't like small talk and if I'm with folks and someone's going on about the terrible calamity of a broken fingernail I'm the most likely person to compare that catastrophe to, say, the recent earthquake in China. Yes, I'm one of those annoying people. <g> Lots of people would find my behavior inappropriate. <g> Put me in the woods and I can tell you (usually) what tree is what, what a shrub or wild flower is called, what bird is singing in the beyond, what that spider crawling up your leg is. I know the name of every dog and most of the cats in our neighborhood but can't remember the names of their people. I might forget to offer you a cup of coffee if you come through my door but your dog would get a cookie and a belly rub. <g> I can get a deer off a barbed wire fence and set a broken bird's wing and sew up a wound with dental floss, but I can't chat you up about your new hair do.<g>
(one benefit of that is I'm rarely asked to the long fingernail parties, and often hired to dog sit.<g>)
*** As a result of the evaluation, the professionals have
recommended a course of treatment or training, really.***
Since there's a way to help him learn better social skills his mom could have helped him. When Dylan was going to a new friend's house for the first time, depending how little he was I'd either call that mom and see what she expected and pass that information on to Dylan or I'd remind him he could ask ("Should I take off my shoes?" "Is it ok to take this juice into the living room?" etc.,) I still do that if I know something about the place we're going to that he doesn't know. He would do the same for me. He's known for years in any new situation to watch what the adults do, or the parents of his friends to get a clue about what he should do. That wasn't something he automatically knew, it came about because he had information and then experience.
***to help him learn the social skills that don't come naturally to
him.***
I don't think all kinds of social skills come naturally to everyone. I wouldn't know what to do at a White House dinner. There'd be someone to coach me, I'm sure, but it wouldn't come naturally to me. I wouldn't know what to do at a fancy Moroccan restaurant the first time I visited.
***but many of us (most of whom would be labeled "normal") would benefit from some
type of intervention ***
Your neighbors might like to correct your misguided homeschooling ideas. My mother would have liked to fix my freaky vegan ideas. I think there were a few folks would have stopped me from having my kid at home if they could have. I don't personally see the benefit to that kind of intervention. <g>
It's important to think about what we feel we have the right to do to other people, especially if those people are our kids who are relatively powerless compared to us.
***He had years of occupational
therapy. He reached all the milestones his OTs set for him.***
I didn't need a diagnosis when Dylan couldn't stand the feel of seams in his clothing I just needed to help Dylan not have to feel those seams. I didn't need a diagnosis when Dylan couldn't stand the texture of mashed potatoes or pudding or bananas I just needed to remember not to give him those things. I didn't need a diagnosis when his play was pacing back and forth in the same spot, holding onto his long hair and shaking it in his hands while he created a story in his head, I just needed to remind my husband the grass would eventually grow back.<g>
No one set milestones for him and yet here he is at sixteen, wearing his clothes right side out, avoiding foods he doesn't like, writing stories down without pacing or holding his hair. <g> He was not then and is not now dysfunctional or disordered. He was a kid different from his parents and his friends and he was and is absolutely normal.
***Maybe I'm naive, but I don't see a diagnosis and "label" of autism as much
different from that of cancer or heart disease or despression. ***
Parents aren't equipped to treat life threatening illness. We don't have access to drugs or medical equipment without an expert and most of us don't have a place to perform surgery. Cancer and heart disease aren't a normal state of being for most people or for most kids. If a person has cancer we don't say "Bob *is* cancer" or Chuck *is* heart disease," the way we say "Sam is ADHD."
When we're talking about behaviors we can help our kids learn those that will make life easier and avoid those that might trouble them or others because behavior is common to every human. We all have behaviors. We have experience in our society that our kids don't yet have. We have information to share.
If a diagnosis just helped parents make life better for kids then that'd be cool. But we should be cautious for some very obvious reasons. Experts don't get paid unless they convince us we need their services. Experts have a narrow definition of normal. Experts we'd take our kids to have based most of their opinion on schooled kids and schooled kids have altered psychology and stress that unschooled kids don't have. Experts refuse to see the stress schooled kids (or any kids) are under as a factor in their behavior. Experts don't suggest the problem might be the parents because if they anger parents they lose a client and don't get paid.
And less obvious, but more important, we don't get to decide how our kids should be. It's our job to meet their needs, not to force or drug or train them to meet our expectations and it seems too many parents don't understand the difference.
I don't know anything about autism and have had experience with only one child who's parents said was "on the spectrum." She stayed with us for few days when her mom had surgery. Her mom said she had behaviors she could not control but I didn't see any odd behaviors at my house. She seemed a normal kid to me and I wonder how many people in her life will treat her like there's something wrong with her because her mom makes sure everyone knows she has a diagnosis.
There's a list called "shinewithunschooling" http://groups.yahoo.com/group/shinewithunschooling/ that helps parents celebrate kids for who they are. It is not a list where you will get ideas about how to fix your kid and if anyone on this list has that idea, that their kid needs fixing, I urge you to read more about unschooling at www.sandradodd.com/unschooling and www.joyfullyrejoycing.com
And while I'm advertising I'll mention the unschooling message boards at www.unschooling.info. Not super active right now but that could change.
Deb Lewis
[Non-text portions of this message have been removed]
regularly says inappropriate things. ***
My social skills are lacking. Partly because I don't enjoy socializing. I haven't had the patience or inclination to develop nice social skills. I don't like small talk and if I'm with folks and someone's going on about the terrible calamity of a broken fingernail I'm the most likely person to compare that catastrophe to, say, the recent earthquake in China. Yes, I'm one of those annoying people. <g> Lots of people would find my behavior inappropriate. <g> Put me in the woods and I can tell you (usually) what tree is what, what a shrub or wild flower is called, what bird is singing in the beyond, what that spider crawling up your leg is. I know the name of every dog and most of the cats in our neighborhood but can't remember the names of their people. I might forget to offer you a cup of coffee if you come through my door but your dog would get a cookie and a belly rub. <g> I can get a deer off a barbed wire fence and set a broken bird's wing and sew up a wound with dental floss, but I can't chat you up about your new hair do.<g>
(one benefit of that is I'm rarely asked to the long fingernail parties, and often hired to dog sit.<g>)
*** As a result of the evaluation, the professionals have
recommended a course of treatment or training, really.***
Since there's a way to help him learn better social skills his mom could have helped him. When Dylan was going to a new friend's house for the first time, depending how little he was I'd either call that mom and see what she expected and pass that information on to Dylan or I'd remind him he could ask ("Should I take off my shoes?" "Is it ok to take this juice into the living room?" etc.,) I still do that if I know something about the place we're going to that he doesn't know. He would do the same for me. He's known for years in any new situation to watch what the adults do, or the parents of his friends to get a clue about what he should do. That wasn't something he automatically knew, it came about because he had information and then experience.
***to help him learn the social skills that don't come naturally to
him.***
I don't think all kinds of social skills come naturally to everyone. I wouldn't know what to do at a White House dinner. There'd be someone to coach me, I'm sure, but it wouldn't come naturally to me. I wouldn't know what to do at a fancy Moroccan restaurant the first time I visited.
***but many of us (most of whom would be labeled "normal") would benefit from some
type of intervention ***
Your neighbors might like to correct your misguided homeschooling ideas. My mother would have liked to fix my freaky vegan ideas. I think there were a few folks would have stopped me from having my kid at home if they could have. I don't personally see the benefit to that kind of intervention. <g>
It's important to think about what we feel we have the right to do to other people, especially if those people are our kids who are relatively powerless compared to us.
***He had years of occupational
therapy. He reached all the milestones his OTs set for him.***
I didn't need a diagnosis when Dylan couldn't stand the feel of seams in his clothing I just needed to help Dylan not have to feel those seams. I didn't need a diagnosis when Dylan couldn't stand the texture of mashed potatoes or pudding or bananas I just needed to remember not to give him those things. I didn't need a diagnosis when his play was pacing back and forth in the same spot, holding onto his long hair and shaking it in his hands while he created a story in his head, I just needed to remind my husband the grass would eventually grow back.<g>
No one set milestones for him and yet here he is at sixteen, wearing his clothes right side out, avoiding foods he doesn't like, writing stories down without pacing or holding his hair. <g> He was not then and is not now dysfunctional or disordered. He was a kid different from his parents and his friends and he was and is absolutely normal.
***Maybe I'm naive, but I don't see a diagnosis and "label" of autism as much
different from that of cancer or heart disease or despression. ***
Parents aren't equipped to treat life threatening illness. We don't have access to drugs or medical equipment without an expert and most of us don't have a place to perform surgery. Cancer and heart disease aren't a normal state of being for most people or for most kids. If a person has cancer we don't say "Bob *is* cancer" or Chuck *is* heart disease," the way we say "Sam is ADHD."
When we're talking about behaviors we can help our kids learn those that will make life easier and avoid those that might trouble them or others because behavior is common to every human. We all have behaviors. We have experience in our society that our kids don't yet have. We have information to share.
If a diagnosis just helped parents make life better for kids then that'd be cool. But we should be cautious for some very obvious reasons. Experts don't get paid unless they convince us we need their services. Experts have a narrow definition of normal. Experts we'd take our kids to have based most of their opinion on schooled kids and schooled kids have altered psychology and stress that unschooled kids don't have. Experts refuse to see the stress schooled kids (or any kids) are under as a factor in their behavior. Experts don't suggest the problem might be the parents because if they anger parents they lose a client and don't get paid.
And less obvious, but more important, we don't get to decide how our kids should be. It's our job to meet their needs, not to force or drug or train them to meet our expectations and it seems too many parents don't understand the difference.
I don't know anything about autism and have had experience with only one child who's parents said was "on the spectrum." She stayed with us for few days when her mom had surgery. Her mom said she had behaviors she could not control but I didn't see any odd behaviors at my house. She seemed a normal kid to me and I wonder how many people in her life will treat her like there's something wrong with her because her mom makes sure everyone knows she has a diagnosis.
There's a list called "shinewithunschooling" http://groups.yahoo.com/group/shinewithunschooling/ that helps parents celebrate kids for who they are. It is not a list where you will get ideas about how to fix your kid and if anyone on this list has that idea, that their kid needs fixing, I urge you to read more about unschooling at www.sandradodd.com/unschooling and www.joyfullyrejoycing.com
And while I'm advertising I'll mention the unschooling message boards at www.unschooling.info. Not super active right now but that could change.
Deb Lewis
[Non-text portions of this message have been removed]
Ren Allen
~~***but many of us (most of whom would be labeled "normal") would
benefit from some type of intervention ***~~
I disagree.
I think most of the "therapy" and "milestones" are all about making a
person fit into mainstream. I believe the world would be a better
place if we didn't do that. People WILL gain coping tools or they
won't. Trying to make them appear like everyone else, doesn't mean
they're wired like anyone else.
It makes others more comfortable to "correct" these differences, but
maybe we should just get comfortable with differences.
Sure, there are tools and support some people might need in order to
help them in this world. But it should be at THEIR request not because
WE decide they need to fit in.
Ren
learninginfreedom.com
benefit from some type of intervention ***~~
I disagree.
I think most of the "therapy" and "milestones" are all about making a
person fit into mainstream. I believe the world would be a better
place if we didn't do that. People WILL gain coping tools or they
won't. Trying to make them appear like everyone else, doesn't mean
they're wired like anyone else.
It makes others more comfortable to "correct" these differences, but
maybe we should just get comfortable with differences.
Sure, there are tools and support some people might need in order to
help them in this world. But it should be at THEIR request not because
WE decide they need to fit in.
Ren
learninginfreedom.com
Carron Armstrong
That may be, but I would not describe my son's social circle as mainstream
at all. Those kids (like their parents) run the gamet. Most are
unschoolers. They're the most accepting group of kids I've even
known. Yet, even they were having a hard time coping with his behavior.
They had begun to turn away from him. My own son had asked me, "Why does he
say those things?" Now, my son and the others are saying, "Oh, now I
understand." My goodness, if a group of unschooled teens are having a hard
time with this child socially, what's going to happen to him out in the
"real" world? I think having something to pin the behavior on (blame the
behavior on?) in this case is a positive thing.
I'm not an expert on Asperger's by any means, but from what I've read, the
children who exhibit these "social differences" often can't read the
reactions of others or don't understand why others react the way they do.
That would make it hard for them to ask for assistance. They know
something's not quite right, but don't understand what it is or why.
As to his mom, she's a single mom who works very hard. His father is not
very involved in his life. His mom is a college instructor who teaches at
three different colleges in order to make enough money for them to
live. She is very grateful to have the therapy available and her son is
excited to get started.
As for my own son with SID, our research at the time indicated that OT would
be most effective before the age of 10. At 10, the brain's sensory
perception connections become hardwired, and therapy doesn't do much good.
I haven't looked at the state of the research lately, so I don't know if
that's still the conventional wisdom. But when my son was 5, and was
cowering on the floor in the corner of his classroom, he didn't know what
was wrong and neither did we. I wasn't willing to wait to find out if
maturity would take care of it or if he would learn to cope.
We never made a big deal out of it. He went to OT twice a week to play with
Miss Cindi. We never told anyone except my MIL about the diagnosis. Until
he was long out of OT, we never even told Zack why he went. He didn't seem
to feel different and we didn't want him to feel that he was different from
other kids. Sometime ago, the topic came up in conversation about a friend
of his, and he asked us what SID was. I told him that's why he went to play
with Miss Cindi when he was little. That was the last of it.
Carron
at all. Those kids (like their parents) run the gamet. Most are
unschoolers. They're the most accepting group of kids I've even
known. Yet, even they were having a hard time coping with his behavior.
They had begun to turn away from him. My own son had asked me, "Why does he
say those things?" Now, my son and the others are saying, "Oh, now I
understand." My goodness, if a group of unschooled teens are having a hard
time with this child socially, what's going to happen to him out in the
"real" world? I think having something to pin the behavior on (blame the
behavior on?) in this case is a positive thing.
I'm not an expert on Asperger's by any means, but from what I've read, the
children who exhibit these "social differences" often can't read the
reactions of others or don't understand why others react the way they do.
That would make it hard for them to ask for assistance. They know
something's not quite right, but don't understand what it is or why.
As to his mom, she's a single mom who works very hard. His father is not
very involved in his life. His mom is a college instructor who teaches at
three different colleges in order to make enough money for them to
live. She is very grateful to have the therapy available and her son is
excited to get started.
As for my own son with SID, our research at the time indicated that OT would
be most effective before the age of 10. At 10, the brain's sensory
perception connections become hardwired, and therapy doesn't do much good.
I haven't looked at the state of the research lately, so I don't know if
that's still the conventional wisdom. But when my son was 5, and was
cowering on the floor in the corner of his classroom, he didn't know what
was wrong and neither did we. I wasn't willing to wait to find out if
maturity would take care of it or if he would learn to cope.
We never made a big deal out of it. He went to OT twice a week to play with
Miss Cindi. We never told anyone except my MIL about the diagnosis. Until
he was long out of OT, we never even told Zack why he went. He didn't seem
to feel different and we didn't want him to feel that he was different from
other kids. Sometime ago, the topic came up in conversation about a friend
of his, and he asked us what SID was. I told him that's why he went to play
with Miss Cindi when he was little. That was the last of it.
Carron
On 6/8/08, Ren Allen <starsuncloud@...> wrote:
>
> ~~***but many of us (most of whom would be labeled "normal") would
> benefit from some type of intervention ***~~
>
> I disagree.
> I think most of the "therapy" and "milestones" are all about making a
> person fit into mainstream. I believe the world would be a better
> place if we didn't do that. People WILL gain coping tools or they
> won't. Trying to make them appear like everyone else, doesn't mean
> they're wired like anyone else.
>
> It makes others more comfortable to "correct" these differences, but
> maybe we should just get comfortable with differences.
>
> Sure, there are tools and support some people might need in order to
> help them in this world. But it should be at THEIR request not because
> WE decide they need to fit in.
>
> Ren
> learninginfreedom.com
>
>
>
[Non-text portions of this message have been removed]
Joyce Fetteroll
On Jun 8, 2008, at 11:56 PM, Carron Armstrong wrote:
I'm not saying that in a mean way but as a way to get past the idea
that an unschooling parent would need a cause rather than ... it
keeps getting written as "acceptance" as though the next step is
shrugging but that's not it: it's acknowledgment that this is an area
he needs extra help in.
Just sit with that idea for a moment. If a child is having problems
relating socially, do his problems disappear if there's a diagnosis?
(Put aside the idea of services for a moment.) Isn't he still
struggling with relating after the diagnosis?
People are trying to help move thinking from "He's different. He
needs expert help to function/be happy," to "He's struggling. He
needs my help to handle the situation."
It's empowerment. Rather than panic with feelings of inadequacy
because you don't know and aren't an expert or step back and hope for
the best, the empowering choice is to really see what the child is
having problems with in the moment (and sometimes the big picture)
and find ways to help.
The idea isn't "Never ever seek services", the idea is "Trust that
you *can* help the child deal with what he's struggling to do." When
a parent feels empowered, then experts lose a lot of their power and
just become another resource.
social cues than others.
Autistic kids need a lot more help. But it *is* help that an aware
empowered parent can give to a child. (Fresh ideas from other parents
who feel empowered to help them start thinking outside the
conventional parenting box can be very useful!)
What people are discussing is to not feel helpless when there are
differences, to not feel that you can't do anything (because the
child is "broken" and needs fixed by experts).
unschooling parents. As unschooling parents we have the ability to be
there full time for our kids, to see them in social situations, to
see them playing, to get to know where they sail easily and where
they struggle.
like that at home? The empowered response is to see outside the box
and say "Hey, he doesn't deal with classrooms. Let's not put him in a
classroom."
Yes, I know you weren't unschooling at the time, but the list is for
unschoolers. The list is for helping people see that they aren't
trapped by situations the way schooling parents are. We don't need to
make our kids conform to what's expected. We can, instead, help them
with the things they want to do.
That second part is important! Parents should take the "don't make
them conform" as permission to let them be antisocial because that's
just the way they are. We're social creatures. We do want to get
along with others. It isn't fair to to the child or to others to not
help.
What "not conforming to expectations" means is that we don't have to
make a 4 yo sit in a chair because society expects preschoolers to be
able to do it. We don't have to force socialization on a 3 yo so they
learn to "play nice". (We can keep them from situations they don't
need and wait for maturity to help.) And so on.
Joyce
[Non-text portions of this message have been removed]
> I think having something to pin the behavior on (blame theBecause it excuses it? Because the behavior is then okay?
> behavior on?) in this case is a positive thing.
I'm not saying that in a mean way but as a way to get past the idea
that an unschooling parent would need a cause rather than ... it
keeps getting written as "acceptance" as though the next step is
shrugging but that's not it: it's acknowledgment that this is an area
he needs extra help in.
Just sit with that idea for a moment. If a child is having problems
relating socially, do his problems disappear if there's a diagnosis?
(Put aside the idea of services for a moment.) Isn't he still
struggling with relating after the diagnosis?
People are trying to help move thinking from "He's different. He
needs expert help to function/be happy," to "He's struggling. He
needs my help to handle the situation."
It's empowerment. Rather than panic with feelings of inadequacy
because you don't know and aren't an expert or step back and hope for
the best, the empowering choice is to really see what the child is
having problems with in the moment (and sometimes the big picture)
and find ways to help.
The idea isn't "Never ever seek services", the idea is "Trust that
you *can* help the child deal with what he's struggling to do." When
a parent feels empowered, then experts lose a lot of their power and
just become another resource.
> but from what I've read, theEveryone is that way to some extent. Some need more help reading
> children who exhibit these "social differences" often can't read the
> reactions of others or don't understand why others react the way
> they do.
social cues than others.
Autistic kids need a lot more help. But it *is* help that an aware
empowered parent can give to a child. (Fresh ideas from other parents
who feel empowered to help them start thinking outside the
conventional parenting box can be very useful!)
> That would make it hard for them to ask for assistance. They knowBut mom can see. Mom can see a struggle and help him with strategies.
> something's not quite right, but don't understand what it is or why.
What people are discussing is to not feel helpless when there are
differences, to not feel that you can't do anything (because the
child is "broken" and needs fixed by experts).
> As to his mom, she's a single mom who works very hard. His fatherWe all do the best we can but this list is directed at full time
> is not
> very involved in his life. His mom is a college instructor who
> teaches at
> three different colleges in order to make enough money for them to
> live. She is very grateful to have the therapy available and her
> son is
> excited to get started.
unschooling parents. As unschooling parents we have the ability to be
there full time for our kids, to see them in social situations, to
see them playing, to get to know where they sail easily and where
they struggle.
> But when my son was 5, and wasBut you *did* know he didn't like the classroom, right? Did he cower
> cowering on the floor in the corner of his classroom, he didn't
> know what
> was wrong and neither did we.
like that at home? The empowered response is to see outside the box
and say "Hey, he doesn't deal with classrooms. Let's not put him in a
classroom."
Yes, I know you weren't unschooling at the time, but the list is for
unschoolers. The list is for helping people see that they aren't
trapped by situations the way schooling parents are. We don't need to
make our kids conform to what's expected. We can, instead, help them
with the things they want to do.
That second part is important! Parents should take the "don't make
them conform" as permission to let them be antisocial because that's
just the way they are. We're social creatures. We do want to get
along with others. It isn't fair to to the child or to others to not
help.
What "not conforming to expectations" means is that we don't have to
make a 4 yo sit in a chair because society expects preschoolers to be
able to do it. We don't have to force socialization on a 3 yo so they
learn to "play nice". (We can keep them from situations they don't
need and wait for maturity to help.) And so on.
Joyce
[Non-text portions of this message have been removed]
Melissa Gray
Yes! ALL kids have this problem with social cues...that's why
mainstream parents spend the first seven to eight years of every
child's life punishing and rewarding them for behaviors. We just
don't see it as unusual (the way autistic kids are viewed) because
we've come to expect those behaviors (lying, taking things without
asking, talking back). Parents expect this, expect to be able to
discipline or punish (or however they handle it, in nice ways they
redirect, etc) those behaviors. We just view autistic behaviors as so
extreme that we can't deal with it. Part of that is the medical
establishment. After all, their bread and butter relies on
disempowering us and making us NEED them. I don't think it's
malicious any more, the doctors/psychologists that we see were
trained to believe this in medical/graduate school, by doctors or
psychologists who were trained to believe this in medical/graduate
school. It's a closed system, with very little outside view. They
fight change. I was premed, I spent many summers with a mentor in the
hospital. I have doctor friends. They are just people, and after a
few years of dealing with those people (both as a single student, and
as a mom with seven kids), I came to realize that they don't know
much more. Parenting my quirky children is no different than
parenting my totally mainstream children. It takes more work, you
have to be open constantly and totally on them, I call it
superparenting, but really again, it's the same parenting.
If we can look at our children with open hearts, learn to TRUST
ourselves again, we can help our children so much more. They will
learn. I have kids that prove it. They will learn after whatever
magical age the doctors told you that their brain is static, I
promise. I was told Bre would never talk because she didn't speak
before three. She started verbalizing at four. I was told she
wouldn't talk if she didn't make sentences before five. She started
after that magical date, and now can talk pretty good. I was told she
wouldn't make friends, she has three that come over and visit
regularly (plus her own sisters). She's not what I would consider a
good friend for ME....but those girls love and respect who she is.
They come in and play her way, until they are bored and then they
drag her to play their way for a while, they continue to play and
ignore her stims. THOSE ARE THE FRIENDS I WANT HER TO HAVE, NOT THE
ONES I HAVE TO CHANGE HER FOR THEM TO LIKE. I was told she'd never be
self sufficient, yet at eleven, she can make scrambled eggs, cook hot
dogs, make mac-n-cheese, steam just about any veggie, and make home
made baked goods. I could go on and on... I have dozens of examples
that prove you should never trust a professional who barely knows
your child, just knows a summation of disorder tendencies.
Melissa
Mom to Joshua, Breanna, Emily, Rachel, Samuel, Daniel and Avari
Wife to Zane
blog me at
http://startlinglives.blogspot.com/
http://startlinglives365.blogspot.com
mainstream parents spend the first seven to eight years of every
child's life punishing and rewarding them for behaviors. We just
don't see it as unusual (the way autistic kids are viewed) because
we've come to expect those behaviors (lying, taking things without
asking, talking back). Parents expect this, expect to be able to
discipline or punish (or however they handle it, in nice ways they
redirect, etc) those behaviors. We just view autistic behaviors as so
extreme that we can't deal with it. Part of that is the medical
establishment. After all, their bread and butter relies on
disempowering us and making us NEED them. I don't think it's
malicious any more, the doctors/psychologists that we see were
trained to believe this in medical/graduate school, by doctors or
psychologists who were trained to believe this in medical/graduate
school. It's a closed system, with very little outside view. They
fight change. I was premed, I spent many summers with a mentor in the
hospital. I have doctor friends. They are just people, and after a
few years of dealing with those people (both as a single student, and
as a mom with seven kids), I came to realize that they don't know
much more. Parenting my quirky children is no different than
parenting my totally mainstream children. It takes more work, you
have to be open constantly and totally on them, I call it
superparenting, but really again, it's the same parenting.
If we can look at our children with open hearts, learn to TRUST
ourselves again, we can help our children so much more. They will
learn. I have kids that prove it. They will learn after whatever
magical age the doctors told you that their brain is static, I
promise. I was told Bre would never talk because she didn't speak
before three. She started verbalizing at four. I was told she
wouldn't talk if she didn't make sentences before five. She started
after that magical date, and now can talk pretty good. I was told she
wouldn't make friends, she has three that come over and visit
regularly (plus her own sisters). She's not what I would consider a
good friend for ME....but those girls love and respect who she is.
They come in and play her way, until they are bored and then they
drag her to play their way for a while, they continue to play and
ignore her stims. THOSE ARE THE FRIENDS I WANT HER TO HAVE, NOT THE
ONES I HAVE TO CHANGE HER FOR THEM TO LIKE. I was told she'd never be
self sufficient, yet at eleven, she can make scrambled eggs, cook hot
dogs, make mac-n-cheese, steam just about any veggie, and make home
made baked goods. I could go on and on... I have dozens of examples
that prove you should never trust a professional who barely knows
your child, just knows a summation of disorder tendencies.
Melissa
Mom to Joshua, Breanna, Emily, Rachel, Samuel, Daniel and Avari
Wife to Zane
blog me at
http://startlinglives.blogspot.com/
http://startlinglives365.blogspot.com
On Jun 9, 2008, at 5:51 AM, Joyce Fetteroll wrote:
> Everyone is that way to some extent. Some need more help reading
> social cues than others.
>
> Autistic kids need a lot more help. But it *is* help that an aware
> empowered parent can give to a child. (Fresh ideas from other parents
> who feel empowered to help them start thinking outside the
> conventional parenting box can be very useful!)
[Non-text portions of this message have been removed]
C Kangas
LOL! I have to laugh Deb because I am exactly the same way. I have always said - 'the more people I meet - the more I like my animals..'.... My mother was similar and my daughter as well.
[Non-text portions of this message have been removed]
[Non-text portions of this message have been removed]
Melissa Gray
Responding to my own post (how embarrassing) but I wanted to
emphasize that the 'typical' behaviors I listed below are necessarily
bad, but developmental stages in personal growth. I listed them out
so starkly like some child in juvie is running rampant, but I hope
you all understand where I was going with that. The change in the way
we look at things, as unschoolers, helps us to realize that their
behaviors are usually ways of asking for something that they aren't
getting.
And I wrote seven to eight years, because the kids I know usually do
not perform those behaviors after that age, with or without
punishments. They seem to be more settled in who they are, and don't
need it unless they are in an environment where lying, stealing,
cheating are much more advantageous than not.
Melissa
Mom to Joshua, Breanna, Emily, Rachel, Samuel, Daniel and Avari
Wife to Zane
blog me at
http://startlinglives.blogspot.com/
http://startlinglives365.blogspot.com
emphasize that the 'typical' behaviors I listed below are necessarily
bad, but developmental stages in personal growth. I listed them out
so starkly like some child in juvie is running rampant, but I hope
you all understand where I was going with that. The change in the way
we look at things, as unschoolers, helps us to realize that their
behaviors are usually ways of asking for something that they aren't
getting.
And I wrote seven to eight years, because the kids I know usually do
not perform those behaviors after that age, with or without
punishments. They seem to be more settled in who they are, and don't
need it unless they are in an environment where lying, stealing,
cheating are much more advantageous than not.
Melissa
Mom to Joshua, Breanna, Emily, Rachel, Samuel, Daniel and Avari
Wife to Zane
blog me at
http://startlinglives.blogspot.com/
http://startlinglives365.blogspot.com
On Jun 9, 2008, at 8:23 AM, Melissa Gray wrote:
> Yes! ALL kids have this problem with social cues...that's why
> mainstream parents spend the first seven to eight years of every
> child's life punishing and rewarding them for behaviors. We just
> don't see it as unusual (the way autistic kids are viewed) because
> we've come to expect those behaviors (lying, taking things without
> asking, talking back). Parents expect this
[Non-text portions of this message have been removed]
Lisa
I have 4 children all of which the school system could or did label
with something. There are positive and negative ways to handle
labels...luckily we had a very wise pediatrician who said "well does
this just give a name to the difficulty or does it tell us something
that is helpful to the family?" He was very careful not to order
stacks of "tests" and "evaluations" that just gave us names but things
that were helpful.
For my family it was helpful to know that the reason my oldest had
difficulty still in 3rd grade with writing wasn't because she was
"lazy" as the school wanted to say but that even at that age her fine
motor skills and upper body strength and endurance was equal to that
of a typical 5 yr old. That information helped us to find things to
do that helped her strengthen her body...she looked typically
developing to us physically although small in stature. Without that
information we may have eventually thought she just wasn't trying hard
enough rather than just wasn't physically ready.
For my family it was helpful to get a medical diagnosis of a genetic
disorder that my 3rd child was suspected of having. When you are
fighting hard to keep a child alive and faced with health crisis after
crisis and there's nothing to tell you why or what you are fighting
it's helpful to know it has a name so you can plan for things.
Knowing she had this disorder gave us a list of health things to check
into so we could handle things before she was in another crisis that
may take her life.
Later knowing that she had an autism spectrum disorder also helped us
to know why she learned differently so we could focus how we
interacted with her in a way that respected her as a person and helped
her live a more comfortable life. I knew when I asked her to bring
something to me that no matter how many times she'd seen a hairbrush,
used a hairbrush and heard it called a hairbrush that because of the
way her brain learned language that her brain may not have filed that
in a place where she automatically knew what I was asking for. I can
read about autism spectrum disorders and know what to do to help her
be less overwhelmed in social situations and help her navigate in a
way that helps her make connections with the people that she wants to
connect to. Knowing that incidental learning is thought to rarely
happen in children that have autism spectrum disorders helped me to
look for situations where this was a problem for her. Knowing that
perhaps people on the spectrum don't generalize skills from one
environment to another well most of the time is also helpful.
I don't use her label to define who she is, she has lots of
labels...she is a wonderfully bright girl that draws beautifully,
she's funny and loving (unless you are her younger brother!)she has
friends, she is a cheerleader, she is a softball player and she just
happens to have an autism spectrum disorder... I use her label to help
me learn about difficulties that are common to people with autism
spectrum disorder so that I can help her.
Unfortunately the world is more kind when your 13 yr old is having a
meltdown in a store or other place when you can say "thanks for your
advice but spanking does not cure autism". Yes in a perfect world I
would never have to take her somewhere that causes a meltdown but I
don't live in that world and I do have to use "experts" and "services"
from the government and other agencies because I do have 4 children
who all deserve my best. I can not physically take care of her needs
in a way that is respectful to her and take care of my other 3 in ways
that respect them and keep my sanity without help. I don't think
asking for help makes someone a lesser person but a person who
understands limitations of the body and mind and respects themselves
enough to BE HERE for the long term.
Anyway that's my 2 cents worth (and more!)
Lisa Blocker
with something. There are positive and negative ways to handle
labels...luckily we had a very wise pediatrician who said "well does
this just give a name to the difficulty or does it tell us something
that is helpful to the family?" He was very careful not to order
stacks of "tests" and "evaluations" that just gave us names but things
that were helpful.
For my family it was helpful to know that the reason my oldest had
difficulty still in 3rd grade with writing wasn't because she was
"lazy" as the school wanted to say but that even at that age her fine
motor skills and upper body strength and endurance was equal to that
of a typical 5 yr old. That information helped us to find things to
do that helped her strengthen her body...she looked typically
developing to us physically although small in stature. Without that
information we may have eventually thought she just wasn't trying hard
enough rather than just wasn't physically ready.
For my family it was helpful to get a medical diagnosis of a genetic
disorder that my 3rd child was suspected of having. When you are
fighting hard to keep a child alive and faced with health crisis after
crisis and there's nothing to tell you why or what you are fighting
it's helpful to know it has a name so you can plan for things.
Knowing she had this disorder gave us a list of health things to check
into so we could handle things before she was in another crisis that
may take her life.
Later knowing that she had an autism spectrum disorder also helped us
to know why she learned differently so we could focus how we
interacted with her in a way that respected her as a person and helped
her live a more comfortable life. I knew when I asked her to bring
something to me that no matter how many times she'd seen a hairbrush,
used a hairbrush and heard it called a hairbrush that because of the
way her brain learned language that her brain may not have filed that
in a place where she automatically knew what I was asking for. I can
read about autism spectrum disorders and know what to do to help her
be less overwhelmed in social situations and help her navigate in a
way that helps her make connections with the people that she wants to
connect to. Knowing that incidental learning is thought to rarely
happen in children that have autism spectrum disorders helped me to
look for situations where this was a problem for her. Knowing that
perhaps people on the spectrum don't generalize skills from one
environment to another well most of the time is also helpful.
I don't use her label to define who she is, she has lots of
labels...she is a wonderfully bright girl that draws beautifully,
she's funny and loving (unless you are her younger brother!)she has
friends, she is a cheerleader, she is a softball player and she just
happens to have an autism spectrum disorder... I use her label to help
me learn about difficulties that are common to people with autism
spectrum disorder so that I can help her.
Unfortunately the world is more kind when your 13 yr old is having a
meltdown in a store or other place when you can say "thanks for your
advice but spanking does not cure autism". Yes in a perfect world I
would never have to take her somewhere that causes a meltdown but I
don't live in that world and I do have to use "experts" and "services"
from the government and other agencies because I do have 4 children
who all deserve my best. I can not physically take care of her needs
in a way that is respectful to her and take care of my other 3 in ways
that respect them and keep my sanity without help. I don't think
asking for help makes someone a lesser person but a person who
understands limitations of the body and mind and respects themselves
enough to BE HERE for the long term.
Anyway that's my 2 cents worth (and more!)
Lisa Blocker
[email protected]
-----Original Message-----
From: Lisa <jlblock01@...>
Unfortunately the world is more kind when your 13 yr old is having a
meltdown in a store or other place when you can say "thanks for your
advice but spanking does not cure autism".
-=-=-=
<snort> That's wonderful! Have you actually used that line? <g>
People are very frightened of autism---and maybe rightfully so. We know
so little about it. We fear what we don't know. Probably why that
statement works so well! I bet folks back right off.
But it could just as easily be used with a three year old: "Thanks for
your advice, but spanking does not cure being three." <g>
But as Melissa wrote, it calls for *more* parenting. Not less. Super
parenting. <g>
They're whole and complete kids who need more help navigating.
Sometimes a LOT more help. But that doesn't make them "less than" or
broken.
~Kelly
Kelly Lovejoy
Conference Coordinator
Live and Learn Unschooling Conference
http://www.LiveandLearnConference.org
From: Lisa <jlblock01@...>
Unfortunately the world is more kind when your 13 yr old is having a
meltdown in a store or other place when you can say "thanks for your
advice but spanking does not cure autism".
-=-=-=
<snort> That's wonderful! Have you actually used that line? <g>
People are very frightened of autism---and maybe rightfully so. We know
so little about it. We fear what we don't know. Probably why that
statement works so well! I bet folks back right off.
But it could just as easily be used with a three year old: "Thanks for
your advice, but spanking does not cure being three." <g>
But as Melissa wrote, it calls for *more* parenting. Not less. Super
parenting. <g>
They're whole and complete kids who need more help navigating.
Sometimes a LOT more help. But that doesn't make them "less than" or
broken.
~Kelly
Kelly Lovejoy
Conference Coordinator
Live and Learn Unschooling Conference
http://www.LiveandLearnConference.org
Kelli Johnston
Kelly, when you say it like that "less than" or "broken" I totally and absolutely agree. But I guess I still see autism (or at least my son's autism) as something that happened to him from the outside. I still think there are things that we can do for him that will help him feel better and exist in life in a happier way. That doesn't mean I think that he is "broken" as a person but sorta like when he has a cold and needs help feeling better.-Kelli
To: [email protected]: kbcdlovejo@...: Mon, 9 Jun 2008 10:28:58 -0400Subject: Re: [unschoolingbasics] Re:Discussion about labels
-----Original Message-----From: Lisa <jlblock01@...>Unfortunately the world is more kind when your 13 yr old is having ameltdown in a store or other place when you can say "thanks for youradvice but spanking does not cure autism".-=-=-=<snort> That's wonderful! Have you actually used that line? <g>People are very frightened of autism---and maybe rightfully so. We know so little about it. We fear what we don't know. Probably why that statement works so well! I bet folks back right off.But it could just as easily be used with a three year old: "Thanks for your advice, but spanking does not cure being three." <g>But as Melissa wrote, it calls for *more* parenting. Not less. Super parenting. <g>They're whole and complete kids who need more help navigating. Sometimes a LOT more help. But that doesn't make them "less than" or broken.~KellyKelly LovejoyConference CoordinatorLive and Learn Unschooling Conferencehttp://www.LiveandLearnConference.org
[Non-text portions of this message have been removed]
To: [email protected]: kbcdlovejo@...: Mon, 9 Jun 2008 10:28:58 -0400Subject: Re: [unschoolingbasics] Re:Discussion about labels
-----Original Message-----From: Lisa <jlblock01@...>Unfortunately the world is more kind when your 13 yr old is having ameltdown in a store or other place when you can say "thanks for youradvice but spanking does not cure autism".-=-=-=<snort> That's wonderful! Have you actually used that line? <g>People are very frightened of autism---and maybe rightfully so. We know so little about it. We fear what we don't know. Probably why that statement works so well! I bet folks back right off.But it could just as easily be used with a three year old: "Thanks for your advice, but spanking does not cure being three." <g>But as Melissa wrote, it calls for *more* parenting. Not less. Super parenting. <g>They're whole and complete kids who need more help navigating. Sometimes a LOT more help. But that doesn't make them "less than" or broken.~KellyKelly LovejoyConference CoordinatorLive and Learn Unschooling Conferencehttp://www.LiveandLearnConference.org
[Non-text portions of this message have been removed]
Ren Allen
~~They're whole and complete kids who need more help navigating.
Sometimes a LOT more help. But that doesn't make them "less than" or
broken.~~
Exactly.
They help their parents become "more than".:)
Ren
learninginfreedom.com
Sometimes a LOT more help. But that doesn't make them "less than" or
broken.~~
Exactly.
They help their parents become "more than".:)
Ren
learninginfreedom.com
Ren Allen
~~But I guess I still see autism (or at least my son's autism)
as something that happened to him from the outside. ~~
So you don't think anybody is just BORN like that, wired like that?
Ren
learninginfreedom.com
as something that happened to him from the outside. ~~
So you don't think anybody is just BORN like that, wired like that?
Ren
learninginfreedom.com
Kelli Johnston
Ren, I do think that many people are born that way. I also think that many are not. I also think there many with some combination (predisposition and a body that release toxins typically). Because of that, I think that is important for parents to look at the child with an open mind and them as an *individual child* and really investigate all avenues for help (even if it is *just* reducing stress in the household). I also advocate to parents that they shouldn't blindly follow *anyone's* advice even if they proclaim expertise.Kelli
To: [email protected]: starsuncloud@...: Mon, 9 Jun 2008 14:55:14 +0000Subject: [unschoolingbasics] Re:Discussion about labels
~~But I guess I still see autism (or at least my son's autism)as something that happened to him from the outside. ~~So you don't think anybody is just BORN like that, wired like that?Renlearninginfreedom.com
[Non-text portions of this message have been removed]
To: [email protected]: starsuncloud@...: Mon, 9 Jun 2008 14:55:14 +0000Subject: [unschoolingbasics] Re:Discussion about labels
~~But I guess I still see autism (or at least my son's autism)as something that happened to him from the outside. ~~So you don't think anybody is just BORN like that, wired like that?Renlearninginfreedom.com
[Non-text portions of this message have been removed]
Lisa
Yes I have used that line before... and many others that aren't very
kind!! I can't claim credit though there are lots of sites for
tshirts that have great sayings! My favorites are :
Spanking does not cure autism.
If you have seen one kid with autism you have seen one kid with autism.
My child has autism and no she's not just like Rainman.
I am not a brat I have autism please be kind to my mother.
I have autism, what's your problem?
I think my daughter's autism makes her MORE who she is... in that the
wonderful things that make her uniquely who she is might not be there
if not for her autism. Her wonderful gift for visual memory (hey mom
we should have taken that last exit is very helpful for her
directionally challenged mom!) he lovely drawing is an extension of
that visual awareness, she has beautiful hands(thanks to her genetic
syndrome in which the children have lovely long thin fingers) and it's
lovely when she flaps and flicks them. She's brutally honest and sees
things in black and white, right or wrong and no in between...
sometimes that's a gift! Some of these things she would be with or
without autism .... I don't want a "cure" I want her life to be
easier, for her to be more comfortable and to get more enjoyment out
of life. I want the same for all of my children but I think I see
the importance of it being MORE needed for her because she needs help
navigating the world.
Lisa B
kind!! I can't claim credit though there are lots of sites for
tshirts that have great sayings! My favorites are :
Spanking does not cure autism.
If you have seen one kid with autism you have seen one kid with autism.
My child has autism and no she's not just like Rainman.
I am not a brat I have autism please be kind to my mother.
I have autism, what's your problem?
I think my daughter's autism makes her MORE who she is... in that the
wonderful things that make her uniquely who she is might not be there
if not for her autism. Her wonderful gift for visual memory (hey mom
we should have taken that last exit is very helpful for her
directionally challenged mom!) he lovely drawing is an extension of
that visual awareness, she has beautiful hands(thanks to her genetic
syndrome in which the children have lovely long thin fingers) and it's
lovely when she flaps and flicks them. She's brutally honest and sees
things in black and white, right or wrong and no in between...
sometimes that's a gift! Some of these things she would be with or
without autism .... I don't want a "cure" I want her life to be
easier, for her to be more comfortable and to get more enjoyment out
of life. I want the same for all of my children but I think I see
the importance of it being MORE needed for her because she needs help
navigating the world.
Lisa B
--- In [email protected], kbcdlovejo@... wrote:
>
> -----Original Message-----
> From: Lisa <jlblock01@...>
>
> Unfortunately the world is more kind when your 13 yr old is having a
> meltdown in a store or other place when you can say "thanks for your
> advice but spanking does not cure autism".
>
> -=-=-=
>
> <snort> That's wonderful! Have you actually used that line? <g>
>
> People are very frightened of autism---and maybe rightfully so. We know
> so little about it. We fear what we don't know. Probably why that
> statement works so well! I bet folks back right off.
>
> But it could just as easily be used with a three year old: "Thanks for
> your advice, but spanking does not cure being three." <g>
>
> But as Melissa wrote, it calls for *more* parenting. Not less. Super
> parenting. <g>
>
> They're whole and complete kids who need more help navigating.
> Sometimes a LOT more help. But that doesn't make them "less than" or
> broken.
>
>
>
> ~Kelly
>
> Kelly Lovejoy
> Conference Coordinator
> Live and Learn Unschooling Conference
> http://www.LiveandLearnConference.org
>
Joyce Fetteroll
On Jun 9, 2008, at 10:07 AM, Lisa wrote:
would work hard at helping people eliminate.
The respectful place to begin would be "not ready." And what much of
this discussion is about is helping people see they don't need
experts to tell them that!
snarky one. What in society or your background or parenting book said
"Children need to do x, y and z and those who aren't are lazy or
otherwise being defiant." Were you locked into thinking there was a
specific way she had to act and the only way you could get out of
that course you were locked into was by permission of an expert who
said "She's not typical"?
Joyce
[Non-text portions of this message have been removed]
> Without thatAnd "lazy" and "not trying hard enough" would be thinking unschoolers
> information we may have eventually thought she just wasn't trying hard
> enough rather than just wasn't physically ready.
would work hard at helping people eliminate.
The respectful place to begin would be "not ready." And what much of
this discussion is about is helping people see they don't need
experts to tell them that!
> Later knowing that she had an autism spectrum disorder also helped usBut why did you need to know? (That's a serious question, not a
> to know why she learned differently so we could focus how we
> interacted with her in a way that respected her as a person and helped
> her live a more comfortable life.
snarky one. What in society or your background or parenting book said
"Children need to do x, y and z and those who aren't are lazy or
otherwise being defiant." Were you locked into thinking there was a
specific way she had to act and the only way you could get out of
that course you were locked into was by permission of an expert who
said "She's not typical"?
Joyce
[Non-text portions of this message have been removed]
Jodi Bezzola
~~If you have seen one kid with autism you have seen one kid with autism.~~
Thanks Lisa, I LOVE this one, and think it bears repeating!
Jodi
[Non-text portions of this message have been removed]
Thanks Lisa, I LOVE this one, and think it bears repeating!
Jodi
[Non-text portions of this message have been removed]
:: anne | arun ::
this discussion around labels was one of the first threads i read
when i joined a bunch of unschooling egroups several years ago. At
the time someone posted this article by Anne O:
http://www.livingjoyfully.ca/anneo/I_Am_What_I_Am.htm
i thought id post it again because i dont think its come up in this
iteration of the label discussion, and it remains one of the most
inspirational and moving things ive read about unschooling... well
living really.
I believe Anne O also initiated the Shine with Unschooling egroup
which is still going.
all the best
arun
_____________________________________________
http://www.theparentingpit.com
[Non-text portions of this message have been removed]
when i joined a bunch of unschooling egroups several years ago. At
the time someone posted this article by Anne O:
http://www.livingjoyfully.ca/anneo/I_Am_What_I_Am.htm
i thought id post it again because i dont think its come up in this
iteration of the label discussion, and it remains one of the most
inspirational and moving things ive read about unschooling... well
living really.
I believe Anne O also initiated the Shine with Unschooling egroup
which is still going.
all the best
arun
_____________________________________________
http://www.theparentingpit.com
[Non-text portions of this message have been removed]
Lisa
The biggest reason we sought a diagnosis was because of the genetic
syndrome and our confusion about whether the behaviors we were seeing
were related to that or something else. The genetic syndrome she has
can cause serious mental health issues (bipolar, schizophrenia,
irreversible psychosis and other scary issues)that don't respond
easily to treatment unless treated early.
We were living with a child (I was also in a very different place as a
parent in those days being a former teacher and having children
enrolled in schools and was overwhelmed with what I did NOT know)
that spent her days engaging in "play" that seemed strange to us
..lining things up all over the house and then completely melting down
if they were accidentally moved or knocked over by others. We knew
instinctively that she needed to do that and that she needed a place
to do it but I do have other children who deserved to be able to live
in their house too and play and not be on pins and needles worrying
about knocking something over they hadn't realized was important. We
needed tools to know how to all live in peace... that part was NOT
instinctual to me at that place in my life.
She had specific ways that things had to be done to prevent a meltdown
but she was nonverbal so she couldn't tell us what she wanted or
needed. I didn't know about picture communication cards or other
things that would give her a way to communicate so I could figure out
how she needed things to be.
I could not access the best information and help that I needed to
learn about how to help her without having a diagnosis for her. I
read everything I could find, talked to everyone I could access and
everything else before I sought a diagnosis. The BEST help I could
get for my child required something to call it. I was willing and
would still be willing to put her through a day of playing with
therapists to determine if she fit the diagnosis if it helped her.
With the right therapy for our child and the right tools for our child
we know have a happy child...she still has autism (still has brown
eyes too ;-) ) But we know more about her ... I NEEDED that
information to focus what I did and what I learned so that I could
help her.
So a simple answer was that "I" needed to be able to focus my energy
on helping her and meeting her where she was and to do that I needed
to know what I was dealing with. I never thought she was lazy or
defiant or needed to accomplish x and Y by a certain age... I did fear
that I would lose her to the mental health challenges that can come
with her genetic syndrome. I was trying to empower ME so that I could
help her. I had lots of advice from friends and family ...some good
some bad. Her having a "label" for our family helps us get the
services, support and help for her that we could not afford or
physically provide without it.
And yes in the place that I am today I would not need a label... I
would know more about where to find help without a label, I would know
how to help all of my children exist on the same planet without
someone else telling me (although isn't that why we are all here on
this list ? ) I wouldn't need as many professional therapists
because I would be able to access that information without them. In
1998 when she was 3 there was alot less awareness, alot less
information publicly available, alot less education for parents, and
frankly just alot less known about autism. I also wasn't 41 yrs old
and confident about my parenting ....I was 31 and not so sure I
wouldn't ruin my children without help! ;-)
Lisa B
-
syndrome and our confusion about whether the behaviors we were seeing
were related to that or something else. The genetic syndrome she has
can cause serious mental health issues (bipolar, schizophrenia,
irreversible psychosis and other scary issues)that don't respond
easily to treatment unless treated early.
We were living with a child (I was also in a very different place as a
parent in those days being a former teacher and having children
enrolled in schools and was overwhelmed with what I did NOT know)
that spent her days engaging in "play" that seemed strange to us
..lining things up all over the house and then completely melting down
if they were accidentally moved or knocked over by others. We knew
instinctively that she needed to do that and that she needed a place
to do it but I do have other children who deserved to be able to live
in their house too and play and not be on pins and needles worrying
about knocking something over they hadn't realized was important. We
needed tools to know how to all live in peace... that part was NOT
instinctual to me at that place in my life.
She had specific ways that things had to be done to prevent a meltdown
but she was nonverbal so she couldn't tell us what she wanted or
needed. I didn't know about picture communication cards or other
things that would give her a way to communicate so I could figure out
how she needed things to be.
I could not access the best information and help that I needed to
learn about how to help her without having a diagnosis for her. I
read everything I could find, talked to everyone I could access and
everything else before I sought a diagnosis. The BEST help I could
get for my child required something to call it. I was willing and
would still be willing to put her through a day of playing with
therapists to determine if she fit the diagnosis if it helped her.
With the right therapy for our child and the right tools for our child
we know have a happy child...she still has autism (still has brown
eyes too ;-) ) But we know more about her ... I NEEDED that
information to focus what I did and what I learned so that I could
help her.
So a simple answer was that "I" needed to be able to focus my energy
on helping her and meeting her where she was and to do that I needed
to know what I was dealing with. I never thought she was lazy or
defiant or needed to accomplish x and Y by a certain age... I did fear
that I would lose her to the mental health challenges that can come
with her genetic syndrome. I was trying to empower ME so that I could
help her. I had lots of advice from friends and family ...some good
some bad. Her having a "label" for our family helps us get the
services, support and help for her that we could not afford or
physically provide without it.
And yes in the place that I am today I would not need a label... I
would know more about where to find help without a label, I would know
how to help all of my children exist on the same planet without
someone else telling me (although isn't that why we are all here on
this list ? ) I wouldn't need as many professional therapists
because I would be able to access that information without them. In
1998 when she was 3 there was alot less awareness, alot less
information publicly available, alot less education for parents, and
frankly just alot less known about autism. I also wasn't 41 yrs old
and confident about my parenting ....I was 31 and not so sure I
wouldn't ruin my children without help! ;-)
Lisa B
-
> But why did you need to know? (That's a serious question, not a
> snarky one. What in society or your background or parenting book said
> "Children need to do x, y and z and those who aren't are lazy or
> otherwise being defiant." Were you locked into thinking there was a
> specific way she had to act and the only way you could get out of
> that course you were locked into was by permission of an expert who
> said "She's not typical"?
>
> Joyce
>
> [Non-text portions of this message have been removed]
>