The jargon. You are going to hear these names and terms all
around you. Get used to them and I hope I can at least give you a
rundown of what they mean...
Asperger’s is considered a Pervasive Developmental
Disorder (PDD) Disability is more friendly I think recorded in
the Diagnostic and Statistical Manual of
Mental Disorders. DSM-IV-TR®, a journal by the American Psychiatric
Association. The standardization of the conditions for
treatment/evaluation and formal diagnosis, etc.
If you really want
to examine and read all the info or the exact code for each
condition you may be able to find it at the library, or go to this
website
http://www.psychiatryonline.com/index.aspx
no guarantees and it costs a subscription to access the complete
data. It might be worth it if you want to go deep into it.
DSM-IV-TR® is a registered trademark of the American Psychiatric
Association.
First we must identify the "Spectrum" of autism. Much emphasis
will be placed references to the "spectrum" obviously it's a very
broad and not to exact area to examine. Hence the term spectrum.
However all of the conditions are interrelated one way or another.
You will also note the use of the puzzle piece associated with
Autism, again to me it suggests the interrelation and vastness of
it's complexities. Our children experience their world in a way that
is very rigid or has to be a certain way even if they can't tell you
that they need it that way-it's up to you to provide it for them and
let them work with in the structure-not a rule based world, just
predictable. It can quickly overwhelm them if it isn't. It's as if
they are like a puzzle and when things get too crazy for them
to cope or process it's like the puzzle is dumped on the table in a
big pile- it takes time and patience and a quiet setting to find a
place to start, sort the pieces, and then begin to fit them back
into place. The diagnosis is also a big jigsaw puzzle and everyday someone
finds a piece that connects and progress is made. Maybe today will
be your day to find a piece or two- give it a try. It basically
encompasses these disorders defined below:
A note about labels or labeling your child by way of diagnosis
or evaluations:
Some folks are dead against the labeling of their child as
Autistic, or any number of other diagnosis out there. They feel that
it places limits on the child. That is that the label itself or the
disclosure or acceptance of the label will somehow be the end all to
what their child will ever be or offers to others the opportunity to
make assumptions, judgments, and that is an invitation to injustice
to their child and perhaps to themselves as parents (get over that
one right now parents-if you feel you are less some how than parents
of "typical children than you need to work through it constructively
with a professional- you are all good people and stand tall). For
example, if I tell someone that my son is Asperger's chances are
slim that they have even heard of it, then I need to add- "it's a
form of Autism" then you see the light bulb go on. However, they
only know so much, they have opinions, or have formed a mental
picture in their mind about what "Autism " is or is like. Perhaps
they know someone, or have seen a movie, or a news piece or read an
article about some form of Autism...fact is there is no way of
knowing. You have taken a risk. You have though, opened a door to
understanding. Will this label or disclosure harm your child, will
it cause the people who now know this information about your child
only see your child in their minds understanding of the label?
maybe, maybe not. If your child is introduced as Autistic,
Asperger's or what have you... does that limit the potential of your
child to do, become, or reach any potential beyond the expectations
of others based on their understanding? WE HOPE NOT! If so move on
to a better place and dust them off you. We can only hope that in
some way the knowledge shared will better the understanding of the
condition, the label of those who are interacting with our children.
A label is something that can be a good thing. Think of it in terms
of your child's education...without a label your child will not
receive proper assistance, placements, additional services and
accommodations. If you have nothing on record even if it is a big
fat we don't know-but we think and we are going in for an evaluation
you are going to get some help. It is your choice, but I would
encourage you to talk to those whom are supporting your child, other
parents, and certainly your doctors and school staff for input
before you decide either way. Clear as mud? Lets move on...
Autism
A complex condition, autism is the most
commonly diagnosed pervasive developmental disorder. Autism impairs
a person’s ability to communicate, both verbally and non-verbally,
to form relationships and to interact with others. It also typically
results in a range of unusual and repetitive behaviors. A child with
autism may initially appear to develop normally, but then withdraw
and lose interest in others. Typically diagnosed by the time a child
is age 3 or 4, autism can vary from mild to severe. Autism is
frequently accompanied by mental retardation, but not always. In
many cases, patients will show uneven levels of intelligence with
highly developed talents in some areas.
Asperger Syndrome
Often confused with high-functioning autism,
Asperger Syndrome results in similar symptoms, but without the
delays in language or the possibility of mental retardation seen in
autism. Children with Asperger Syndrome often have impressive
vocabularies and sharp cognitive skills, but display serious
difficulties with social interaction. They may have an obsessive
interest in a particular topic and become preoccupied with
repetitive routines or behaviors. In addition, many children with
Asperger Syndrome have a history of developmental delays in motor
skills and display poor physical coordination.
Pervasive Developmental Disorder Not
Otherwise Specified (PDD-NOS)
Also known as "atypical autism," PDD-NOS is a
diagnosis given to children who exhibit some symptoms of autism or
other pervasive developmental disorder, but do not meet the specific
diagnostic criteria for any one disorder in particular. Children
with PDD-NOS generally have impaired social skills, problems with
verbal and non-verbal communication, and engage in highly repetitive
behaviors. In many cases, children initially given a diagnosis of
PDD-NOS are later confirmed to have an identifiable disorder.
Childhood Disintegrative Disorder (CDD)
Also known as Heller’s syndrome or regressive
autism, CDD occurs more frequently in boys but is also found among
girls. Children with CDD appear to develop normally in most areas
until 2 to 4 years of age. At that point, a marked regression
occurs, which may take place over a period of weeks or months.
Previously learned skills, such as toilet training, language and
social abilities, are lost. The child may stop speaking, become
disinterested in play, and develop other characteristics typical of
autism.
Rett Syndrome
Thought to be a genetic disorder, Rett Syndrome
is most commonly seen in females. The condition causes a steep
developmental regression in children after 6 to 18 months of age.
Until this time, many children appear to be developing normally, but
then begin to undergo rapid behavioral changes, including loss of
language, problems with balance, lack of interest in social
relationships, sleep abnormalities and extended tantrums. In
addition, the heads of children with Rett Syndrome fail to grow at a
normal rate and most patients with the condition have mental
retardation. Gradually they lose the purposeful use of their hands,
which leads to repetitive "hand washing" movements, perhaps the most
characteristic symptom of the disorder.
Related to the spectrum:
Fragile X Syndrome (A known link to
Autism yet can be very confusing to parents)
You will hear a lot about this one. The name
comes from the mutation of the genes on the "X" chromosomes carried
and passed by
either by the mother or the father. Some children have Autism like
traits, others do not. It is serious business either way. Their are
some distinguishing features in the palms of their hands, ears, or
faces and behaviors like hand flapping the child may exhibit
that help in diagnosis. There is also blood/DNA test that can
confirm the presence in your child of this condition. Now before you
run off crazy to get blood tests on a child that will no doubt be
traumatized by the event do your homework. Go to this site below. I
can't guarantee the content or if it's going to eat your computer or
not-however, the site provided me with a wealth of knowledge. I
suggest you check it out if you have reason to suspect.
The National Fragile X
Foundation's website
http://www.fragilex.org/html/home.shtml
"Co-Morbid" conditions : That means they are
occasionally found if one of the others is already present or could turn
up later on down the road. Like when puberty comes on watch out-
things get dicey for our Aspie's in that many of the problems get
worse, or new ones show up. Moods and rage, and general frustration
can work on them hard with all the hormones, and then be on the look
out for depression, isolation, pay close attention to who they are
associating with too. The amount of connection or
influence one has on another is arguable. Most parents are very
aware that the possibilities are there, the diagnosis can be
difficult, and research as well as professionals do not always make
the right calls. Parents need to do their homework before the jump
to assumptions and or blindly accept an opinion/diagnosis- remember
each child's case is unique- ask around-surf-pick everyone's brains.
Attention Deficit Disorder (ADD), Attention Deficit Hyper Activity Disorder
(ADHD)
Which in Aspie's usually is the 'Primarily
Inattentive' type -go figure as they are thinking about too many
things at once or something so complex, or uncomfortable, distracted
by stimuli from somewhere else that they can't stay tuned to save
their lives. This is not the extreme can't sit still, bounce off the walls,
thing that gets a bad rap on TV shows to draw a laugh or as an
insult, it's the old Aspie cannot focus on what you want me to
do and I am losing my grip here "help me". I need to tune out some stuff, take
a break and regroup or move someplace else to do this..make sense?)
NOTE: Recently the recording of these
two diagnosis has been changed. They are now combined into one
record of ADHD. What does this mean? Rather than the separations
of/or distinguishing between the two your child will be evaluated
under the topical heading/category of ADHD and then given a
designator like "Predominantly Inattentive". This is important for
Aspie's as we all know our children generally do not display the ADD or the
"H" factor of hyperactivity associated with this (these)
conditions/diagnosis not related to Autism. ADD/ADHD kids are
dealing with a different set of influences. They are severely
handicapped by the inability to focus based on
chemical/neurological, or other reasons. Aspie's are shown to have a deficit in attention due
to impaired processing, over stimulation, or
underdeveloped/slow/lack of executive functions
(when you can't find what you are looking for in your mind/calling
back from memory, doing things with numerous or complicated steps,
and or looking for various solutions to the same problem, or
thinking ahead to what should I do in this situation or when a
situation changes rapidly in a direction of unfamiliar territory). We know
that our children are not fidgeting, can sit still, and do
not have little ability to maintain the impulse to get up and move
around when they are not supposed to e.g. when they are in a
classroom seated as typical ADD/ ADHD kids might do. It is a matter
of stimulus, environment, and many other things going on with the
Aspie that causes the behaviors or inability to cope, or freak out.
It's different. Your Pediatric
Neuropsychologists will be able to explain this to you or perhaps
your school ASD specialist/psychologist too.
Changes to recording evaluations affect your
child's over all IQ as well- take note that standards have changed
there too- as the Cognitive piece is now factored in to the overall
score and if like most Asperger children your child scores low in
areas of cognitive abilities, the score will be lower than the
measure of general intelligence. It just looks bad, it makes you
think if your child scores in the low average area that people will
think adversely about your child. It makes you feel like crying, and
a host of other ill feeling will rush you and educators can come off
callus sometimes when analyzing the numbers...let it be there is no
sense in fighting it, just know that your child is more than what
the numbers show. Each Aspie is different. Each one as much as
they're alike are individuals and will have different strengths and
weaknesses. so just again, discuss this with the professionals and
don't panic. It stinks that it was changed however that is just the
way it goes.
Tourette Syndrome (hard for Dr.s to
distinguish Autism related sounds and movements from this condition,
but there are those that can. Be alert for this in your Aspie!)
At any developmental age (except adulthood).
P.A.N.D.A.S.(
Pediatric Autoimmune Neuropsychiatric
Disorders Associated with Streptococcal Infections)
in some cases this has been seen in an Autistic child when exposed
to the Strep virus and gets sick and then suddenly develops
drastically noticeable Tourette's effects (you know severe tic's,
and jerks, and sounds, associated with it). Some kids have had
severe reactions/changes, other have mild yet significant changes.
Don't panic - but do look into the information about Strep vs. onset
of Tourette's at this website: This is the mother load on Tourette
Syndrome. You can find answers to every question here.
Tourette
Syndrome Plus - Home Page
http://www.tourettesyndrome.net/index.htm
Ok, so what does this stuff mean?
Primarily we know Asperger’s Syndrome or what used to be called
Asperger’s Disorder, to be in the high functioning level of the
Autistic Spectrum. The ‘Spectrum’ encompasses all of the six (PDD)
disabilities and much, much more. Meaning there seems to be similar
traits across the margins of all of categories, conditions, or types
if you will related by way of Autism traits. The range from High
Functioning Autism (HFA) to low functioning Autism is pretty visible
by comparison. At any rate Asperger’s is at the high end of the scale while
the lower functioning end of the scale would be someone whom is
non-verbal (doesn't speak or speak coherently) is not capable of
individual tasks like using the toilet, feeding themselves etc. you
get the picture. You also understand that Aspie's are capable
of doing the ‘normal’ things we all do to take care of ourselves
every day. We are talking about AS here so I’ll stick to that,
however I would
encourage you to spend a little time with some of the people on the
lower end either by visiting with them or videos (not the guy who
goes to Vegas with his brother), or what ever so you can see the
similarities along the spectrum and get a full understanding of why
your child may behave a certain way, have what seem to be habits, physical
motions, or sounds (tic's are related to Tourette's Syndrome, which
is discussed elsewhere) and extreme sensitivities to stimulation
like touch, hearing, light.
Where did the name Asperger’s come from?
Hans Asperger in Vienna back in 1944 (hence the name) and another
guy Leo Kanner also from Vienna, both found these groups of
children, boys who had these unusual traits and shared the same
social interaction problems, etc. they called them “Autistic
Psychopathy” Labeling them with a personality disorder. Anyway Asperger’s took hold with professionals in
America around the early 1980’s when Lorna Wing used the term/name Asperger’s
Disorder to describe the condition in "Asperger Syndrome: A Clinical
Account". Due to the hard work and dedication of these individuals,
we today realize much emphasis
placed on early childhood screening and awareness of developmental
issues in our children. We are moving toward great understanding of
the Autistic Spectrum and Asperger’s Syndrome.
Everyone should read Tony
Attwood’s book: "Asperger’s Syndrome, A Guide for Parents and
Professionals" (1998). His work has taken the understanding of
Asperger's to new heights of understanding.
The safe spot
This is a little strange to typical people to grasp we aspiedad's have
seen it and most of us accept it in our children. I knew a boy who would hide under a blanket
in the middle of a room and pretend he was a rock. When he was a rock he
was safe under his blanket from the outside, yet he was still able to
listen and be connected to what was going on around him. People would
speak to him and he back. Eventually, he would come out and go back to his
business. Many Aspie's like a secluded spot, a
roost/perch as one boy called it, another his club or fort or base or a safe house. I don’t know why
they just kind of instinctively find a place to remove themselves from
the perceived chaos around them. I
have met many parents that have relayed their child likes to be alone
for a while, and others that need a place to hide out for a while, or
won’t eat at the table with the rest of the family. The Aspie may feel
like it’s too much commotion or for any number of reasons. They can feel uncomfortable because they will only eat
a certain type of food (texture and taste/temp sensory issues) and maybe
its different from what the family or their siblings are being served.
Some kids will get stuck on eating one certain thing over and over again
-every meal. We parents can go insane over it. We can't have them eating
some junkie cereal or what ever stuck for the rest of their life... Mind
you this is a different kind of attachment than the typical child's
choice to eat something for every meal or at what most would think
inappropriate times for these choices. You know like pizza for breakfast
and cereal for dinner. You have to think outside the box here- these
kids are not making the choice for the heck of it they are making the
choice for survival, this takes the fun out of it, it takes the "picky
eater" label way beyond the average kid that won't eat green beans. The
Autism side influences them beyond their own inherent needs for taste,
texture, temperature and to some extent once all those criteria have
been met the child just stays with the choice, the thought of trying
something new and going through all the evaluation or potential
unpleasantries is often overwhelming. It get really complicated and
uncomfortable if you as a parent try to force or deny or perhaps
introduce something new in the midst of the family dinner table. You
have just created a sideshow event for the siblings and placed your
Aspie in a very vulnerable place. Don't do it. Take your time bring your
Aspie under your wing and be patient.
The point is this kids develop/feel safe attachments to things like
their menu choice that finally felt right to them or the place they can
go to be free of the attacks to their senses, or self-image. It seems
obvious that if your child likes to hide, crawls into a cardboard box
for a while, the closet or under the bed
that would indicate that your child needs to have a safe spot Their own
spot not the community fort in the back yard or something like that-it
has to be their own. Most Aspie's are very territorial and demand
respect for their space and their things. Do yourself a favor and stick
that note on the fridge right now. It will save you much trouble and
respecting the Aspie's need to decompress is a priority to building a
foundation for their entire life. consider it a time
out for good behavior spot with books and a reading light they like, or
something to do besides a video game, but do whatever works and make it
cool for them- have them help or wait until they are at school to make
the changes to their room just make sure the job is complete
before they come home or you will have created a bigger problem by
forcing them to process the fact that everything is a mess, and that
their stuff has been touched/moved. To the Aspie it's nothing less than
a total disaster and you are to blame for it- not mother nature
in the form of a tornado don't go there. Just give this idea a try. My son thrives on his space, and
his privacy and will go off to his spot and come out when he is ready,
sometimes he takes a walkie–talkie with him to his room and closes the
door to do his thing and will talk to me via the talkie and it’s cool,
we chat, we are connected even though we are on opposite ends of the
house. He comes out when he is ready and we just go with the flow. I
cannot force him to be social. I encourage him at every opportunity, but
I do not force it on him. I don’t care what anyone thinks about walkie's
or forts, or eating under the table or in a tree for that matter. If
that makes him happy and he eats!!!! I know it works for my
son and that's good enough for me. Welcome to the outside of the
box...it's not bad out here once you tune out the crap from the people
who don't understand it all.
How Aspie’s react to changes
Aspie’s generally do not like changes to schedule, or routines they have
come to be accept and be comfortable with. Things like rearranging the
furniture especially in their room or work space or changes to the
routine of getting up and out the door each morning, or in some cases it
may be the clothes they wear. They become comfortable with the structure
of sameness day after day, it’s predictable and requires less processing
to manage the details. When you make changes to their environment such
as rearranging their room layout or furniture or even a change to what
is in a drawer this can be upsetting. An Aspie generally prefers order
and rigid conform to their way. This can be a problem for parents to
understand as we encourage them to explore new things, or insist they
cannot wear the same clothes they had on yesterday. Some children or
adults for that matter may be very comfortable with a set of clothes
identical for each day of the week. It simply requires less variables
and allows them freedom from the burden of choices or decisions as to
what would be appropriate. Complicated or peculiar as it may seem to
‘typical’ people this sort of thing is very common.
If you are going to make changes to your child’s routine, make them
clear to them and perhaps even post them someplace for them so they can
refresh their memory. Start them slowly and consistently on habits and
routines that are predictable and acceptable whereby teaching/training
them the basics that will become the way they operate for the years
ahead.
If you change their environment at home etc. I suggest doing it in
subtle ways, you may have a broad scheme you want to apply to their
environment but take a piece at a time as this will be easier for them
to process.
Although some parents are able to do the one swoop change to an
environment and their child can process and handle that also. You will
have to evaluate your situation and experiment with what ever works.
They appear just as any ‘normal’ child would, when they speak is
usually when you will first realize a difference. The
characteristics are generally the same with in each child affected.
There are subtle differences in each child. For the most part these
children are bright, extremely intelligent, quite logical and
literal in their thinking, capable of amazing creativity and
literary or scientific reasoning, speaking in heavy details about a
particular subject or subjects they are interested in sharing with
others. They thrive on routines and predictable situations, and in
general dislike surprises. Most are honest to a fault, blunt in most
cases, seemingly bored by idle conversation, specifics are required
when asking their opinions. They love to dance, play games, make
music, sing, and do just about everything ’typical’ children want to
do. Most will avoid team and contact type sports. They are horrible
at reading peoples body language, facial expressions, and what is
called social-conversational cues ( knowing when to shut up and
listen, and when to say something to keep a conversation going, and
when someone asks how are you? They really don’t want an overview of
your entire respiratory systems functional status today, asking is
just a courtesy that humans do when greeting someone) Aspie's don’t
understand this with out much coaching and practice.
These children are primarily boys, and more often than not there
is a hereditary link to someone in their family with similar traits.
This can be so obvious it hits you in a second or is a hard one to
nail down. Thoughts are rapidly changing from generation to
generation and what we perceive as AS today might have been viewed
years ago as eccentric, ‘gifted’, or quiet, a loner, or worst yet as
‘something wrong with them’ to be isolated from the rest of the
world for what ever reason. Most people just view anyone outside of
‘normal’ as less than them in some way, or something to fear, or
stay away from as if it lessens them to associate with them. Some
people find sport in exploiting another's differences these people
come in all sizes and ages, they are predatory personalities.( you
can find these types among the inhabitants of an EBD
(emotional/Behavioral/dysfunction-disorder) classroom in a special
ed environment- Keep your child as far away from these people as
possible.
The AS world is a wonderful place and a nightmare all at the same
time. Most have extremely sensitive hearing, and taste senses.
Smells can be unbearable and touch can evoke a startling reaction
due to hypersensitivity. This can be perceived as a burden or an
exceptional trait depending upon how the child is interacted with
and their environment for learning self awareness and interaction
skills. Emotional development is slow. Most children are behind
their peers significantly and they do not have the ability in most
cases to naturally pick up or learn from their role models examples’
of social structures and techniques of conversation that ‘typical’
children do. You have to teach them all of this. Again, they are
vulnerable to peer brutality if you don’t.
The environment they learn in and having a safe place at home to be
free to grow or just crawl into for a while to relax is crucial to
survival. Safety from ridicule and over stimulation of the senses
needs to be priority one, then you can work on the important tasks
at hand.
Delayed Processing/delayed cognitive skills: This one will
keep you guessing too...the delayed part means that the child is
delayed in developing the ability or skill or function of the
brain/process- ok we got that part...now what does this mean in
language we can understand...well here's my thoughts on it:
Let's think about it this way, your child can process
information, it may take a while but, they can. They can think and
rationalize and pull it all together like any one else can, but
here's the catch...it works on a 20 to 30 second delay. This is how
my guy works for the most part. He can take in all kinds of data
coming at him, you know all the stuff I've been talking about here
and there, he has trouble with sorting and deciding what to process
first (process like what needs to be done, or what to say, or what
not to do or say- even where to begin a task...all these things are
what makes up processing in a nut shell) Now he has a task or let's
say a question is put to him like, are you hungry? tic toc tic toc
the gears are activated - he is chewing on the question, searching
his vast corners of his mind and working hard to sort the list of
possible meanings, interpretations, possible answers, and perhaps
has even considered posing a question of his own back like what do
you have? got it? simple stuff for everyone else in the NT world to
do- they fly at light speed to arrive at a fast reply, and are
already thinking ahead someplace...the time element or the time
needed to process for an aspie like my guy is crucial to
him...someone can seriously throw a wrench into the works by doing
what everyone does without even thinking about the possibility of
delays, and asks another question or rephrases the first, or worse
yet offer options or menu choices...now what? Well you have just
shut the system down- you have locked it up. The Aspie is now having
to start the whole process over again due to impatience by the other
person's part in the interaction. Frustration mounts in both of you
and your Aspie loses.
What now? here is the only way around it I know- train yourself
to wait. Wait a 20-30 count before you utter a sound, don't fidget,
don't huff, or look at your watch...stop that right now and wait.
Give your Aspie time to process...you will be amazed at what you get
in return. Do this every time you interact. Wait. Now sometimes my
child just can keep up and go with the flow of conversation and it
moves faster than that. However, I know if there are other things
going on, or a complex task at hand or an abstract concept
(something far out to think about) that he has to sort and process
he will need the extra time. We want to jump in and finish
sentences, and to move the conversation along because typical people
do that, they are in a hurry and they need to know something right
now- if a child, especially a child with a known disability is
taking a long pause we assume they are lost or need a push or some
kind of candy coated rephrase of the exact information or request
just made and then we lose the Aspie. They are back at square one
and /or they give up on you because you answered the questions for
yourself, and eventually you have got it all wrong. Now the Aspie is
mad, irritated because you couldn't shut up and let them
think, and will generally become frustrated by the entire
interaction. What have you got then? Nothing more than a mess
that could have been avoided.
Do yourself and your Aspie a favor and try this exercise- ask a
question and wait a count of 20-30 and then go from there. Heck try
it on a typical person and watch how uncomfortable it makes them
feel...they will go crazy wondering what, how, and why there is such
a big pause, they will race to conclusions, they will attempt any
number of things to get you tuned to their speed- they might even
ask if you are ok...ha! give it a try. You'll see...it works
for your Aspie.
Asperger’s is a form of Autism, Pervasive means your born this way
and it won’t just go away or may get worse. AS IS NOT LIFE
THREATENING. But in some cases DEPRESSION AND OTHER ISSUES
COMPOUNDED BY/OR CO-MORBID TO AS HAVE HAD AWFUL SITUATIONS OCCUR and
you must PAY ATTENTION TO YOUR CHILD'S EMOTIONAL HEALTH. I think you
understand that a child with a disability is more prone to develop
low self esteem, self loathing, and feelings of isolation, SUICIDE
and many other complications brought on by being ‘different’ beyond
hair or eye color or choice of shoes, kids are brutal to one
another, remember your experiences as a child or teen...were you
ever picked on or did you do some picking on? Put yourself in their
shoe’s- view the world around them and experience their peer
interactions, see how the other kids perceive your child, how do the
adults they interact with perceive them, how does your child
perceive them? Do they feel like they are constantly failing at
something? Are they trying really hard to keep it together at school
amidst all the chaos and over stimulation, and the bully? They could
snap, and hurt themselves, or someone else if it all piles up and
they have no one or place to vent or work through their
frustrations- if this area is something they are struggling with.
This is common among ’typical’ children and teens. This is a key
step to understanding your child, your Aspie. DO WHAT EVER IT TAKES
TO TUNE IN TO THEIR LIFE at their eye level and their emotional
ability level.
Now what?
Don’t panic. This all comes naturally if you stick with it and open
your mind to the frequency of Asperger’s. Step back from it
frequently and relax...take care of yourself/give your spouse a
break also- this will go far in terms of recharging the both of you.
Do what ever you can to educate your child's other family members,
extended family, grandparents etc. loan them books and talk about
it. Try to be forgiving as others are likely not to understand how a
‘normal’ looking kid can have any problems. You might even
experience older generations that will insist or imply that some how
the child just needs discipline or you may feel like you are failing
in some way– DROP THAT POTATO NOW… You are right and you are doing
fine. You are the only one who knows your child well enough to make
the calls.
Depending on were on the spectrum they are, how Aspie’s experience
formative years of life, and who they interact with can teach an AS
child or teen (sometimes the school of hard knocks) survival skills.
Some are quite successful. They work and have been through advanced
education. They can be superior in their field, or at a loss how to
function without assisted living. Some are perfectly suited for the
world outside of their sheltered existence others are lost. Many
adult Aspie's are unaware of the presence of the diagnosis while
others have discovered it through their own children or a loved
one's discovery of the traits and presenting it to them. Last data I
read was 25% of AS adults were self sufficient. That's alarming from
a parents perspective, however we know much more about it now and
the support is greater. I think the odds are much better now for our
children. So then those 25% how did they do it, and what about the
rest? They can adapt and learn how to handle the world and
interactions with others to adulthood. Some may be reclusive
avoiding interactions and/or complicated social situations, or
have learned to associate situations with painful emotions, thus
they simply avoid it all and shut themselves out. It is commonly
known that Aspie's in general do not care much for idle chit-chat
(how are you today? or what did you think of that?) . Some dislike
it seeing it as a nuisance lacking a point of interest they are
focused on. Others avoid it as they have had bad experiences of
misperception of the questions intent as they begin dissertations-
the all too familiar sharing too much information, leaving typicals'
desperate for an exit strategy and the Aspie feeling like an idiot,
or a range of emotions associated with self-loathing, dislike for
that shallow person e.g. after all why did they ask if they weren't
interested in the first place. This opens to ridicule,
embarrassment, or "weird or strange" perception to labeling by peers/others. The social
outcast emerges. This can impose severe limitations in life, let
alone in an office
setting, all the chit-chat that takes place around water coolers or
lunch tables. The relative safety of the cubescape is not enough. One of the major
struggles for an Aspie is to read the social conversational cues.
You can see where such an obstacle could cause one after years of
failed attempts at these types of interactions lack of
willingness to participate. Once again, the ability to interact on
this interpersonal level depends largely on training and
constructive methods of role play, deeper understanding, positive
modeling as we know all kids mimic what they see-so do Aspie's maybe
even more so or at least they are more tuned into it for what it is
in an analytical sense, and of
course the Aspie needs to accept that he/she is capable of
interacting. With training they can do it. They can
navigate the typical field and do ok. The tragic side of the
absence of self-awareness and social skill training is that some may have turned to drugs, or alcohol, or other ways.
Dangerous short-sighted ways to escape
themselves or exaggerated means to fit in someplace.
Consider the accepted stereotype of the virtuoso, artist or
genius/eccentric is associated and often portrayed as having
horrible people skills, depression, addictions, terrible swings in
moods, not stopping to eat or bathe when consumed by an area of
interest. Some can be very successful and others can be totally lost
or sheltered. AS people are all of these and more. It all rests on self-awareness training, time, and trust once early
discovery/intervention happens, nurturing, and the individuals
ability to cope. Positive results come from positive approaches.
Hands on guidance, and much support.
Stay with me on this one, consider that your child is seated in a
classroom of 20 or so other children who are all buzzing along. A
teacher is going on about something the room is hot or cold, the
sun is shinning in their eyes, or the florescent lights flicker or
make noise, the chair squeaks, something smells funny, their finger
hurts from holding a pencil, the stupid tag in their shirt is
scratching them on the back of the neck, and one of the kids they are
trying to avoid that picks on him or her is looking at them and
making a stupid face or a noise that drives them crazy, lunch didn’t
get eaten because it was something disgusting or too hot and then
they are told to hurry and finish up so the class can move on to
something different or go to another room. This is a lot for any
‘typical’ kid to handle. But they seem to do it effortlessly. They
bounce onto the next task easily.
Now complicate the whole situation with Asperger’s traits of
hypersensitivity to sounds, smells, touch, lighting, and trouble
processing /managing input. Struggles with perception of social
interaction (You know stuff like when you have to think why is
that person staring at me or what did they mean by that
or having the answer to the first question and being asked a second
almost immediately-now having to think about the second question and
being confused as to which one to answer first and handling multiple tasks and stimulation
to the senses all at the same time) and is being told to hurry up
and given a new set of circumstances and environmental changes to
consider. This is moving pretty fast for an Aspie at this point.
risk is high for problems in the form of behavior, or plain old
stress, and anxiety related issues stacking up- building up.
Think of your child’s mind like a computer (I know there's a
theory on this notion out there someplace, and it seems obvious to
me when related to Asperger’s) they store stuff away and categorize
it into topics and files upon files of data stored away and then
drawn out when they need it. ‘Processing’ is part of this
function when the mind takes in stimuli( that all the stuff coming
at them through the 5 senses) and then filtering it, sorting it,
prioritizing it and reacting to what needs reacting too, and finally
storing what needs to be stored make sense? Dendrites I think
you call this process of calling back from memory, but anyway, an
Aspie can do this however, it takes much effort and concentration.
For an Aspie to have all this other stuff going on at the same time
it gets over whelming and something has to give or shut down to
apply effort to another area.
Consider all of this stuff that
‘typical’ people do with very little effort is just too much for
your child… They don't know what is how to filter, they don't know
how to sort and they sure don't understand how to react. Most of
these kids some say do not have the capability to do it. They "lack
the skills to interact socially" get it? Now when your child
has no ability to do any of this sorting and so forth, what are they
going to do with all of this information or flood to the senses and
someone telling them to hurry up? I'll tell you if you haven't
experienced it yet for your self, it will get your attention and you
will feel helpless and depending on where you are when this happens
this "over-stimulation "to your child you will wish to the stars you
had a magic wand or were someone else. Rumblings are what most call
them when your child is about to blow.
The volcano of emotion and frustration is coming, tremors from
deep with in your child start. He/she will bite your head off, or
start to get really antsie (that's Minnesotan for anxious and
starting to wiggle around or not sit still) and sometimes reply to
questions with "I don't know" or growl something at you in
frustration...you get the makings of what is called a
‘melt-down’ a
massive outburst of emotion, and frustration, and anger at who or
what is causing the overload or just what or whomever is in front of
them at that moment. Bad. Everything must be done to avoid
these situations and if your child is ‘acting out’ like this then
you need to halt the ride and get them off. Escape plan 'B' goes
into effect right now. You leave the situation to a safe spot. You
drop whatever you are doing, you leave the full shopping cart, or
the carnival to someplace free of input, free of staring eyes, and
stupid comments. Your child needs to stop and think to process. You
are gonna get the brunt of it. Your child will be irrational, and
probably will have no idea what they are saying or doing at the time
and most likely will have no memory of what started it or what
followed it. They will just come out of it when things come back
into focus or they get a grip on their emotions again. Your job is
to insure first this doesn't happen in the first place by not
putting them in a place where this vulnerability is attacked or
loaded, and by doing everything you can to help your Aspie all day
long to sort and filter and process everything until they can learn
how to monitor themselves, or know when they are getting overloaded
- which is called the ability to self-regulate/self-advocate. You
have to teach them this. You will need tools like little cards they
can carry that resemble thermometers, or stop lights with
red-yellow-green to represent the way they are feeling, or amount of
frustration they are feeling. Eventually they will get it you just
need to keep adapting or re-doing it for them as their skills
develop. Go back now to the drawing
board and rethink the structure and environment of your child's
home life, educational or social situation exposure/interactions.
The shopping bag analogy (Came up with this on my own)
Now imagine if you will that your child who has to have time to
process and make transitions to new areas and all the tasks that
goes along with it is carrying a big shopping bag with them in their
mind) and into this bag they put things as they go along through out
their day, tasks, thoughts, questions, smells, sounds, facial
expressions of others, tones of voice, requests, emotions, and that
stupid tag on their shirt, all of this and more...this big bag is a
holding area for stuff they are presented with and when they get
time they will sort through it and put it where it belongs (in
storage as mentioned before) but at some point this bag is full, it
might rip and spill out it’s contents all over the place look out!,
or it will need to be emptied to be filled up again.
I know this is a reach but I think the Aspie brain is more like this
bag thing and I see our job as to teach our child what is important
to put in the bag and what isn’t. What should be processed for
action right away and what can wait for later and where to put it
when they store it, so they can find it later. If the bag rips and
spills we have ‘melt down’. I’ll say it again, if they have a place
to go and sort through it with help and free of more stimulation
they just roll along.
The more we do to teach them these things and support it with self
awareness to recognize when the bag is getting full and they need to
process it to avoid an accident we have just taken our child to new
heights of success.
Education: the ups and downs
and a few in-between's...
The basics
First you need to understand the nut's and bolts of it all. Here is
some of what my state of Minnesota set out as law for ASD and some of
the Special Education realm as it pertains to our Aspie's. You should
check your state, areas of the globe for public record of laws and
statutes etc. on the books. You need to know this stuff to stand up.
sorry this got wide-I have to close my favorite window to free-scroll on
this page.
3525.1325 AUTISM SPECTRUM DISORDERS (ASD).
Subpart 1. Definition. "Autism spectrum disorders (ASD)"
means a range of pervasive developmental disorders, with onset
in childhood, that adversely affect a pupil's functioning and
result in the need for special education instruction and related
services. ASD is a disability category characterized by an
uneven developmental profile and a pattern of qualitative
impairments in several areas of development, including social
interaction, communication, or the presence of restricted,
repetitive, and stereotyped patterns of behavior, interests, and
activities. These core features may present themselves in a
wide variety of combinations that range from mild to severe, and
the number of behavioral indicators present may vary. ASD may
include Autistic Disorder, Childhood Autism, Atypical Autism,
Pervasive Developmental Disorder Not Otherwise Specified,
Asperger's Disorder, or other related pervasive developmental
disorders.
Subp. 2. [Repealed, 24 SR 1799]
Subp. 3. Criteria. A multidisciplinary team shall
determine that pupil is eligible and in need of special
education instruction and related services if the pupil meets
the criteria in items A and B.
A determination of eligibility
must be supported by information collected from multiple
settings and sources.
A. An educational evaluation must address all three
core features in subitems (1) to (3).
The team must document
that the pupil demonstrates patterns of behavior described in at
least two of these subitems, one of which must be subitem (1).
The behavioral indicators demonstrated must be atypical for
the pupil's developmental level.
The team shall document
behavioral indicators through at least two of these methods:
structured interviews with parents,
autism checklists,
communication and developmental rating scales,
functional
behavior assessments, application of
diagnostic criteria from
the current Diagnostic and Statistical Manual (DSM), informal
and standardized evaluation instruments, or
intellectual testing.
(1) Qualitative impairment in social interaction,
as documented by two or more behavioral indicators, for
example: limited joint attention and limited use of facial
expressions directed toward others; does not show or bring
things to others to indicate an interest in the activity;
demonstrates difficulties in relating to people, objects, and
events; a gross impairment in ability to make and keep friends;
significant vulnerability and safety issues due to social
naivete; may appear to prefer isolated or solitary activities;
misinterprets others' behaviors and social cues.
(2) Qualitative impairment in communication, as
documented by one or more behavioral indicators, for example:
not using finger to point or request; using others' hand or body
as a tool; showing lack of spontaneous imitations or lack of
varied imaginative play; absence or delay of spoken language;
limited understanding and use of nonverbal communication skills
such as gestures, facial expressions, or voice tone; odd
production of speech including intonation, volume, rhythm, or
rate; repetitive or idiosyncratic language or inability to
initiate or maintain a conversation when speech is present.
(3) Restricted, repetitive, or stereotyped
patterns of behavior, interest, and activities, as documented by
one or more behavioral indicators, for example:
insistence on
following routines or rituals; demonstrating distress or
resistance to changes in activity; repetitive hand or finger
mannerism; lack of true imaginative play versus reenactment;
overreaction or under-reaction to sensory stimuli; rigid or
rule-bound thinking; an intense, focused preoccupation with a
limited range of play, interests, or conversation topics.
B. The team shall document and summarize in an
evaluation report that ASD adversely affects a pupil's
performance and that the pupil is in need of special education
instruction and related services. Documentation must include:
(1) an evaluation of the pupil's present levels
of performance and educational needs in each of the core
features identified by the team in item A. In addition, the
team must consider all other
areas of educational concern
related to the suspected disability;
(2) observations of the pupil in two different
settings, on two different days; and
(3) a summary of the pupil's developmental
history and behavior patterns.
Subp. 4. Team membership. The team determining
eligibility and educational programming
must include at least
one professional with experience and expertise in the area of
ASD due to the complexity of this disability and the specialized
intervention methods. The team
must include a school
professional knowledgeable of the range of possible special
education eligibility criteria.
Subp. 5. Implementation. Pupils with various educational
profiles and related clinical diagnoses may meet the criteria of
ASD under subpart 3. However, a
clinical or medical
diagnosis
is not required for a pupil to be eligible for special education
services, and even with a clinical or medical diagnosis, a
pupil
must meet the criteria in subpart 3 to be eligible.
STAT AUTH: MS s 14.389; 120.17; L 1999 c 123 s 19,20
HIST: 16 SR 1543; L 1998 c 397 art 11 s 3; 24 SR 1799; 26 SR 657
Current as of 01/31/05
125A.57 Definition.
Subdivision 1. Applicability. For the purposes of
sections 125A.57 to 125A.60, the following terms have the
meanings given them.
Subd. 2. Assistive technology device. "Assistive
technology device" means any item, piece of equipment, software,
or product system, whether acquired commercially off the shelf,
modified, or customized, that is used to increase, maintain, or
improve functional capabilities of children with disabilities.
HIST: 1996 c 412 art 3 s 6; 1998 c 397 art 2 s 164; art 11 s 3
Copyright 2005 by the Office of Revisor of Statutes, State of
Minnesota.
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The label
A note about labels or labeling your child by way of diagnosis
or evaluations:
Some folks are dead against the labeling of their child as
Autistic, or any number of other diagnosis out there. They feel that
it places limits on the child. That is that the label itself or the
disclosure or acceptance of the label will somehow be the end all to
what their child will ever be or offers to others the opportunity to
make assumptions, judgments, and that is an invitation to injustice
to their child and perhaps to themselves as parents (get over that
one right now parents-if you feel you are less some how than parents
of "typical children than you need to work through it constructively
with a professional- you are all good people and stand tall).
For
example, if I tell someone that my son is Asperger's chances are
slim that they have even heard of it, then I need to add- "it's a
form of Autism" then you see the light bulb go on. However, they
only know so much, they have opinions, or have formed a mental
picture in their mind about what "Autism " is or is like. Perhaps
they know someone, or have seen a movie, or a news piece or read an
article about some form of Autism...fact is there is no way of
knowing. You have taken a risk. You have though, opened a door to
understanding. Will this label or disclosure harm your child, will
it cause the people who now know this information about your child
only see your child in their minds understanding of the label?
maybe, maybe not. If your child is introduced as Autistic,
Asperger's or what have you... does that limit the potential of your
child to do, become, or reach any potential beyond the expectations
of others based on their understanding? WE HOPE NOT! If so move on
to a better place and dust them off you. We can only hope that in
some way the knowledge shared will better the understanding of the
condition, the label of those who are interacting with our children.
A label is something that can be a good thing.
Think of it in terms
of your child's education...without a label your child will not
receive proper assistance, placements, additional services and
accommodations. If you have nothing on record even if it is a big
fat we don't know-but we think and we are going in for an evaluation
you are going to get some help. It is your choice, but I would
encourage you to talk to those whom are supporting your child, other
parents, and certainly your doctors and school staff for input
before you decide either way. Clear as mud? Lets move on...
Common Special Education
terms and acronymsYou are going to hear these names
and terms all around you. Get used to them and I hope I can at least
give you a rundown of what they mean...
Center-based programs and
support services
Center-based means a program with in the school set out to serve a
specific group of children's educational needs. Special education comes
in many forms. Programs such as, learning disabilities, or SLD "specific
learning disability" like for math, spelling/vocabulary etc.
services do not always fall under the heading of center-based. This
refers to a classroom set out and comprised of a group of students with
basically the same needs, diagnosis, etc. For example: CIP/CID
Communication Impairment/integration Program or disorder. where you will
find most of the autistic spectrum kids. There are center-based programs
for EBD "Emotional Behavioral disorder" these are the kids that do not
fall into the ASD Autistic Spectrum disorders and have mild to severe
emotional behavioral issues. They may act out violently at times, they
may have a history of run ins with the law( yes at age 3-6-7-10 they can
have records), hurting themselves, or
others, self-destructive patterns, and/or dangerous tendencies. They can
be predators at any age too...keep your Aspie as far away from these
kids as possible. Your Aspie may act out, he/she may hit their head when
they are frustrated or do something that could hurt or shock another
student, they are not doing it because it makes them feel better or
because it is fun for them...get the difference? They are doing it
because their environment is not working for them due to over
stimulation and social misperceptions. (I don't mean to give all EBD
kids a bad wrap here it's just a major concern to keep your Aspie away
from them ok?)
It is a line drawn in the sand as to whether Center-based or
mainstream participation is best. Inclusion of your child in either of
the settings can have drawbacks. By and large I personally lean toward
the center-based environment for my child. I would rather have my child
reach the top of the class in center-based than at the bottom of the
food chain in mainstream and the wheels coming off every day, or my
Aspie getting set up/duped/egged on -what ever you call it, or bullied,
or a whole host of crap that is discussed other places here- You will need to decide what
is best for yours by examining the dynamics of what is offered and then
applying it to your child's individual needs. As alike as our Aspie's
are they are as much different. It all depends on what your family is
like, your values, your abilities as a parent to manage it all, and what
support services you can have in place to get your child what they need
in terms of surviving and moving forward in the education environments.
Not all districts will offer a center-based program either. Not all
center-based programs separate the diagnosis in terms of building a
cohesive, safe, and/or functional environment with in the classroom. You
can have a mixed bag of diagnosed and undiagnosed. You can get a case
management structure that will bury a teacher so fast and then you have
lost major ground in a mater of months. There are no classrooms for
example in my district that are all bonafid Asperger's classrooms. I get
a mixed soup of everything that does not fit clearly anywhere else. This
is a real challenge and a daily dose of Dad therapy session to help my
Aspie decode all the dynamics of personality etc he has to contend with
all day long. Schools cannot tell you who is what, they cannot share
with you what they think, they have to talk in loose terms and
references and no names, and half of the time the staff is just treading
water each day with these kids. It can take months to get a class reeled
in, it can take a week to lose an Aspie due to lack of interest or
numerous misunderstandings and misperceptions of social interactions. It
is really a hard thing to manage. But again-I think it boils down to the
relationship and the willingness of staff to work with you as a parent
to make it all work.
Support services:
Inclusion, mainstreaming, and
socialization/peer interactions
Stay tuned here I have a lot to say on this one...coming soon.
Therapeutic or informative? that is the question...How much
information is too much...how many questions are too many...when is it
micro managing and when is it being involved? I will need
some time to put this into the light for you all. Stay tuned here also.
The truth about school, teachers, and staff
(yet another topic that gets mixed reviews, expect to
ruffle feathers from no matter what side of the fence your standing).
Where to begin...how about we just start with the truth as
painful as it is sometimes...the truths about educating your child
with Asperger's Syndrome. Are you ready? Here's what I know about my
experiences wrestling with the monster: My own son started Special
Education (SpEd) in the 1st grade. I was lost and some days I am
still lost when it comes to the mysteries of how the education
systems work in my area.
Often I was welcomed into the folds by caring teachers, and other
support professionals. Other times I have been flat out dismissed,
rudely in some cases, humiliated, and redirected under the
impression that I was just another stupid parent poking into the
business of education where I aught not go. I felt many times that
my place was clearly defined to be with the other stupid parents to
stay behind the yellow paint on the curb in front of the school
where countless other stupid parents hastily rush in driving huge
SUV's, talking on cell phones, and pouring what was left of
yesterday's latte out of the window while waiting in the line
up to dump their kids in the drop off zone near the front doors.
It is a site to behold in my area. The parents battle for spots,
they dart in and out, they cut each other off to get to the landing
zone fast and get out of there. I watch many a day this mess from my
perspective as I have been the dad that drives in parks and walks
his son to the door ( to his classroom when in
elementary school). I have seen children sent out the door of the
car with nothing, the parent yakking away on some call while the
seven, eight or nine year old gets herself into or out of the car,
and walks up to or from the doors without so much as a glance. Over
and over every day the same kids the same parents.
Am I just a worry wart or a wimpy dad with apron strings or
self-constructed umbilical to my son? Sometimes I question myself
don't you? I arrive at my conviction- Heck no. I am on top of
everything and I have my priorities right. My son is the first thing
I think about everyday. My child's life is what matters most. Not
the phone, the latte, the impatient bastards behind me in the line
up are all second or do not matter at all. I have been flipped off
by other parents because I parked at the end of the drop zone
(outside of the yellow paint oh no!) and got out and walked in with
my son leaving them to fend for themselves as they swooped in behind
me and in front of another car that was moving to slow for them to
dump their kids realizing they would now have to back up to get
out...too bad pumpkin, you better get a move on your minions
are waiting for you to show up and step on them-hurry hurry now...Oh
and did you tell your baby that you love her, you're proud of the
way she can get all ready by herself and get out of the car and walk
on in to school like a big kid and too do good work and mommy will
pick you up after school and we will do something fun? Oh that's
right you were flipping me off and complaining to someone on the
cell phone about it while your child passed us up running to the
door...perhaps to get away from you? or to be just like you and rush
and don't be a slacker...these people bug me can you tell?
I do not intend to bash women here let's not go there...men are
capable of stupidity at monumental levels as well. If I had to
pinpoint the one biggie that men are guilty of it would have to be
this: Men will sit there on their thumbs during
meetings/appointments/home and leave mom to handle it all thinking
that they are supposed to be that way- mostly it's because you are
clueless as to what is going on. Men are the bread winners, or the
macho/role from the 50's left-over- whatever that places us in this
role. I am amazed by how many people men and women still
believe this is how it works...Mom's take over and they
inadvertently or intentionally shut us out (sometimes)...why? We are
stupid and let our crap or our inability to feel and express get in
the way. These same men can't get their mind around the fact that
running to work, or needing to work over time to make extra money
for the doctor's or specialists is doing enough. We men also
subscribe to the notion that it is acceptable to work two jobs/ or
putz in the garage until midnight, or worse yet run away from our
problems by drinking, or hanging with the boys, or affairs, or
getting in the car one day and never coming back... than to get our
butts into the ring with this Asperger's thing and figure it out. We
cling to the child who is on the teams, or does have all the typical
skills, and don't even realize we have shut out the child that is
not typical. Moms can enable or help us with this by hovering, and
doing what they do by mothering a needy child - we are in the way
once to often and then presto- well we just stay out of the way...
All of these are extreme examples but you get my drift dad's...get
involved - if you don't you are leaving it all up to your partner
and that is unfair, and basically stupid. Your child deserves better
from you.
How about this one, picture day at school. A friend told me about
this one... The kids are lining up...little kids- a kindergarten
class here they come. they are all looking fine and dressed to up
and hair curled and ribbons, and the boys are slicked into looking
like little men it's a big day for the kids and an even bigger day
for the parents as their little one is out in the big world now and
don't they all look cute...as things are going along there is one
little girl, the child with the divorced parents and dad has brought
her to school from his house today, dressed her very nicely, fixed
her a nice hair-do complete with bright color coordinated ribbons
and shined the shoes, the tights don't even have a snag or spot on
them. He has done good all on on his own- what a guy -even though he
has irreconcilable differences with mom. Whatever he or she pulled
leaving the kids in the middle for a reason- he is at least
tuned into his child. He no more than leaves when, suddenly in
rushes the mother, fast and ferociously swoops up the kid, whisks
her to the side of the room and begins to strip her to change her
clothes into the ones she has pulled out of her oversized purse
adding "she is not wearing that for pictures". Staff and
volunteer parents were speechless as they witnessed this insane
event. Unfortunately stuff like this happens everyday across the
planet by stupid parents so wrapped up in their own crap that they
forget about the child and the rest of the world. Often it isn't
until something disastrous happens that they realize they have been
out to lunch on their child's expense account. Then suddenly they
are running in to school for help and answers to their problems that
have washed in and are causing problems for their child at school.
Now the teachers and staff are supposed to fix it. That is not how
it works.
Now that I have ranted on how the stupid parents can prove daily
that they are stupid it is easy to see where the staff at schools
can get a little crusty over time. Most staff are very agreeable,
willing to try things, appreciate a parent that is honestly trying
to do what ever it takes to see their child make it, and not one of
the snooty dabblers that are upset because the local news paper they
offer the children to read is "inappropriate" due to the content
being to violent or some other crap. Kids get more violence watching
TV shows for kids than they will ever comprehend at age 8-9 from a
news paper. These kinds of parents are pains in the butts for staff.
The ones that blow in to conferences late or divorced parents that
need duplicates and triplicates, and the ones that can't even manage
to be civil to one another during a meeting with staff are royal
pains. The expressions on staff faces during one of those ex spouse
tangents is priceless...but a major time abuse.
Our jobs as parents is to be attentive to our child's needs and
to be involved in our child's education. Education is the key isn't
that some old slogan from years ago to promote higher learning or
something? Well in our cases it is the key. We can quickly be
reminded when it comes to our special education kids that staff is
there to educate- not to parent.
In fact I was rather callously I thought, reminded of this fact
during an IEP "team" meeting one day by a district staff
representative as I pled my case for help with a program that was
not meting the needs of my child emotionally. I was not out of line,
I was honest and asked for help. I was stonewalled. I was reminded
that the role of the school, staff, and district was to educate not
to be parents. I was lost with my own desires for improving my son's
educational environment, and making adaptations and I was flat out
called on the carpet for having signed an IEP document several
months previous and now I wanted to change it again. "isn't this your
signature here at the bottom?" I was asked...I felt like I was in
the office of the repossession banker that had me by the short hairs
for not wanting my car anymore. It was awful, I was slammed hard
back into my little meaningless world of stupid parent
classification. It was all I could do to keep from walking out
and in hind sight I probably should have just to regroup. It
was funny in a way because I had been the one to call on this person
for help outside of solving it with in the school, with the staff
and principle. After the meeting I spoke to the principle-he was a
great man who had been at it for years, although only the second
year he had the Autistic spectrum kids in a center-based program in
his school. He told me "we were surprised you called her in, she is
kind of rough". Go figure. Well I learned the hard way that you can
usually solve whatever is going on within the school easier than if
you call for help above their heads.
The fact remains that no matter what the circumstances, that is
the role of staff... They educate (all of us). We expect them to be
sympathetic, we demand them to be professional, and yet we are often
the ones who are least professional when it comes to meeting them on
equal terms. The playing field of parent vs. educator is equal only
if we do our job, and respect the dynamics of the relationship. That
does not mean that when someone is being unprofessional either side
cannot call a halt to the ride. It means that the expectations
are the same from each side. The almighty educator-staff days are
over. It is a partnership especially in the case of a special needs
child and special education. You may have to force/press your ideals on
them at times, You need to stand up and let them know when things
are not right in as much as, you may have to challenge your own values at
other times to realize that you are not seeing the full picture.
Try this piece I pulled out of my journal from several
years ago. Staff can be stupid too (note: I
took the boys name out of it to protect):
Side dish:
witnessed the most blatant misguided practice of inclusion today at
the all school version of the 3rd grade
performance/rehearsal this morning. As the first wave of kids are on
the stage and begin to sing a song to piano accompaniment, I am
drawn to a boy in the front row center, standing rigid with his
fingers in his ears. He is one of the CIP/HFA boys, who is pretty
high functioning, well dressed, appearing well taken care of by his
parents.
As the program
continues through numerous songs and routines, the boy remains, with
his fingers in his ears, while apparently unaware staff converse
against the wall in the back, with no attempt to intervene and
address this situation for the boy who is obviously having major
issues with the noise levels generated by students gathering and
then performing. Peers on either side of him are seen attempting to
console and queue him to stand or sit as directed by the music
director. They looked at a loss toward staff once or twice the girl
next to him looked helpless and was getting upset.
He looked awful, it
was painful to watch and took everything I had not to run up there
and stop the thing to bring him to safety and spare the humiliation
by peers and onlookers. It was like witnessing a disaster in
slow-motion, an awful situation before my eyes in disbelief and
wondering how long it would go on before any one would do something
or the performance would end.
Just when I had
enough and was heading for the Special Ed/ staff member collection,
the performance came to an end. The stage was cleared and students
were herded out to gather and move back to their classrooms this boy
included, while the next group prepared to take the stage. I had no
opportunity to approach staff although the new CIP primary for 1-3
waved to me on her way out. The next performance started immediately
and I needed to be there for my sons experience and he did ok, he
didn’t sing, looked bored, but handled the noise and commotion.
Inclusion value?
I knew I had to
raise a flag on this one, so I stopped to speak with the principal
and commented on the situation offering opinion to the attempt at
inclusion, and we discussed the factors and possibilities of the
situation. He mentioned that this boy had been practicing all week
and he was certain if there had been a problem staff would have made
adjustments prior to today. (question rhetoric level)
Bottom line, it
still doesn’t excuse the staff from not halting to save this boy
from such an awful experience. I related that I was not pleased by
it, and he assured me he would discuss it with the boys teacher. He
thanked me for my parents’ opinion as being valuable. I would love
to get a copy of the video tape they were rolling to use it for a
“here’s what not to do” staff training tool, it is a text book
mishandling and/or lack of guidance/under trained/ dedication to
children’s needs poor performance staff example. This is the kind of
thing that is below standard, new program or not. These are the
basics. All the wonderful support in the learning of curriculum
subject matter and assistive programs do not amount to spit if the
child is subjected to this type of neglect of his
disabilities/needs.
I was so mad. Thank
the stars my boy came to me after the performance for a hug and a
walk to the classroom, it distracted me.
I wonder if a note
or phone call will be made to the boys parents to relay the
experience and attempt to learn or adapt the ‘inclusion’ to his
needs? Or if the staff will have learned anything from this. If
they were at least showing distress about it- or seen to console
this boy I would be more sympathetic to the notion maybe they didn't
know what to do about it in the moment of such a big production.
However, they were oblivious to it all and it went right through the
cracks.
It will be
interesting to see if he is included in this evenings program, wait
to see what unfolds.
So where does that leave us? We need to be on
top of everything. We need to be looking for all aspects. It is a
taxing, exhausting job. We need to take care of ourselves as much as
our children. We need to be sure we understand it all...this is no
easy thing, however with a good attitude and support, and plenty of
common sense we can do it.
Now ask this question:
Are you dumping and running when it comes to your child's
education or are you involved? get this one figured out fast. Make
your choices. Are you giving up the control to the staff, the
system? than stay there and accept that is what you are going to
get, and that is what your child is going to experience. Stay there
or get involved. If you get involved be ready to endure nearly every
emotion form extreme anger and frustration to utter jubilation and
heart felt understanding and reach a level of partnership with your
child's educators and support staff, but do not mix the two themes
or roles. It is easy to over step the lines. It is just as easy for
an educator to overstep or dismiss you at times too. You have to
remember that staff are bound in many cases by standards set forth
by the higher ups like the district which makes the policies and
they are unable to step around the boundaries and give you the
information or slip you a clue or much needed advice as to how to
short-cut into the service or options you may need. Often , it seems
like the school district will prefer to keep things just out of
reach for you. Many times it is due to lack of staff resources, or
the sheer number of students they are serving. It varies from state
to state and district to district. Public education is for everyone.
It is standardized for typical children. It is a scattered mess of
many different methods when it comes to special education. The
resources are tricky, the methods are loose, the government can only
set guidance for the most basic of functions, and safe guards the
rest is up to you to sort through and get the stuff you need in
place for your child.
Be patient, be informed, be
sure of your role/position and just take care of your child. Seek
out help from other parents, go to the meetings, go to the seminars
and workshops offered in your area...get involved. Respect and be
respected. Most of all stand up for your child, and the others like
them...don't take any crap from anyone. You know what is best for
your child- have you done your homework?
I know I need to edit for spelling and grammar as usual...I'll get
to it...what else is new?
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