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What? So What? and Now What?

Feb 12, 2008 - 3 comments
Tags:

diagnosis

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what now?

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Autism

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PDD

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PDDNOS

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support group

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respite

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aspergers

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Grief



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WHAT:

Okay so you got an "official" diagnosis for your child.  Well, was it a complete surprise to you?  Or did it confirm your suspicions?  After all, you set the appointments and sought some kind of help in the first place, right?  

You’d think the official diagnosis would ease your mind because hey, the guesswork is over. Problem is, it rarely does. There's something about that official written report in black and white that makes it all real.

What it actually does is throw out your somehow, tiny hope that maybe just maybe, possibly, perhaps your suspicions about your child were wrong. No room for denial here. It's official. It's  altogether natural to feel mixed emotions such as: grief, denial, anger, despair, and fear all at once.

Maybe you just wanted someone to PAY ATTENTION to what you have been seeing for months or even years.  So you got an official diagnosis and now you feel relieved. You fought long and hard to get someone to see that something is wrong, and have been against a brick wall trying to get needed services until they see something on paper.

So, just realize that the grieving process is natural.  Please don't allow your child to be a part of the grief.  Please experience your grief AWAY FROM YOUR CHILD!  The reason for this : inasmuch as you feel you didn't get the child you hoped for, but to the child, s/he can't help that. Your child is who s/he is.  So, when you  say:  "I wish I had a noermal child", s/he hears:  "Mom doesn't want me, she wants a 'normal' child, she wants somebody else." Just because your child is non-verbal doesn't mean s/he can't understand.


SO WHAT:

Parents tend to blame themselves or each other for the cause of their child's autism. They wonder if it was that glass of wine she  drank at her awards dinner when she was pregnant or maybe it was those fish he brought in and They had eaten from his Great Lakes fishing trip last summer. All this past stuff is brought up in some frenzied attempt to answer  “Why?

Please remember: It is not your fault nor your partner’s fault. What you did or didn’t do earlier in your lives has nothing to do with autism.

In the early days in 1943 when autism was first identified until about 1970 or so, there was some medical "buzz" about parents not loving or cuddling their children or too strict or too permissive.  The term "refrigerator mothers" was common. None of this was credible.  This caused a lot of children to be removed from loving homes and placed in institutions.  These unfortunate children had to endure years of psychotherepy sessions and institutional life.  It also caused a lot of parents to be alienated from their children. This was also the same medical community that analyzed personality from reading the bumps on patients heads or the same medical community where leeches and blood letting was a common treatment method.

NOW WHAT:

The verdict is still out on whether genetic or environmental factors play a role. In any case. you had absolutely no control over these factors. But what you can control is what you do next. You can learn all you can, decide on various therepy options, and be an advocate for your child.  And, I might add, take care of yourselves (the primary case manager).


In summary:
   A.  Learn all you can
   B.  Decide on therepy options
   C.  Be an advocate
   D.  take care of yourself


Learn all you can:

Educate yourself about Autism/Aspergers/PDD. You have already begun by being on this forum.  I've noticed some of you have done this even before your child ever received a diagnosis. There are books, articles, DVDs, workshops, and conferences, websites. The more you learn, the more comfortable you will be with the diagnosis. It also empowers you to make wise decisions about therepy options, and be an advocate for your child.  

Please keep in mind, theres no way you can possibly learn everything all at once.  Realize that if something doesn't apply, just file it in the back of your mind  and go on. If you don't understand something, realize that you will understand when the time comes. Just take your time.

There are so many viewpoints on the causes of autism and treatments.  There are also many unknowns. In fact, part of the learning process is knowing what we don't know and living with this ambiguity until further research evolvesinto more answers.  Sometimes further research evolves into more questions.

The incidence of autistic spectrum disorders is increasing over the past 10 years. The USA Center for Disease Control and Prevention (CDC) currently estimate that there are up to 560,000 individuals in the U.S., between the ages of 0 and 21, on the autistic spectrum.

Do you understand what this means? You are not alone. You have parents of 559,999 children who are  going thru or went thru what you are now going thru. Support groups exist all over the world.  I know, I ran one of them for 6 years. Join a support group, especially during the early years. Meet other parents who have walked the road before you. These parents may know about local resources and services to tap.  

Each group has its own its own culture and point of view, whatever. So, maybe, the first group you come across may not seem right for you. That's okay, find a group that is comfortable.  


Decide on therepy options

The more you learn,  the more you will get a sense of where your own child fits on the autism spectrum.  How is your child doing with social skills? Where is he at with language?  Does he have repetitive behaviors? How are his motor skills? Does he have sensory issues?  Build on his strengths. Identify weaker points.  Find treatments and interventions that address your priorities.

Ask the professional who diagnosed your child about the next step. Go to the school district.  Ask about their role.  Ask: how do you get the ball rolling and get an Individualized Education Program (IEP)? Ask: what programs are available? Ask about federal, state and local services? Are there financial services?  

What about medication? You need a state board licened psychiatrist if medication is indicated.  Maybe social skills training? Is speech, occupational, physical therapy recommended? Is there a waiting list?  You should get on right away.  

Be an advocate

As the parent of a child on the autistic spectrum, you will deal with many systems, the good, the bad and the ugly: school administrators, faculty, school boards, state and local officials, legislators, doctors, social workers, insurance companies, clinics, therapists, relatives, and friends. Armed with your knowledge, you will become your child’s best advocate.

"speaking the truth in love," you will find yourself educating others who just don’t get it. Remember: what you teach someone about autism/PDD will not only help your child but other children on the spectrum that this person encounters.


Keep all records of test results, medical issues, and m-team reports and IEP's.  This will get thicker and thicker as the years go by.  Start with a 2 pocket folder, then a 3 ring binder, and eventually, a file cabinet!  Trust me, you will need it all.  My daughter is in her mid 20's and we still refer to her records when she was 6.  These social service agencies are relentless on asking for paper, paper, paper. They want details! And details from years ansd decades ago! You will need to access that paper  for years to come. You will need evidence of what was said or promised when it comes to a fight. CYA !!  Trust me, beuraucracies tend to "lose" information when it becomes convenient for them.  if you can produce  this "lost" item, it may make all the difference.


Take care of yourself


In all this stuff you are doing for your, make sure your children, "find your balance", Daniel-san!. You will need to recharge your batteries.

Find a way to care of yourself during this time. Your child’s needs seem urgent. We sure make it a point to get every intervention, every therepy, rushing around until we get the "rushin' flu". We run the risk of a nervous breakdown at worst and stress-related symptoms at best.  

You may try tag-team parenting. Tag-off and take a break while your partner takes the mat. But, be there for when your partner tags off, though! Next, find someone for a couple of hours at a time. Turn to your friends, your family, anyone. Support groups can help, especially during this “newly diagnosed” period. Some agencies offer respite care: babysitting by someone who can handle children with special needs so that you can take a well deserved break.

Try to take it one step at a time. That’s all anyone can do. Learn as you go, from your mistakes and successes, and from professionals and other parents you meet along the way.



is there an autism/PDD epidemic?

Feb 01, 2008 - 9 comments
Tags:

epidemic

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Autism

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syndrome

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Time magazine

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PDD

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Asperger Syndrome



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I just read Time magazine Jan 12 issue "Is the Autism Epidemic a Myth?"

The word "Epidemic" conjures up fear.  The word sparks funding and research and action, no doubt.  Just remember the polio epidemic in the USA.  Perhaps when termed as an epidemic, maybe a single cause may be found and a vaccine can be developed such as the case with Polio, Measles, Chicken pox and a host of other epidemics  in the world.  Yes, maybe modern science can work to eradicate autism.  As we eradicate autism, we can eradicate people with new perspectives, picturesque speech, accurate communication modalities (persons with autism tend to say what they mean and not rely on awkward non-verbal "addendums").

Okay, let's look at the numbers:  before 1990 the incidence of autism was reported to be 4.7 out of every 10,000 American children and now we have about 60 per 10,000. So, the INCIDENCE of autism diagnoses has increased in the last ten years.  I will concede that fact.

Let us also consider how the definition of autism has changed in the past ten years.  Also what was considered a medical definition has also become a definition in the educational system nomenclature which didn't exist prior to 1990.


Quoting Time:
BROADER DEFINITIONS Each successive edition of the Diagnostic and Statistical Manual of Mental Disorders--the bible of mental health--has revised the criteria for identifying autism in ways that tend to include more people. Two conditions on the milder end of the autistic spectrum--Asperger's syndrome and the awkwardly named PDD-NOS (pervasive developmental disorder, not otherwise specified)--were added to the DSM in 1994 and 1987, respectively.
CLAUDIA WALLIS  Is the Autism Epidemic a Myth? Time Friday, Jan. 12, 2007

U.S. schools are required to report data on kids who receive special-education services, but autism wasn't added as a category until the 1991-92 school year. No wonder the numbers exploded--from 22,445 receiving services for autism in 1995 to 140,254 in 2004.
CLAUDIA WALLIS  Is the Autism Epidemic a Myth? Time Friday, Jan. 12, 2007

Here we not only have a moving target, but an expanding target.  When I aim at my deer, he expands to the size of a moose.

I also believe autism is being identified for what it realy is and professionals are more aware of autism.  Decades ago, "autism" was used synonomous with "childhood schitzophrenia."  Let us remember that both autism and Aspergers syndrome was first identified in 1943. Prior to that, centuries ago, the Irish culture believed that fairies stole their "normal' child and replaced them with "fairy children".  Prior to that, the diagnosis of demon posession or witchcraft was prevelant.

I am not yet convinced that "it's in the water" or "in the vaccines" or whatever.  

The article also makes a valid analogy:
"Where are all the adults with fetal alcohol syndrome?"... No one over 40 has the condition, thought to affect up to 1 in 500 kids today, because it was not recognized until the mid-'70s. But no one would say alcoholism among pregnant women just started,"
  CLAUDIA WALLIS  Is the Autism Epidemic a Myth? Time Friday, Jan. 12, 2007


So the points raised in the article are well-taken:  It may be easier for some to refer to the increase in the INCIDENCE of autism as an  epidemic (especially for political funding purposes) than to think in terms of  expanding  definitions and an increased scientific awareness.

Books with a positve approach

Jan 30, 2008 - 0 comments
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books

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Autism

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children

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family

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laughing

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learning styles

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Love



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A collection of really funny stories from parents you might even recognize your child in some of these stories.   This is kinda break for parents.  As parents, we get sooo serious and so frustrated or wrapped up in desperation that we forget to laugh.  Some of these episodes in these series of books by Wayne Gilpin, we could have written ourselves.  These books have some value to me if only to take a step back and look at the big picture and just laugh and alow myself to love.  I get angry too many times as my kids can verify.  There is a serious side to the books, too.  It shows how we need to just back up and look at the big picture.   Wayne's series of books give me perspective.  The last section of the bookls has the more serious side.   I recognized some of my views in those sections.   Very positive approach.

Laughing and Loving with Autism
More Laughing & loving with Autism
Much More...Laughing & Loving with Autism
by Wayne Gilpin:  

  Thinking in Pictures by Temple Grandin:  

A very informative book about all types of neurological conditions.    

The way they learn by Cynthia Ulrich Tobias:  
This book explains the different styles people process information.    She calls these learning styles; most of the ideas are modeled after from the research of Anthony Gregoric Ph.D.   We tend to process information better in dominantly concrete or abstract forms and we are better at organizing   information in either a random or sequential order (once again, in a dominant manner, not all the time).   As these methods are combined, a model develops: Concrete Sequential, Concrete Random, Abstract Sequential, Abstract Random.   It stresses that once a child's learning style is recognized; you change the teaching strategy to fit that style.   This book is about children in general.
  It's easy to read for both parents and   educators alike.
  
This book is published by
Focus on the Family Colorado Springs, CO.   I recommend it to any educator.

  


Don't wait for kindergarten

Jan 22, 2008 - 0 comments
Tags:

child

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intervention

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health care

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business decisions

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medical science

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therepy

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Health care in America



Read my blog on how to ask for an EEN evaluation for spec ed.   I want all to know that child find is not just for school-age children.   This is how to get early intervention services..   Birth to 3 and early intervention preschool programs can all come from  child find.  

I guess since this is from the school district, parents think kids need to be school age.  NO!  This is also for little ones, too!  

I'm sticking my neck out here saying this on a medical forum:  I don't expect much from the American medical community in the way of initiating services for therepy.  The medical community is driven by the insurance industry and their goal is cutting costs and keeping costs down.   Somewhere in my lifetime the science of medicine became the business of health care.   When I was young, we talked a lot about medical science.  Nowadays the talk is about healthcare expendetures.

OTOH, the educational community (well, special ed, anyway) is driven by United States federal law.   They are mandated to seek after children with developmental delays. Granted, some states ate better than others at doing this.   The more EEN children they have in their caseload, the more funding they receive.  

Contrast this with the medical community, referals must be cleared by the HMO/insurance.   Insurance may only approve enough to make a profit.  So you get approved for 6 sessions of PT.  Don't even think of newer therepies that mhave been shown to work well.  That's called "experimental."     So your child gets just enough therpy to show SOME improvement in function  in the next eval but not enough to be effective in a lifetime.