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What? So What? and Now What?

Feb 12, 2008 - 3 comments
Tags:

diagnosis

,

what now?

,

Autism

,

PDD

,

PDDNOS

,

support group

,

respite

,

aspergers

,

Grief



4134?1207697175
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.



Comments
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470168 tn?1237471245
by Sally44, Apr 04, 2008
Couldn't have said it any better myself.
I'm still trying to get the balance right.  But I haven't been on the journey that long.  I tend to work a week on autism and then take the next one off.

127529 tn?1331840780
by mum2beagain, Apr 08, 2008
Very well said.
When we went to the place where our son was being tested as we left the house in the morning my husband said to me "What ever happens today we are still coming home with the same little boy at the end of the day". Never a truer word was said. Two months into his therapy we still have that same happy little boy but his therapies have enriched his life so much; day by day he is learning how to enjoy this life even more, we are so grateful he got his diagnosis. Our son was born prematurely and has had many problems throughout his life, for us his autism wasn't just another problem to deal with; diagnosis has been the key to unlocking the door to a better life for him. I wouldn't change him for the world, my life is a better one for having him as my son.

298824 tn?1349955177
by crabby70, Apr 08, 2008
I agree so very much WELL SAID!!!!

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