Thursday, September 25, 2008

It Just gets more interesting.

I should just write a "parents manual" for dealing with Services since my personal experience has made our process so dog-gone predictable! In fact, we have been through so many services for our 10 year old daughter that nothing surprises me anymore.

As I have written in the past, when a new service is provided by the school or mental health system everything starts out well--with lists of goals, expectations and a plan. When the allotted amount of "TIME" and "Funding" has been exhausted the providers of the service turn their attention on any weakness or flaw of the parents.



In my last post to this blog I said the writing was on the wall and the current public school day treatment service appears to be winding toward the end... And, as I wrote just 12-days ago:


I have learned that when dealing with the "systems" the title "Parent" is just another term for "Idiot pains in the Neck" to those managing the "system." And, if you are not the average idiot parent you will be treated like one anyway.


I know that the school teachers are NOT reading my blog because I have fantastic tracking with about 10 different methods to validate my visitors. I know the teachers are not reading this blog because if they were they may have thought twice about writing this paragraph in the email I received last night:

The last several days we are seeing more impulsive issues arise and we're wondering about where things are at with her medications right now. Did you have a chance to see her doctor? I know you mentioned the appointment you had set up last week was canceled. The impulse issues show up in talking out more often, making assumptions she can do something vs. asking about it first, etc. Not huge things at all though we're seeing more of it and are wondering about why. We continue to monitor her closely and also encourage her to make positive choices when she's struggling a little. She accepts our feedback well.


The naive and less jaded mother I was not long ago may not have noticed the full implications of the words said in this paragraph. Some might consider my reaction to be a little over dramatic but, lets look at the "Implied" meanings in the Above Paragraph:

  • We are seeing more Impulsive Issues Arise and know that last Thursday the Dr had to cancel her appointment (because he had a mild heart attack)and wonder about her medications?

IMPLICATION: We are assuming you are a loser and didn't make it to that appointment and as a result the prescriptions have run out and you have failed to drug your child so she will comply at school and not cause problems.

  • Come to think of it--we have noticed that she is talking out more--interrupting and not asking permission before doing things. Not enough to actually mark her score down but we WONDER WHY?

IMPLICATION: We know we are not meeting her needs here and that this isn't the right service... Her problems are NOT HUGE so we won't document them on her daily record, but we do want to make sure we get it in the record that YOU FAILED to take her to the doctor and that's why she is acting out a little bit... When you finally get around to taking her to the doctor and refill her medication we will be sure to NOTE in the record that THESE ISSUES vanished like Magic! After all it is important that WE make sure you don't trip up even a little bit and it's clear by the little information we have that WE CAN make this Notation that way in the future when YOU pitch your famous tissy--it will be clear YOU are the Lazy Parent who didn't follow through...

And... the last few words serve as CLEAR DOCUMENTATION that EVEN though Makala has a lazy mother who failed to take her to the doctor and refill her medication WE ARE DOING the Best we can under the circumstances and lack of parental obligation on your part.

This EMAIL was for and about one thing: To get it on the record that the services were provided and the REASON they were not effective is that MOM didn't do her Part... This Email STINKS of "blaming the parents" just as I wrote is the modus operandi when "Services are Ending"

It's as if they actually have a METHOD and I would bet the providers and teachers are actually required to attend training on HOW To Document PISS for Parents! I think there is a Check-List of all the Steps they are required to take in order to BE SURE it is Clear in the Record that THEY Did their part and it was the failing of the child's parent to follow through... I am sure they are RIGHT 75% of the time!

The PROBLEM For The School is that--they ARE WRONG this time.

We saw the doctor on Friday afternoon--his heart attack was mild and HE is the ONLY provider we have had (and pay a ton of money to have) WHO actually CARES more about our daughter then keeping a record of what failures we are as parents... He doesn't work for the State, Schools, or official service provider (which is why we pay a fortune to keep him for the past 4-years).

We also have the BRAND NEW Refills for all of her medications which were refilled on exactly the 30th day from the last refills... She didn't miss ONE SINGLE PILL and she didn't Miss her monthly Dr Appointment!

It is going to be very Interesting to SEE WHAT NEW IDEAS they come up with in order to document her records with the fact that WE ARE HALF HER PROBLEMS!

Stay Tuned for the Steps I have Learned to Take In order to Watch OUR BACKS!




Tuesday, September 23, 2008

Well Meaning but, they do not Get It

As I expected and hope Makala's days in the day treatment program are numbered. She has reached level 4 which means she needs to meet her "percentages" for 75 days. She always does well in a structured program when she is the "good" child in the group. Of course, she will do well in this program.

Today we were talking about what is happening at school, and it still cracks me up sometimes when "people" think they understand.



Part of a day treatment program includes "therapy" which Makala has had so much of that she knows every answer. We were talking about what she is working on during her one-on-one therapy sessions. As usual, Makala is working on:

"What to do when she is Angry"


I think Makala has been working on this list for at least 4 years now. It's the one she knows the therapist enjoy and then helps her write lists, draw pictures and try to remember the skills.

We have had about 5-6 different "Anger coping skills" Charts, lists, collages, posters -- you name it! Makala has learned that this "problem" eats up a lot of time during therapy and the therapists enjoy it.

All of the charts, lists and posters have the same things listed.
When I am Angry I can:

  • Listen to Music

  • Take a Walk

  • Dance

  • Get a Drink of Water

  • Swing

  • Walk Away


Seems like a real nice list. Until you pay attention to exactly "WHAT" makes Makala Angry and then... the charts, lists, posters and therapy misses a very important point:

All of the choices on the lists and charts are inappropriate behaviors for the situations that make Makala angry with ADULTS. In Fact, doing any of these things because she is Angry about being asked to set the dinner table--would only result in some kind of consequence she really wouldn't like!

I doubt that it would be very effective for her to manage her anger with her teacher if she just walked outside and took a walk or played on the swings.

It's hard to convince people, especially those with all the training, that children with Fetal Alcohol Spectrum Disorder -- FASD tend to see things very literally and live in the moment. The list of skills is fantastic for children who may be holding on to anger for a long time or needing skills to cope with pro-longed stressful situations.

But, my little girl needs skills for "the moment" and doesn't quite get the fact that it is NOT okay to start dancing when she is angry with her mother...or teacher. It is Not Okay to listen to music when your teacher has made you angry and it would be a really bad idea to take a walk because you are angry it's time to go in the house for the night!

Therapy is great, but the fact is FASD is brain damage and all the therapy in the world will not help a child learn WHEN to use these Anger Coping Skills or what to do when the Anger is in the moment with someone who has authority. Therapy is not going to give Makala any "abstract thinking" to her Anger is Anger and the list is THE LIST.

It's my job to go over and over the subject with her and work on making the REAL lists and charts--the ones that help her learn what to do with Anger in every different situation. How to identify anger, how to express anger, and how to respond to authority when she is angry.
*


Wednesday, September 17, 2008

RAD Symptoms or Maybe Not.

The symptoms listed in the Diagnostic and Statistical Manual of Mental Disorders -- DSM IV (code 313.89) for Reactive Attachment Disorder of Infancy or Early Childhood -- RAD, may seem to be pretty clear to any parent with a child who displays them.

But, for any parent of an Adopted Child these symptoms can be pointed at as proof THE problem the child has is RAD. After all the adoption in and of itself indicates there have been broken bonds and the very fact a child is adopted seems to be enough for the child to be labeled as a RAD Kid...




In a 1994 paper written by Dr. Margot Moser Richters and Dr Fred R Volkman, point out a few interesting facts about Reactive Attachment Disorder of Infancy or Early Childhood and remind us that since the addition of RAD was made to the DSM-Ill, reactive attachment disorder has stood apart from other diagnoses for two reasons:

  • Reactive Attachment Disorder is the only (mental health or illness) diagnosis designed for infants in the DSM III, and

  • In order to make the Diagnosis it requires the presence of a specific etiology.


NOTE: With the update of the DSM IV Reactive Attachment Disorder remains a Mental Health Issue diagnosed in infancy and childhood. While many issues are diagnosed for children there are few mental health issues doctors are willing to label babies and children with. Most Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence generally are not mental health diagnosis.

The doctors describe the pattern of disturbances demonstrated by some children who meet DSM criteria for reactive attachment disorder and make three suggestions:

  • (1) The sensitivity and specificity of the diagnostic concept may be enhanced by including criteria detailing the developmental problems exhibited by these children;

  • (2) The etiological requirement should be discarded given the difficulties inherent in obtaining complete histories for these children, as well as its inconsistency with ICD-10; and

  • (3) the diagnosis arguably is not a disorder of attachment but rather a syndrome of atypical development.


In other words because we have adopted children and there is a mental disorder that might define our child's behaviors they are often diagnosed with RAD... One of the few mental order diagnoses that can be made for children and infants.


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Monday, September 15, 2008

The Little Ways Make a Difference

It has been interesting and amazing to watch how so many small things can make such a huge difference. A few years ago I was involved in a rather heated -- forum flaming -- debate with another mother parenting children with Reactive Attachment Disorder (RAD). I took issue with the fact that this mother (parenting multiple adopted special needs children) believed there was only one way to deal with "these sick children" as she referred to her children...




During the course of our interaction I was surprised to learn that some people hear a diagnosis, choose a treatment plan and then expect it to work for ALL children with the same diagnosis. While I am not any expert by any means, this mother had parented several children including a few who had disrupted or dissolved adoptions and she believed she was the expert...

I had a huge issue with her approach. I have an even bigger issue with the "Only One Way" attitude today.

Reactive Attachment Disorder -- RAD, is a very complex diagnosis which is mainly based on the observations and interpretations of behaviors typically reported by a child's primary caregiver. The problem is that every single one of the trademark "Symptoms" of RAD are also symptoms of many other conditions; metal illness, personality disorders, prenatal exposure to alcohol and drugs, or in some cases just normal for some people.

The other mother while more experienced parenting highly special needs children seemed to have a "cookie-cutter" attitude about the diagnosis and treatment for children with RAD. She believed there was No Reason to learn about the specific different kinds of attachment issues. Worse however, was the fact this mother believed that unless the RAD was healed there was NO REASON to even investigate any other possible cause for the symptoms her children were displaying.

I just can't do things that way... Especially, when I am parenting a child who has behavior issues that are on so many different lists of symptoms for so many different different diagnosis!

If I could offer any of my own advice to parents suspecting or raising a child who has been diagnosed with Reactive Attachment Disorder it would be: "Don't Judge a Book by It's Cover!" And, remember that people are not JUST ONE THING we are all complex with unique personalities and brains.

In order to parent a child who has behaviors listed on many different diagnosis effectively it's our responsibility to learn as much as we can about each of the possible "REASONS" as we can, and to get to know our child well enough to tell it the recent behavior was because of RAD, or another issue, or in some cases just within the realm of "normal" for some children at that age.

If there really was only ONE CURE for children with RAD then it would work all the time and it would also be one of the only disorders in the DSM with one cure. The truth is that no person is just One Thing and any parent unwilling to understand ALL the possible reasons why a child behaves the way they do as well as WHO the child really is may be part of the problem.

Nearly 6 years into parenting my RAD, FASD, ODD, ADHD, PTSD, Neglected/Abused, and so many other possible things child I have learned one important thing:

It can be the Little Ways that make the biggest difference!


Because of the fact it really can be the smallest things that make the greatest difference it seems to require a lot of words to explain what I mean. Stay tuned to this blog for future posts with lots of words about the little ways we can actually make and see the biggest differences with our Special RAD and other A.B.C labeled children.



Saturday, September 13, 2008

The end of the second week back to school

Another school year starts and the writing is already on the wall! The 5th grade is going to turn out just like all the rest of the grades--and there will be a big transition during the middle of everything for Makala...

I have decided that it looks like it's time to have more then the "consultation" with the Attorney and now it's time to pay the big fat retainer fee!




I have learned that when dealing with the "systems" the title "Parent" is just another term for "Idiot pains in the Neck" to those managing the "system." And, if you are not the average idiot parent you will be treated like one anyway.

Please tell me what Brilliant and well meaning educator came up with the plan that placing a 10 year old girl with Reactive Attachment Disorder -- RAD (Disinhibited Type), Alcohol Related Neurodevelopmental Disorder -- ARND, a history of being sexually abused and repeated inappropriate behaviors, with inappropriate facial expressions and "non-ordinary" reactions into a school as the ONLY GIRL...

Yes--the Only Girl! In the WHOLE Public School Day Treatment School with ALL Boys ages 5-18?

The ONLY Girl at the day treatment school with Nothing but naughty behavior problem boys... The kind who get picked up AT SCHOOL by the police for REAL CRIMES...

Of course, the children are ALWAYS Supervised.... by a bunch of Liberals who don't even have a clue about the implications of some of the liberal philosophies. Especially as they might apply to an outgoing, cute and desperate to have friends little girl... with brain damage, attachment issues and a history of neglect and abuse....

The best our Public School district was able to offer for services was to Ship her out to the larger neighboring school district and place This Beautiful Little Girl into a school filled up with nothing but a bunch of perverted hoodlums, and liberal supervisors....

Right.

The Fact of the matter is that My little girl gets off the "little bus" after school everyday acting like one of the gang... With a Bad-Kid Attitude and whatever New Ideas she learned by associating with NOTHING BUT BOYS WITH BEHAVIOR PROBLEMS!

Am I crazy or just one of the "Idiot Pain in the Neck Parents" to think someone has surely LOST THEIR MINDS TO ACTUALLY LOOK ME IN THE EYE AND TELL ME THIS IS THE RIGHT PLACE FOR MY DAUGHTER?

Sorry, and yes I am yelling!

It has been decided today that the Lawyer is going to get the big bucks because it's what OUR LITTLE Girl needs! We have played the "Parents are the best Advocates" game now for nearly 6 years and it is always the same. I am sick and tired of being the "Idiot Pain in the Neck Parent" and the next few years are far to critical to continue this game. I can't believe these people can actually hold a straight face when they tell me this is the "right placement" for my daughter's needs...


Friday, September 12, 2008

Finding Out -- It is FASD

If you are the parent of a child with Fetal Alcohol Spectrum Disorders -- FASD it doesn't really matter how or why anymore, all that matters is that you are the parent of a child with what is often called an Invisible Disorder.

The Invisible Children and Families of FASD part 1



There are a total of 4 parts to this series you may view the Rest of the Series HERE

That moment in time when the reality of the truth hits can be very devastating for any parent...



It is not only foster and adoptive parents who face the moment of diagnosis as a devastation point in life--but, also many biological parents who come to understand the implications that drinking has caused a lifetime of struggles for an innocent person.

One of the very difficult issues people suffering alcohol dependency or addiction face is denial and be it biological, foster or adoptive parent denial of alcohol can be one of the greatest warriors in finding treatment.

We just want to believe with all of our hearts that Our child will be spared from some of the realities prenatal alcohol exposure cost their lives. It's raw and hard to be the parent of a child you love so much and then learn about what has happened to that child and their whole future. It breaks my heart... and in the morning I am still the mother who has to wake up and believe that anything is possible.

I cried for three months when I finally accepted the realities for my daughter and her future. The best that we can do is the best we can do... and it comes with understanding the invisible damage that can be done to an unborn baby pickled in booze...

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Wednesday, September 10, 2008

Mr Oboma...

I was listening to "talk radio" while running some errands today. Roger Hedgecock was the mayor of San Diego when I lived there, and I like to catch his national radio program when I have the chance...

Today one of the topics of the show was this Video... I enjoyed listening to the Service men and woman call in today and share their experiences and feelings about the upcoming election! Guess, I have really just shown my cards!

Be Sure to Watch the End!



Tuesday, September 09, 2008

For all the parents of children with FASD -- Just for Us!

Today is International FASD Awareness Day... and for the other parents who really know what today is about I want to remind you of Teresa's Website... and share one of the things that can make a smile happen even if it is a very sad smile...



If you want to be part of FASAholics Anonymous and keep things in perspective be sure to pause a moment and come on over to FASStar.com...



Saturday, September 06, 2008

The Great Lock-Down

There comes a point in time where it really doesn't matter "why" a child behaves the way they do... As a mother I can sit back and analyze all the frustrating behaviors from every point of view and consider every diagnosis that may be the root of the behaviors. That's all fine and good it's always important to understand the underlying cause or reason for certain behaviors. But, it does little to change them.




At the end of the day however it really doesn't matter to me if "steeling" is caused from her Reactive Attachment Disorder -- RAD, or from the Secondary Behavior issues often seen in children with Fetal Alcohol Spectrum Disorders -- FASD, it doesn't even matter if this behavior is rooted in the neglect or deprivation she experienced as a little girl... At the end of the day the fact is steeling has become one of the top three behavior problems at this point in our journey.

I never imagined in a thousand years that my home would be one of those houses where all the closets and storage areas were locked up. My sense of family never included using Mighty-Putty in order to put big-old locks on freezer doors--or cabinets used in the garage to store the ordinary household junk.

I actually used to "judge" parents who would go to such measures rather then teach their child not to get into things they are not supposed to get into. To me it is more important to teach a child the boundaries rather then secure the world from their breaking those boundaries...

I don't judge any more!

To me it doesn't matter what "causes" this behavior--I have been working on that part of the story for a long time... and will be for a lot longer. WHY someone takes things that are not theirs and hides them--for no reason is just beyond me. And it isn't the only point.

Even if I had some respite and my husband and I could take some time and go out together, I wouldn't have any lipstick to put on as it was all taken, hidden in a backpack and stored in the neat fort daddy built. According to Auntie last weekend when our lovely daughter was invited to spend the night she was found putting aunties make-up in her backpack...

It was the same weekend she came home with a very nice notebook "Auntie" got her... The problem was that a few days later at a family gathering my beautiful daughter made the mistake of announcing the Lie--Fact again that "Auntie" got the notebook for her... Except that Auntie made it clear that she really had not given her that notebook because she had paid for it with the money she had....

What Money?

Oh Yes, I had wondered where the $10.00 cash stash I had in the car had vanished... Now I knew.

And last week it was very funny when I asked my daughter Why she was using Old Lady cream on her arms? The $29.99 jar of old woman junk? She apparently can't read the words "wrinkle cream."

I could really care less if this is RAD, FASD or whatever... and if the game is going to be take anything you want then I guess I can play that game for at least a little while.

JC Penny's had to most cool standing Jewelry box when we were there shopping for school clothes. At $450.00 a little expensive to just buy on a whim but, after this week seemed at least one way I might Protect the few things I do care about... This one has several little drawers, and shelves with a mirrored door that has a Lock. It's not just one of those nice standing jewelry boxes but, a nice piece of furniture for our bedroom--and a standing mirror.

I bought the dang thing tonight... By tomorrow I will have another key on the ring that I always keep in my pocket and I will be able to keep at least some of my small special things secured from whatever it is that seems to cause some children this compulsion of steeling. It has not done much good trying to teach right from wrong so if a locking pretty jewelry box will help then at least maybe some of my things won't be missing.


Thursday, September 04, 2008

Anna has a Vacation

I have decided that for at least a few days I am taking a little break -- well, at least from the day in and day out kid stuff thanks to school....



...and hopefully my brother Jamie stops by and plays the video above because it sure has inspired me to remember what my priorities really are... Work is great, but I want to remember who I am and who I love. That's why I'm resting for a few days this Week!



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