Thursday, October 30, 2008

Help Me Help the March of Dimes!

SET ME FREE! …and help the March of Dimes arrest the rising rate of premature birth. 1 in 8 babies is born to soon, and often too small. These tiniest babies struggle to survive, and too often many don’t.

I will soon be incarcerated in the March of Dimes Jail & Bail where I will be served only the finest bread and water (okay, maybe lunch!) You can help ensure my good behavior through your contribution. My hard earned bail will aid and abet the March of Dimes in funding lifesaving programs of research, education and community services. Programs that will save babies’ lives.

If you are interested in Helping HappyMomAnna (or DeAnna Ferlitsch -- my real life name) raise Bail for the March of Dimes you can do so online at this link:

http://jailandbail.marchofdimes.com/HappyMomAnna

Thank You to any and all who contribute to the cause of helping prevent premature birth and most of All for my intentions Help to Educate Pregnant mothers in order to avoid birth defects.

Wednesday, October 29, 2008

I can't Help posting this!



Red Tape -- Private Insurance and Medicaid

Yesterday turned out to be another day of nothing... unless meetings and phone calls that use up time and accomplish nothing counts...


We have not always depended on the State Provided Medical coverage to meet our daughters needs. We have private health insurance and gladly use it -- I have already raised two children and never depended on Medicaid for their needs.

In fact, as of the end of September our private medical insurance coverage for Mental Health was used up for the year... By September our little girl had used all 50 of her "therapy" appointments.... Even with Medicaid the "school" and "county" provided therapy bills first the private insurance which pays First then Medicaid picks up the balance.

It wouldn't be such a big deal if the excellent doctor our daughter has seen for more then 4-years only accepted our Private Insurance... Even then we pay for his care under our "Out of Network" coverage and only 50% of his bill is paid. We have had NO Problem paying the $125.00 co-payment every 3 or 4 weeks to see the ONE DOCTOR she has had for the longest time. The ONE Doctor who works closely with me for medication management, and who not only write prescriptions but offers Therapy along with drugs... The One doctor who won't even set a 15 minute medication management appointment because He doesn't do business that way.

The ONE Person who actually is Qualified to Diagnose and Treat her MEDICAL Condition of Alcohol Related Neurodevelopmental Disorder... A Medical NOT Mental Health disorder!

By the End of September all 50 "therapy" appointments have been billed for our daughter... That's 50 by the end of September! The 50 appointments offered under our private insurance works out to be One Appointment Each Week with only 2-weeks in the year off... Our child has had "therapy" much more then once a week!

...I wouldn't care that she had used 50 appointments in 9 months if there had been any kind of improvement at all... Any sign that any of these therapy sessions accomplished anything.

The truth is that our daughters recent Therapist delivered via school (the only school she can attend under her IEP) decided it was a "good" idea to have a "Secret" communication system and encouraged our daughter to write her "Feelings" down and put it in an envelope to sneak to school! The last time my little girl left the house with a sealed envelope it was filled with an inappropriate drawing she wanted to give to a boy...

This therapist still seems to think that everything will be better if our little girl Goes BACK again and wallows in her "FEELINGS" about the things that happened to her before she was 4 years old... That has to be the Root of it all! Doesn't matter that for nearly 6-years our daughter has been having therapy about the first 4 years of her life... Doesn't matter that our daughter has already spent Years going backward... All of her issues must be all about the drama she can hardly even remember! It must be her early abuse her early loss her early this or that...

Over and over not only do her REAL needs go unaddressed but well meaning people want to make it ALL of the issue all of the reason and all of the cause for everything. They believe that continuous Scab-Picking of her Past Hurt will somehow be the Key!

It has been the key--The Key to keeping her Trapped in one spot... One spot that is 6-years ago One Scab she has picked off with every new therapist... One she has no problem picking for them and letting bleed all over. She knows as long as everyone picks that scab there is Nothing about Today to talk about.

Yesterday, the DHSH worker for Voluntary Services made a remark that We Need to have consistency with her Treatment Plan. I completely Agree and always Have which has been the REASON we kept her Primary Doctor--Her Psychiatrist who doesn't take Medicaid and is OUT of our Health Insurance Network... This is why we have driven 20 miles over two rivers to another State for every 3-4 week appointments.

His role is apparently of no value to DHSH since he doesn't Answer to them--since he isn't obligated to work within the Laws of Social Services and since he has no Authority in this state... So to the Worker he isn't Consistent Therapy because the State has no Authority of his opinions or recommendations. The fact we provide her with BETTER then Social Service Provided treatment renders is all as invalid!

...and even considering the fact that Our Consistent work closely with the Same Doctor since 2004 and Payment of the Huge co-payments is not considered valid by the DHSH worker... and even though the "touchy feely" therapy she has been given by the Social Service system has USED Up a year of treatment under an ordinary insurance policy we will continue to See Her Doctor and now we will gladly by 100% of his bill in order to do so.... even though this doesn't count and his recommendations mean nothing because he isn't part of the Social Service System!

Monday, October 27, 2008

Bill of Rights for Children's Mental Health Disorders and their Families

I don't usually re-post things from other websites but...

http://www.aacap.org/cs/root/resources_for_families/patient_bill_of_rights

Children's Mental Health Coalition Introduces Bill of Rights for Families Living With Mental Illnesses

Washington, D.C., April 15, 2008 -- The children's mental health coalition has created a Bill of Rights for Children with Mental Health Disorders and their Families. The coalition includes the American Academy of Child and Adolescent Psychiatry (AACAP), the Autism Society of America (ASA), the Child and Adolescent Bipolar Foundation (CABF), Children and Adults with Attention-Deficit Hyperactivity Disorder (CHADD), the Federation of Families for Children's Mental Health (FFCMH), Mental Health America (MHA), and the National Alliance on Mental Illness (NAMI).

"This Bill of Rights represents the standard of what families living with mental illnesses should expect from treatment," said AACAP's President, Robert Hendren, D.O. "Children do better when they receive consistent, tailored treatment. Few children receive any treatment and fewer still receive the sustained, quality care that they require."

The Bill of Rights was created because of the inconsistency of accessible mental healthcare services throughout the country.

The Bill of Rights:

  • Treatment must be family- driven and child-focused. Families and youth, (when appropriate), must have a primary decision-making role in their treatment.
  • Children should receive care in home and community-based settings as close to home as possible.
  • Mental health services are an integral part of a child's overall healthcare.
  • Insurance companies must not discriminate against children with mental illnesses by imposing financial burdens and barriers to treatment, such as differential deductibles, co-pays, annual or lifetime caps, or arbitrary limits on access to medically necessary inpatient and/or outpatient services.
  • Children should receive care from highly- qualified professionals who are acting in the best interest of the child and family, with appropriate informed consent.
  • Parents and children are entitled to as much information as possible about the risks and benefits of all treatment options, including anticipated outcomes.
  • Children receiving medications for mental disorders should be monitored appropriately to optimize the benefit and reduce any risks or potential side effects which may be associated with such treatments.
  • Children and their families should have access to a comprehensive continuum of care, based on their needs, including a full range of psychosocial, behavioral, pharmacological, and educational services, regardless of the cost.
  • Children should receive treatment within a coordinated system of care where all agencies (e.g., health, mental health, child welfare, juvenile justice, and schools, etc.) delivering services work together to support recovery and optimize treatment outcome.
  • Children and families are entitled to an increased investment in high-quality research on the origin, diagnosis, and treatment of childhood disorders.
  • Children and families need and deserve access to mental health professionals with appropriate training and experience. Primary care professionals providing mental health services must have access to consultation and referral resources from qualified mental health professionals.
To interview a child and adolescent psychiatrist about this bill of rights, please contact AACAP's Communications Coordinator, Adam Lowe, at 202- 966-7300, ext. 154 or alowe@aacap.org.

...ummm, now I just need to check and see if the list above is actually a "Right" or just one more of the Hopeful things people have attempted to put together in order to bring awareness and attention... Rights don't mean a lot if there is no protection of these rights or enforcement for when rights have been violated...

Red-Tape and Real Life

It's Monday and already my datebook is filled for the week. The unfinished business of the past few weeks likely to remain unfinished until the current crisis and red-tape is completed.

Life is "on-hold" here as we follow the "safety plan" and the whole family lives life under the terms set by one member of our family. We are eyebrow deep in the "system" needing to "qualify" again for the government services promised to help us parent a child who needed us.


It doesn't matter we were home studied and have worked side-by-side with the system for the entire nearly 6-years since our children were placed. We were told we would be our child's "Best Advocate" and naively assumed this would mean the same system giving us this title might treat us with the same respect offered when the title was bestowed on us.

The system has at no time since the day we were told we were our children's Best Advocates treated us as such. If this title meant anything when offered it would seem that our having earned it might imply we would be respected on this side of placement.

Instead we have accessed the services offered to any family in our place. We complete the piles of papers, sign medical releases, and make it to all of the appointments... All for the File that will only remain open long enough to be sure that the Child is Safe... No concern about the other family members, no concern about the community around us.

We see the same social workers who are accustom to entering families and homes "At Risk" and they look for all the standard ways to make the situation a result of our failures. We Are Asked about routines, bedtimes and if we fight in front of our children?

Do we have a regular dinner time? Bed Time? Does Daddy come home every night?

Our daughter is diagnosed with Fetal Alcohol Spectrum Disorders and the implications of MY DRINKING PROBLEM made note of--and then corrected later when I once again remind whomever the note taker is of the fact that we adopted our daughter when she was five-years-old... and some side not reiterates that fact again--only for my self defense of being a drinker because this is such an important part of the Needs I am the Best Advocate...

We are provided with "In Home" therapy and find ourselves waiting for Hours to see the in home therapists who never once showed up on time during the whole year and a half we had these Excellent Services.

The therapists -- case manager has few tools other then those designed to make it our responsibility. When there is no drug problems and we could show no better routine or crisis safety plan the ideas offered are FUNNY and not worth further consideration. Last year at about this time we were simply told to build a "time out" box in our garage and that "mom" could use some counseling in order to cope with the overwhelming issues... That way later if mom didn't add yet another appointment to drive to yet another place to talk about the issues with yet another person... The problems will be all because Mom didn't follow through on the recommendations!

Thank God we don't need to add Substance Abuse Support Group meetings and pee in a bottle every other day on top of all the other things on the "To-Do" list.

This is often a forgotten fact when the providers of these services are working with our family--with parents who were given the title "Best Advocates." Eventually, someone is able to offer one more thing and suggest "Family Therapy" where we are asked if we have read such and such book?

When we answer that we have read such and such book already and this or that was effective the "family therapist" has no other script except to say okay--turn to page one and lets get started (with what you just told me you have tried before and offered specific details not only indicating that you read this book but actually understand it and can specifically explain how it did or didn't help)

...and Family Therapy is all about what we have already tried.

Each service, each public school and all the workers at county mental health and DHS have the script to cover their own Obligations. When they have gotten to the bottom of the script they believe they have fulfilled their duty and can record in their file that the "service" was delivered.

When there is Nothing left on the script these people have no idea what to do or say. They cannot come to terms with the idea that "Some Children" need more then just adequate parents and a safe family to destroy. There is no clue as to what to do when everything done has been by the book... The only thing they know how to do is read the book again.

And time passes and the situation only becomes ever more risky for everyone involved.

Sunday, October 26, 2008

...And You want Nationalized Medical? Grief and the Government

In 1999 my father-in-law and 12-year-old niece were killed by a drunk driver and my mother-in-law critically injured. For several days following the accident the emotional shock of it all caused the passage of time to move at what we call "grief speed". Or as I define it -- swimming with a water-bloated snow suite on.

Once we robotically moved through the Grief-Speed the following weeks were just one day at a time...


Robotically and deliberately the family members moved through all the steps required to overcome such a devastating loss. In this case, overcome was to process and move on. Once everyone had come to terms and able to accept the impact and gravity of what had happened... There was a period of family breakdown primarily caused due to the members of the family needing to claim their own pain and wishing the other members of the family might understand better.

Everyone lost Opa, or as the adults called him, Tat... Everyone felt the overwhelming loss of a beautiful little girl and Oma, my mother-in-law suffered a long and slow recovery. We were all hurt--we all lost something and we all had our perspectives of what the loss meant to each of us. Our loss was final and happened on one day in time.

I share this because most people understand what I am trying to put into words above. There isn't a human alive who hasn't or will not face this kind of loss and grief. While sudden and tragic sadly this story isn't rare. The current News is filled with another tragedy today with the story of Jenifer Hudson's mother and brother being murdered and her nephew missing.

Death and loss is normal, sometimes there is a dramatic story wrapped around the death and loss which makes the situation more sensational... but, in the end we do know the end is the end and there isn't anything that can be done when it's over. From there we go through the stages of grief and move on.

I share this story so that it might help some people understand "Grief Time" is also present in other situations during our lives. Maybe the loss of a job, a pet or in some cases a hope and dream.

With most things that trigger the onset of deep grief and the emotional delays in the passage of time it happens when something ends and is over. Grief starts and time passes and eventually people can move forward and function.

However, there are things in life that bring on the same feelings of grief--yet it isn't for the end and nothing is over. The long, slow loss of a person suffering an illness, a marriage suffering the cycle of domestic violence, or for me loving a child I cannot help.

It's very hard to love someone and feel this overwhelming state of grief... We understand that our situation isn't the way things generally go--that what we are experiencing is rare... It's simply overwhelming to come to the point in time where as a parent everything possible has been done and our child is still at risk.

I truly entered my own grief this past April and yes, I have been getting a great deal of professional help. There are really no words to be said to a family that suffers the loss of Opa and his Granddaughter to a drunk driver. There are few words that our families and friends can say about the grief we feel today.

What I really don't understand in our situation is why the "System" needs to cause even more pain and stress to families in crisis. I am not even speaking here as the Adoptive parents but, know that I receive the same so-called services as those biological parents who fail. Today, I completely understand why and how it happens.

I do hope that those who believe "Free Medical" or socialized medicine is the way to go will understand one thing... only the STRONG have what it takes to get what is needed most. The Red-Tape and drag out of any reasonable expected governmental service weeds-out many unable to even navigate the system.

The re-starts of cases from point "A" with the lack of continuity or communication between the governmental services, the lack of concern about fundamental basic issues are Not the problems of those holding up the Hoop you must jump through in order to have a Chance for some kind of assistance. Everyone involved can talk about the facts the system is a mess--they agree with the problems you point out--but, there isn't a thing they can do about it... They wish they could of course but No one has any authority to do anything other then the Demanded Red-tape and protocol.

To top it off, once the government is involved in the fundamentals of a families life and welfare there is No Getting Out of the system. Even if the file was closed the fact there was a file means that is the way things must be managed.

As my husband and I come to terms with the fact that our little girl needs more help and special medical treatment to overcome some of her dramatic life changing risk behaviors we walk in Grief-Speed, complicated only more by Government Red-Tape speed... The difference between our walk with our daughter and the loss of our family members is that there is no end point.

Further offensive and painful is the assumption that because our little girl is adopted we are somehow wanting to return her to the system. NOT... If she had cancer we would not hesitate to place her in the Best Hospital and provide her with everything possible in order to meet her needs. No one would question our intentions. We would be able to access our private insurance and wouldn't have to take our case through the DHS office for Cancer--I am sure Medicaid would just pay their share of the bill.

No one made me walk ten miles of red-tape when my oldest son had a terrible accident. They just took him by life-flight straight to where he would be treated and helped him. He was even offered a school IEP without our even calling and requesting an evaluation meeting... During his long recovery a Teacher came to our home and I never even asked for one... Transportation and special care for his return to school was all taken care for "FOR ME" as everyone knew we were suffering from Grief and stress. People somehow found the Authority to make decisions and I didn't have to bring his accident records in order to obtain the help he needed.

Why was that so different?

It's hard to understand how the system that promised we would have access to the needs of a hurt five-year-old would be the same system that so many parents needing support to keep their biological children must use. Frankly, I understand why so many biological parents fail. We are just a file--just another family with just another child. There is no such thing as individual care when using a Government service. There seems to be no authority to demonstrate common sense or even compassion. It's a Cattle Call and only those able to be in the front of the pack can access what is most needed.

We will be able to eventually access the services our daughter has needed for nearly the entire 6-years we have loved her and been her parents. Eventually, with each new Open Case, New Service or New whatever we might find something that will help her. Right now however we are wondering where the compassionate government so many want all of us to depend on actually is?

I dread the day that we are all stuck in red-tape, walking in grief and unable to access what someone we love needs before it's too late. I dread the day when the nature of the needs are judged on the unwritten scale of importance. If the "government" is where people want to have faith and medical care--God Bless us All...

If this is what America wants for All of us I sure hope my future medical needs are the ones that are glamours and demand positive attention and not that I become demented and have behavior problems...

Friday, October 24, 2008

Red Tape: Always Starting Over

I am so sick and tried of red-tape. Actually, I expect there to be a certain amount of paper work and a few hoops to jump now and than. I also respect the fact that in some cases people are required to go through a lot of red-tape to accomplish some things. I didn't have one tiny bit of trouble going through the Adoption Home Study red tape. And I think anything that is funded with tax dollars needs to have a little bit of paperwork and some questions answered.



The problem seems to be however, that every time our family needs to access services we have to start our "case" or "file" from day one--and appear to be the only ones responsible for record keeping. HIPPA hasn't made anything easy for dealing with an ongoing "Life Long" disability. I have signed release after release of information for Makala's doctor--Not one time has he been asked to actually provide any information.

When she was placed in Residential Treatment the doctor who has treated her and provided therapy at least once a month for years wasn't even contacted. No one called him to ask about her medication plan--no one sent for records and there was no communication during the whole 3-months she was placed in residential treatment.

I had made it clear on her admissions that the "medication" management was one her doctor and I worked closely to monitor and we OFTEN made changes. Her doctor had advised me that it may be a long road of "trial and error" before we figured out what medications and combinations would help Makala most... Not only was it important to find the medications that worked, but to also find the delivery methods and times.

When we left her at that Residential Treatment facility the importance of her medications and the fact that we had not found the correct medication combination, delivery method and timing--was CLEAR. So to, was the fact that as her caregiver I was responsible to educate myself about the side-effects and look for anything that might cause concern. It was clear that meds were really not effective yet in helping Makala... and that I had been in nearly daily contact with her doctor for years...

The residential treatment center just wrote down her "current" medication plan... Ordered medication to fill this plan and for three months stuck with the medication plan I had made clear was still on "trial and error." Her doctor was never contacted and he never received my signed releases for his records. He was just left completely out of the loop for three months and the treatment center left me to be the one to catch him up to date three months later when she was released.

I guess, I wouldn't have minded as much had anyone actually taken responsibility for the simple fact her medications had not been firmly established. I suppose I was ignorant to assume that the initial meeting with the treatment center Psychiatrist meant he would assume the role of the psychiatrist I had provided when I was her primary caregiver.

Instead, during the three-month stay at residential treatment she was given the medication combination, amount, delivery method and times she was on when she was admitted. The staff simply robotic-ally stuck to her admission medications and even with the fact I made it clear we had not found the right medications No one seemed to care. No one took notes about what kinds of medication side effects they may have been seeing. No one even considered if her meds were working or if there might be different things that needed to be tried. She was just treated for three months with the Trial and error plan she had when she got there.

I might not really care if it hadn't lead to actually damaging her more!

No one noticed that in the course of 90 days she gained 20 pounds! You see, when I checked her in I made it clear that her medications might cause metabolism issues and we needed to be very careful about sugar and carbs. It was important at home that we be careful--her doctor had given me several recipes to try... I also knew to look for certain physical signs and what to do if I saw these signs. I understood what to look for in case she was having Low Blood Pressure and I knew that I needed to let her have "Chips and Soda" if it appeared she needed it. As her caregiver it was my job to balance the sugar thing with the low blood pressure issue and make a judgement call.

She gained 20 pounds because at the center if someone didn't Like Dinner they could have a Peanut Butter and Jelly Sandwich instead. Sugar and Carbs. And even though I also made it clear at admission she had eating issues from the fact that she had gone without food for long periods of time from birth to the age of 4 years old. She had hoarding issues which we had seen great progress in helping her overcome. No one at residential treatment seemed to notice she has a trick.

When the plate with dinner is set she will take a bite and let it be known she doesn't like it. Because it isn't okay to not feed a child the fact she doesn't like what she was given means the caregiver must find something. When she is offered something else she will eat for dinner by the time it is prepared and given to her she will have eaten the original food served. If the caregiver notices that she has eaten what she said she didn't like she will say she got hungry waiting for the replacement food and still wants it.

The food was made--she wants it and because her early life taught her to eat as much as she could when there was "the chance" to eat she learned to eat as much as possible whenever there was food to eat. I am sure my little girl doesn't even know why she needs to eat as much as possible or where these tricks she has came from. I consider knowing this about her part of my job to understand and to help her understand as well.

When it comes to her medication issues while at residential treatment for 3-months the weight gain was actually the least of my concerns. Especially when we finally got her out of there... and noticed one of the MOST ALARMING Known side effects of one of her medication. Abilify. Apparently, during over 90-days in the care of the "professionals" no one paid attention to the fact that she was drooling all over herself--and had developed a tick! A clear twitch of her head to her shoulder with drool poring out of her mouth! No one noticed? No one looked at her admission paperwork to see that the medication was new--had side effects and that she was so clearly twitching and drooling it couldn't be missed!

No one saw that she was showing side effects of a new medication--and no one researched the fact that these side effects were so important to notice because if the medication continued these effect could become Permanent. Forever twitching.

...the services are fine but the truth is someone needs to ACTUALLY care... Instead I only see the fact that no one cares enough to realize that in our Home her File is Always OPEN and we don't get to start all over every time a new service is needed. For HER everyday is an open day and every day is a chance that someone might care enough to help US--OUR FAMILY--help her live her life with the forever damage to her brain and HEART from loss and trauma.

Here we stand again in limbo and next week I have a meeting to OPEN her request for volentary services with our DHS office. I opened the request when we brought her out of residential treatment a year and a half ago... Not sure when or why the request was closed and no one ever called or wrote to me and told me the case was being closed.

The new case manager would like me to bring the information about her history... I will bring all the Boxes of papers and He will not look at any of them. Instead he will ask questions and write down what I say at that moment. If I forget one or two things in the past nearly 6 years it will FALL off her record. If I emphisise one issue more then another--It will be the ONLY need written down... I have to emphasis each and every issue equally next week and make sure the Complex detials about Her, her life and everything that has ever happened is included... Otherwise the NEW Case will be incomplete and when I attempt to get it added later I will be told that I didn't mention that at Intake.... It must not be a real issue.... otherwise I would have mentioned it...

...idiots---ITS A CYCEL of Behaviors so--what is an issue now may be something else in an hour....

It is HARD to be where we are today. We love our little girl so much and we seem to be the only ones who keep her file open. If anyone really cared they would not insult our wisdom about her risks and needs. If anyone really cared they would understand as well as we do. We wouldn't even need to spell it out if we actually had the kind of "back-up" and so called "wrap around" services we were promised 6 years ago as we waited for the chance to go to committee....beliveing someone had cared about our little girl enough when they found her and saved her to actully notice her pain then...

We understand that our Story is one of the Rare stories. But, for those living the rare story it is real.


Wednesday, October 22, 2008

Please Pray for our Family

It's been a very hard morning for our family. At this time I am not going to share any details except that for the safety concerns of all family members we have been forced to need separate living arrangements.

Please pray that our family is able to navigate the days ahead and make the hard decisions. Please pray that God is in command and guides us to the way HE has planned.

Please pray that we have the support and guidance of the professionals (not the ones provided by the state) and that everyone in our family is safe, and the future is managed in the most positive way possible.

...not the way we dreamed, imagined or believed when we started... and we have few choices.

Thursday, October 16, 2008

MyBlogLog.com New with Me and My Neighborhood Page

One of the things I enjoy the most about blogging are the Social Networking communities. This post is a full page widget offered by MyBlogLog.com. As soon as a blogger has set up an account creating a page like this one is as simple as copy/paste of some code and placing it on a New Post...

Here's What's New with Me and MyBlogLog.com Neighborhood!

Tuesday, October 14, 2008

Being told was difficult...

It's been nearly two weeks since our last visit with Dr Joe and it's been a little hard for Makala. After more than 4 years of monthly (and sometimes twice a month) visits at our last appointment Dr. Joe let Makala know exactly whats going on...


I have often wondered why so many social workers and therapists seem to think there is some reason a child--person, shouldn't be told "What" the issues or problems are? As if not telling someone they have "something" to overcome would help.

I know that at some point I would want to know why I was being given medications, and had appointments every time I turned around. I don't see how it's possible to process and deal with a situation if the specifics aren't known.

Recently, someone who claimed to be a social worker left an anonymous comment on this blog... Something to the effect of how damaging "Labels" are for a child... I didn't publish the comment because clearly this person doesn't get it. Fatal Alcohol Spectrum Disorders FASD, isn't a Label and it won't just go away no matter how much Social Working anyone wants to try and do.

For Makala FASD is just a part of her life story and as hard as it was to hear this information Dr. Joe was able to let Makala know her Label is one she can manage and overcome. His way of informing her was done in as positive a manner as could possibly be done when you need to tell someone they have a difficulty caused by the fact they were exposed to alcohol before birth.

Makala had some difficulty for a few days after being told the facts of the matter. Mainly, an increase in some of the behaviors that cause her the most trouble. We have talked about how she feels about what she has learned. She has Anger that something she didn't do has caused her this extra problem in life.

Our talks have made it possible for a new thread of trust to be formed between us. Confronting those things that are difficult for her is something she is willing to work on and interested in understanding. Her "Label" is more then a word--it is her reality.

I have often wondered why so many parents and therapists think leaving the child in the dark about the facts is a healthy course? Most problems are not managed until someone accepts the actual truth. I'm not sure what benefit there is when a child isn't given the truth.

It hurts to hear and would hurt no matter when. Knowing at this point in life only means that she has her parents and doctor to help her during the years ahead. I appreciate the input from the social workers and county mental health people... I know they have their reasons and methods but the fact is that Brain Damage isn't a label it's a reality--a big reality for a little girl for my daughter...

Our lives are waaaaaaay more then the "Case Studies" or standard protocol would have the educated professional pattern their methods. Parents are not outside educated providers--they are the Best Advocate for their child. We don't follow your rule books because we love our children and know their needs better then the text books would ever impart to the over eager do-gooders.

Makala is not hidden in a room upstairs and walking in a life unaware of the content of this blog. She lives her life and is well known in the neighborhood, community and just about anyplace she goes. Her name and picture have been published in the news paper for her Remarkable and wonderful moments of talent... People can't help but, remember Makala when they meet her!

It just cracks me up when anonymous, so called social workers suggest that life on the Internet is any different then the life we live each and everyday. People peep all the time and we are all who we are no matter where we are. I would much rather teach my children that there are people peeping--good people and bad people... That Life is NOT invisible--and we all have problems and labels.

It's always better to know what your problem is and give it a label rather then troll around the Internet thinking there is actually someplace anonymous where life is somehow different. Thanks for suggesting that the Internet is something different the Every Day of life in general. I choose however to teach my children that we are who we are and the world is not a place we can just wonder around incognito.

I suppose the next comment from a well meaning person will suggest that we just put a paper bag over our faces when we go out the front door? After all every time we do people see us and we don't know who might be looking...

Wednesday, October 08, 2008

I was a big yellow sticky note at an IEP Meeting

If I thought evaluations and annual reviews for an Individual Education Plan (IEP) was difficult for a child in grade school-- yesterday I learned the whole process for a child in middle school is like a trip into the Twilight Zone!


I have always appreciated when parent advocates, mental health case managers, or just about any other live human is willing to attend the IEP with me. Now, that I have a few under-my-belt I completely agree with the advice that parents should NEVER go alone. There is just too much paper and too much "Administration-Speak". It's impossible to leave one of these meetings without things being a blur. Parents have very little time with the "so-called" concerned IEP Team members before, Duty Calls and one-by-one they duck-out glad to have another meeting over.

When my friend shared that her son, an 8th grader, was about to have his IEP Annual review I was more then happy to help her go over the IEP paperwork from last year and she was "skilled" enough to drive to the office and get a copy of the IEP she would be asked to sign this year! Between the two of us and a stack of Big Yellow Sticky Notes we had a few days to go though both plans and make notes... Actually Polly, had time to make several Notes and write a Second Blog about the IEP.

Following my own advice (that I was given and learned the hard way about) I urged Polly to consider bringing her own "Parent Advocate" or a few to the meeting. It seems the majority of the Parent Advocates for Clark County, Washington have burned-out or retired as all of the parent advocates on our resource list are "No Longer" advocates...

I am not usually excited about entering a middle-school building as it brings back my own childhood memories and the buildings always smell like prepubescent body odor. The only place I can imagine worse is a jail or perhaps one of the Psych Wards Makala has spent too much time. But, For my FRIEND going with her just to keep notes was an Honor. Plus she got me lunch after the meeting which made it fun time for us. Even though, the actual meeting wasn't worth the amount of procedural ordeal.

I fail to understand why a meeting with five school staff members needs to be called to go over 3-5 ACTUALLY WRITTEN IEP Goals... I guess, it is just too simple to communicate with parents by way of letter, phone or email... And there needs to be 5 Educators in the Room to change the light-bulb -- I mean, witness the disclosures and signatures. Oh, and the 8th grade boy we were all talking about is now of age to attend the meetings as well...

I was informed sometime ago that in the state of Washington children the age of 13 years old have "rights" to be part of their education and mental health plans. I have not been very secure in knowing that my daughter will be able to decline services, make mental health decisions (What an Oxymoron!), and participate in the IEP meetings... What I was not aware of until attending Polly's IEP Meeting for her son was that children had all these rights at the age of 13-years-old and the parents have none.

I sat and took notes as the Down-talking started and one-by-one Polly looked over her son's IEP and all the Big Yellow sticky notes. With nearly each and every issue brought to the attention of the educators I listened (and tried not to barf) to the Educations start the Administration-Speak and have a glimpse into the future of what I will soon be dealing with myself.

There was but, one or two concerns my friend had about not only the IEP but, her sons ability to endure a day in the HELL I like to call Middle School... It's hard enough when you are one of the "In-Kids" but, it must be like being boiled in hot wax when you have Asperger Syndrome. Might as well put a target on the poor kids back. He surely isn't ready to deal with many of the social situations... Not to mention ready to MAKE DECISIONS for himself about everything.

Polly asked, "Why is he in Regular Physical Education -- PE, when we all agreed last year he should be in Adaptive PE?"

The Administrators and educators were very quick to point out: "He Wanted to Take Regular PE, he selected that class himself!"

It was pretty sad (in a, I can't believe these people kind of way) when the Team Leader looked at my friends son and said, "Right, You wanted that PE Class?"

Of course, within just a few moments my friend learned that her son didn't even NEED PE as his requirements had been completed... Apparently, none of the people who know how to do the IEP meetings with such skill ever bothered to let her son know this fact!

When he was asked if he knew he Did NOT have to take P.E. this term? His Answer was complete Manifestation of his Disability -- Asperger Syndrome and he said, "I heard the Governor of the state requires 2-trimesters of PE."

Apparently only the Idiot parents understood how this little boy isn't ready to be making all his own decisions and how horribly disgusting it is that he wasn't helped more when selecting his classes... Apparently, the ONLY PEOPLE who do not get it are the trained people our Tax Dollars pay. Their primary concenr appears to be calling big meetings--over what should be common sense to anyone who actually cared about the child more then the 200 pages of dribble parents are presented with to make it look like they did their job.

We may just be moving when Makala turns 13 as I can only imagine the choices she will make about her education and mental health... I might as well rent her a condo and pretend my job as a Parent is over after seeing what it means for a 13-year-old to have the right to make their own choices.

I don't see how the state of Washington or any other with such laws, came up with this idea. Why on earth would the state empower Disabled Children to be responsible for their education and mental health needs? The fact is that for some of our children we simply PRAY they will be ready to manage through life when they become Adults... We hope some of our children can make a choice of which socks to put on by the age 18. Or make choices the help them keep a minimum wage job.

In Washington children make their own decisions and this Includes disabled children. I just can't wait until Makala finds out she CAN Choose to NOT take her medication, or choose to check herself out of therapy... Oh, and just as soon as Washington allows her to Choose I want it to be clear her choices will NOT be my Liability if a disabled child can make all their own choices then

WHAT DO THEY NEED PARENTS FOR?
I will be doing a lot of research on this subject during the next few years...

Saturday, October 04, 2008

Holy Alphabet

I usually don't take the time to read the FW: emails I receive from everyone who has my address handy... If I did I don't think I would have time to do much else in my day. This morning however one of my friends who faithfully forwards words of inspiration to me sent me this. And after the past few months of my own life I am glad I decided to read it... as with so many of the forwarded email content I recieve I have no idea who originally wrote it.


'I AM Too blessed to be stressed!' The shortest distance between a problem and a solution is the distance between your knees and the floor.
The one who kneels to the Lord can stand up to anything.


Although things are not perfect
Because of trial or pain
Continue in thanksgiving
Do not begin to blame
Even when the times are hard
Fierce winds are bound to blow
God is forever able
Hold on to what you know
Imagine life without His love
J oy would cease to be
Keep thanking Him for all the things
Love imparts to thee
Move out of 'Camp Complaining'
No weapon that is known
On earth can yield the power
Praise can do alone
Quit looking at the future
Redeem the time at hand
Start every day with worship
To 'thank' is a command
Until we see Him coming
Victorious in the sky
We'll run the race with gratitude
X alting God most high
Y es, there'll be good times and yes some will be bad, but...
Z ion waits in glory...where none are ever sad!





Friday, October 03, 2008

A Marty Moment

There is one thing that I have learned parenting two special needs children -- Personality goes a long way!

The truth of the matter is that Our little Marty may in fact have as many--or possibly even more significant needs then his big-sister. The difference between my (biologically related to each other) children is 100% all about Personality. Where she is an in your face, attention seeking, overwhelming personality... He is a shinning spot of joy and has a way of putting a smile on any one's face no matter what the situation... Consequently he is given far more latitude.

We enjoyed another special Marty Moment yesterday...

He came home from first grade holding a wrinkled paper... And told me that he just knew he was going to be "grounded" until his is 25!

The paperer was an "Agreement" made with his teacher... He had not shown good school spirit because he "Spit" on the ground when he was walking out to recess.

The teacher asked him to think of a way he might remember to not spit again in the future...

His answer: "I will pretend I have Marshmallows in my Mouth."

It's hard to not smile when you read this--and I can only imagine his teachers thoughts to such a creative and Marty kind of answer.
*



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