Wednesday, December 31, 2008

GoodBye 2008! Finally!

I can't recall the last time I was so thrilled for the New Year to finally be here! Actually, I think the last time I was so excited about another year starting was when we rolled from 2002 to 2003 and my husband and I were anxious to start the transition of our children from their Foster Home to their Adoptive home...



I was excited about that New Year as we got ready to take the drive 300 miles south on the second of January... It's hard to believe that was nearly 6 years ago! My how the time passes fast and slow depending on the way I look at things.

Today it's clear I feel younger than I did six years ago when I was approaching 40 years old and the reality of the fact that we had been blessed with the placement of a five and one year old hit me... and I had to relearn all the in's and out's of diapers. I find that I am every bit as able to keep up with the fast paced life of my soon to be Seven year old little boy! I didn't expect to be placed with such a little one...

Seven!? How on earth did he go from that sweet little bundle of joy to this hurricane of busy boy he is today?.. It's unbelievable to me how quickly my children grow up and I am still every bit surprised by this phenomenon 25 years and 3 months after the first day I was a parent. Blink and they are running--blink again and they graduate, move out and go off to college... another blink and I find myself dealing with the Typical affront of the adult child learning that parents are imperfect humans with no specific special powers.

The year 2008 has been a humdinger for me on the PERSONAL level and a year I can't wait to kiss off and try to put behind me! If I could define the year by one word it would be FROZEN and our record snow for Christmas was the Cherry on the top of that Sundae... Overall 2008 was a year with very little advancement in the causes of my life with one roadblock or setback after another.

I will remember 2008 as a frozen year too for the odd events that took place for me personally. On most fronts little ground was made which in my world is difficult for me to cope with! The IEP for Marty I asked for over a year ago was "Snowed Out". And it's difficult to love someone who takes one step forward and three steps back every step of the way--but, that is our beautiful Makala. Overall, she is a survivor and oxymoron of extremes.

At the end of the day all we know is that we are the only ones who love her as much as she needs to be loved... If we were not here for her we can't think of anyplace else she would be understood the way we have grown to understand her. We still see possibilities for her future but, understand that she is so vulnerable that over protection might be the greatest gift to give her for the next several years.

It is horrible to see the results of fetal alcohol exposure and how much it really hurts someone who didn't deserve it. When she was little the effects were hard to detect and as she becomes older they are easier to see. Or maybe it's only easier for the people who love her to see? Half of her behaviors considered to be such a problem in the world are only because she is just a little girl...

I learned that it's best to consider an FASD child as being emotionally and social developmentally half their age... I see this as true for Makala. Marty recognizes this fact too now that he is nearly seven. At most times our beautiful Makala is about five years old. Even though she can speak, move and mimic anyone of any age... She is a wonderful actress playing parts during the course of everyday. My wish for her world would be that she felt she could just play herself.

There is a chance she can overcome these strikes she had at the start of her life. She is a person who just needs more time to repeat the steps and remember them. I think the world moves too fast for her and that she needs to have the time to be the little child she never had the chance to be. She is at an age and being sent out into the world with children at the same age--where peer pressure and risk taking becomes so huge. She has no boundaries and without someone watching her every action she would not have any skill to not be drawn into anything. She is a five year old walking in the skin of a nearly 11 year old. And she can't wait to grow up.

She could be inspired to directions that would feed her needs and give her a foundation for her future. In reality she should be home and having that time she never had when she slept in shopping carts or the cabin in the woods. Watching houses to see if there is anyone living there... and finding everything inside that would be needed for a few days of survival. Her memories are nothing like the memories most of us can recall. There are no pictures of her before the age of almost four... As if she showed up one day walking and talking... I wonder how those early years really were? I suspect I should be happy I don't know? I am sure that even without her memory of those early years they were not the same as what most of us would want our daughter to have experienced.

Thank goodness 2008 is over and the snow has melted. I never really thought that I would hear myself say, "Thank God for the Rain!" But, as our family starts 2009 the rain is a wonderful change and sign that maybe this year we can see a beautiful spring!

Tuesday, December 30, 2008

Tori Before and After....

Tori in March when I drove her to the University for her Masters Degree something-a-rather... and shortly after she started her first real diet...







Tori (and Makala) Yesterday when I finally couldn't take not seeing my beautiful little girl anymore! Wow!


Another picture of the Beautiful Tori!



Monday, December 22, 2008

An Angel

video

It's Official, 2008 was My Year Frozen

I can now officially proclaim that 2008 was a year spent Frozen! As my family awakes to another 3-5 inches of snow, every aspect of normal life is paralyzed. The airport, Amtrak and Greyhound transportation has been cancelled for the 3rd or forth day... Main interstates are closed, chains required, events cancelled. We have no hope of improvement before Christmas.


I have a few more pictures to add to the one's on my current photo show. This morning our kitty Katz was stir-crazy and banging at the door. He wasn't out for long. The boys are currently digging out the driveway... We have been housebound for three days... Daddy can't take it much longer -- he is bouncing at the doors!

As I re-plan everything the kids are disappointed our big party was cancelled this year. At this point we will be lucky to make it to the store one more time before Santa comes for his visit. Marty is writing an Email today since there is no way we will be able to drive to the mall for a visit...

It seems we may have one of those ODD Christmas mornings -- or should I say seasons! The drive to see family includes crossing two-rivers and driving through Portland... With around the clock news and all the traffic cameras WE will NOT be venturing out into the world of CRAZY!

Sometimes it's nice to be isolated during the hurry of the holiday season. This can't be economically helpful for our shopping season. I was lucky to even make it to the post office to mail gifts to family far away.

Thankfully, I told Tori to stay put last Friday otherwise there is no way she would have been able to get back home. Right now the temp is 24 degrees and snow is falling AGAIN!

A metaphor of my year! When I reflect back over 2008 it can be defined by one word: "FROZEN". In just about every category and part of my life I will consider the year to have been one filled with Frigid Attitudes, Ice Cold Support, and frozen progress. My year was filled with slips on ice and closed roads. With several slide-backs. The chains I have had didn't fit and it seems I live on roads not big enough for the snow plows or gravel.

...so, It's official 2008 will be considered the year my life was most frozen... The only thing I am thankful didn't freeze is time! Thankfully a new year is soon to arrive and I can hope for a thaw

Sunday, December 14, 2008

It's hard for me to ASK...

I will be happy when 2008 is over and a New Year starts. For me personally, 2008 will go down as one of the most difficult years of my life--emotionally. On the positive side, these kinds of struggles in life are often what a person needs in order to understand--even if it is only understanding something about ourselves.

I think as much as 2008 will be a year I wish had been different, in hind-sight I believe I will look back to realize the lesson I have learned this year is that sometimes everyone needs something and sometimes we have to learn how to ask...


It's hard for me to Ask for what I need... or for help, money, a favor, or even a hug. I don't know why? Or if this is just something I notice Only when I NEED a lot. I,m not sure if it's pride -- or fear of asking for too much. Or if it is because I don't want to give others the chance to let me down. Or, worse--that I don't want to "owe" someone back for the fact I asked let along received something I asked for.

I tend to "WANT" those around me to "Notice" I need something and offer on their own accord... because they care. I feel very special when someone makes a direct and specific offer to meet a need I might have. When this happens I feel like I matter. The direct and specific offer makes me feel noticed and as if someone took the time and paid attention to consider "What" would help me the most.

It must be some kind of passive-aggressive nature? I feel frozen when people around me notice I am in distress and offer to help by asking me to Name my need specifically. I don't want to ask for more then someone wants or has to offer. I don't want to beg or take more then someone has to give.

So, when I am in Need and forced to Name or ask specifically I tend to ask for less then what I really need. I appreciate what I am given which wasn't enough and feel guilty as if I had asked for and received more then I needed in the first place... Why?

I think that most of the time I don't even notice I had to ask--and asked for less than I needed because usually I don't need very much from others. Usually I am the one who "Notices" someone has a need and I offer a specific thing I can to help. I take joy in meeting the needs of others and consider it to be one of the positive things about who I am. I never expect a pay-back or think someone owes me back and wonder why I seem to think other's might feel different?

My problem about asking usually isn't a real big issue in my life when things are going well and I don't need for much. In fact, I thrive when I am the Meeter of other's needs and taking good care of myself. This problem I have only seems to be a problem when I NEED A lot or more than usual for a prolonged period of time... or have needs that can't be taken care of at all because there isn't a specific way to meet the need.

This is when I seem to fall apart.

Because, If I can't meet my own needs then I don't have the ability to take joy in meeting the needs I see for others... so it becomes a double loss. And then someone sees me in distress and dares to ask me, "What can I do to Help?" and I have no clue what to ask for. And sometimes I feel hurt no one noticed and just offered without making me Name my need specifically... I will accept and appreciate whatever is offered and just find it so hard to ask.

In 2009 I plan to try and make a better effort to learn how to ask for what I need before I find myself falling apart and frozen with no idea what to even ask for.


Sunday, November 09, 2008

Silver linings

I believe that when the dust settles everything happens for a reason. I am also still clinging to the notion that God won't give me more then I can deal with...

After our recent "crisis" at home our family has "rebounded" to a new normal and we are working out the "long-term" issue, plans and goals. As tired as we are when things settle down it's easier to face the future.

The odd thing I have noticed in my life is that when I become too consumed by ONE of my life problems--God has a way of distracting me with something else.

So, the events of this past week shouldn't much surprise me!

It seems there has been a HUGE problem with the server hosting my Actual Website--the one I have worked hard for three years! It appears all of the Files that Make the site Show Up were "deleted" from the server--leaving behind all the "content" but not much way to find it all without the files connecting it together and showing it on the Internet.

Needless to say, I have been in a stooper. Dealing with this NOT Life and Death drama and fitting in the catastrophe between the worry of parenting a child in crisis. I am amazed I have not curled up in a ball and just twitched for a few days... Maybe I will when all the dust settles?

So here I am at a crossroads--with several sets of Problems to manage and overcome. In my personal and family life coming to terms with those things we can't control and making decisions for the best interests of everyone. At the same time "personal-professional" devastation!

The silver lining--is that the events of the past few weeks have offered both our family and my work with the website a Clean Slate and a chance to re-think how things have been put together...

At this time Anna is not in a panic, nor crying but instead looking for the Right New Way to put things together and sometimes it's not so bad to need to look for the New Right Way to do things....

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.
*



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.


Reference:


Related Links:




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...

Related Links:







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!



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