Sunday, August 31, 2008

Please Watch and Understand!

There is NO SAFE Amount! Please take the time to watch this video and if you are the mother of a daughter ready to learn about pregnancy please have her watch as well.



Saturday, August 30, 2008

Better Late then Never

If you were reading my last blog post I ended by letting everyone know I would be back after the bedtime routine. I guess, I should have said in a day! It seems this is how life can work out when family is first and children have special needs.

Ironically, we had a rather RAD kind of night last night and a full day of it today so what I had planned to do 24 hours ago is finally being done!

Now where was I...?




Oh, that's right I was getting to a point I wanted to make and in the last post I was talking about MY Visit with Our shrink. My visit because as important as it is for me to take care of my families needs if I don't take care of myself too I won't be able to do a thing for anyone.

Parenting special needs children is a 24 hour, 7 day a week commitment and can become a very isolating expereince especially for the primary caregiver which in our case is the stay at home mom--Me.

Parenting a child with emotional and behavioral special needs is even more isolating as by the very nature of these special needs our children can bring unwanted attention to our families. I have accessed every level of service and each deliver just what they can offer which is never everything. I have learned by experience that often when intervention services have been provided and there is nothing more they can offer, they end by pointing at the weakness of the parents as the reason the service didn't provide what was requested in the first place.

My last adventure into services lasted about one year. We were offered the Crisis Level of mental health services offered by our county. The highest level of service provided. We entered this program after our daughter was released from a 3-months stay in a Residential Treatment Center -- RTC. Our only was request was to find and access Respite providers.

We were given "in-home" therapy session most of which were frustrating and set a poor example for the child receiving care. As I believe our Case Manager was at least an hour late for every single meeting and in some cases never showed up or called. It was just a wonderful way to teach a child responsibility to have that child waiting impatiently for the case manager to keep their appointment...

We did have some form of respite during the year. On Saturdays a "person" would come and pick my daughter up and take her out for a couple of hours to have Fun... Which in one way was nice we had a break and could pay attention to little brother--but, it felt a little strange to have someone we don't know and never met before drop by and pick up a little girl with our blessings. Most parents don't just pack a kid into a car of a complete stranger and say, "See you at 2:00! And to be honest I find it hard to understand how this is a good way to provide for a child with RAD Disinhibited type!

This is Not Respite and if it is then It wasn't what we were looking for. To date I have found that no matter how I plan to pay for it, by medicaid or out of my own pocket the RESPITE funds we are receiving in our Adoption Assistance Subsidy are great--But, we have not found a way to spend it!

My hope was to find a way to access people who have a basic understanding of the issues and some relative training that I could call personally and hire to provide a break for our family. Sounds real simple to me. It doesn't exist. Or at least not where I live.

There are multiple ways to hire nanny's, babysitters, and child care providers for any kind of parent. However, children with special needs require care from someone who will not undermine the "system". It isn't possible to find these people in the general ways and one would have thought that an Adoption Assistance Subsidy would pay for services that are specifically available. That is usually how the government funds things--Right?

My conclusion is that these payments being made to us for services that are non-existent makes it possible for the paying state to say they have provided Respite for our family. After all they are giving us money so the service has been provided. They can mark a little check box and report to the federal government that x numbers of dollars have been distributed for the specific service of Respite for the adoptive parents of special needs children.

Their reports all look so nice with all of these dollars going to provide a post adoption support service. The state has done their job as mandated by the federal government under the Adoption and Safe Families Act -- ASFA and everyone has nice paperwork to prove it!

Except who is reporting that they have been paid to provide the service? I want to see where these services are being paid for, and who is providing them and claiming all this adoption assistance subsidy money the state tells the federal government has been paid for the specific need of Respite. I want to see this because I want to pay that person to provide me the respite I can't find to pay for!

We have lots and lots of funding sitting in our bank account right now, paid for by the state for Respite and reported to the federal government as having been provided... We would like to spend that money paying for that service.

Which all leads a parent to wonder what on earth can we do to relieve the non-stop demands for just long enough to remember who we are?

When you start talking like that with your service providers it just gives them more to point out about how the parents are the ones with problems and if they got help the issues would be more manageable. And the Isolation is even more valid for those families.

After awhile it is easy to see several by-products of the pathetic child mental health services programs not only for those who adopt special needs children but, for the ordinary family who may have a special needs child as well. After all when the service does not cause improvement or change then it must be the parents fault. I would guess there are many families living this cycle and those who are not adoptive parents cope and move forward with undermining of their confidence or end up in situations of dealing with child protective services as a family "at risk." We have probabally adopted children who were parents in this situation at one point--maybe, Right?

While many of the adoptive families are standing there saying they have subsidy funds for a service not provided. The services offered don't meet the need and the parents are pointed out as the reason for the problem in the end. Adoptive parents are pushed even deeper into isolation and are enticed by those "fringe" treatment programs and so called experts who offer something that is touted as the only cure and are very happy to accept the adoption assistance subsidy money plus anything else the parents can afford.

It isn't surprising that so many of us eventually find these less then ethical alternatives for treatment that lack any empirical evidence to be considered even acceptable. The problem is that some of these fringe treatment providers are operating on what I believe is a "cult" approach.

In the area of Reactive Attachment Disorder -- RAD, the RAD Cult has been building it's base since the late 1980's. With any cult there needs to be an army of recruiters and the RAD Cult targets the parents to do this dirty work.

In future posts I will be exposing the methods and the tactics that are being used to bring desperate parents to a point they are willing to consider therapy and treatment for children that in many ways and cases is not much more then another form of child abuse. One would ask how a loving adoptive family could actually accept some of these treatments and not see it for what it is... stay tuned as I can tell you how this happens and what is going on in order to accomplish the goals of the RAD Cult.


Friday, August 29, 2008

This has Nothing to do with YOU....

I don't hide the fact that I am the mother of a child with Reactive Attachment Disorder -- RAD, and Fetal Alcohol Spectrum Disorder -- FASD... It is just a part of the story and as much as I don't like being in this position, it is the position I am in...




I have been the mother of a child with RAD for nearly 6 years now... (is that all it has been because to me it seems like a good 10 or 20 years at least!) There are few RAD symptoms I have not seen first hand and had to handle as a mother. I have not met many other RAD moms (in real life or online) who can tell a RAD Mom tale I haven't lived first hand... and there are very few RAD mom's who have a "better" RAD tale then I have... (she is only 10--give it time I may top them all!)

I know the isolation, lack of understanding, feeling of being the "unloved" mother... I know that the teachers think I am nuts to bring the subject to their attention after all my child is just fine "at school" or at least during the times she has been at school. Of course, my RAD child has not completed a full year of school without an interruption for the occasional Psychiatric Hospitalization, Medical University day treatment program, a stint in one of those swell Residential Treatment Centers, and my good faith effort in home schooling... She will start the 5th grade in a few days--at yet another day treatment program. Which will mean that for the 5th year in a row she isn't able to attend classes in a mainstream educational setting...

I am about 99% sure that sometime around the Holidays the "New Transition Plan" will be presented. Her "negative behaviors" will not have been seen in this environment and therefore she will be ready to return to a modified mainstream educational setting. The meeting I am asked to attend will include an army of well-educated professionals and a strong undertone that "Mom has the Problem".

After all my experience this will be nothing new to me... and I won't even bat an eyelash in fact I would be more surprised if this isn't exactly what happens... Unless I am proven wrong because "someone" might read this blog and do their best to make this prediction just another arrow to aim at "The Mother".

But, I digress from my original motivation of this Blog post, and am amazed at the satire of my own words above.

This post has been inspired after "MY" shrink appointment with the same doctor treating my child--who does Not bill the state, or compromise to the restrictions of becoming an "In Plan" provider for our personal medical insurance (which really isn't that bad)-- It was another very productive hour in my life of endless hours just being the best mom I am...

My 6 and 10 year olds know very well that Mommy has had some very major issues hitting right and left which for ONCE have little or nothing to do with either one of them... I have been an official patient of the shrink, my daughter has been seeing (for 4-years) only since this past April... However, I have sat every hour of my child's therapy on the cozy couch right with her... There have been many hours I have paid 50% of his billing fees, so--he knows Me very well.

When we were to leave this morning I heard the grumblings of the ordinary RAD child who thinks each Dr Joe visit is all about HER... The drama was about unfold and you know when it is about to happen after my nearly 6-year journey... It was interesting to see the look on her face when I said, "This appointment has Nothing to do with YOU, honey....This appointment is FOR ME."

She responded with a gasp and said, "oh."

"In fact" I added,

"This appointment doesn't have anything to do with you my dear. While you may feel that you are the only one around here with problems, or the only one who needs any special help to overcome them, you are not the only one with reason to need to see a Shrink."

The expression on her face was -- "interesting," for the lack of any other way to describe a child who has inconsistent facial expressions for the circumstance or mood she is in... Her facial expressions I have learned are not a reliable indicator of any thought inside her head so... Interesting is the right word.

At the appointment I requested that she remain in the front waiting area with the doctor's wife (office manager) And, as was to be expected she didn't really much like that and I asked little brother to come in with me. There was going to be an argument if she had her way--but, again I informed her that this was MY Appointment not hers and I intended to make good use of it and had No plan to break up bickering or put up with any interrupting... and added my daddy's famous last word, "PERIOD."

Our Doctor overheard me.

And, backed me up when the first open door to the inner office took place... He told her to please go back and sit in the front office it was, "Moms appointment today."

(MY Hero!)

....here I am at the End of this Blog Post and I have YET to get to my original motivation... I tend to write long. I suppose this will need to be one of those Two-Part blogs and once the bedtime routine is over I will post the rest of what I actually wanted to say today.




Wednesday, August 27, 2008

What is this Blog all about?

If anyone has read the beginning of this blog it might appear to be raw--and not well organized. Something that I do go back and tweak a bit from time to time. This blog didn't start as any grand project--nor was it ever written to attract attention, fame or even the occasional income opportunity.

This blog was started when in the matter of an instant I became the mother of two children...who were born to another mother...




It is getting close to my 9th wedding anniversary to my Real Husband I call him this because I have had another husband. They are not at all the same not in any way and the fact I needed to find My Real Husband should say enough about the First One.

It is getting close to the 6th anniversary of the day I met my youngest children--all of my children are Real in every way.

This blog starts after the long journey of being approved with a full home study to be considered a mother deserving enough to be the Real Mother of another mother's children. This blog starts the day I first saw my children, the moment I heard their voice and is but a small peek into our lives...

For a little while this blog was just about documentation of "things" that I needed to remember--and even more important needed to document. It might be true that very soon I go back over old posts to decided if what was written is what I want to be left behind.

What this Blog has transformed into is what I hope might be seen as my primary hope and dream--Making New Memories with those I love and those who love me back, or at least are trying to do their best by the definition of love as they understand it.

This is my effort to show that even in the midst of my own troubles, complications and over the top situations that there is ALWAYS some time in the day (or week) to STOP and put aside the Issues and make a New Memory for our family to keep... Even if under it all we struggle with unbelievable issues helping children grow up to feel love, have memories, and overcome the strikes against them.

Even between the Groundings for steeling--or the nights of fits and rages it's possible to pull out the camera and find a smile in the view... Even if the world is huge and the issues are deep--it is possible to pause one moment and snap a picture of a glowing face...even if that face glows because it has been screaming.

It is possible to be the REAL mother and REAL wife of REAL People and face the hardships of our own lives and take one moment to make a New Memory... little or small memories... for me the things I wish to give my family the most is a Memory of me that is a smile and glows in their hearts long after I die... even if the glow they saw was from a mother's eyes that had just been crying...

My hope is that the good memories outweigh those which are part of the struggles we face everyday.





Tuesday, August 26, 2008

Touching Snow and Slapping Trout

The Top of Mt Hood Oregon 2008 Daddy and Marty were ready to touch the snow, on Mt Hood--however Makala and Mom accidentally (wink-wink) had the wrong shoes on and decided we would explore and shop at the Timberline Inn... while the boys took the hike up the mountain just far enough to have a snowball fight.



Uncle Gordon has been on the cover of one Outdoor or Fisherman Magazine or another for the past 30-years! Clearly, fishing is NOT a genetic talent and my husbands big brother obviously didn't teach his younger brother much about his passion! Andrew Trout Fishing 2008



Marty has wanted to "go fishing" for the past 2-years! I have done my very best to help him expereince the fun of worms on the hook, gutting, and eating fish but... I always had my dad or brothers when I went fishing so all my efforts have been less than successful. I just want to have this parental obligation resolved and decided that whatever it would cost the Rainbow Trout Farm was going to solve everyones problem when it comes to Fishing! Uncle Gordon says he will be happy to have a tag along--one day--when the tag along is Not 6, or 7,8,9,and maybe not even 10...after he has had a few years of scouts and camped at least a few nights.



Fishing Mt Hood Oregon 2008 Makala caught her Trout, but not until after she had a tissy-fit about the fact I would not allow her to stand in the pond and scoop the Farm Trout up with a net that could catch a Dolphin! If you have ever gone to a Fish Farm then you understand that success is guaranteed and the price is by the inch! No Throw Back! One scoop and Makala would have caught $1,000 of trout!



Makala's Trout 2008 This little guy only cost us $5.00!
Of course, I was planning on getting the 3 fish that cost a total of $15.75 home and cooking them up just like my dad used to do... but, apparently the children had been too traumatized by the expereince.



Marty's Trout 2008Marty was having the hardest time dealing with it after watching the "Grandma" who cleaned the fish for us, slap them and tell him she did that so they wouldn't know what was going to happen--then she gutted them and looked back at Marty and said, "Besides when I slap them they Mind better!"



I ended up finishing the cleaning process and putting the little guys in the Freezer for cooking when everyone has overcome this traumatic experience. We are either going to have one great Secret Recipe Trout this weekend or we have $15.75 worth of cat food....or just the cost of checking fishing off the list--I think the neighbors would love some Trout...






Monday, August 25, 2008

One Last Summer Adventure 2008

In most cases I would be lamenting the fact that there is but, one weekend left before the unofficial end of my summer! And boy did we make the best of the little time we had for some last minute fun!

Since anyone who knows me well, knows I have one real big rule in my life and it's the fact that I don't Do Snow it should be no surprise that my adventures to mountains are most likely to happen in the "Off Season" or August in my part of the woods. The good news is that even in August my children can travel a short drive, and take a little hike and touch snow.

We spent some time at Mt Hood this past weekend doing what we call "Hotel Camping" why rush to sleep in a tent and build a fire for the morning coffee when it's possible to enjoy the wilderness and take a shower and hot tube before the late news, and morning continental breakfast in the lobby?

Especially, when mom is about to do something she has refused to do for more then 15 years--and will never admit to actually having done! It never happened that I sat on a chair lift, then sat on a plastic blue sled and flew a mile down the side of the mountain -- and it never happened that my 6-year old went first and I didn't catch more then a fast streak of him flying down in front of me!

Hope you enjoy these pictures that I didn't take (wink-wink) going Up a Chair Lift and down a mile long track left in the dust of a 6-year old!

Alpine Slide Ride Up Mt Hood Oregon 2008 No I did not put my backside onto the seat of a chair that was moving on a wire up the side of the mountain with nothing holding me onto the chair--and foolishly let go of my hold to take pictures of the ride up and the track below... Nope it didn't happen. On the Way Up Alpine Slide Mt Hood Oregon 2008


On the Way Down Alpine Slide Mt Hood Oregon 2008 And there is NO Proof that I would put my backside on a plastic thing and propel myself down a one mile track behind my 6-year old and actually take a picture while trying to steer and look for his mangled board on the side...

There is also no proof that I would ever do the same foolish thing twice after all I took this picture of the rest of my family after they did such a daring thing... But, I never did this so don't go thinking I am a nut or anything because I don't do daredevil stunts like the people I love think is a fun way to spend a summer day!
At the Bottom Alpine Slide Mt Hood Oregon 2008

I honestly have No Memory how these pictures turned up on my camera and didn't let Makala borrow it?




Sunday, August 24, 2008

A Little Sunshine in My DAY!



Rebbecca Glendenning

My beautiful niece Rebbecca! Oh my goodness did I need some Sunshine and seeing her smile has been the highlight of my week!





Tuesday, August 19, 2008

Missing My Favorite Place to Write...Here!

I thought I should come over here to my favorite place to write and let everyone know that I am still alive... Just very busy with the Right Side of my brain at the moment and doing a lot of the Geeky stuff I don't really like to do but for some reason seem drawn to do...

My high-power nerd glasses have been perched at the end of my nose for the last several days working on my website the AdoptiveParentsNetwork.com I hate to confess that it's actually kind of fun to see what happens when I am spending the time needed to develop the ideas I have... for the Adoptive Parents Network... It just uses up a whole lot of brain band-width and usually leaves me speechless in my more creative Left Brain natural zone...writing...




This time around I have actually been having fun--Not that I'm completely sure everything I am doing works exactly they way it should because as usual I tend to find the backward way to accomplish most things and then eventually figure out how to do it the right way... Which usually just makes me sit an wonder why I made everything so difficult?

I guess along with calling myself a middle-aged, blond, former surfer valley girl who builds websites the left-handed way, I can also add, "if it Works--Good!" And right at the moment making some of my ideas work has been the goal!

If you haven't been to the AdoptiveParentsNetwork.com main website in awhile (like since this morning) then you may not notice some of the New things being added...

Today, I have been working on the Main Menu shown on all of the website pages because the Adoptive Parents Network is about to really step things up with more ways for Foster, Adoptive and Special Needs parents to connect and share information and resources.

A whole new section and layout is being developed for the Resource Network. This will be another interactive area members can add, comment, and find all the helpful links and information. It's been in the plans for a long time just needed to be created, started and added to the site...

APN is also getting ready to start the APN Blog Network which is going to be a real blast. Today we opened the Blog Network Blog and made the very first post just letting everyone know what the Plan is... This new blog has been wrapped right into the main website with a Link in the top menu so visitors and members won't have to go looking too hard to find it... Any Parents with Blogs of their own will not want to skip this section... There are going to be some exciting contests, and it's going to be where the serious Bloggers find interesting ways to add to APN at the same time connecting with other parent bloggers and learning how to make Your blog Your Own Small business...

The APN Blog share is going to include Parent Bloggers of all kinds because Adoptive Parents are not just Adoptive Parents all the time--sometimes we are just the ordinary parent dealing with ordinary parent things... The APN Blog Network is going to be a place where Parents support one another, by way of sharing their Own Internet Home and Family with each other... If you are a Parent Blogger don't be shy about jumping onto the APN Blog Network and if you don't have a Blog yet you might want to consider it--because the next few months are going to be Fun and Profitable!

I have also spent some time Moving my Long-time and original Guest Book to APN! This might be one of the few original things I ever did on the Internet that is still completely intact and continuing to grow. I started this Guestbook on my very first website and hope to see it continue to grow as the Adoptive Parents Network grows...

As much as I have missed writing in my favorite spot (here) I am really getting excited about APN again... It was a hard and difficult loss when my Partner decided to adopt her third child--a newborn sibling of one of her older boys and leave the business to take care of her growing family. And since I am writing on my own personal blog here I can say the work I have been doing the last several days has brought out the survivor in me again...

It's difficult for me to Change Directions sometimes and I am the type who loves routine so it took a little while for my mind to start thinking what direction things were going to go with the whole APN LLC -- website and the loss of a 50% partner... I learned a long time ago that with each closed door another is open so, I am starting to overcome the sudden need to completely re-organize the business side of APN... As I have been, I am starting to realize that limiting something with so many ideas to only two people getting them done was not the best business choice.

So along with all the Geek work I have been working on the Business things and have come up with some business opportunities for those who might be interested in investing some time, skill and dedication for a variety of projects. After all the real and complete idea of APN is that it isn't just My Website for everyone... My original goal was to offer something that would become the Adoptive Parents Network... as it turns out a partnership was clearly not going to make it what we want it to become... So, now I do have the freedom to offer several businss opportunities for those who can and will be able to add to my efforts and make the Network what we want it to become...

I have some fun family things planned this week, and we are going on a mini-adventure vacation this weekend so I'm sure I will be writing about some New Memories and posting new pictures very soon... I just wanted everyone to know I miss writing here while I am busy at work....on the Adoptive Parents Network....



Thursday, August 14, 2008

I just love the Slide Photo Book!



I have been having so much fun playing around with pictures. It took me a long time to decide I would accept the fact that Film and the old Dark Room days are over... I love the holding and feeling actual Pictures and photography was one of the first interest I had working at the Newspaper office when I was 15 years old.

I have been fiddling around with the Header and will be done very soon! I am still working on the graphic that will go in the Left side of my header and last night found the COOL Slide photo box that I have in the right side!

Anyone can make a Slide show and it's not very difficult. In fact, any photo's you might have posted on MySpace, Flicker or FaceBook can be imported very easy... Or you can just upload them from you computer... Not Hard at all! Once you load you pictures and select how you would like them to be displayed its just a matter of clicking the "Save and Get Code" button, Copy that Code and put it right into a New Blogger Gadget Box! TaDa and there it is! You have a Slide Show!

Now my mother can just come to my Blog and wait for the header to load on her Dial-Up connection and there she will find whatever I have loaded about the memories we are making!





Tuesday, August 12, 2008

It's Tuesday and I am finally starting to Recover!

Marty Fair 2008Marty Fair 2008 On one of My only days off Work at the Potato Booth, Daddy got the great idea and said,

"Hey! lets go to the Fair!"

I said, "Not Me!"

instead it was Hot Bath time for ME! So Daddy took the kids and they had some good times...

Makala and Marty Fair 2008

Fair Concert 2008 One the First Night of the Fair Makala and Sam wanted to stay and see the Corbin Blue (spelling?) Concert... It was just like and Pop-Concert I remember of course we ended up in some far away seats since we were busy making potatoes right up until the concert started...
Fair Concert 2008


We could have purchased seats down on the ground--but, the reality is that we were too tired and there were too many screaming girls to really want to roll around with.





Sam Fair 2008Of course Sam had to turn away every time I had the Camera Out so this was HER best picture on my memory chip! One day I will catch her!

Okay, so working 8 shifts of 4 hours each shouldn't really be that hard for a normals person. But, I don't work on a time clock and don't usually have to get up and leave the house... So that was HARD! Not to mention the fact that working a Charity Concession Booth at a 10 day County Fair with children is like being a waitress with a several tweens and teens as your co-workers... Yeah that was fun... Once a year for a few days... Great Memories were made.



Monday, August 11, 2008

The Fair is Over!


I have no clue just how many baked potatoes we put butter, sausage, cheese, sour cream, bacon and chives on--but, it was thousands! Thank goodness for all of the adults who spend way too many hours, planning -- organizing -- working -- managing and busting back side for the Job's Daughter's "Irish Sunday's" concession booth at the Clark County Fair!

We were non-stop on closing day, which of course I find as the Best Day to take pictures. After 10 days of non-stop baked potato scrubbing, wrapping, baking and dressing we ended with a bang and a busy last day!




Job's Daughter Fair Booth




It was a very Looooooooong 10 days and I can't wait until the big After the Fair pizza party because every single one of the Adults and young people who offered to work for a shift made it all possible!






Friday, August 08, 2008

...It has been a busy Week...

Parenting kids who have special issues can be a full time ***Fun JoB*** on a ordinary day... Add on top of that 10-days working a very profitable food booth at the County Fair for the organization that might be one of the most positive things in a child's life and it's as bad as this run on sentence! (Insert Dramatic Sound Effect Here)

With only two more 4 and half hour shifts at the Baked Potato booth and Makala and I will have earned every penny and then some for the funding of all the years activities with the Job's Daughters. This fund raiser is a big deal and Everyone who knows anyone is recruited to do a shift or two. The Girls need to complete 6-shifts for a Free year of costs which is a great deal... Until Mom has served about half of them--because her daughter has a few special needs......

So far, the usual and expected THINGS that any average 10-year old might do or say has happened. Except that, (my fellow parents who understand Fetal Alcohol Spectrum Disorder, FASD children will understand) it has all been with the added Intensity and Duration that only a child with FASD could make everything in life.

The work has been Hard and overall no mother could really expect better out of a child this age--I do recall several recycling events with my "fine" older daughter at this age and other then the Intensity and Duration parts...she was just about as much of a handful.

I did have both the children pose in the Western Photo's (that cost a fortune!) and it was a Hoot! Of course, Makala wanted to dress in the Can-Can girl dress and look about 15 years older then she is---thank Goodness the People running the show didn't allow Little Girls to dress in "those outfits". Makala and Marty were posed as Western Bank Robbers and in a "Wanted" frame -- which I always thought was a cool subliminal message to for them especially...

However, it has added meaning to see them posed as wanted for bank robbery when we realized that the "Extra" $40.00 Makala had to spend at the Fair was really from daddy's office desk drawer--and we had been triangulated for several days over her sudden wealth...


Wednesday, August 06, 2008

If you care about a child with FASD or ARND Please Complete this Survey

I have been very busy for the last week helping the Job's Daughters with their annual fund raiser... But, Not too busy to post this:

The DSM is the handbook that determines what the psychiatrists, psychologists, social workers, education psych, etc. people take
in college...if FASD is not in the DSM, then these professionals are NOT being taught about FASD/ARND. If you are not getting proper services from the health professionals in your area, it is because FASD/ARND is NOT in the DSM.....most universities will not teach the subject if it is not in the DSM. Most textbooks will not even write about it unless it is in the DSM. Please know your participation in this is vitally important to not only your family but families around the world . The DSM is written and used in conjunction with the International Classification of Diseases (ICD) which is also undergoing revision during the next few years. PLEASE HELP and respond to this survey.
The National Organization on Fetal Alcohol Syndrome (NOFAS) and the Minnesota Organization for Fetal Alcohol Syndrome (MOFAS) are seeking first person experiences from FASD parents, family members, caregivers and practitioners describing diagnostic inaccuracy, treatment delivery problems, resource limitations or reimbursement problems that can directly be attributable to the absence of FASD in the DSM.

A Task Force of the American Psychiatric Association (APA) is currently overseeing the development of the fifth edition of APA's Diagnostic and Statistical Manual of Medical Disorders (DSM-V). The DSM is the handbook used by psychiatrists and other mental health professionals in the United States as well as other countries around the world to diagnose and classify mental disorders. Two Task Force committees--the Substance-Related Disorders and the Developmental Disorders Work Groups--are considering inclusion of FAS/FASD/ARND in a format and content that will be strictly based on the state of the research. A research literature review that will present the scientific case for inclusion is currently in development. In order to support the case for inclusion, NOFAS and MOFAS are collecting real world anecdotes describing hardships and obstacles to care and services. To share your personal vignette either anonymously or publicly, please complete this form and return it to NOFAS or MOFAS no later than August 15th, 2008.

Name: (Not Required)

__The information on this form may be published with attribution
__The information on this form may be published anonymously
__The information on this form may not be published either with or without attribution

Email Address:
Telephone:

Please Check All that Apply:
I am:
__FASD Biological Parent or Family Member
__FASD Adoptive Parent or Family Member
__FASD Foster Parent or Family Member
__FASD Care Giver
__Clinical Practitioner
__Mental Health Professional
__Educator

In one paragraph of no more than 200 words, please briefly describe a specific experience with 1) diagnostic inaccuracy, 2) barriers to treatment, 3) a lack of resources, 4) problems with reimbursement and/or any other challenges related to mental health disorders associated with prenatal alcohol exposure.

Please email fax or mail to:

Hersh@nofas.org
Donaldson@nofas.org
Fax: 202-466-6456

NOFAS DSM Survey
900 17th Street N.W.
Suite 10
Washington, DC 20006

By completing and submitting this form to either NOFAS or MOFAS I understand that this information will be shared with the APA DSM-V work groups and their members.



Saturday, August 02, 2008

Some Fund Raisers and Some of Our Kids

Normally, I can't stand dealing with the various fund raisers required by the schools and other groups my children are part of. Especially, given the fact it seems there is one fund raiser after another these days.

As a parent I generally just purchase the minimum goal or pay the minimum profit expected. We learned a few years ago that the last thing a child with Reactive Attachment Disorder -- RAD dis-inhibited type along with the impulsive behaviors that often come with Alcohol Related Neurodevelopmental Disorders -- ARND, is to have her to go around knocking on the neighbors doors. It's been a good two years since we fell for the School Fund raiser and Makala's goal to WIN the big prize incentive... And our lovely daughter still seems to feel she has permission to knock on the neighbor's door when she wants to do so.

She did Win the Prize incentive but, our family and neighbors have suffered repeated intrusions in the lives with odd requests for funding since that ill-planned one time permission to go around collecting orders. We learned from that mistake it's not a great idea to have a child with RAD and ARND go around knocking on doors for money! Makala has had at least 2-3 great fund raising ideas every month since she was given the privilege of doing so once--nearly 2 years ago.

According to her doctor it's not a good idea for children with her special needs to even take part in such activities. Put a kid with impulsive behaviors and a dis-inhibited personality into the middle of one of those PUMP-YOU-UP fund raiser meetings and assemblies and you have a piece of dynamite with a lit fuse!

Yep--that has been our experience! Some fund raisers are simply not important enough to create the "permission" and entitlement feelings that might be created inside some of Our Kid's as a result of trying to earn a whooping $20.00 for the P.T.A.

There are a few kinds of fund raising activities which have worked well for our daughter, but those are the types that require set times or events where our children are not trolling the neighborhoods or calling every family member listed in our phone book. We stay away from the "take an order" kinds of fund raisers now and take part in things like the booth Makala and I are working shifts in during the 10-days of our County Fair!

It's amazing to me sometimes how the smallest little things make a huge difference for a child with the needs Makala has. Just the subtle differences in similar activities are some of the little things I have learned have a huge impact on Our Kid and family.




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