FASD: Middle Class Service Crisis......

I have written this post six times and never hit publish. It's a tough reality of many private adoptions (both domestic and overseas) which we need to talk about and one that very few families consider before they embrace a new child.  In general (and I mean the broadest general sense here) most families who adopt through a private agency fall somewhere within the economic middle class and most of the children they adopt do not come with adoption linked medical assistance. (Most children must be in County foster care to be eligible and most private agencies place children who are not in County care.)

Which is good - those families have the general ability to cover adoption related expenses and care for another child. But it is also bad because many adoptive families find that the child they have adopted has unidentified behavioral and mental health challenges which can quickly burn through the families ability to cover medical bills. They also discover that their private medical insurance which is great for broken legs and pregnancy isn't so complete for behavioral mental health.

Which creates a real rub and can play out this way........

A. Nice middle class family has a child who's need for mental health care and special therapies exceed what their insurance and savings can cover.  After talking to their doctors they realize that this isn't going to improve any time soon and decide to turn to the county for help.  Their thought is that proactively it might be a good idea to get ahead of the game since their child isn't really doing bad yet....

B. They call the County and talk to one of the intake specialists who explains that they earn too much for straight medical assistance (as a secondary insurance policy for their regular insurance through work).

C. They look into TEFRA (a buy-in plan for accessing MA as secondary insurance) and are told that their child isn't eligible because their disability isn't limiting enough yet .....

D. They realize that there is no help available to them yet so they continue to flounder along with the medical bills until something changes.

This was us.

I hate to say it but until last March there were ZERO services available to our kids through the county because we made too much money and we were doing such a great job that they didn't require "a certain level of home health care to stay at home compared to the level of care provided in a hospital, nursing home or an Intermediate Care Facility for Persons with Developmental Disabilities."

But both those factors shifted last March and now there is help available to us and them.  Which means we are downwardly mobile.
It also means that for 12 years we parented kids with disabilities
and had no chance of help. 
It wasn't that we didn't want help -
It just wasn't there.
So I became the Lone Ranger
and did my best with what I had.
Because we had the problem of being middle class.

Something I had never thought about before.

We were not rich enough to cover the bills
and not poor enough to qualify for help.
Who would have guessed?

It's an interesting dilemma and one I see many families struggling with.  That they must suffer through the 'not so bad' years of their children's challenges (which is relative by the way- our 'not so bad' would send many families off the deep end) before they can finally qualify for help.  Help that should have arrived years earlier but didn't because there was no access to the system for them.   As a Long Ranger I can say that it took years of waiting for the deputies to arrive and join the battle.  Excruciatingly long years spent under blazing hot sky's, desperate for a cool drink and a few more rounds of ammunition....hoping against hope that they would arrive in time.  For us they did....but for other families the wait is still on.

Books To Share.....

UPDATE:  All of these have been shared out but I will list more later this week. :)

Today I'm clearing out the book shelves of duplicates and books that we no longer need....any local takers?  I would rather not mail these (unless you really want them...then I will. :) Claim them in the comments section ---- most are in great shape - some are a little rough but no tears .


Freddy the Pig Goes to The North Pole (paper)
Poems for Patriarchs
Leading Little Ones To God
Clip And Tell Bible Stories
Days Of Rondo (on the AA community in St Paul 1930-1940 I really like this one)
Complete Guide to Asperger's Syndrome
Douglas Wilson: Future Men, Reforming Marriage,Standing on The Promises, Her Hand in Marriage.
two book set : Memorable Women of the Puritan Times (hard covers - nice)
Kingdoms Edge
Huguenot Garden
Behind Mr Bunyan
Dutch Color
The Mother At Home (1984 by Abbott)
True Story of Noah's Ark (cd missing but book intact)
Parenting Isn't For Cowards
Dare to Discipline
Book of Virtues (no cover but in good shape)
Bobsy Twins hardcovers (1,2,4)
The Boy Knight (henty)
The Little Maid Series (6 out of 9)
The ADHD Autism connection
Revealed to Babes

Ending The Week With A Smile.....

The Twin Cities Regional Science Fair looms down upon us - seven days from today according to the calender. I did my part to help the teen boy as he wound up his project this afternoon.  Do you like the photos?  My job was to hold the board still....and not give him any sort of advice.  Good news is that my phone was charged so I could play solitaire while he sweated away.

I like this view....though I am sure sawing your mother in half wasn't an approved portion of his research plan.

FASD: When The Problem Is That You (The Parent) Exist.....

Some of the issues around FASD's are too sensitive for particular individuals to blog on.  The pain is too sharp, the details too specific, the need for privacy overwhelms the desire to share and educate the larger community. This is a place where other bloggers - one step removed - can reach in and cover topics which need to be addressed but not always by those who are living them.  Today's post is one of these challenges - giving a voice to those who can not speak about the challenge of parenting FASD kids who struggle with the parents (or family) as a trigger to their anger.

Within my circle of Internet as well as real life friends there are several families facing the reality that their children's biggest problem seems to be that they (the parents) simply exist.  A child who seems only a little off balance in public becomes a raging tiger at home.  One who has never suffered abuse in their adoptive family becomes the abuser and creates an atmosphere of fear, suspense and trepidation where the only relief is found when they are not at home.

There are many reasons why this happens -  PTSD, RAD, FASD to name a few.  But though there may be a name to link the problem to it doesn't change the simple fact that the safest and most nurturing relationships a child may have in their world become the rub that triggers their most violent and angry responses. 

I can blog indirectly on this because it hasn't become an issue in our home so far.  There are others who are silent due to their leadership roles (seriously - I have real friends who have lost pastoral positions due to FASD kids behaviors), the confusing pain of the situation and concerns about DHS misusing their honesty.  For them it is a lonely silence.  One where to a larger or lesser degree their sacrificial love of a child seems to only kindle anger.

Would you join me in praying for those kids and families who don't see the hope in this new day - the parents holding their breath until the child who seems to hate them most is safely on the bus - and the child who is rubbed so wrong by their love that all they can do is look for ways to escape.  It's a hard road they walk....one without logic and reason.  One that drives them daily to the foot of the Cross - whether they know it or not I am praying that today they will look up and embrace the beauty and hope that is there - because the weight of a childs anger can be crushing.

FASD: Different And The Same.......

The longer I parent kids with FASD's the more I realize that the issues we face under our umbrella are often very similar to the challenges which other families face with different diagnosis.  My kindergarten BFF is parenting a child with totally different hidden disabilities from my kids - but as parents to kids who are not behaving within the 'average' realm we speak the same language, walk the same paths and find the same utterly inappropriate things hysterically funny.  I could text her 'have you tried taking away his privileges?' or 'maybe your too lenient with him...a little discipline would help.' And she would fall off her chair laughing..and text back that I better get myself another glass of wine because my nirvana is about to end.

Not that every mom to an ASD/RAD/PTSD child would understand what life with FASD is like - but the chances that we would have some common connectedness has proven pretty high in my circle of friends.  Which is starting to make our weirdness look normal and the rest of the world look strange,

Today is Valentines Day.  For all of you who are parenting struggling kiddos - some who may have a diagnosis and some who never will  - know that you are precious.  And that your kids are precious. That the same God who built your family knows far more than any doctor or psychiatrist and that on the hard days there are people out here on the blog-o-sphere who you can shoot off an email to and we promise....tongue in cheek...to ask if you have considered taking away their privileges.  After which we will weep and pray for you - because regardless of the 'official' diagnosis this stuff is hard.  Really blasted hard.

Breaking the 15 Year Ban on Pets....

15 years ago we put our ailing cat to sleep and realized our six month old son was allergic to most things green and everything hairy.  Aside from one tank of sea monkeys and a single guppy 12 years ago there hasn't been another pet since then.  Our ban was lifted yesterday when we bought the kids their very first 'pets' - four guppies and this cool bio-tank I fell in love with.  Happy Valentines Crew - a little early!

Happy Photos From A Turbulent Week.......

It's been a long week here in the Old House.  Too much trauma and drama to want to document it on the blog - enough to make me thankful that His mercy's are new every morning.  Enough to make me watch for the joy in the 'between' moments of my life.

Here are a few we captured .........

New faux Ikea flowers for the kitchen......

Hidden treasures in the school room.......

Goals achieved....

Daughters who smile through nasty chores....

And friends who smile too...

We Can Ride......

I have noted before that most of the therapy options our family chooses are home-based and mommy directed. This is necessary since the stress that out-of-home therapy creates for several of our kids simply overrides any potential benefit which may occur.  Because I hate escalating the trauma, there are very few therapies which tempt me to intentionally schedule anything that isn't absolutely necessary -  but when I realized that the UM had a therapeutic riding program just miles from our home I decided to take the chance.

The lead-up was hell.  For five days before the required OT/PT assessments they were agitated, fighting and really not fun to be with.  Simply getting them into the van for the initial meeting was a good test of my mommy resolve on this one - lets just say there were those who wanted to bail as we went out the door and one of them was 43 years old.

But we did it. (Wahoo!  Do hard things!)  The We Can Ride program is based out of the Hennepin County Home School facility Southwest of the cities.  For those who are not familiar with it they provide the 'other' type of homeschool.   Like with guards, gates and a secure premises.

The assessments went well and those who were working with the kids understood the varying levels of maturity and ability within our family.  The great news is that four of the kids are scheduled to begin sessions this summer and I really liked what I saw and the philosophy they presented.  It was also very validating to have the OT identify some odd things I had seen with one of the kids and give me a better vocabulary (as well as a professional opinion) on what might be happening there.

In the end I am glad we pushed through the anxiety based fighting earlier this week as well as the fear based crabbiness and disruptive behaviors.   But it was a good reminder of how narrow the emotional boundaries are for some of us and what the cost is for pushing too far past them.

FASD: Looking Behind A Child's Behavior....

I'm a relative newbie to the world of intentional FASD parenting - it's only been three years since we received our first accurate FASD diagnosis (following a whole bunch of near-misses) but we have been living with the reality of how hard the parenting role is with these kids for more than 12 years.   Heather Forbes tackles the challenging paradigm shift that effective parenting of traumatized kids need to make in her teaching and training materials through Beyond Consequences.  Today in the email newsletter she included and excerpt from her book Dare to Love that addresses the need to evaluate the emotional platforms behind our children's behaviors vs just trying to control their behaviors as if they are little adults.  It's a great reminder to me of how important it is that I not simply react to the behaviors of my kids but look deeper into what's going on inside......

Checking Off Boxes.....

Box checking is one of my favorite pastimes which helped prevent discouragement as I read through the two pages of owner-to-do lead hazards which the county had requested we complete to qualify for a replacement window grant this spring.

 It took two weeks of rather persistent effort but last Friday we checked off the last box  and called to tell them that we had completed the list. Oh the satisfaction!  From a new coat of poly on the stairs and wainscot (apparently they had used lead as a drying agent 100 years ago and there was lead-painted wood grain on some portions), to painting the storage cabinet and doors in the basement  - every job was on my 'to do someday' list and I was happy to tick them off at the counties request.

Timing was perfect.  With so many sick kids since the last week of January school has been on a limited schedule and I have filled in the gaps with educational DVD's and painting.  Now we wait for the next step in the window replacement process and begin the slow gear-up back into full time school.