FASD and The ILS.....

Two weeks ago I received an email from a therapist asking about the ILS and how we use it with our kids who fall under the FASD umbrella.  I let it sit for a while because I wanted to be sure I had a careful answer that addressed my most important root message and didn't get blurred by specifics of which protocol and what the results were.   The one BIG thing I have learned as the mom to kids under this umbrella is that there is no cure...that we treat symptoms...try to modify the worst behaviors...and learn to live with the reality that this is....our reality.  Here is the email I sent back to L - I hope she does start using the ILS in her practice with kids who have FASD - but with the understanding that this is not going to change the root issue - just help out with some of the secondary issues.....unfortunatly I got a little redundant in my writing - but it's a message we need to help professionals hear so that our families can start being seen for what we are....living with long-term permanent issues.

"Hello L..... and thanks for asking about the ILS - as the mom to a child who has recovered from autism you understand the challenges which a child with these behaviors can face and their parents desperation to find answers and solutions to anything that can be changed in their lives. Though I wish I could tell you that using the ILS has 'cured' or even 'resolved' the problems that my children with FASD experience, I have had to take a slightly different approach which is treating and managing the secondary issues that arise due to living with FASD rather than curing them of the base problem. This means that because the damage done by exposure to drugs and alcohol is permanent and irreversible,  I have used the ILS to help lessen the secondary issue that arise or are complicated by the primary damage they sustained before birth. I can say I have had success using our ILS to help them regulate, focus their auditory 'attention', develop the soothing habits that they desperately require and helping their brains to organize better. The flip side is that because my kids with FASD have serious impulse control issues they often break the headset (I'm a queen at repairing them) and try to tamper with the bone conductor and ipod when they get the chance. To get an idea of how serious it is ....think about needing to zip-tie the carrier shut so they can't damage the unit.

As much as parents want to find a 'cure' for FASD there isn't one - it's a series of birth defects and secondary issues that develop based on them. FASD is 100% preventable, 100% permanent and 100% heartbreaking for those who have to live with it....the ILS is helpful in managing the secondary issues but I have seen no proof that it will change the underlying brain damage. Not that that means you shouldn't try it - just that it isn't going to change the base injury - just help manage the secondary things....which is good enough reason for us to use it!



Blessings to you


Dorothy

Is Pyrex Safe? Our Families Research and Conclusions......

Last week our family researched the question 'Is Pyrex Safe?' following the exploding pan incident.  Thanks to all the real-life blog friends who answered the survey and our friends at Anchor who pressed us to finish our project in time for the science fair last Friday.   It turned out to be a great project with an unusual twist..... here is what we learned. 

Pyrex seems to be perfectly safe - UNLESS - it's chipped, scratched or has a flaw. 

AS LONG AS...you don't expose it to heat or cold shocks, bang it taking it out of the oven, use a damp towel or potholder to move it, rest it on the top  of the stove to cool, place it on anything but a totally dry potholder (no granite counter tops, metal trivets or wire racks), heat it too high, expose it to boiling water, mix hot and cold ingredients, store it in a place where it might be exposed to extreme cold (say a MN unheated pantry or basement space?), microwave things in it too long or do anything else that might create a thermal shock.

Which is not a problem....except that I do almost all of those things because I believed the 'myth' that Pyrex was a miracle product (which it was using the pre-1940's formula in the US and still is in Europe.)  Just reading the comments and emails I received (25 total reports over 48 hours from 600 hits) about how readers pans have exploded makes me want to never use mine again.  Just think....half cooked pecan pies exploding in your over - or a 9x12 of brownies.   Or facing the reality of having to replace the vinyl floor in the kitchen because the pieces of exploding pan melted into it, not to mention burns, slivers, and other potential harm to the chef or interested bystanders.

(Photo: Two of our Young Scientists at work....)

So in conclusion: Our family is going to seek an alternative to Pyrex. With ER co-pays for our insurance running $150.00 I could easily replace our 4 big Pyrex pans with metal ones and save the potential pain and suffering that another exploding incident might cause.  It might be different if I was single, but with a household of 13 and life that causes our bake ware to be really used, I can't ensure that the Pyrex is handled as gently as it needs to be, so it is time for a change. (If you think I might just be a tad overreacting, link over here to the Pyrex website....here is their own list of safety warnings which I never read before....but then I believed hook line and sinker that Pyrex was a super-durable product.)

Who (or What) Rubs You Backwards..........

I HATE having my hair stroked by anybody - my husband learned this  in a rather brutal way when he tried to smooth my hair mid-contraction on my first delivery.  I wasn't at my finest interpersonal moment and he hasn't ever forgotten that hair rubbing is an irritant not a comfort to me.  The idea of hair touching reminds me that we live in the real world where people are constantly rubbing up against us and getting under our skin with their actions, attitudes and behaviors.  I am sure that there are more than a few people for whom I am that irritant - not something I am proud of  - but a reality of life none the less. (Sorry!)

Tuesday starts March which will lead us eventually into April and Easter.  This year I am intentionally bringing to mind those people who rub me backwards and praying fervently for their good through the month of March. 

I'm not talking about 'change them Lord so they don't bug me' sort of praying but 'Lord...lavishly, abundantly, overwhelmingly pour our your blessings upon them...that they might prosper in you!' sort of prayers. 

I have needed to do this before in seasons of my life where I have allowed petty annoyances and personal differences to cloud my vision of who I am called to be.  When I start justifying, explaining and being 'ok' with loving all my neighbors but not 'that one' its a sure sign that I better get to praying and encouraging them for the sake of my own heart.  From experience I can say that the pain is worth it.  After focusing my heart on praying blessing and good over someone I have seen the irritations melt away and relationships established that I would have never guessed possible.

Between now and Tuesday I am creating a mental list of special people to pray over  for the month of March and gearing up to be seriously committed to my agenda.  My prayer is that I will enter the Easter season rejoicing in relationships improved and with the weight of my own growling irritations washed away.

How about you?  Anyone rubbing you backwards who you would love to shower with prayer this month? 

Privacy In The Crowded House....

Private calls, important discussions, correction and all those other things that are best done in private are are a bit of a challenge in the Crowded House.   Facing this reality the bathroom has officially become my office...and I am trying to make the best of it through humor.  So far my best moment in the 'office' was an angry and defiant older kid falling into the claw foot tub where they were perched for a time-out conference. The slip broke the tension beautifully and reminded both of us that we needed to work together to get through this season of making due.

Treating the Symptoms.....

As much as I wish there was a cure for the challenges my kids face, the truth is that their underlying disabilities are permanent.  I can't undo the damage that was done to their brains and bodies before birth in the same way that I can't change the genetic makeup that has been with them from day one.

We teat the anxiety, work with the learning disabilities, experiment and adjust medications, identify the processing disorders and make progress in one area even as we lose ground in another.  It is the nature of FASD - some times it feels like a strange game of 'wack - a - mole' where we are only able to see and deal with what is above the surface.  It makes communication difficult with those who don't fully understand the issue.  Just because I find the right medication to control the anxiety (today) it doesn't mean that something else isn't going to surface tomorrow and no matter how 'good' a program is at teaching a child to read it can't take my child beyond their own abilities. 

So many of the people I talk to mistake our daily successes for cures and follow our regular progress which in turn they expect will one day bring the children up to 'normal' or 'average' abilities and social standards.  It's hard to explain the difference between rehabilitative therapy (as in restoring what was once there but became injured) and the things we are trying with our kids.  There are no promises, no cures and very few miracles with FASD.  But there are many of us living, loving and working through the daily realities of our lives and reaching out through our messes to embrace each other (and each others children.) 

Exploding Pyrex Science Fair Research....Have a Story to Share?

With our homeschool co-op science fair looming at the end of the week we shifted our focus from fine arts and math back into research and investigate mode.  Today (Wednesday) the kids are working to gather surveys from people who have experienced 'exploding' pyrex pans.  If you have a history that includes this incident in any format, and if you are willing to help the kids gather stories, would you please answer the following questions and email them to me or note them in a 'comment' to this post.
Thanks so much!
Dorothy

Exploding Pan Survey (By Steam and Star)




1. What is your first name and when did your Pyrex brand item explode?

2. How old was the item?

3. What temperature was the item at when it exploded? (Room temp, hot, cold, frozen, other?)

4. What was in the item when it exploded? Had you just added anything?

5. Where did the item explode? (Oven, counter, freezer, table etc…)

6. Were there any injuries?

7. Do you still use Pyrex items?

8. Briefly: what is the story of the explosion?

Who's Praying For Patience..........

This was dinner- in the oven and started at 3:30pm. Beautiful two meal roast, potatoes, Yorkshire Pudding ready to mix, until I added a little water to the Pyrex pan and it exploded in the oven.   It was the perfectly funny ending to 'one of those days' though it did necessitate throwing the entire mess away and starting over.  The rest of the day had led up to it and it was compounding enough to make me wonder.....Which one of you has been praying patience over me? (Since there is really only one way for me to learn it ...through adversity.)

Just Right......

Our first house this year was

Too Big...(and lonely)

Our second house this year is Too Small...but full of friends

The third house (that we would love to return to)  is Just Right....would you pray with us that we will be relaxed and happy over the next 100 days as it is revealed if we can move back in? 1900 sq feet never looked so good to me!

A Lesson Learned........

Blizzard was the theme for our family last night.  The Crowded House was full to overflowing again with the winter campers safely returned and the usual Sunday afternoon nap-a-thon in full swing.  Kudu woke up from his nap and looked 100% better than when he had gone down - his stored anxiety over our disrupted routine had dissipated and he was ready to reengage with life.  Looking to get him out of the house at least once this weekend I named him as my shoveling partner and we set off in the blowing snow to see who needed shoveling.  Along the way we talked through what we were doing and why.  We talk a lot with him because his Autistic thought patterns make social behaviors that people usually understand harder for him to grasp.

*First we shoveled our own sidewalk - because it is our responsibility - the city says so.
*Second we shoveled our next door neighbors sidewalk - because they were still asleep and had shoveled ours all winter before we moved in.
*Third we shoveled the sidewalk of our old house across the street.  Because we wanted to encourage Ryan (the new owner.)
*Fourth we shoveled Ms Joyce's house - a neighborhood widow - because we love her.
*Fifth we shoveled the side walk and wheelchair ramp at Jan and Don's house because it needed it.

The fifth stop was where the learning really began.  Kudu's back was tired by the time we reached their house and his hands were sore.  He still isn't able to gauge well the pain in his body so there is usually a lot of drama with this type of scenario and he was gearing up for a meltdown.  Each time he complained 'my back hurts' or 'I'm exhausted' I gently reminded him that we had a job to do.  He kept shoveling and started asking questions.  Good questions that he was answering for himself.  "Why can't they do their own shoveling?  Oh yeah, they are both in wheelchairs..guess it would be hard to do this in a wheelchair."  "What happens if we are not able to finish this?  Guess they couldn't get out." "Why don't they pay someone to do this? Maybe they don't have any money.."

He went on and on muttering his questions and scooping smaller and smaller loads, but in the end we finished the job.  When it was done he said "I feel good about doing this - they needed me."  A statement that made me smile - yes - my son with serious hidden disabilities had found a place where he was needed and in that moment understood the value of doing something for that reason alone.  It was a good lesson to learn.

Uninsurable....

The big joke of this past week was my merry-go-round experience trying to maintain homeowners insurance on our house in Colorado Springs.  Do you know that it costs $100/ month to insure our house when all 13 of us are living in it and $300/month to insure it with us out? 

Crazy.  Especially when you think about all the damage and potential claims that our 11 kids might rack up under our regular policy.  The very best conversation was when the underwriters declared us 'uninsurable' because we have a play set in the yard.  I had to laugh...really?  In a community where almost of the neighbors are over 60 years old, with a locking wrought iron fence, our home is un-insurable because of a swing set? Today our friends in Colorado made that fixture disappear so by next week we should be back in the world of continuing coverage.

A Perfect Morning Following A Not-So-Perfect Day.......

It's early here, 5:00am or so, and all of the kids are still sleeping (or back to sleep in the case of those with issues.)  I can see signs of a night time accident (dumped clothes bins and a set of wet jammies on the floor next to my chair) and the table is half covered in the non-refrigerated COSTCO items from our impulse run yesterday.  I haven't looked to see if the promised snow has started yet and chose to have a cup of coffee before I dive down into the basement to start a load of laundry.  In half an hour I have 9 younger kids to feed and prepare for church and then a marathon until the teen trip returns (early) from up North because of a threatened storm.  It might not sound like a perfect morning to some, but  because my heart and mind are at peace with where we are at in our life, these external things are nothing more than details.

Yesterday I was feeling a bit control-freakish.  Dwelling on details and out of control things that made me unhappy.  I spent too much time thinking through details of a plan B - what if God doesn't sell the Co house - what if our taxes get caught up in the IRS maze scenarios, what if I have to live in the Crowded House all summer with my kids?!  I was engaging in a pity party that included visiting all the websites of all the conferences and seminars that I had hoped to attend this year in support of adoption and in order to better parent our children with disabilities.  I visited our checking account and verified that clearly, none of them was possible.  I am not proud to write it here, but I wallowed in the potential misery of all the thing 'I' was not going to be able to do.  And then I went to bed at 8:00 with the kids - since in the Crowded House there is no real way to stay up if they are trying to sleep unless I want to work in the bathroom. (Note to self: Buy some curtains and rods at the thrift store to close of the living room so we can stay up later.)

Sleep helped.  It wasn't great sleep - Storm slept until midnight and then yelled and fought until 3am every few minutes with his imaginary nighttime foes.  Each time I patted him and told him he was ok - and somewhere during the night I started being thankful because it didn't look as if he was having seizures - just bad dreams - and realizing that it was good that I didn't have to get out of bed to help him because we were both on mattresses on the floor so all I had to do was roll over and put a hand on him.  And as I lay there I giggled to myself about the trouble any burglar would have breaking into the house because they wouldn't know the 'right' way to kick the front door to get it open and that the pathway was littered with trip hazards and crayons so they would be in real danger.  And I reminded myself that I was doing everything I was supposed to in order to re-purchase our old house (the Middle Size House) with absolutely nothing I was shirking or ignoring.  Which reminded me that the rest of the process really, truly, was up to God.  I can't sell a house and I can't process taxes, I cant sway the heart of the man who owns the Middle House nor that of his renters...and if we are supposed to be in the Crowded House this summer we will be fine.  We will plant a garden and find a bench for in front of the house.  We will make chalk drawings on the sidewalk and move the boys bedroom out onto the front porch which will make more more room.  And I will wait on the Lord for His timing and not create a household of discontent and sadness because I have done what is in my power to do and can't try to control or shape the rest beyond my authority.

And When You Are The 11th......

When you are the 11th and mom is busy trying to feed the other ten you might just have to steal the applesauce squeeze packs and feed yourself. (That is Storm's little back end in the distance.)

A Peek At What Was....

Just thought I would share a photo of the bathroom sink cabinet we (Weldon) replaced.  This is exactly what it looked like in the bathroom, rapidly disintegrating base, no door and of questionable integrity.  On that note, I just finished waterproofing and reinforcing the kitchen sink area which is in a similar condition...never thought I would use liquid nails for this job but if it lasts another 6 months it will be worth it to me.  Of course....I wont be able to do the dishes until it dries so there is no guilt tonight on the pile waiting in the sink.

I Needed A Wife....

Living with kids who have been traumatized is tiring (duh) and the past 15 months has taken that from tiring to almost paralyzing. Not in a bad, can't ever recover, lay on the floor and not get up again sort of way.  But in a -I can't make any more decisions - its cereal for dinner again- reaction.  Friends and family have been the best therapy for this and cumulatively they have taken on the role of 'wife' to me.  Meals have shown up scheduled and unscheduled, grace has been extended in awkward moments and decisions made for me that took the pressure off my tired brain.  Thanks to all of you...I hope to be back in full force with time and a little rest.  (Though Kari mentioning a foot of snow in the next 48 hours is not exactly the encouragement I was hoping for today- not with my snow removal team Up North for the weekend!)

Nothing Like A Little Remodeling.......

Though we had hoped to avoid doing any major repairs on the Little House it became very clear last week that the bathroom wasn't going to last 103 more days in it's current condition.  Thankfully Weldon took pity on us and invested the last day before his vacation in creating a functional bathroom. Nothing fancy but the toilet flushes and the vanity is not going to collapse or disintegrate around our feet.  Both pluses in my book though a day without a toilet made for some creative solutions....

 So many teasing things I could write under this photo.  This situation called for my old emergency bathroom standby - crack and peel tiles.  What a change from the beautiful custom tile he installed in our old house two years ago........and all the teasing I endured over my own crack and peel tile use.

With the arrival of a their construction friend and his mass of tools - the boys were glued to the bathroom doorway and when he needed to move into the kitchen it was even better for the voyeurs in our house...and the tiny tool thieves.  Thanks Weldon and Patty for making room in your schedule to make our life easier!

Taste Of Spring.....

Winter = sickos at our house.  One of the challenges of having so many tender toddlers is that that most winters include entire months of illness for us.  Nothing to complain about, just the reality of big families in close quarters....really close this year.

Illness might be a fact for our family, but it does tend to stretch out the LONG Minnesota winters to the point that we are looking for escape.  The exciting thing this year is that since we were in Colorado until the end of January I missed the first three months and now the third week brought an amazing week of warm melting. Winter isn't over yet - but just being able to see grass peeking through the edges makes Spring feel so much more real....

Turbo Tax 2010...I gave up.

Long an addict to Turbo Tax - I gave up on them today and ran the numbers the old fashioned way....by hand.  With the delay, delay, delay game going on with the 8839 forms I have just had enough of the game.  Either way it's done...at least until they bounce it back for something silly. 

Back To Where We Belong...........

Last night -
I parked the van a block away.
Because we have no driveway,
no garage,
and in the city parking is tight,
Really tight.

I walked through the darkness,
Looking into windows
of neighbors.
Stepping over trash
that spilled over from Wednesdays
cans.
Climbing the thigh-high
wall of snow to get to the sidewalk
because the curb path wasn't cleared.

I kicked the door hard to open it,
because it's old,
really old
and swells shut.

I ran the bath for 30 minutes
to fill it
because the water pressure is low
and then passed it on to
three other kids
because the tank isn't big enough to fill the tub twice.

And it is good.

The basement will probably leak with
tomorrows melt,
The windows are weeping with the condensation
of so many sleeping children

And it is good.

The house is crowded,
no question.
With 13 of us and friends
it over flows
into the city night..
and no one minds sitting on beds or
buckets of grain for tomorrows bread.

The baby screams his toddler anger
at being put down,
and we can't get away.
It's good to be here.

I see a drug deal,
Meet a friend,
Shovel a sidewalk,
Walk back a block to find the car
Still waiting in the morning
Covered in ice,
to begin the day again.

8839 2010 Instructions: Here is the Link!

Hot off the IRS press here is the link to the 8839 2010 instructions.  Nothing unexpected - just the hard copy of what we need to provide them...I'm off to happy printing and mailing land now. Taxes done? Check!

FASD: The Trouble With 'No'......

Since I am sort of on a mini-series about the realities/manifestations of FASD in our home I feel compelled to address again the problem of disappointment.  Everyone is disappointed in life, it's normal and expected.  But for my kids with FASD it's super traumatic and many times their response is utterly out of the realm of normal understanding. 

Their disappointment ranges from "I expected you to buy me a really cool new snowboard for Christmas" to "there are nuts in these cookies a friend at church gave me?!" and into the uncontrollable things like  "I wanted it to snow today not sun!"  And the unhelpful" I want you to cook pancakes for dinner not that pot roast that has been in the oven for hours." Each disappointment, every time the word 'no' is uttered in relationship to their desires, can become a crisis trigger point.  Each of them seems to process their feelings a little differently in that moment - one totally withdraws and regresses, one lashes out in mini-rages and another starts a high pitch keening cry that drives me personally batty, but none of them has the ability to process disappointment in a 'normal' way for their chronological age.

The word 'no' and ensuing disappointment are a daily part of our families life with FASD, which should explain in large part why I started saying 'not yet' in our home in situations when a solid no is not really necessary.

FASD and Authority....

One of the themes in our life is the trouble that kiddos with FASD have in submitting to authority.  It's not a discipline issue, or a spoiled child problem - it's something deeper and constant through their lives so far and it seems across the board 'normal' for other kids with FASD's.  

Unless you live it it's hard to explain how a child can so desperately desire praise and attention while at the same time work so hard to infuriate those in authority with their disruptive and disrespectful behaviors.   It's hard to watch, icky to manage and I am sure very frustrating for those with FASD who do it.  In talking to and knowing all of mine they are desperate to be appropriate, long to be 'good,' and time after time find that they JUST CANT!  Not due to lack of trying, and weeping and repenting - but because of their pre-birth exposures to alcohol.

Dared You To Care Yesterday: Here Is The Next Part of Zeke's Story.....

How great is this?  Sarah trusted God and took the chance last week by saying 'Yes - there is room' for Zeke and now he is reunited with his wife and family.  No longer lost and without hope, he is known and loved and found again!  Praying healing over him and his family and a faith that endures forever.   I'm laughing because his bridge home was one Montana girl who has been faithfully walking in India as wife, mom, daughter and lover of the hurting.  Even in this season when funding is horribly tight and even the most basic bills were hard to cover there was room for just one more.........

Let's Talk About Aspergers And Dating.......

Within our home we have two kids diagnosed on the Autism spectrum - at this point both leaning more toward an Asperger diagnosis than a full generic Autism one, but both definitely under that umbrella and each presenting their own challenges and special talents.  One thing that I have realized over the past 10 years of living face to face with Autism is that each affected person has a base personality that is utterly consistent through their lifetime.  I can teach my son correct social interaction techniques, how to react to other peoples emotion levels in a safe manner, tricks to reading non-verbal cues and other such necessary skills to the point that he can 'pass' as non-autistic in most situations.  BUT I have to remember that his outward social appearance and adaptive skills do not change how his brain functions.   The change is in how it looks and feels to us. 

One place I can see this as entirely relevant is in the arena of dating and marriage.  My son can take and apply social cues from a 1:1 situation.  He can become funny and light hearted because he is mirroring another person.  He can get out and do new and exciting things because he is following the cues of the person he wants to get to know better.  I can see him at 25 focusing his energy so intently on a single potential mate that she is blinded to the fact that he is not her missing other half - but her mirror - and there is a terrific difference in that reality.

For example:  A person can love exercise and hiking, danger and new experiences independent of who their partner is OR they can (for a season) have an interest in all of those things because someone else is doing it and then lose all desire after a season because they were simply being swept up in or mirroring the other parties interests as part of the dating ritual. 

Here is where it gets tricky.  I work with my sons to reflect the appropriate level of interest, emotion, whatever, based on what the other person is signaling.  Works great in some situations but not so good in others -like a serious dating relationship.  I think that in those situations they will need good strong external support to help them (and their potential mates) identify between true underlying tendencies and dating behaviors that cue them to mirror. 

How many times have I heard from friends who married someone with Asperger's type behaviors "As soon as we got married everything changed....used to love what I loved when we were dating...now is totally self focused and nothing like the person I thought."   The problem I see in my friends logic is that in reality nothing had changed in their mates baseline behaviors - they were who they had always been - but they had too effectively mirrored their desired partners in that courtship phase and none had been there to help them understand. 

I know 'dateing behavior' is always a problem in our society - but for those on the Autism spectrum it presents a who new pile of complications.

I Dare You!

I have friends all over the world who are living amazing lives in all sorts of crazy situations.  Sarah is a Montana girl transplanted to India and this week is way beyond even her normal level of crazy.  I am going to link to her first post on Zeke here today and as soon as she posts 'the rest of the story' I will post it also.  This is the stuff we need to read, to absorb, to hear about.  These are the stories that change our lives because we see that one person can say 'yes' to another hurting person and change the course of a life forever.................click the link - I DARE YOU!

Our Relationship With Sugar...........

Recently I have had people asking for clarification on the 'sugar guidelines' at our house and I thought I would share my thinking here in case others have the same unasked questions.

The simple answer is that we are not against sugar in any form but that we have children who are sensitive to their blood sugar levels so we try to moderate their intake and avoid the sugar high/sugar low swings that overindulgence can bring. 

Which looks like what?  It's fairly simple.  We don't do dessert at our house very often and if we do it's something small - a single piece of candy, a single cookie, a small slice of cake...you get the picture.  To make that possible, iinstead of baking a batch of cookies we will just bake 12 - portion control by availability works great for us. (though there is a serious problem with the PMS mommy hitting the refrigerated cookie dough on bad afternoons)  We also try to avoid the overload things like soda - last night we had four cans left over from a 12 pack my friend Julie shared with us a few weeks ago.  Since it was a party meal we each had 1/3 of a can of soda.  Because no one had any expectation of soda they were all happy.

For Valentines I purchased a small (30 piece) box of nice chocolates from COSTCO for about $11.00.  Both Sunday and Monday night after dinner I read through the list of tempting delights and then each person got to choose a single treat.  Even the littlest ones love the opportunity to have a 'special' thing - and we try to treat sugar as a special treat in our house vs just another food group.

Is This How It Feels?

Wow.  I forgot how good a morning can look when you have slept more than an hour at a stretch.   Coffee for fun rather than necessity? Smiling at the kids rather than praying for patience at 5:30am when they start popping up.  Who knows why but last night we slept from 9pm till 5am - tis a gift for sure!

Valentines Love To You.....Because The Card Is NOT In The Mail....

I had a plan, it was a good plan. It involved my girlfriends -Kari, Carrie, Pam, Jan, Sarah so far away, Patty, Megan, Erin, Barb, Joy, MOLLY (who's stuffing I'm going to hug out of her sooooon) and a few more who's names I've lost in the past minute. It also involved a few relations (my mom and sis in particular) and a stack of these wonderful 100 year old valentines I have been hoarding. 

See - this year my life was going to be smooth sailing the week before Valentines and each special woman was going to find one of these recycled beauties in their mailbox today with the obligatory chocolate offering.  But reality hit and the best laid plans and all that moving stuff has interfered with the whole process so I'm setting my heart and eyes on 2/14/2012 to get these delivered.  Think it's possible? I just hope I can keep them safe that long!

Real Life....

Today a friend at church was looking tired.  It sounded like it had been a hard week and her son wasn't exactly fitting into the polite and quiet child mold at church.  Truth was, he was a little off and just plain unhappy. Kicking and screaming enough to wear any mom a little thin.  This little guy didn't need a time out or consequence he needed help self regulating, which is just hard when a mom isn't quite in the mood.

It was real life.  It wasn't pretty and it wasn't any fun for her.  Because my own life often looks like hers it wasn't off-putting, there was no need for judgement, or criticism, but there was the opportunity to take a turn holding this sad fellow and when the storm had passed, for my dear husband to deliver to us both a styrofoam cup of luke warm church coffee.  Real life is so good.

Rats For My Anniversary..........

Trying to break out of the too-tired and overwhelmed season we are in I have been intentionally looking for ways to add fun into our days.  Friday was our 16th wedding anniversary so to celebrate, we (the kids and I) took Daddy out to Key's for dinner.  When we got home and settled in to watch a little Jane Austen, one of the three year olds rooted through my secret stash and found the Valentines presents I had hidden there. 11 stuffed life size wharf rats  from IKEA and in the spirit of fun they became part of our anniversary celebration.  Since then they have been all over the house bringing lots of laughter and huge amounts of fun...a good choice though they do look a little lifelike in a neighborhood where we have actualy seen rats this big alive.

Rats on the Internet.....

Rats in the brown sugar.

Well Said: FASD and Trying To Fit It Into The Deffinition Box..........

My friend Kari wrote a great post today about FASD (and PANDAS which also affects her kiddos) and the trouble we face trying to get our kids the help they need.  Though we have a diagnosis for our kids (under the FASD umbrella) there is no box on education or any other form, for Pre-birth Traumatic Brain Injury and there really isn't an understanding in the larger community of the permanency of the issues that develop out of it.  She said it well.........

"Both FASD and PANDAS are medical conditions and both affect Bean and Java at school. I believe that it changes a person's approach when they view behaviors that way. We aren't going to consequence, therapeutically hold, or reward system either of these conditions out of my son or my daughter. We can design programming and use some of the approaches used to help children served under other categories but I want the team to keep the physical causes in mind as we do so.."

To read the rest of the post follow this fixed link.

It's another look at that fascinating reality that our larger culture hasn't caught up with the fact that there are (and ALWAYS have been) significant numbers of  FASD affected people living all around us - people who deserve a fair diagnosis and voice at the table and who so far are vary rarely being heard.

Ever Feel Like This?

This is Roddy.  My sixth son chose him out of the plethora of options at a Colorado Springs toy store as a birthday present from his foster parents. Roddy is perfect for this child.  Sort of a stable hippity-hop with ears you can hold on to - sensory, motion, balance, violence all rolled into one Orange Friend.

A 6000 foot loss of altitude left him a little 'flat' - which is a good analogy for how I feel right now.  Not quite up to par, not really on my game, just a little less than usual. Nothing terminal, just needing a little more air, time to adjust and in the end Roddy and I will both be back in the game and ready to go.

Instructions for the 2010/8839......

Here is the link to the first 'official - unofficial' set of instructions for the 2010/8839 from the IRS website. Since we don't know for sure how they figured out the carry forward figures in the 2005 -2009 years (though we can guess) those of us with rollovers are still in waiting mode...with a projected date of the 18th now bouncing around the Internet.

Valentines Are Not Fun For Everyone...............

For kids with FASD, Autism and other behaviorally manifesting issues Valentines Day is not necessarily fun.  Between the stress of an unusual project and inflated expectations as to what they will receive from others, it can quickly turn from harmless fun to sobbing histrionics. 

Tonight I would like to send a virtual double tall latte and bouquet of chocolate roses to any parent who has faced this challenge already or is heading into it this weekend.  I just finished helping our kids get ready for co-op tomorrow and believe me - it's a good thing that this holiday only happens once a year - I'm not sure I could steel myself to face it any more often than that!

Thanks ATA Colorado Springs.....

One thing that we miss very much about Colorado is Mr Wilcox and everyone else from ATA Colorado Springs.  There is a definite vacuum in our schedule that they used to fill so well.

WOW HERE IT IS....8839 hot off the IRS press

Here is the official IRS  8839/2010 link -   I didn't find it this am but it's here now in the digital fill it in copy.  I'm not seeing the instructions yet but I will be watching and posting when they are released.

Stretching Out The Tax Filing Fun.....8839 Delayed Again...

Surprise!  The 2/10 release date of the Turbo Tax 8839 for 2010 has been 'officially' pushed out another week to 2/17.  This one actually doesn't surprise me as I know how tricky this particular tax reporting formula is going to be and can only wonder at the programming that it is going to require to get an accurate number.   Particularly since TT has been not been exactly clear in past years on how to report grants and adoption gifts. 

I see this as sort of a double whammy since it all converges on one tax year - all I can say is I am sooooooo glad I'm not in charge of that particular department at Turbo Tax or the IRS!

Check: Everyone Insured Again.....

It's been 8 days since our Colorado health insurance ended and we managed to fit three doctors visits (and two RX's) into that uninsured time frame.  One ear infection, one staph infection in a toe we chewed to pieces due to anxiety, and one crabby baby that didn't have anything wrong at all.  (Except a severe case of the grumps.) I am heaving a huge sigh of relief tonight with all the paperwork now submitted for us to be insured again - I like being a card carrying member of those who chose coverage.

Stress Played Out.......

Moving our family again has clarified for me the many different coping mechanisms and defenses that our kids use in order to deal with the reality that their world has been tilted another 90 degrees off of 'normal.'  Some are over the top manic - a set of spinning tops crashing into anything in their paths regardless of rules or safety.  While others are withdrawing, simply wanting to stay in the house with the curtains drawn, hoping that nothing happens to force them out of their internal world. For them the stress of getting ready for church has become an almost paralyzing task. 

As a mom, it's sad to see their tendencies converging into behaviors which will carry  such weighty names as they get older.  At the same time I find it fascinating to be able to see the root of what is causing the behaviors.  Though each affected child is different, there are also basic patterns repeating between their hidden disabilities + the stress of moving that I can see unfolding.  From the researcher side of me I want to chart it like this :
FASD +the crisis of moving = ?
FASD + anxiety disorder + the crisis of moving = ?

Autism + the crisis of moving = ?
FASD + Autism + the crisis of moving = ?
FASD + Autism + RAD + the crisis of moving = ?

While from the mom side I just have to sigh and pray that by this time next year we will be through the hump and hopefully making forward rather than backward progress again.

I knew that moving the crew to Colorado would be hard.  Really hard.  But I expected a year or two of settling in - not the types of problems we ran into nor the long-term consequences that we are now contemplating.  Though I think and write about the fragility of my kids every day - I just hadn't realized how truly critical the stability of our home was to their progress.
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Monday Giggle: It Isn't Just The Girls Who Get Time-Outs.......

The three oldest boys were in hysterical stitches this morning as we tried to finish our Don't Waste Your Life group study.  I think the trigger was their sister saying "I sure don't want to grow up to be an old man and suddenly realize I wasted my life!"  (Based on the section we read today about an elderly man who realized that he had been chasing empty things his whole life.)  Yeah...the boys got serious giggle fits over the thought that she would grow to be an 'old man' at all - forget the larger lesson about wasting her life.  Oh well...at least they were all in a good mood.

Good News: I Didn't Bite Anyone Today.....

Thanks for all the words of encouragement and prayer over the past 24 hours.  This was a new day, with new troubles and a refilled pitcher of hope and faith.  Church was good, very good.  With sensitive Sunday School team leaders who shifted things to meet my sons needs, small group leaders who rocked another who 'lost' it and so many people happy to see us even in our mess.  It was exactly what I needed to be reminded that we are not on our own anymore.  We are surrounded by people who know us and care if our days are hard or easy.  One friend slipped me a refill on my chocolate covered espresso beans, another popped soup and bread into the van for dinner, others smiled and hugged, and over all there was absolutely no need to be 'perfect' or even barely pulled together.  Yeah - it was a good day to be in Minnesota.

"Well, You Knew What You Were Getting Into......"

Unfortunately, our society places a lot of pressure on adoptive parents to always be 'on their game ' and raring to go with their difficult children.  There is an expectation that 24/7 we should be able to maintain a home environment with high positive structure, 100% advocacy with schools/doctors/Sunday schools/neighbors and textbook perfect therapeutic parenting - all because we 'chose' to adopt our children. 

This post is fair warning to anyone who asks how I am doing this week...If I say I am utterly exhausted, dreaming of escape and really not enjoying large chunks of the journey and you respond with anything close to 'you didn't have to adopt them' or 'you knew what you were getting into" I may just lose it at you.  It's one thing to mentally accept/reject a child with a disability, its another thing to live with it as your unchanging daily reality.  Sort of like cancer.  I understand the realities of it on a certain level, but until I have the diagnosis I will never be able to really understand what it means to 'have' cancer.

So...if you see me rocking a disturbed child in the corner at church tomorrow and I am chewing chocolate covered coffee beans by the fistful watch your step.  I just might not be my normal level headed because this mama is stretched just a little thin.

17 Weeks in The Little House....

Along with managing the move, getting the house on the market and organizing the Little House I have also been negotiating with Ryan who bought our 'Old House' across the street (at 111 I think it qualifies as 'old.')

At this point he has agreed to sell it back to us June first - 16 weeks or 120 days from now.  Which is a long time from the 'small house, lets get on with our life" perspective, but about perfect from the financial side since we need to sell the Colorado house and have our tax return safe in hand before we can close. 

Another countdown begins in our life...the one that will move us back to the very beginning of this adventure, 18months after it began.

MN Life Seven Days In..............

Seven days ago we arrived back in Minnesota after our year away.  Since then we have unloaded, unpack and arranged life as fast as possible.  I take it as a good sign that the sister chicks have found their own place for correction in the little house - this lineup was due to the heinous crime of bunk bed jumping - en mass they have broken several bed slats recently and we have had to really crack down on this particular variety of fun. Especially in a house where most of the furniture is beds!

It's been a total flash back to 2000 as we have re-adjusted to a 1900's home in close to 'original' condition.  Holding our breath when we run the microwave, running extension cords all over the house to maximize the shortage of outlets.  Remembering what life is like without good water pressure, how truly cantankerous old stoves can be, how to fix seriously leaking toilets without disturbing any of the failing pipes and procuring an endless number of shims to account for the seriously slanted floors.  It's been a tad busy around here....

 We are getting a little school done - mostly math, science and spelling.  All things that the big kids can take to their beds and work on apart from the smaller kids.  Reality is that we will be working at about 50% until we move out of the Little House and then 50% through the summer to complete the school year.  Manageable if I keep my expectations reasonable and remember that this is still a crisis year for us - regardless of if we are coming or going.

Genetic Hidden Disabilities......Prayer Request For A Friend...

Sometimes hidden disabilities are not caused by pre-birth exposures or random accidents - sometimes they are genetic and can create chaos in a non-affected persons life when the disability originates with a spouse and then is passed on to a child.  It creates a triangle where one person is trying to deal with (manage, meet the needs of, understand) the differing reality of the two who are affected. 

I have a very special girlfriend who is dealing with this exact situation right now - it's scary, frustrating and exhausting all rolled into one.  Would you join me in praying over her and the others involved right now?  (sorry there are not more details - it's not my story to share.)

Adoption Tax Credit-Refund: 8839/Turbotax update....

We are still waiting with baited breath for the 2010 8839 to be released and ready for use through turbotax or even just plain old paper.  At this point the most accurate information I can find seems to point toward a 2/9 availability date.  I will be sure to post it here as soon as I get that form into my hands...in either format.