Where are you?

Last week we taught one of the preschool boys that hiding from the family wasn't a good idea.  This particular child is very smart, very emotional, very ARND and has a strong oppositional streak which translates into the disappearing boy act if he is mad at us or has done something wrong.  To help break the hiding cycle we have been working on adding 'I'm here!' to the litany of standard answers in our day.  Just like the the automatic 'thank you,' 'please,' and 'yes mom,' responses, we are conditioning him so that the 'I'm here' will pop out of his mouth even when he doesn't want to be easily found.

Not that it will work 100% of the time.  That's not really our end goal - our hope is that we are developing a crack in his solid wall of silence that can help us not only today but into the future when the hiding may become more serious than an angry preschool child curling up in the corner under a bed.

And it works........

Demonstrated at  6:00 this morning when our almost two year old - little brother to the one we were training - started hollering from his bed "Mamma!  Where are you?" ,,,,"Mama....WHERE ARE YOU?!!" He kept it up (just like I had while training his older brother) until I answered and came to retrieve him from his crib. I guess it works, even for the 43 year old parent who wanted to stay snuggled up on top of the bed the morning the response and action to the question "Where are you?" has become automatic and irresistible.

Advent Delivery......How Far Would You Drive For A Hug?

Parenting kids with FASD's often puts moms and dads onto an emotional roller coaster with no end in site and some sort of crazy unseen program running the controls.  Life can be exhausting, overwhelming, terrifying and just plain hard  - it can be intense enough to break the strongest parenting plan and melt the most type A person into a sobbing emotional puddle in the corner.  We can also drift through smooth seasons which renew us and moments of intense clarity where we find an overwhelming gratitude for the goodness of God in designing our families exactly the way they are.

Last night the Sisters (Barb, Julie and I) took our coffee night on the road to Mankato and delivered the Advent basket we (with the help of others) had prepared for Kari - another Sister in the FASD parenting journey.  Kari was totally blind sided (in a good way) when her quickie date with Barb became an all-out theraputic parenting foursome at her local coffee shop.  Our particular journey is often lonely and I have learned that driving an hour and a half is nothing when there are hugs to be shared around and conversation with those who understand our realities waiting (knowingly or not) at the other end.

Book Recomendation: Kisses From Katie

Recently I was gifted a copy of Kisses from Katie by another blogger. I have followed Katie's blog for several years and love the wild and uncomfortable things that God has laid out along the pathway of this particular young ladies life.  Katie is one of my heroes along with Sarah (who just safely delivered twins in India!) of Sarah's Covenant Homes.

I am sure I will pass Kisses From Katie forward when our family is done with it  - but I can I encourage you to consider it as a Christmas present for someone on your list? It's good reading.

A Girl Should Have New Dishes Every 25 Years Or So.......

 

25 years ago my parents purchased me a set of Franciscan Ware Ivy dishes at the Goodwill store in the Rainer Valley.  In 1986 Franciscan wasn't 'cool' enough to hit the collectors area yet so we built my first set of dishes for something in the ballpark of $20.  Since then my set has dwindled to two small wicker baskets of that pattern and a plethora of nasty plastic and correll hand me downs. 

My mom (yeah mom!) is passing my Grandfathers tea set down to our family.  It's  a bright mish-mash of Fiesta Ware and anticipating it's arrival I purchased this set of Fiesta cobalt on Craigslist yesterday so that we can make the 'big change' and lose the irritating plastic.  I have been thinking about doing this for years but never found the right reason or timing.  This week both converged and I purchased two dishwashers full of virtually unused cobalt Fiesta Ware for $120. YEAH!

Now the real fun begins as we stretch this set for 8 out to fit our family.  Personal Minnesota shoppers ready?  I have regularly seen scattered pieces of Fiesta at our local thrift stores and will happily pay you back for any size plates and bowls you pick up to fill out this set.  The brighter the colors the better - any of the wild and fun ones that they have released over the past 70 years will make table setting more interesting.  I can't wait to hit Unique next week to see what just might be there..............

Advent Alert......

There they are - this years advent baskets almost ready to be sent off to their respective homes.  The one on the left is headed out of state - it's filled and will arrive at it's destination on Friday.  The one on the right is waiting on one more item and then will be hand delivered a little closer to home.  I love making advent baskets - the thought that goes into planning them happens long before the craziness of our own holiday season crashes in and through it I am blessed overwhelmingly and prepared for our own celebration.

I have two guidelines for my baskets.  One, they have to go to a friend/relative who I haven't sent one before (except in unusual situations) and two, the recipient is usually in the midst of a life-season where a little daily encouragement is critical.  I love doing this -  pulling a team together to make a basket for a family in crisis or a mom who's ready to give up on a particular child - no question they are worth my effort.

Now, as I finish packing up these two baskets, filling them with prayer as well as daily treats, my only sadness is that I can't send ten, or thirty or a hundred out.  To bless those women I love so dearly......and those I hardly know but who are treading water in the darkness of their nights.

I love you all - and want you to know today that you are precious.  Far beyond the two who will be surprised this week.................

Ever Feel Like You Live In A Corn Maze?

Last night I experienced another one of those 'ah ha!' moments - a split second in time where seemingly unrelated thoughts, events, behaviors and observations meld into a complete picture.  It happened while I was having an exhausting discussion with a child - in a flash I realized that  (along with a mixing bowl of other issues) there is an ADD or ADHD piece to his functioning I hadn't identified before.  From babyhood we have been trying to figure out where this particular kid is at and we have spent many years at loose ends trying to describe behaviors we could only see flashes of.  Last night as his eyes darted around the room while we talked and he lost track of the conversation every time our eye contact broke (like every 4 seconds) pieces began to fall into place.  I never thought about an ADD/ADHD brain spinning inside a SPD body - but I think that
is where he is at.

Now all I have to do is find ways to describe what I saw (and suspect)to his professionals so we can look to addressing it - whether it is a AHDH/ADD, APD or IQ issue  it's real and it's hindering his ability to understand the world around him.

All that to say...don't beat yourself up over a late diagnosis of your kids, or wrong diagnosis, or no diagnosis when you see something but can seem to describe it.  Many of us have lived in this limbo for years and though the term 'medically complex' is usually used to refer to persons with more obvious and serious medical challenges, I think it's also appropriate here with our kids who have so many overlapping layers to their functioning that it seems we are endlessly wandering through some sort of crazy corn maze.

MPS: Error On Immunization Mailing.....

Yesterday we received a letter dated 10/20/11 from the MPS home school office stating that two of our kids had never been reported as either immunized or that we were objecting to immunizations.  In the home school world this is a fairly important piece of the reporting process and one that I have never neglected to complete.  After a day of wandering through the bureaucracy with no good answer I received a call this morning apologizing and stating that hundreds of letters had gone out to families in the district which were automatically generated out of the wrong portion of the database.  The end result was that we should ignore the letters since they were wrong. If you received one of these letters dated 10/20/11 don't panic - just turn them over and call them coloring pages.

FASD's: Identifying Two 'Types'....

Last week when I met with Barb and Julie (AKA: The Sista's) I observed that there seems to be two tracks within the FASD world.  Barb wrote about the idea  first here....and I'm expanding that to say I am sure that research could show that alcohol exposure  at a specific developmental time in a babies growth will cause certain types of damage....which will manifest in particular behaviors, disabilities or physical characteristics.  Just like they can determine that the FASD facial characteristics are formed when alcohol consumption occurs around day 20 they might someday also be able to track what happens when it's consumed at other key points in development.   For now though it's simply all lumped under FASD and left there without any indication of when the damage occurred.  Which leaves it up to us FASD moms as we are meeting in dark corners of coffee shops to figure out.

Here's what we have so far:
There seem to be two very specific tracks within the behavioral side of FASD's. 

The first we could call Type A:  This is the individual who is more likely to have a 'normal' IQ (say in the 90's) can 'pass' as not disabled in the general population - and who has horrific behavioral and impulse control issues.  These we might affectionately call the 'ragers' and they are an amazing group because they can present as totally under control and 'normal' in one environment and be absolutely off the deep end and dangerous in another.  So convincing are they that those who have not seen the raging side tend to believe that the parents are lying about how bad it really is.  These kids are confused, immature and afraid and it tends to come out in explosive ways.

The second track seems to be Type B:  This group tends to have a lower IQ (but doesn't have too!)  They are characterized as more obviously immature, gentle, fearful in a cowering (vs a violent) way and generally easier to live with because they are not as wildly disruptive.  It also means that they don't get as much outside help because they are not out there stirring the pot quite so violently and drawing attention to themselves.  These are the ones that most closely fit the general public's opinion on what the FASD individual 'looks' like and they are the ones that slip past diagnosis because they don't behave in ways that necessarily push parents to advocate aggressively.   They are just 'not that bad' when compared to the Type A's so they tend to get lost in the larger picture.

There is a Type A/B also where the two tendencies blend together more and I believe that situational stresses and life realities can manifest behaviors which switch from A to B - but in general there seems to be two very specific tracks that FASD takes and they become apparent to us as parents at a very young age.

How's that for theory designed on a napkin?  Three moms, two hot chocolates (WIMPS!) and a mocha later....and we have created the next generation diagnostic level for FASD.  Shhhh....just nod and smile.  It makes us feel better thinking that there is some rhyme or reason to the different aspects of this whole FASD life....don't pop our bubbles!

Choosing To 'Love Like This.....'

Several months ago I posted on the type of love that adoption has called many of us into.  A pain filled, exhausting, unrelenting love that leaves us totally dependant and clinging to our Living God.  The link to that post is here....and I am seeing it lived out in the news that our friends Randy and Jerri are expanding their definition of love again to embrace another child coming out of a very hard place. 

They are not strangers to this type of adoption -  having adopted Tristan who blessed them immensely in his short life and who was followed by Noah a year and a half later.  But in as much as every adoption is unique this one is unusually compelling as they stretch their arms wider to embrace a precious pre-teen named Sarah who's story is far too complex for a girl her age and far too private to put here on the blog.

Tonight Jerri shared that they are within $2000 of covering her adoption expenses - would you pray with me tonight that they would be able to say that the bills to bring her home are 'paid in full?'  For them her seizure disorder and malnutrition are side issues to the fact that this is a precious and hurting child who needs a family committed and able to care for her...they see her not as a burden but a blessing..one they are excited to bring into their home.  I'm excited to.  As a long distance auntie-in-love  I will be sending my own donation off tomorrow to help them close the gap on the bills.  If you are led to join me donations can be sent to KabekonaComm. Church with MATCH written in the memo. A note should be included which designates the gift for Randy and Jerri....or if that doesn't feel right but you want to help out I am happy to act as go between.

Timers From The UK.....

Yeah!  Last week these 15 and 30 minute timers arrived through Alice, a wonderful blog reader in the UK.  I LOVE them and am so thankful to her for her generosity and initiative in meeting this particular need.  Her actions are one of the greatest gifts a family like ours can receive - she took a single task off my shoulders (researching and purchasing them in europe - the only place they are availibe) and allowed me a moments margin.  A moment may not sound like a lot - but in my world the to-do list is endless and the cost for not completing things can be disastrous.  Alice gave me a little margin - thank you again Alice!

Hello...Did I REALLY say that?!

Over the weekend I realized that for years I have been reporting several of my kids with FASD's as 'working at grade level' when I meet with their various specialists.  I almost fell over laughing when I realized what I have actually been saying and how crazy I must look to the professionals.

Here's the deal: Because the world of home school allows us to determine not only the materials we use to teach, but also the appropriate grade to place them into I have held back, modified and extend each childs school year to meet their individual progress.  Which means one child might spend two years covering a single year of materials for second grade and I would call that '2nd A' and '2nd B'  and by the end of 2nd B they would be ready for 3A.  So for that particular child they are perfectly working at their grade level....but in the larger world they would be seen as a year behind and therefore NOT working at grade level.  Make sense?  Of course.

So picture me...9 years into this homeschooling journey sounding like a total lunatic as I claim repeatedly that my child(ren) who are several years behind their mainstream peers are working at grade level.  Good grief.  This leaves me chewing on an interesting question .......what do I do with this sudden and funny revelation because what we are doing is working so well for them that our specialists are encouraging us to continue.  But in the bigger picture we are not experiencing the 'failure' needed to qualify them for the help they need as they mature....a new sort of catch 22.

FASD: A Note On Medications....

Ive posted before that for 10 years we had little interest in adding ADHD or antidepressant medications into our children's lives.  I had a strong leaning toward behavior modification and believed in the power of consistent, intentional parenting. Shoot, I was a child of the 80's.  We had Natural Helpers programs in our high schools and I was sure that many of the issues I saw in other families we could avoid by using the 'right' parenting techniques.  My theories worked fine for a season - but looking back I wasn't really following the parenting protocol I thought I was -  I was changing my behaviors rather than the kids.  I simply got used to being up for hours each night with a baby/toddler/preschooler who had a sleep disorder.  I narrowed our circle of activities to reduce the sensory overload and we chose to continue home schooling in order to limit the amount of outside pressure which could be applied.

All good choices in hind sight - but really adaptive parenting vs the 'natural' intentional vision I had set out with.

In 2010 I realized that the move to Colorado had triggered a new season in our parenting lives and we were headed toward a serious train wreck with several of the kids.  Not that I wasn't still trying the parenting techniques which I thought had worked in the past (so well that 95% of the people we knew in MN didn't really realize there was anything 'different' about our kids.) but with the removal of all the supports I had in place it simply became a matter of me trying to stop a moving freight train using my bare hands. Ouch - to say the least.

Two months ago I wrote a post on how we decided it was time to add medications into our parenting paradigm. What I didn't say at that point was how often we would need to be revisiting the same list of 'indicators' as medication needs changed due to individuals health, physical growth and developmental shifting.  Drat on that.

I really am new to the medication game so I have to admit to being a little naive in how the process really works.   Simply understanding that medications help sometimes with some things but that there are other things we just have to live with has taken me some time to absorb.

Medications don't 'solve' the challenges of FASD's.  Nope.  They can (if you are able to find a medication combination that helps) reduce damaging and disturbing behaviors to improve every ones quality of life.  But the hard fact is that the behaviors and reasons behind them are still lurking around the support of the medication - these are not healing drugs like antibiotics - they are balancing ones - ones that can become wobbly very easily.

All that to say that medications are now one piece of our parenting plan - a vital component that allows the other ones to work as well as possible but we have to stay constantly viligent to ensure that they correct.  Finding the right medication and dose isn't a one time exercise - its an intricate dance with high costs if we ignore our checklist.

Our Families Favorite Hot Drink.....

With 14 of us managing the first cold of the winter season this month we have plowed through our mega bin of Russian Tea Mix.  It's time to make another round this weekend and here's the recipe in case you need a new tool in your kitchen.

Russian Tea Mix (classic version)
Choose POWDERED everything so it can store well
3/4 C Lemon flavored Iced tea mix (unsweetened - if you use sweetened reduce the sugar)
2 C Tang
1.5 C Sugar
1/2 t Ground Cloves
1T Cinnamon
Mix all ingredients and store in an airtight container - add 1-2T to a cup of hot water and enjoy!

Birthday Season Kick Off...

I haven't had much time to post this week but didn't want to miss the first two birthdays of our extended party season.  Between November 5th and January 5th we have eight kids birthdays - Kudu and Wind are the ones who get to kick the party off and I love the fact that they are both such wacky individuals.

Wind turned 6 and was the first of the sister chicks to get her ears pierced. Kudu turned  12 and was happy to receive a drum set as well as seeing friends and celebrating Metro Women's Center 21st anniversary with several of the people who were instrumental to him joining our family back in 1999.

Speed, Tuppie from MWC and Kudu.

What's Missing In This Photo?

It's trash day....five bins of recycling and two of trash.  What's missing is the 16 bags of wallpaper that I went out to condense into larger bags this am.  Really?  Someone took my kitchen bags full of wallpaper scraps? Thinking the only good thing that could come of them would be burning...which brings to mind arson or ?  I'm watching the sky for smoke today because this one is too weird for even me.

A Very Sad Book That I do Not Recommend.......

Unfortunately, I can not give my hearty endorsement to my most recent read - The Normal One: Life With A Difficult or Damaged Sibling - by Jeanne Safer Ph.D.  I tried to like it, I really did.  But in the end she endorses and justifies everything about disability that makes my heart break and my stomach churn.  Within the pages of her book Ms Safer brings into daylight all of the horrible shame, pain and anger that disability can bring into a family and then leaves the reader wallowing in the self pity and self justification of why it wasn't fair to the 'normal' child to have to endure a sibling who was less than perfect.

I wont be keeping this book on my shelf - but it was a good look into a world where children with disabilities are considered burdens instead of blessings and unwanted trials instead of joys.  Because of it I have been talking with my older kids and husband about what I read in this book and their overwhelming response was .....'ick' and 'how sad.'  To read about so many families which were destroyed not because of their children's disabilities but due to how they 'felt' about the disabilities is a good warning to be sure and check what we are treasuring closest to our hearts.

We All Need A Soft Place To Fall...........

My friend Kari posted this week that there was a certain young man in her family who though  "he is an adult now and he is doing great still needs a soft place to fall once in a while......."  Her words struck me deeply as I realized that we all need those soft landing places in our life....doors we can walk through without fear, people we can enjoy without judgement and safe relationships we can run to whenever we have really messed up. 

Soft resting places....do you have one? And are you intentionally leaving the door open for those outside your family who need a place to fall for a season before they continue on their journey?  I hope we do - because there is something that echos so much of Christ in the invitation to come, drink, rest......

May Be Displaying Learned Behaviors............

It's a bit rocky out in FASD land right now.  Most of my friends are dealing with the stress's that materialize each fall as the medical community, schools, therapists and church converge and try to help us manage our lives without taking the time to get into our realities and understand what is really happening.  It's like those examples of putting bandaid's on broken arms - I'm hearing echos of this all over the place as those outside our circle try to coach us into better parenting (because we are obviously doing it wrong), convince us that we are over critical in our evaluations of what our kids are doing (because they act so differently in other settings) and generally put our issues into little boxes with neat answers depending on the view point of the person evaluating us.

I'm personally laughing today as I watch one of our younger kiddos who falls under the FASD umbrella exhibit 'learned behaviors.'  All my kids exhibit learned behaviors.  It's perfectly normal and healthy.  It's how you learn to tie your shoes, how are able to make a swing go higher and how you figure out to use a chair to get a drink from the sink....you watch by learning.   These are the 'good things' you can learn by watching but there are also the 'bad things' you can pick up - the things that kids with FASD's tend to be drawn too.  Because of all the issues that come up with FASD's I suspect that my son learned from a cartoon mouse last night the idea of stabbing someone with a knife and he's been busy reenacting that all day.  Should we call this a learned behavior?  Yep.  He saw someone else do it first - so hes doing is - but would a neuro-typical kid become dangerous and carry that thought around in this obsessive way?  Maybe. .  But its bugging me today as I am still chaffing at one of our professionals recent assessment that this child probably doesn't have serious issues and that he is 'simply' displaying learned behaviors.

Yes - he saw it somewhere.
No - he isn't taking the learning and applying it like a 'normal' child would.

When I read 'May be displaying learned behaviors' on their reports it feels like a subtle (or not so subtle) way of saying 'maybe problem isn't kid - maybe problem is family.'  Which really isn't helpful in the world of FASD where we are fighting all the time to get professionals to take our kids serious issues seriously.  I guess the bright side to this is that I know from experience that within a few years those comments on the evaluations with shift - as the child continues in this behavior patterns that are not 'typical' for a child their age the behaviors will no longer be considered 'learned' but rather indicative of what I am seeing now.  My job is to do my best in the meantime - resisting their attempts to downplay my concerns - repeating slowly and politely my observations - documenting what, when and where I see the behaviors manifesting.  And then...when they see that there is something a 'little unusual' about this particular child slowly sliding the paper across the table that documents for them the history of what we are dealing with.

Don't be discouraged fellow mama's - when we see things the professionals don't it either means we are wrong (wouldn't that be great?!) or that we are just a little ahead of their learning curve and it's our job to help them catch up.

Modifying Our Home For Hidden Disabilities.....

When we purchased our home for the first time 12 years ago (note to those who don't regularly follow this blog- we sold the house in 2010, moved to Colorado, realized our hearts were back in Mn and in 2011 bought our house back) we had no idea that we were already parenting kids with hidden disabilities.  Thankfully God knew and had us purchase a home that is uniquely set up to meet the needs of our family in a community where we are not only loved but ultimately accepted.

This fall I am looking into the 'next' season of our life and planning the changes we will need to make to the house in order to meet the needs of our particular family.  Last week I was thrilled to solve one of the long standing issues with this house - the fact that the laundry area is in the back corner of the basement and the coats/boots/snowsuits for all 13 of us are hanging down there also.

 The solution started with this open porch off the rear of the house. It has to come down next summer and I have been trying to figure out what to do with the space.  I stood in the kitchen looking at it one day and was struck with inspiration....it's the perfect place for a first floor mudroom/laundry room!  On so many levels it would meet our needs - just being able to have the older kids be able to safely learn how to do laundry in a supervised setting (vs the dark corner of the basement) and have a place where we could gear up for winter excursions without having to climb down the steep stairs would be unbelievable.  Financially this isn't a possibility right now - but I know how to wait.  It took me ten years of planning to see modern bathrooms in the house and I'm just thrilled to know there is a potential answer to this one - sometime in the future.

In the meantime I have a page of simpler things that need doing.  Locks installed on cabinets, a security system (to let us know if kids are escaping not if burglars are getting in:), windows to be replaced, new doors for privacy in some places and to prevent privacy in others, some redecorating and reorganizing to meet sensory needs...the last one we started tackling today.

Wallpaper: As fun as Victorian wallpaper was to hang in the year 2000 - the busy patterns and 'pickability' of it was not helpful with our lives today. This morning we decided to remove the over-stimulating paper from the living and family rooms which in turn provided hours of good sensory therapy for the whole team.   By supper the paper was down, the mess cleaned up and I was gazing at nicely primed walls hidden for 11 years.  Check one thing off my list.  "Remove over-busy wallpaper."  That feels good!

Wish You Were Here..........

Last night Julie, Barb and I took a break from our respective realities and hung out in the University district for a few hours.  It was good to just be out together - away from the trauma and drama of daily life - the time made sweeter because I was with others who understand the reality of what 'going home' means.  Being social with these girls is different - we talk and laugh about huge bad things that would shock many of our more mainstream friends into utter silence and total discomfort.  With them it's normal.  It's ok to speak the unspeakable.  It's safe to be honest and not worry about what other people think.

Hanging out with them made me wish that Cate could be with us, and Kari and so many other moms who live these trauma-filled lives but have no kindred spirits to unwind with.  As sweet as it was for me, I know the loneliness that comes with walking this particular path alone and longed to pull  many of you into the dark safe circle of friendship we created last night at the Kitty Kat Club.

There Is A Grandpa Shaped Hole In Our Lives This Fall.......

I have been waiting a few weeks to make this post - delaying because I wanted the cousins and friends of our family to hear first hand that my Grandfather John passed away.  Delaying because I wanted to linger myself for a few days over the photographs and memories that stretch back into my own childhood and bridge into all 11 of our children's lives. 

I was hoping to add few black and white photos to this post which  I have stored away for safety in our basement but when I opened that particular rubbermaid bin and the smell of old photo albums and the black and white 'fixer' hit me I wasn't able to go there.  That smell brings memories of my dads life - good memories of his careful recording of our progress from birth into adulthood and the emphasize the gaping hole his passing left in our family seven years ago.  For my sake those photos will remain in the basement for now.

Now that Grandpa John has passed on also there is an echoing emptiness in my heart and in our families structure.  There are no grandfathers or great grandfathers on either side, no cousins except in California and we live a thousand plus miles away from the grandmas.  As ready as Grandpa John was to be done with this life we will miss the security and steadfastness of knowing that he was there.  Even when he wasn't able to lead us, even as his physical health declined, even as our lives got busy and my mom and her siblings needed to care for more and more of his daily needs.  Even then he was always happy to see us - always happy to hold the newest Great grandchild in his lap and never turning away from this overwhelming group we call family.

Us With Grandpa John - Summer 2009



Grandpa John holding Laughter.....

Grandpa John with Wind and Steam his namesake.