Urban Servant

FASD: Learning A New Dance....

2012-01-27T21:09:00.002-06:00

2012 is all about learning a new way to dance. It's like I'm hearing Salsa for the first time and wondering if moving to those unfamiliar rhythms will ever become natural to my 40-something body. This year is learning to dance with more partners and to find joy in the complex pattern of our unfolding life..beginning with the small things.

Small like today - I took the oldest 10 swimming at the Community Center with our homeschool co-op. For the first time I also took along two volunteer PCA's to help - sort of a trial run into our new world where we need to add in extra dance partners in order to keep everyone safe.

It was awesome.
Yeah.
12 years posing as the Lone Ranger - doing the impossible - went up in smoke as I realized how the right PCA's or helpers can become my spare hands allowing me to love my kids even better because I don't have to do EVERY...SINGLE....STINKING (35,000 diapers later).......THING from 8-5 every day. (Not that my teens don't help - they are amazing - but we are talking a bit more than they should need to carry here.)

Call me slow.

But I really bought into the 'you wanted to do this..you should be able to do it without help...or else you should not have done it' line of logic. Really? (Slap myself upside the head.) Really? One person should be able to manage all of the needs of all of these great special needs kids without help...why? Because mental/behavioral disabilities are really no big deal (insert hysterical laughter here) because it's better to not ask for help because that somehow is failure.

This new dance is complex. Since October I have navigated the first floor of the county system and discovered that my six years of college (thanks mom and dad!) serve me well but haven't prepared me to enjoy the slow shuffle of a large bureaucracy.

But I'm learning.

And I am thankful to Madeleine and Christi who joined the water ballet today and helped move us one step closer to understanding how this new season can be a joyful celebration. Even as we struggle to learn so many new dances - ones we never dreamt of needing but following the bracing music of heaven as we learn each step.

Could I Be A Racist?

2012-01-25T14:36:00.002-06:00

Note: Being the mom to AA and NA children doesn't exclude me from the self magnifying temptation of racism. Sadly, I have needed to confront my own negative ideas about race, culture, identity and social value even as the mom to 8 amazing kids of color.   I'm in a listening season of my life - many, many women pour out their hearts to me and in their words I am learning more about my own weak sin-loving tendency to judge based on race.

Could I be a racist?

Yes.
I could bring you into my home
and love you
as my own
and to the root of my being
hate your history
hate your people
hate their story.

I could think about
'them'
as separate from
'my child'
about adoption
as a severing
from things I consider 'bad.'
As a rescue
from 'those people.'
     you know
          'those' ones.
I can refuse to embrace
the fact that you have
two mothers
one pale
one darker.
Both critical to your life.

I can scorn her
in my heart
or with my words.
With the way I frame ideas
about 'before'
you were mine.
I can bring forward
in a new
and horrific way
the ugly
subtle
hatred
named racism
that taints our world.

I can fill your bottles
with sweet milk
edged in bitterness
and smile into your face
even as I scowl at
the thought of your first family.

I can hate in the way
that declares
there is no God -
but me.

No beauty -
but what I decide

No value -
but what I consider worthy.

I can do all these things
and be affirmed
within the understanding
of our world.
After all
I saved you from 'that.'

But if I do
I miss the point
and purpose
of the discussion.

Adoption
is about expanding our lives
to include another whole person
not a portion of one.
Like a marriage
but even more so.

Because life doesn't begin
at adoption.
It isn't a new beginning
where things from before
are forgotten.
No.
The DNA you carry
can't be reset when a paper is signed
to align with a 'new' family.
No.
Echos of the people in your past
are written deep in your heart,
in your faces,
in your truth.

And If I am to truly love you
I need to love all of you
including the rainbow
of people
who are remembered
within your DNA.

I can't love you
and hate your people.

That isn't the type of Love
with the capital L
I want to bring into your life.
It isn't the one
which will bring either of us
to the place
where God is the reason
for adoption
instead of me.

Sound Cancelling Headphones.....

2012-01-23T07:30:00.002-06:00

Auditory overload causes one of my kids to go into hyper-drive and become a whirling dervish and another one to shut down and become non-verbal. They both have the same diagnosis but their brains handle it is opposite ways. This morning on Groupon I ordered a pair of noise-cancelling headphones ($49 on sale from $129) using the Groupon credit I had banked because some of you linked over and ordered something from here. (Thanks whoever you are!) We have used a hunting version of these headphones with success but they are too big and heavy for our preschool crew so I thought I would try these...and the price was right!

Six He Never Held.....

2012-01-22T12:59:00.002-06:00

Four years ago I wrote this post about missing my dad and how four of my children would never have a chance to know him in person. I now have six children who only have stories and photos of Papa to help them connect to this part of our family history - children he never held or played with - ones who will never hear first hand his lingering British accent.

Today is pro-life Sunday and I am thankful that all six of my eight adopted children's birth mothers chose not to abort them - there is a gap in our lives but it is due to cancer overwhelming my father not because my children lives were ended before they were born. I am silenced by the sacrifice they made made for these children. So many who are now our precious children.

Though my father has never gotten to treasure these new additions to the family his memory lingers on in the choices we make and way we chose to live - he is still a part of our family - even though he is physically absent. And I do still miss him.

26 Projects - more or less......

2012-01-22T09:19:00.001-06:00

Last Spring after two of the kids went on a spree and dumped the medical notebooks I found a two year old note from our pediatrician which seemed to indicate Storm had elevated blood lead levels.  I write 'seemed' because it was a handwritten note at the top of a page which indicated he was in excess of the legal state limit and had been sent into the department of health. In a twisted series of phone calls to the department of health, the doctors and the lab I resolve that we had never been 'reported' and that he actually had levels far below the maximum. In the process I realized that we were eligible to apply for the county Lead Reduction program which helps homeowners remove and contain lead hazards in their homes as well as assisting them in replacing lead-contaminated windows.

It's been a long journey through the application and testing process but we are now officially on track to participate in the program. It's a four step process that flows this way. First you apply. If you are eligible based on income, age of children and age of house then they send out a testing team who use various techniques to examine the lead in the home. The team creates a report and meets with the homeowner. If there is lead present they present a series of tasks which the homeowner must complete as their portion of the abatement process. This includes a three hour training and covers both the inside and outside of the property.   Once the homeowner portions are cleared then the window appraiser comes into the home, a plan is designed for replacing the windows which meet their criteria, a grant is secured for the project and a timeline is agreed to. Installation is completed following lead-safe practices and the family must be out of the home until it is cleaned post replacement and passes inspection by the county.

We are at the 'homeowner repair' step with the three hour training behind us and the list of 25 projects on our agenda. Most are pretty simple. Repainting closets and trim around doors. Some are more complex like resealing the wainscot and risers on the stairs and painting entire porch areas. Because I hate to delay on any projects - Madeleine and I started painting some of the easy parts last night. All six of the basement door frames need repainting so I picked up a gallon of high quality - but ugly pink $7.00 'oops' paint from Home Depot and we dove in. I suspect the inspectors will laugh when they return in a month or two and find that most of the things on our list have been completed in this particular color.

In the long run these are all projects which were on my mental maintenance list. The grant opportunity just brings them closer to the front and pushes me to check them off a little sooner.  If we complete our tasks the grant will cover about 16 of the 42 windows the county says we need to replace (it's an all or nothing deal - we can't just do the 16) so we are looking into alternate loans/grants through the county and just plowing ahead with the painting until then.

I admit to being a tad amazed that this might be our last winter living with the drafts, cracks and painted shut windows which have made winters seem even longer than necessary here in Minnesota. Whether at the end of the process we are able to replace them or not, I am again affirming that God is in control of every day and I only need to know that these 26 projects are on my schedule and move ahead in confidence. Not demanding that I be 'guarenteed' windows at the end...just accepting that it might happen and holding it loosely.

Choosing to Do Hard Things......

2012-01-20T08:58:00.000-06:00

Yesterday was too busy for me to post ahead and ask for prayer. In the gaps between guests and crisis interventions I prayed relentlessly over last nights TKD class and the myriad tiny details which had rocked our more sensitive kids worlds. A careless word from an adult, peer age teasing, anxiety triggered by my absence the day before and my own concerns about the side affects of a new medication had created a swirling pool which made our twice weekly class look overwhelming and the potential for disaster loomed large. I admit - I would have embraced a dead engine (it was very possible at -2) or a puking child - I could just feel the undercurrent of potential trouble and honestly I wasn't in the mood to deescalate one more situation.

By six o'clock nothing happened to prevent me from packing up the huge amount of gear, a laundry basket full of boards and the nine of us in almost clean uniforms as we heading out into the darkness to tackle the evening. My mantra? "I can manage anything for an hour.....class is only an hour. In God's strength I can do this...." whimper...a science video and bed sure sounded easier than heading out into another potential crisis.

The drive wasn't fun. Between quarreling in the back rows and some fairly serious negative talk from the front I was about ready to turn around and head home before we even hit the freeway. But I didn't - instead I kept praying and driving and using my words to guide the kids behind me into less destructive lines of discussion and thinking.In the end they settled and sorted out by the time we arrived at class and I was thrilled that all 9 of us - all the way down to Wind - were able to break our boards when the time came. No tears, no refusal, and best of all - no anxiety related meltdowns.

It was also a big night because Steam was officially accepted into the ATA Instructor Program and received his new uniform with red collar stripe (indicating his new status) and name on the back. We didn't know that it was on the schedule for this week but in hindsight I am glad I kept praying and pushing forward with the day rather than falling back into the inertia of staying home. In our own way we again chose to do hard things rather than easy ones and helped the crew grow one step closer to adulthood. Learning to deal with things which threaten to paralyze and overwhelm us is an important skill for everyone - and in our world even the simplest plans give us plenty of opportunity to practice.

Blessings today - as you tackle whatever hard things God has laid out before you...may you do hard things well.

Science Fair Season For Steam......

2012-01-19T12:16:00.000-06:00

Years ago we started separating January out of our regular home school year as a time set aside for special projects and an opportunity to step out of our normal routine and do some of those things which we never have time for. For Steam that means a month focused on one of his favorite diversions - the Twin Cities Regional Science Fair. As a home school student he bypasses the 'school' level of the competition and goes straight to the regional fair at the UM February 24/25. If he is recognized for his efforts there the next level of the competition is at the end of March in St Paul.

This year Steam started off with one project, developed his entire reasearch plan, filled out the paperwork and then realized in a dry run (thankfully before submitting the application) that it wasn't going to work in the home testing environment. It was great to watch him come to the realization that he was going to have to start over with only a week before our family deadline for the application process. (I hate last minute pushes so we set family deadlines on things like this about a week ahead of official ones- gives margin for real crisis and teaches some good life lessons.) He was able to choose a new topic, devise a testing method and research plan and Lord willing, have it all completed and submitted by the end of the weekend. I love watching this stuff. The determination and maturity that surfaces when a crisis occurs and a new level of flexibility which shows that I truly do have a young adult on my hands.

FASD: Not Diagnosed and Identified to The Legal System......

2012-01-19T08:04:00.002-06:00

Yesterday at the Legal Aspects of FASD seminar Hon. Anthony P. Wartnick quoted these two sources...

There is a fundamental principle of juvenile and adult criminal law which is this.
"The treatment of criminal offenders as rational, autonomous and choosing agents is a fundamental organizing principle of our criminal law."
(Originally written by G. Ferguson, "A Critique of the Proposals to Reform the Insanity Defense - 1989)

Followed by.......

"There is a fundamental condition upon which criminal responsibility reposes. Individuals have the capacity to reason right from wrong, and to choose between right and wrong. It is these dual capacities - reason and choice - which give the the moral justification to imposing criminal responsibility and punishment on offenders. If a person can reason right from wrong and has the ability to choose right from wrong, then attribution of responsibility and punishment is morally justified or deserved when that person consciously chooses wrong. "
(R v.Ruzic, 153 C.C.C.1, Supreme Court of Canada)

Wartnick opened the seminar with these two points followed by a basic description of persons affected with FASD as often.....
Not rational
Not autonomous
Not choosing agents
Not able to reason right from wrong
Not able to choose right from wrong

I would add one more thing to his list......

Not diagnosed and identified to the legal system as falling under the FASD umbrella and therefore wrongly judged as fully culpable and expected to behave as if they are all the things which they are not. (You might need to read that sentence twice but I think it makes sense - especially in the light that most of those who have been damaged by pre-birth exposure will never have it identified as the root of their problems. They are simply judged based on behaviors and choices which are - to a certain extent- beyond their control and which they don't have the ability to change.)

Six Hours Later: I'm Even More Convinced That FASD Diagnosis Is Critical...

2012-01-18T20:48:00.002-06:00

Today I invested my time and energy at a seminar focused on the Legal Aspects of FASD. As much as we hope our kids wont develop problems which involve the police, the reality of FASD's says that some will. Not because they are 'bad' or we are lacking in our parenting skills - it's the reality of a punitive justice system and the types of outward behaviors manifest with FASD's.

Throughout the presentation I was able to draft an emergency preparedness plan for how our family can respond if/when we enter the legal system. Some of the pieces are already in place. Clear and supported diagnosis of FASD's and other challenges, accurate record keeping of visits, medication and testing, a strong network of regular providers who understand and believe in our children's issues and a clear vision of a future that includes both supports and successes. There are other pieces we will fill in later (when a specific legal issue arises) which will be the lawyers, FASD legal experts and advocates to represent us.

Just having a plan for how we will navigate the legal system takes away much of the emotional chaos we might encounter. Because we have thought about this ahead of time we wont be simply swept along by the legal process. Rather, we will be prepared and knowledgeable about what is happening and how we need to advocate and protect our children in consideration of their disabilities.

With the information I processed today it seems that the single most important piece to successfully navigating the legal system with a FASD affected person is to have an early, clear, diagnosis (whenever possible) and documentation which demonstrates how it affects their behavior and executive functioning. If this piece is in hand before the legal crisis occurs then much of the confusion regarding 'how' we (or our representatives) should address the court is already in place. This is critical because FASD's are hidden disabilities and the court will process our children as 'normal' and therefore under the same rules and punishments as a non-FASD individual unless we can demonstrate otherwise. As a mom to several who look normal but most certainly are not I can see the dangerous path they might end up on without advocacy. I have to write - specifically on why persons with FASD's should not be judged under the assumption of competency....but that post has to wait until tomorrow.

Kudu Set's Things Straight........

2012-01-17T12:49:00.001-06:00

At the end of last year I realized that there may be an attention/focus issue adding to Kudu's challenges -it was something significant which I (and all the doctors) had missed for 12 years because it was masked by his strong sensory avoiding behaviors and was only evident in his eye contact. Last week we started him on a medication trial to see if it would improve his ability to track conversations and focus. He asked me to post these photos to show you the amazing results.......

Day one he cheerfully volunteered to sort and organized the family VHS collection. Notice the amazing labeling he did and the smile on his face. Not normal for a kiddo who loves order but wasn't able to personally pull it together before this to make it happen.

On day two he realized that the refrigerator was a mess and asked if he could organize it. Being such a good mom - and because it needed it in the most horrible way - I turned him loose on the project. He dove in and did the nasty job without any assistance and with good logic and perseverance.

We can definitely tell that this isn't the perfect long term dose/medication for him - but our first trial into this new area has already helped him do the things he has always longed to do better. The clincher for me came during one unfortunate 'non-theraputic' parenting moment last week. After discovering a monstrous laundry basket dump scene in the basement I threw an ugly tantrum in his general direction. In the past this would have sent him way off the deep end. This time he got upset (because I was upset which really disturbs him) but when I stopped - he stopped. Which is an utterly amazing improvement for him and enough encouragement for us to continue pursuing this particular line of medication and seeking God's wisdom as each piece of the puzzle is uncovered.

Family Style In-Home Therapies.....

2012-01-16T13:13:00.000-06:00

As much as I would love to include outside OT/PT therapies in our schedule I haven't found a way to make it work without rocking the crew. So I have been researching the Internet and gleaning ideas from my friends who do actually have OT/PT regularly on their calenders and developing out own 'family style' home OT/PT program to help address a few of our more pressing needs......

Like the 'Bosu ball - Love Sac - flying child therapy'

And the 'Thinking Putty till your hands ache....'

As well as the 'roller boy' tactile game......

And the 'strange looking critter in Body Pod....'

And never to be neglected the 'Rody Max vs Little Rody hopping race game...'

How A Double BOB Fits Into A 15 Pass Van....

2012-01-15T07:52:00.003-06:00

This post is a tad specific - space is super limited in a 15 pass van since the rows extend to about 8 inches from the back doors. Transporting a double stroller has always been our challenge and the best method we have found (for the heavy-duty dual BOB stroller we use with the 4 year olds) is to strap it to the first row of seats using the brake release. Perfect? No. But very possible and absolutely worth while as we can easily fit our two 4 year olds plus the two year old in it when we take field trips.

FASD: Some Books I Just Don't Want On My Shelf...

2012-01-13T21:06:00.000-06:00

There are a lot of books out there on FASD. Many I keep on my shelves for reference and as a lending library for friends - others I keep a little more restricted and have begun taking off the shelves and out of our teens easy reach. It's a sad reality but the consequences of FASD can be very scary and we don't need to introduce any new ideas into our home before their time.

I know you are itching to find out what I have been reading in the New Year (after all what does a wacky mom like me read beyond Dick and Jane?) and with a post titled like this your wondering what sort of late-night, loose your sleep binge I'm on this time.

Aside from the fact that Julie and Elijah are back in the hospital (please pray!) which called for a late night Sista's run to restock her stash of Diet Pepsi pairing up with the FASD and the Law seminar later this week I pushed to finish Fatal Link tonight so I can return it to Barb. Sleep? Optional when there are books to read, friends to encourage and real life learning to be seized.

I'm not going to put too much on here about the book (Fatal Link) because it's one I will purchase but keep out of the main circulating areas of the house. It's an important book on FASD - demonstrating what the predictable end result of prenatal exposure to alcohol can be in a worse case scenario situation. My kids read this blog - no need for me to say more than that.

But I would definitely recommend any parent to FASD kids read it because much of the power of fear in our lives comes when things happen we have never contemplated before. Read it, ponder it, pray over it. I believe doing so will equip us to face it if we ever walk these paths as a family. I also think it would be helpful to those who work with individuals of any age who have been alcohol affected before birth - just understanding a little more about the how/what/where/when of life with FASD might expand our understanding of what we can do to help reach helping hands into hurting lives.

Historical Society Memberships For Half Price.....

2012-01-13T19:44:00.000-06:00

Minnesota friends : Groupon has the Minnesota Historical Society Family Membership for half off right now. That's $35 rather than $70 for a one year family membership. Wahoo for us geeky living-museum types!

FASD Dogs......

2012-01-12T11:39:00.000-06:00

My friend shared this link to 4paws for disability today - I liked what I saw there. On the website they are pretty specific on how their dogs are trained to assist persons with FASD's to deal with sensory, emotional and safety issues and it made sense.

Unfortunately, at this point I doubt that we are being led to add a working dog to our family structure due to allergies and the need for dogs to be person specific. Though (in my crazy paperwork loving world)it might be fun just to apply - do you know you need a prescription for a dog? I would love to ask our primary doctor to write that one - it would send her into fits of laughter. Of course, long ago, she offered to write me one that went "One glass red wine daily at 5:00pm repeat as needed." Maybe some of you are a little more sober minded and will feel led to add a helper to your FASD parenting program.

Umm...Honestly Officer It's Not What It Looks Like......

2012-01-12T10:17:00.000-06:00

This is what my purse looked like this morning. It's a mix of items which have been confiscated from various kids in our home over the past 24 hours. Long handled screw drivers, flashlights, misc cutting devices including a pocket knife and hand fulls of crumpled up cash and stripped screws. I had a momentary flash of fantasy where I visualized returning to our house in the wee hours of the morning (after a Sista's meeting) and being stopped by an office. Home invasions are an issue in our community right now and if I was wearing my usual black attire and packing this particular combination of accessories it just might look bad....I think it's time to transfer my 'treasures' over to the locked box under the counter and spare myself that particular bit of excitement.

Broken Record or Message Of Hope?

2012-01-11T22:14:00.001-06:00

Lately it seems as if all the connecting and counseling I am doing with adoptive families is along the 'don't push your kids off a cliff - there is something hidden here that is serious' and 'get a diagnosis ASAP - you are not crazy!' lines of logic.

To myself I sound a bit like a broken record....over and over again I seem to be covering the same arguments and discussions - different individuals each time through with only the names and details changing as they travel along a far too common plot line. "We thought we were fine...we thought love was enough...we are in way over our heads...and don't know if we can continue this..." This is new territory for me as my adoption discussions used to be mostly encouraging and admonishing families that every person is truly called to be involved on some level with the needs of the orphan. Nowadays I am doing less promoting of adoption and focusing more on trying to help families deal with the often hard realities of parenting their adopted children in the best possible ways.

In facing this shift I often hear loudly from the negative side of my brain...."WHAT?! are you saying that all these kids have issues and you are the only one who is actually seeing them? Arrogant. Stupid. Over reacting. Fruitcake. You are a wacko for sure because you are stereotyping and simply seeing things which are not there!"

The opposite side of my brain tells the other side of the story. I says...."You saw these challenges written in the social histories, faces and behaviors of these precious kids as they came into their permanent homes. You loved them and their parents in whatever ways possible and spoke truth gently to them over the years. You wanted to be wrong. But over time the layers have peeled back and they find themselves where they never wanted to be - on the path you predicted. They are spinning into a vortex of despair with kids who are in trouble, families who are hurting and a stunned silence that is over whelmed by the screaming need for answers in their heads. You loved them when it was easy and you love them now...don't stop pointing them toward hope and a future. Even if the future isn't what they planned."

Both voices have points of validity. On one hand not every adopted child has mental health, educational or exposure related challenges while on the other, my own informal tracking is now tallying that regardless of country of origin or adoption method 80% + of the adopted children I personally know do experience one or all of them.

I guess my perspective has matured just like the rest of me (quit your giggling!)- I still love adoption and advocate for no child to be left waiting for a forever family. But now my enthusiasm is tempered by the daily grinding reality that many of our precious children are facing a lifetime of struggles which reach far beyond those of race and culture. Our kids have prebirth exposures which have damaged their brains and bodies in ways we could never have imagined. They have the echos of their biological families mental illness playing out in their own lives and are not blending smoothly into our churches and social structures.

It's a sad but honest reality. Whatever the names are we end up using to explain the realities (RAD/FASD/ASD/PTSD/MI/LD's etc) huge numbers of adoptive families are discovering ten years post placement that they are in seriously deep parenting waters and they need help.

In the Lord's strength I want to be the sort of person who is committed to throwing out lifelines and life preservers to people in over their heads. Not as a pastor or counselor (because I'm not) but as a friend and another mom on the same journey. I want to feel enough of other families pain to stay focused on the reality of suffering as our lives unfold. I do not want to be a broken record - I want to be a city on the hill - drawing weary strangers into sweet fellowship and offering the hope that can only come through knowing that God is good, life is hard and we are not alone.

I Love My Child. I Hate FASD.........

2012-01-09T13:52:00.000-06:00

In 2011 I wrote a poem about love being enough in adoption - at least a certain type of love, and as the New Year is ringing in crisis after crisis in my larger FASD community I am eager to remind each of us that the love of our children and the cost of their behaviors are two very separate things.

As a reminder today I'm chanting this mantra over my own crew......
I love my child. I hate FASD. God loves both me and my child and He is more than enough for us both on the darkest days. We can do the next thing.

Storm Turns Four!

2012-01-07T06:41:00.000-06:00

This week ended our extended birthday season and officially marked the 'everyone has had a birthday back in Minnesota' pattern that is so important to a few of our kids.

It was Storms turn for a birthday and he is now 4! Four is a great age for him. He is getting to know all his doctors and now has the verbal ability to create nick names and stories about them...he has the 'snake dr' the 'old dr' and the 'put stuff in my eyes dr.' For Storms birthday this year he wanted a larger Rody - the Rody Max to be specific. I can't seem to get a clear enough video of him riding it but he bounces his way through the house in fits of hilarity and has passed the smaller one from last year down to Laughter so that they can race.

"Well....If You 'Really' Want to Get That For Free...."

2012-01-06T18:00:00.000-06:00

(Warning: This post has a bit of the mama bear in it....I hate the way our society tends to make snap judgements on people and situations based on a momentary interaction and though this particular judgment was directed at me I felt a stab that was intended for the voiceless masses who find God's plans for them include involvement with Medical Assistace. Ha. How's that for a run-on sentence?)

Ignore the warning. I typed the whole evil rant and then deleted it. There wasn't anything there that needed to be said publicly. Nothing God honoring or edifying in it at all. I was simply pissed off. Done with that now - but I would like to encourage you to look at families who have needed to utilize county/state assistance through a different lens....especially those parenting special needs children. Lets try again with a little more control................

Special needs kids cost a lot to raise. Period. Just the cost of diapers/pullups for a child who is 4,8,14 and then an adult can cause a normal person to freak out at the cash register. Medications for a special needs child can easily run into the hundreds or thousands a month and often the costs come directly out of the parents pockets. Insurance doesn't willingly cover the plethora of behavioral/psychological treatments and cocktails that many FASD kids need to be their best and often times we end up caught between MA that wont pay for a generic and private insurance that wont cover a name brand.

I can testify to this. Personally I have stood at the RX counter debating the need for a $260/month medication that two of our children take and which insurance randomly declined to cover several times. Not that $540 would kill us - but that particular month our out of pocket medical bills exceeded our total income and charging another chunk on the visa was a little scary. In the end I chose the medication and we covered it out of pocket for several months until our insurance agreed to approve it again. It wasn't a hard decision, this medication is an important piece of our treatment plan and it allows our children to function at a much more 'normal' level than when they are not on it - it sure wasn't worth throwing away their stability simply to save money.

This month it happened again. I went to pick up the refill for this medication and it had been denied because of the New Year and the fact that the pharmacy had no 2012 prior authorization on it. The good news was that the price has dropped to about half what it was the last time this happened - the sad news was that when I asked the pharmacist to request the pre-auth for us her response was ' Well....if you really want if for free....." accompanied by a scowl and obvious desire for me not to push her to do it because she didn't think it was appropriate. (or maybe she needed to just go to the bathroom and it was one more task before she could excuse herself...It makes me feel better to assume that was the issue...that she wasn't passing judgement on the fact that this child has recently been approved for MA.)

Unfortunately, I had my own FASD like moment triggered by her words. My immediate impulse was to jump over the counter and bite her really hard on the arm. Free? Free?! Really?! My head spun as I realized that she was implying we are willfully sucking off the system because we have finally added secondary MA insurance to our regular health insurance plan because our kids need medications and health care that insurance wont cover and the medical bills are overwhelming.

I was stunned - which was probably God's special intervention since I have a pretty strong history off saying what I think, before I stop and think, and there wasn't anything very nice in my head at that particular moment. It sort of went along the lines of "Grr.....free?! The state has gotten an amazing deal with these kids not being in special education and foster care for their entire lives.....FREE?!! Let me tell you how much work has gone into this great 'free' perscription." The good news was that all that came out of that was "please request the PA and let me know when you get it."

It's been a quiet few days here on the blog as I chewed this idea over....heart searching....confessing....understanding and a little more light shed on a lonely place where we adoptive parents need to be advocating for our quieter and less agressive counterparts.

We need to talk about the fact that parents (adoptive and biological) simply can't afford to raise most kids with FASD's without some sort of outside support. For many that support is financial - kids with FASD's need a lot of psychological/behavioral help and private health insurance isn't good at covering many of the things they need to do well. It isn't more 'christian' to raise a kiddo with FASD's without outside support, just like it isn't 'unchristian' to ask for help when we need it. There, I said it - it took a whole page to get to my point - it's isn't better (or worse) to accept help through the county system. And other families shouldn't feel ashamed when they join us navigating the crazy system we call MA.

Braces For Two.....

2012-01-05T11:41:00.000-06:00

One thing that helps in a large family is pairing up doctors and dentists treatment plans so that we can protect the daily schedule as much as possible. Star and Kudu are both sporting brand new braces this morning and thanks to your use of the Amazon Link to the right the January payment has been made. Only 17 more months to go on these two...and six months before the next two start...(but I am so not thinking about that reality!)

Bad Lighting Decision..........

2012-01-03T13:06:00.000-06:00

Eight years ago I chose this light for our second floor hallway. Victorian stained glass was the theme and it was on sale. Here is has sort of a 'Ferdinand in the flowers' look to the pattern- in real life the colors are darker and it looks like some sort of evil thing with glowing horns.

Ewww........

One of my January goals is to remove the 'devil sconce' and install something a little less threatening. Dare I ask if anyone out there wants this one?

It's creeped me out for too long!

Opportunity to Grow......

2012-01-03T07:15:00.000-06:00

Almost every activity at our house is layered in purpose and challenge. For those who know Wind in person the fact that this fireball is standing patiently next to the stove waiting to flip the pancakes is close to amazing. It's taking every ounce of her self control to do it....but she is doing it!

This Year.......

2012-01-01T13:46:00.000-06:00

This year......
I want to hand out kisses every morning
and not forget in the rush to 'bigger' things.

I want to smile more,
laugh more,
praise more,
not because life has gotten easier
but because God is good
and I am beloved.

I want to celebrate each persons success
as their own
not compared to peers
or siblings
or my own stupid ideas of progress.

I want to eat meals with our hands
because the forks aren't clean
and run barefoot down the street
to see the hawk.

I want to loosen up
lighten up
let go
of another emotional layer I insist
on carrying.

I want to laugh
about the Colorado adventure
instead of whispering in my heart
that it was a year of brokenness and tears.

This year........
I will weep with those who weep
rejoice with those who rejoice
and dance every day
with the One
who makes all things possible.

This year...
may there truly be less of me
so that He can be seen.

BSecure On Line......

2011-12-30T15:46:00.000-06:00

Laughing hysterically here....I have been out on Facebook catching up on some of my girlfriends and my text alerts from bsecure are going ape. It's good - and it's funny. For us this program works well - I'm not sure how useful it will be once my teens are regularly on Facebook and other sites but wow do I love getting a text any time one of our electronic devices trys to access something on our watch list. For this season it's a great answer to restricting access to p**n and violence. Best thing? It's cheap!

FASD: Stepping Over The Caregiver Line......

2011-12-30T14:09:00.001-06:00

Even though FASD has affected our life directly for 12 years none of our kids had a diagnosis until early in 2009. It wasn't that we didn't know there were issues or that we were denying we needed help, it was simply a lack of knowledge equally shared between us and our primary medical providers. We were all simply ignorant and as a team we have been on a pretty steep learning curve in the three years since that first diagnosis.

I started my learning with technical definitions and a medical understanding.......what alcohol can do to unborn babies and how that damage is manifest.

Then I moved on to diagnosis....determining which of our children fell within the FASD spectrum and which ones did not.

At which point we started learning what FASD meant to each affected individual in our family....where IQ's fell, behaviors, thoughts, aptitudes and what particular gifts were wrapped up in each one.

And then I realized that I only had one side of the story.
My side.

Drat.
I caught myself doing it again.
So far this journey has been mostly about me.
I have invested most of my energy learning how I can parent, support, encourage, teach, train, and equip my kids with FASD's.

But I haven't stopped to figure out the other side.
The reality of waking up every morning with FASD.
The challenge of living every day with a brain that wont do what other people do so easily.
The frustration of trying so hard and failing so often.

I had lots of book knowledge and care education - but very little understanding of what it meant to have FASD and I was honestly (at some level) trying to avoid that side of the issue.
Which isn't pretty to admit to.
But it's the truth.
I didn't want to know how hard it was for my kids- my own hard seemed plenty tough - and theirs had to be tougher. Denial was working for me....until I was reminded again that this isn't about me. Crap.

In response this winter I am committed to stepping over the caregiver line and trying to develop an understanding and appreciation of what life is like for those with FASD. I'm starting with the easy part - books. This week it's Liz Klup's Braided Cord. As an adult with FASD Liz is painfully honest (as are the rest of her support team) but that's what I need. I need to know how it 'feels' to be a person with FASD - what the world looks and tastes and sounds like. Not that Liz is the end all of 'what it means to have FASD' but she is an adult who has found the words to describe what I can only look at from the outside.

Double Stroller To Share........

2011-12-29T10:21:00.000-06:00

Since we don't have a new baby this year my twin Graco has sat unused for the past six months. I like this one for the 0-24 month range and since Laughter is now two (with no younger kids in sight) I can't see a need to store it.

It is about a year old and will fit behind the fourth row in a 15 pass van - the seats are a little stained but I have a brand new set of seat covers that Graco sent me when one of the seat belts broke. A few minutes with a screw driver and this will look like brand new. Here is the same one on amazon if you want to see what other people think of it. I think it was useful for a particular season but now that the boys are bigger I am more likely to use the Bob that Julie shared with us last summer.

I would prefer to share this with someone local as shipping would be expensive.

Do you need it next?

Trying To Play The Wrong Way.......

2011-12-28T13:32:00.000-06:00

Within our FASD crew there seems to be a common challenge where they are honestly trying to engage in positive group play but choose a method of engagement that almost always fails. Examples seem to look like this:

1. Wanting to join a football game in the alley so they rush into the middle of the game, grab the football and run down the street hoping everyone else will chase them.
2. Wanting to wrestle - so they run up behind someone who's quietly sitting on the floor and crash into their unprepared back.
3. Wanting to toss the ball so they take the ball and throw it at someone.....which just might leave the unsuspecting playmate with excruciating pain and a broken nose. (yeah - that was me.)

All three examples are considered normal within the realm of kid behavior - problems which a little peer pressure, careful discipline and experience tend to sort out fairly quickly for an average person. For those with cause/effect comprehension issues, ADHD, ADS, impulsivity, FASD and a plethora of other challenges these simple lessons pose a different situation entirely and we have our own phrase to describe it. We call it 'trying to play the wrong way,' and in action it looks like this............

The child who broke my nose with the softball wasn't being bad - and she didn't need a lecture and or discipline. What she needed (once I could see straight again) was a hug because she was scared by my response to her attempt to play toss (yelling and grabbing my face) and a reminder that that was 'trying to play the wrong way' and that it 'would work better to use words before bodies' the next time.

This was a hard concept for me to figure out - how to bend my own thinking so that I could possibly imagine that these troublesome behaviors might not be intentional provocation or naughtiness on their part - but that they might just be a disconnect between what they wanted and where they ended up. My daughter didn't need a spanking/scolding/consequence when she broke my nose - she needed my help to figure out what had gone wrong in her plan.

In reality, embracing this concept dealt another serious blow to my well-loved traditional parenting methods - the same methods which had worked with our neurotypical kids were worthless and even harmful for those who's brains process differently. Not to say that there are not days when certain kids are not out looking to stir up trouble and dissent...but the logic and emotion behind their behaviors is usually at it's root, based in something different.

Sweet Moments......

2011-12-27T20:45:00.000-06:00

Speed's first guitar lesson was last week.

It was so good to see him tackle something new with an 'I can do it!' attitude.

Christmas 2011....Full Circle on The Colorado Experience.

2011-12-27T10:53:00.000-06:00

Christmas this year brings the Colorado story full circle. A year ago this week Dearest was offered a position in Minnesota and we realized that our stay in Colorado was more of a sabbatical rather than a long-term piece of our life story. As a family that is committed to doing 'hard things' which stretch our kids I can say it was good to live through the experience. As a mom I can say THANK YOU GOD it's over -and we all survived!

Christmas this year wasn't as calm and peace filled as I would have chosen. The month of December was overflowing with necessary doctors visits and the hundred tiny stresses which come when I don't have all the supports in place to make our life predictable, focused and calm - but I can see and feel the settling occurring as I wiggle each of the remaining pieces into place.

Here are a few photos of our celebration this year.....quiet, low key and above all a sinking back into the exact place where we belong.

Kudu was my helper at the Police Officers Christmas Eve Dinner. He did great as we prepped, served and cleaned up dinner for the officers who need to work through the holiday.

Weapons were a theme this year with the male part of the crew....

Dearest found a three man sling shot and a pack of angry birds stuffed toys under the tree which immediately were put to use in the alley.

While the older boys fascination with swords was satisfied through Vision Forum's high impact resin ones....

And the younger four boys gun -battle needs were met with soft rubber ammunition and a freestanding target.

The baby was thrilled that there was (and still is) an overabundance of gum in the house ......

And there was an overwhelming sense of relief in the house as we settled back into the celebration of Christ's birth with the church and larger community we love.

The 'Right' Way To Parent Kids With FASD....

2011-12-27T06:07:00.000-06:00

(Note: This is a repost of what I wrote a year ago in the hills of Colorado. I'm wanting to end this 'growing' year with FASD on a postitive note so I am going back and reminding myself of where we have been and where we are heading....)

Isn't that a catchy post title? I'm sure that all my friends who have experience parenting kids with prebirth exposure issues are laughing their heads off right now because they know where this is headed....and those who haven't quite hit the parenting wall with their FASD kiddos or who don't actually have any affected kids are waiting for the magic answer. Well here it is.

I think that the right way to parent kids with FASD is......

By the seat of my pants,
with all tenacity to a single thought
'I don't care what you do...we are in this together.'
Burn my house down,
steal my car,
scream,
cry,
wherever you live,
whatever you do,
I am beside you.
my own knife drawn,
my back to the wall,
you are not alone.

I will parent you..
within the safety of a community who cares,
with my teeth sunk deep into
the doctors,
and teachers,
and police officers,
and friends....
who know you.

At the end of my rope,
Because that is often where I live,
And on my face
Before a living God
Who knows what it means
to live
and love
and walk through your painfilled life.

Understanding that there is no
'right' way
no magic cure
no trick
to parenting kids with FASD.

It's about being there
and being real
and holding tight
and leaning a new flexibility
that no one ever taught us.
And most of the world
will never need to understand.

It's about survival
and hope.
It's about treasuring you exactly where you are
and finding ways to help you absorb that truth.
Deep into your hearts
so on the hard days
you wont believe the lies

Do You See What I See........

2011-12-22T21:48:00.000-06:00

My monster pot boiling 12lbs of potatoes!

Which wasn't possible until this afternoon

when a friend from church

purchased and installed a new stove for our family!

I am...

Humbled.

Thankful.

Overwhelmed.

That our friend, his wife and his sister love us enough

to solve this silly stove problem.

Thrilled.

That they came and hung out with us last night

without calling ahead.

Walked right into the post bath chaos of our real life

and settled in for a visit -

instead of hurrying away.

And that today

I watched as he unveiled the exciting

novelty of a 'door' and a 'light' both in the oven.

To my three youngest sons.

Filling a portion of the Grandpa gap

that echoes in our life.

Grateful.

To be loved exactly where we are at.

Holiday Preperations........

2011-12-22T07:19:00.000-06:00

Cookie baking is in full swing in our house - three types yesterday filled trays that are now safely stashed in the freezer for the Police Officers Christmas Eve Dinner and to share after church on Sunday. Another few batches are planned for general snacking today and then I think we need to be done since the butter supply is almost gone.

With so many details to manage my time has been extra short this year and I have been stacking the holiday shopping in the pantry for wrapping. Laughter (who's 2 today!) discovered the fun of using those nice boxes to access the snack cupboard and the excitement of the Terrible Two's are well underway.

On a side note - I was surprised at the shipping choice one of my retailers chose for the package which arrived yesterday. The Bosu ball came in it's original packaging with a shipping label pasted to the front - In the end it worked out fine as we have too much excitement and nervous energy in the house right now and the bouncing helps. But please...the week before Christmas a little brown paper might have been considered. :)

Looking For The 'Perfect' Large Family Stove?

2011-12-20T09:45:00.001-06:00

Thanks all you shopping friends! Over the weekend our Amazon Associates account showed that we have 'earned' $111 by you starting your Amazon shopping through the link on our right sidebar. I was excited by that and did the dangerous thing - a little stove window shopping at the Sears Outlet. It was good - I found the perfect stove setup for a family our size and it was bad - for the exact same reason.

Here's a test - can you see what is difference is with this burner configuration from the standard 5 burner setup?

It's probably not fair to those who don't cook with several 20/16/12 quart pots at a time so here's an explanation of the situation.

Big pots have several problems:

1. They are uber heavy when full and grate sliding is a danger when removing them.

2. They are too wide and its hard to get even heating on a pot that sits 50% off to the side of a burner.

3. Because they are too big the front burners are too dangerous....duh...hanging over the front is bad.

4. Bringing a huge pot to a boil is often impossible or at the least a tediously long process. Many stoves (like my current one) don't have the BTU's to do it.

Do you see how all of these issue are resolved with this burner setup?
Probably not because your hands are not all over it like mine were so I will give you a little tour....

Problem #1 - grate shifting. This stove top has three separate sections which pin together and create one solid (aka almost unmovable) surface. No more superheated grates sliding toward my body as I shift 20 quarts of boiling sauce off the burner.

Problem #2 - Pots too wide for even heating. The left hand 'griddle' burner can be lit in conjunction with the rear left one and you end up with an elongated 'double' burner for those monster pots. Yes - other stoves have this but it's in the center position rather than the left and makes the other four burners useless. I took in my three largest pots and all three of them fit and could be used at once with this

Problem #3 - Front burners are dangerous. Still an issue - but with the setup for the left side there isn't the need to use them as often.

Problem #4 - Tedious boiling. It has a high btu burner which isn't unusual in a newer gas stove - it's just important as our days become more busy.

Bonus points for this range....it has a 'true' full sized convection oven plus a lower drawer style one which heats separately up to 450' and is deep enough to hold two large casserole dishes. Not necessary by any means but I can see some use to it.

Of course this is all speculation on my part...I'm not looking for 'perfect' in my life and I certainly don't need an expensive stove like this one. I have been cooking on a traditional four burner stove since 1995 and wouldn't truly need to replace ours except that parts are no longer available and something breaks about every six months...which should hit about April. This is simply some fun window shopping and even at the Sears Outlet this particular one was $1300 (down from $2300 because it had a scratch.) Not that I will pass it over it I find one on Craigslist for $600....but it is so well designed for big-family cooking I wanted to share it with you. (Here's the link if you are a large family looking for something like this.)

Praying Over You.....

2011-12-19T04:43:00.000-06:00

4:37am - I'm wide awake while the rest of the house sleeps. Words and thoughts and plans are jamming my brain but I am unable to face the mess that is my kitchen counter. I think I will pull on my parka, go sort a corner of the basement...and invest the time in prayer. Know that if you are reading this you have been prayed over this Monday morning.

I love you in Jesus~ may His blessing overwhelm you as your day begins.
d

Sensory Needs...Every Morning.....

2011-12-17T08:21:00.001-06:00

The first hour of our day is filled with refill trips to the coffee pot, a round of essential mood moderating medications and a good dose of sensory input. We have a choice - get out the tools and help fill those sensory tanks using the bumpy ball and other toys or simply let things take their own course and allow the spinning/screaming/crashing/provokingly wild behaviors which have the same effect. On good days I go for the ball - on bad ones I get the box of band aids, sip my coffee in the corner and wait for the first casualty of the morning. Either way the day starts......

Consistant Linear Progress - If Only In One Part Of Life!

2011-12-16T15:12:00.001-06:00

Speed receiving his Red belt as siblings watch...

Last night nine of us received our Red belts at TKD. It's has been good for the eight oldest kids and I to focus on a single goal together - the sequential, predictable progress through the color ranks toward our Black belts has helped bring success to those who struggle and opportunity to those who excel. Red is the last step before we test again for the Black Recommended and then Black Decided. With good team work and some serious effort we may all be Decided Black belts by mid summer. A milestone for each of us.

2011's FASD Crisis: Making Us Stronger and Less Afraid...

2011-12-15T13:16:00.000-06:00

2010 and 2011 turned out to be all about moving and clarifying several of our more murky diagnosis - 2012 seems to be focusing in on settling down and positioning our family for the next exciting phase of the journey. Between now and the New Year I can see the last few pieces of our medical and psychological support team pulling together as well as the county assistance help being approved and set into place.

This is an amazing crossroads to stand at.

On one hand I am looking back into the easy (insert inappropriate giggle) years of parenting preschool and grade school age kids with FASD's (which makes me enjoy our younger FASD crew all the more) while at the same time looking forward with an amazing sense of relief into the more turbulent FASD teen years - smiling to myself because I know that we now have stronger supports and a more realistic view of where we are headed.

In 2011 we have gone through our first major FASD crisis's - behavioral, psychological, medical, and educational - truly all at one time and now that we have our feet in the deep end of the pool it isn't quite as scary as I had thought. Perhaps it's the last layers of pretense or denial being wiped away as we have finally passed through the necessary stages of grief, anger and despair and it has slowly dawned on us what the true cost is of exposing unborn children to alcohol is and how it has changed our family forever.

Life hasn't gotten any easier along the journey this year (to be honest - on a few days I was actually sobbing in the corner of the Target Starbucks while my pharmacy friends filled yet another round of failing medication trials and I knew I had to go home and face the utter chaos of my home without pausing to take another breath) In hindsight I can see the plan pulling together and the pieces falling into place for the next season. A hard season to be sure - but one with the structure to weather it in the best way possible. Which to my oh-so-compulsive hyper organized brain is a cause for extreme celebration....bring on the New Year!

Monday Morning Winners........

2011-12-12T07:57:00.000-06:00

Morning! The 'winners' kid picked this morning (by the oh-so-scientific method of choosing comment numbers) are:

Blessed wins the DVD
MKFlickner wins the gift certificate from Blue Behemoth

And what of the Vision Forum Gift certificate? Over the weekend it fell into the spiraling black hole where socks go...when it resurfaces we will notify the winner and send it off!

Congratulations to both of you - please email me your contact into and I will drop them into the mail ASAP.

Um...You Were Born on The 10th or the 11th....

2011-12-11T06:24:00.000-06:00

Soar was born in a hurry nine years ago at our local hospital emergency room. Documenting his midnight arrival was complicated by a broken clock and frantic resident who hadn't delivered a baby before. In the end all was well but there has always been a little confusion about exactly when his birthday is.

Soar has a passion for all things stuffed and this year his longings involved a 'big' bear (check) and a sea turtle (thanks Nanee!) It was a bit of a chore to sneak the bear into his bed over night but in the end he didn't discover that someone else was sleeping there until his siblings woke him up in the morning. Good to have sisters who can help carry your stuffed animals..............

The girls also made homemade Cinnamon rolls for him and we spent the day enjoying the warm house, fluffy friends and ended with an amazingly successful family dinner at Qcumbers and a showing of Star Wars.

Happy birthday Soar - you are a wonderful son and I really like everything that makes you, you!

Look At That... :)

2011-12-10T19:21:00.000-06:00

Wow - I just 'earned' the first $5.26 through your linking over to Amazon by the Urban Servant/Amazon search box. It's a very simple system - for every purchase that is made by a customer who arrived through our link we are credited 4% of the purchase price. Which is making me laugh as this is the first income attributed to my name in 15.5 years. Thanks to all of you - it's been a long week and the simple fact that I earned $5, is making me smile as I gear up for Sunday. My favorite and potentially most complex day of the week.

Shhhh....Anyone Want a Copy of This DVD? (Reposted with two more things to share!)

2011-12-10T11:00:00.000-06:00

With our last Vision Forum order we received a free copy of The League of Grateful Sons DVD which is an inspiring piece of the Faith of our Fathers Project. We already own this great DVD and I would like to forward this copy on to another family....Laughter will pick the winner on Sunday night so I can get it into the mail Monday morning. Comment here or on face book to be entered - no strings attached!

I'm re posting this - same timeline - but I am adding a $10 gift certificate for Vision Forum and a $50 digital download one for BlueBehemoth. Let me know if you would like to be blessed by any of the three above items - we received them all free with our Vision Forum order - Remember - Laughter can't pick your name Sunday night if it isn't on the list!

FASD: A Study On Reducing Secondary Disabilities....

2011-12-10T07:09:00.000-06:00

Next week we have our first meeting with the public health nurse and in preparation I have been upping my knowledge base on the therapies and practices which have been found successful in supporting persons with FASD's. At the Motherisk.org site I found a study that was done in Canada evaluating the elements which contribute to success in the lives of diagnosed individuals. Here is the basic summary................

"Eight factors were found to decrease the likelihood of nearly all the secondary disabilities. From strongest to weakest, these "universal" protective factors were; living in a stable and nurturing home for over 72% of life, being diagnosed before the age of 6 years, never having experienced violence against oneself, staying in each living situation for an average of more than 2.8 years, experiencing a good quality home from age 8 to 12 years, having applied for and been found eligible for supports from the Division of Developmental Disabilities,
^{having a diagnosis of FAS (rather than FAE), and having basic needs met for at least 13% of life. These findings suggest that with appropriate interventions, it may be possible to reduce the rate of secondary disabilities among those with FASD..................." The rest of the study is here.}

^{I admit that reading this portion of the study gave me great hope for our kids. Not that they will grow up and be 'cured' - this is still a permanent disability - but that everything we have been instinctively doing to protect them such as limiting their exposure to violence, aggressively pursuing accurate diagnosis and (now) applying for help through the larger systems - has been shown to help reduce secondary disabilities in persons with FASD's over the long haul.}

^{Because no matter how hard I try to manage our daily lives I always need to keep an eye to the future.}

Ever Wonder What We Do For Entertainment?

2011-12-10T06:43:00.000-06:00

Last night we played a home-made version of the computer based game Angry Birds. Rather, they played while I laughed myself silly and tried to coach them into building shorter towers. (This one was about 4 feet tall.)

Two High Points For This Day..............

2011-12-09T20:06:00.000-06:00

Urban wildlife on our block......Don't you think wild turkeys are a little strange in dt Minneapolis? The sight made our whole crew roar with laughter.....

And sensory satisfaction for me...another 50+ pieces of Fiesta off of Craigslist (thanks Sandra - it was nice to meet you!) Tomorrow I deep six the nasty collection of plastic bowls and horrid green garage sale plates and fully appreciate the change back to 'grown up' dishes. Not that they are 'safe' with our crew - I'm just remembering how to find pleasure in small things and my table settings are one of them,

Homeschooling the Crew: Spelling....

2011-12-07T13:54:00.000-06:00

There is no 'best program' for teaching spelling in our particular homeschooling world - no standardized set of curriculum for teaching kids with FASD's, LD's, dyslexia, depression, ADHD and IQ's all over the spectrum.

This morning was a particular challenge as Madeleine and I worked with three different spelling programs at the same table with six of the kids.

The one who lives for worksheets and needs help with mental flexibility was doing Sequential spelling, the one who can't sit still for two minutes was working with All About Spelling and the four who are in the middle of the pack all tackled their next list under Spell to Write and Read. It was literally a three ring circus and by the time we were done, taking the younger nine out to Pizza Hut for free pizza under our Bookit program coupons sounded relatively easy.
I added the Amazon links here as sort of a test of the Amazon Associates program. What that means is if you link out to Amazon from this page and make a purchase then we receive a small referral fee. Which just might help with the costs of all our homeschool materials. :) I will let you know how it works - I was always curious!

Birthday Twins.....

2011-12-06T14:53:00.000-06:00

Yesterday Willow turned eight. She is sporting freshly pierced ears and made the now expected stop at the cosmetic counter for a sample of lip gloss. (I'm laughing at how far we have fallen from our original parenting thoughts on such things. :) Though she would have chosen a horse for her bithday (do you see the 'hint') - earrings were a close and very acceptable second. Willow is an amazing girl - she is tender beyond my own understanding and as the leader of the younger girls takes her role very seriously. (A/E if you are reading this she is beautiful inside and out!)

Willow and her birthday 'twin'

Many of you know that I like numbers and this is one of my favorite weeks of the year - until we celebrarate the next set of birthdays I have two eight year olds and two six year olds. Once the birthdays pass we will back into sequential order 6,7,8,9 - but for now I am reminded of the overwhelming blessings of the season in our life when every December brought with it a new addition to our family.

The Siren's Call........

2011-12-04T15:25:00.001-06:00

The holiday season is challenging for our family. Of all the times of the year it's when the siren's call for 'normal' pulls hardest at my heart. Of course it does. The last thing that Satan or the world wants to hear from us this month is that we are delighted in our Savior, that we are thrilled to be parenting everyone of our children, seeking new ways to embrace their individual challenges and looking forward with eagerness to the day this life will end. No - those statements make many people uncomfortable. Seat squirmingly , finger wagging, judgementally uptight because they see so many 'good' people investing all their energy in achieving a moderate, lukewarm life structured on personal security and a desire to not offend. But then there is us - one big mess of a family. No longer hiding our challenges because they might make other people feel guilty, never pretending that things are easy and always, always, seeking to know more about the God who called us out of darkness - believing in our deepest hearts that our worst crime is not offending man but not trusting the God of the Universe.

Which makes me say.......

My life is hardest
When I listen to the siren's call.
The whispers,
murmurs
and cries
of everything that the
lukewarm,
half dead,
endlessly seeking
World
has to offer.

When I begin to agree
that I have a right
to my own space,
my own time,
my own definition,
my own limits on what I will
and will not do in the name of love.

When I am drawn to the 'I'
instead of the 'I am'
and lose the reality
that this life is not everything.

When I fear death -
and fail to believe
that the cross
was the end of judgment
for me.

When I forget that judgement is behind me,
not before me.
That I'm free
to see the hard things
as blessings,
the painful things
as transitions,
and the heart breaking things
as momentary.

When I listen to the sirens call.
Choosing to sink into the soft,
engulfing,
blankness.
Of moderation.
Following the whisper
that says
don't care so much,
don't speak so loudly,
don't make people uncomfortable.
I am steering my heart
into chaos.

Because it's backward.
When I stop weeping
and loving
and crying out into the darkness
for the one who is lost.

That is when I
have become a siren
myself.
Luring others by my example
to choose the wide path
the easy road
the way that says
there is no God.

Not To Freak Anyone Out.....

2011-12-02T21:20:00.001-06:00

But in 5 weeks the tax geeks amongst us can start our 2011 tax returns! Wahoo! Even with the trauma of our IRS audit this year my heart still beats a little quicker when I think of those tidy columns of numbers I get to sort, file and organize to my hearts content. The best news is that I feel so free because we no longer have the adoption credit carry forward to try and correctly compute and since the worst has happened (we were audited, accused of fraud and taken through the whole process) I already have a handle on the game if we are called to the table again.

The real question at this point is will I use Turbo Tax again. Having learned of it's fallibility I admit to being a little hesitant....but it's a love-hate thing because I also know it well enough to see it's errors and work around them.

And A Little Child...............

2011-12-01T11:46:00.000-06:00

Shall eat all of the lunch meat and his 10 siblings will have none......

(That's my laugh for the day.)

I Have An Idea....(Here We Go AGAIN!)

2011-12-01T07:05:00.000-06:00

Being away from the Old House for 18 months gave me a fresh perspective on what could be done with the space we have. It started with us removing all the visually busy Victorian wallpaper from the first floor....The picture is Madeleine painting the last corner of the kitchen as we wound that project up on Black Friday.

Since then (your right - it's only been 4 days but my brain moves fast when I see an organizational challenge) I have been trying to figure out where/how we can add in more vestibular and sensory opportunities to the kids winter diet. Which led to the following idea.......We need to create a 'swing' space on the first floor. Madeleine is standing in the perfect and only good location for such activities - the french doorway leading out onto the porch. Of course I can't find a pre-made bracket for this application but I'm already dreaming up having one fabricated - I'm sure it's possible and I think that it may be a good answer to the spinning/crashing/climbing needs so many of our kiddos must have filled. I will let you know what I figure out on this one ...I am sure there are other families with tight space and a need for speed....

Where are you?

2011-11-30T07:01:00.000-06:00

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?

2011-11-28T08:09:00.001-06:00

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

2011-11-22T14:15:00.000-06:00

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.......

2011-11-22T13:52:00.000-06:00

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......

2011-11-21T13:19:00.000-06:00

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?

2011-11-18T14:46:00.000-06:00

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.....

2011-11-16T08:25:00.000-06:00

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'....

2011-11-15T12:39:00.000-06:00

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.....'

2011-11-14T22:07:00.000-06:00

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.....

2011-11-14T13:29:00.000-06:00

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?!

2011-11-14T13:15:00.000-06:00

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....

2011-11-12T07:36:00.000-06:00

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.....

2011-11-12T06:40:00.000-06:00

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...

2011-11-10T13:40:00.000-06:00

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?

2011-11-09T08:16:00.000-06:00

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.......

2011-11-07T13:24:00.000-06:00

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...........

2011-11-06T21:51:00.000-06:00

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............

2011-11-06T11:00:00.000-06:00

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.....

2011-11-05T21:54:00.000-05:00

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..........

2011-11-03T14:47:00.000-05:00

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.......

2011-11-01T13:09:00.000-05:00

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.

Parenting Sure Is a Humbling Business......

2011-10-31T14:12:00.000-05:00

Today started off as a normal morning at church - Storm was deep into sensory seeking behaviors through the first part of the service and since he was in my arms I am sure it looked like I was wrestling a cat as he pushed his head/feet/face onto various parts of my body trying to satisfy this need. Thankfully I had enough coffee and sleep the night before to find him mildly amusing and understood what he was doing wasn't naughty - it was just his way of becoming more regulated before we got to the really tough part of the service...sitting through the sermon.

After the offering I could tell that our little wrestling game was working well and predicted that he would settle down as we stood up for the last song and I held him close to my shoulder. All good...except that our older kids in the row behind us - kids who know better - started pulling on his legs and arms and squeezing his thighs. I was about to give them the dirty mommy look until I noticed the affect they were having on him. Rather than getting excited with their playing, the more they pulled pushed and squoze, the more relaxed his body got and by the end of the song he was mushy dead weight in my arms - ready to sit and listen.

It took me a few minutes to realize that they (in their various levels of abilities) had seen that he needed a little help to settle down and had risked my evil eye to jump in and do what they could. It is sobering to reflect on how many times I may have carelessly pushed away little hands who were reaching out to help a brother or sister in exactly the right ways. Me the mommy - the one who is too busy to see the good that is happening right under my nose.

This parenting is humbling business...to be sure.

"You See, My Mom Drank Alcohol Before I Was Born........."

2011-10-29T07:52:00.000-05:00

I received this email after church on Wednesday and wanted to share it as an encouragement to all the moms of kids who have FASD's and are struggling right now. My goal is to keep up the good fight and watch every day for 'hope moments' like this. Of course I abbreviated and edited the email for privacy - Speed is our #3 son and M is the son of a friend with a profound seizure disorder. Both precious young men who's lives impact and affect for good those around them.

Dear (Friend)….

I had a poignant moment with M tonight at church. We were doing our usual "hanging out" in the main foyer talking to one of M’s Wednesday night teachers, Mr. P, Mr B, and his son, Speed. Speed frequently comes up to M and talks to him. Tonight was no different. He approached M and asked him how his night was going. I positioned M at a better angle so that he could see Speed more in line with his field of vision. M, with thumb in mouth, rolling back and forth in his chair, paused to make eye contact with Speed. M was having a good night. Speed kindly talked to M. I told Mr B how sweet of a spirit Speed has whenever he talks to M.

At one point, Speed said something that I wasn't sure. I asked inquisitively, "What?"

As he repeated it, he focused on M with eyes locked, and said, "I have brain damage, too." It caught me off-guard--brain damage? I leaned forward to capture his every word. With an angelic voice, he elaborated, "You see, my mom drank alcohol when I was a baby, and now I have brain damage. It makes it hard. It makes it hard for both of us, M." M and he continued with their mutual gazes. Mr P and I were speechless. The plain-spokenness of this child processing and coming to terms with his own difficulties was a very intimate moment. With deep thoughts ricocheting in my mind, we eventually parted.

Moments later, I shared our experience with friends in that same foyer. We were all just shaking our heads. We concluded that this is the ministry of M: broken people bumping into other broken people with God doing His healing work in the way He purposes and deems best. This does not begin to capture the depth of what God does. Amazing.

I just wanted to share this with you to encourage you all in your ministries.

M’s mom.

And The Shared Book Winners Are.......

2011-10-26T13:08:00.000-05:00

This morning I went through and stuck post-it notes with names on all the manila envelopes full of books I have to share out. If your name is below please email me at urbanservant618@gmail.com with your address and I send them right out. If I don't get an address claiming a book by this Friday then I will pass the book on to the next person in line. Here's the list of winners and a hint or two if there were names that are common....
Cody lee
Miricle reciever
Krissy Wilkins
Laine
Sarah Houser
Emily (cwinkle)
Beth Nordquist
Janelle (from the party)
Travis Lowe (you won for being a guy - this is a guy book!)
Christy (teaching by loving)
Soldier Mama
Mike and Katie
Julie B
Sue Lee
Robin (from Robins nest)
Jodilee0123

Help Us Coin A New Word......

2011-10-25T15:59:00.000-05:00

One of the most difficult tasks we have encountered as parents to kiddos with FASD's is the need to understand what is going on inside their heads when we are talking to them. I have struggled for years with the reality that my communication may be perfectly logical to those without FASD's but to those with them I sound like a raving idiot.

Which is a really good lesson for me - because who wants to deal with someone they perceive that way?

One piece of our communication breakdown seems to center on an absolute inability to comprehend the concept of 'for example..' Not all of my children with FASD's have this same issue, but several do and it plays out like this.....

Me: "Taking things is bad, for example, if you took Madeleine's purse it would make her sad and ruin her trust."
Child: "I did NOT!!! I never took her purse and now she doesn't trust me!"
Me: "No, I said FOR EXAMPLE, I know you didn't take her purse, it's right here on the table, I was simply trying to show you how it might work."
Child: Bursts into tears....."I didn't do it, I didn't and you wont listen to me! You NEVER listen to me!"

Crash and burn. End of social story, end of teaching session, time to peel child off of ceiling because they feel deeply wronged by this crazy adult who just accused them of stealing the helpers purse.

Repeat each time this type of thinking is asked for...what if...for example...any plethora of phrases that carry meaning to my own brain and toss my poor kids off an emotional cliff.

I'm trying to figure out what to call this. It seems to be more specific than simply 'concrete thinking' or 'poor executive function' its about a hypothetical situation becoming reality to them in a way that causes huge distress.

Any ideas for what this is? I'm thinking it's time to coin a new word......

T4A: Project Hopeful - One Minute to Share A Thought On Adoption.....

2011-10-25T12:51:00.002-05:00

This shirt caught my eye at the T4A conference....which led me to stop and talk with this representative of Project Hopeful. In this video he shared a little of how his thoughts on adoption have changed...............

Project Hopefuls goal is to educate, encourage and enable families and individuals to advocate for and adopt children with HIV/AIDS.

I pray that God would be pleased to bless their efforts and that they would live wild, outrageous dreams in Him.

Help Me: Book Giveaway to End The Endless Pile.....

2011-10-24T13:18:00.000-05:00

I hate piles. In our house any pile is an invitation to the impulse challenged children to test theories of velocity, impact and chaos. Piles make me crazy so on Wednesday morning I am going to put all of these books into their book rate mailers and send them off to their new homes....will your address be on one of them? I sure hope so!

Here's what I have to share:

-The set of 4 Tom Davis' books (if you already commented that you want to be counted in on those from last weeks post you are still in!) (Not for kids - hard topics covered in these.)

-Five Copies of Just as I am by Krista Horning. (Perfect for kids and adults!)

- One Copy - fresh off the press of Every Bush is Burning. by Brandon Clements (New novel along the lines if The Shack.) I read this one on the way home from T4A and really enjoyed his style and message - mature reading.

-Four copies of Wait No More the story of Kelly and John Rosati's adoption journey.

-Four copies of Thriving as an Adoptive Family handbook by David Sanford

And...if only one person comments you might just have your Christmas shopping done! If your interested - Please comment below and let me know which book (or books) you would like to be on the list for.

T4A: My Plans/His Plans....

2011-10-24T07:15:00.000-05:00

There were many opportunities to attend breakout sessions at T4A – I had thought about it – pre-registered for the ones I wanted to blog on - and was fully prepared to settle into a quiet seat near an outlet. But in the crazy spin that tends to identify my world I never made it to them.

Not even one.

I tried. But each time I thought I was headed in one direction I ended up somewhere else. Over the past three days I wept a river of tears with a handful of special women who shared the pain in their hearts, the fear that controlled them and the goodness of an all-powerful God.

My time was spent not in sessions but face to face - pouring prayer over the beautiful suffering that adoption can bring into our world. RAD, FASD’s, disruptions, failure – the secret words that they were afraid to speak out loud were brought out into the blinding daylight and lost their power to destroy. You won’t read the details of the sessions on this blog…but the opportunity to spend time with each of these precious woman more than made up for what I missed. Would you add your prayers to mine this morning? That God would be pleased to whisper hope into the hearts of weary moms.

T4A: Worship Within The Circle of Bloggers....

2011-10-23T06:15:00.000-05:00

I wish I had a photo of the seating section where I spent most of the T4A general sessions. It was a tangle of laptop cords, water bottles and a group of amazingly warm bloggers with a common love of God’s plan for adoption. Not that I expected bloggers to be cold or anything - but sitting with them – worshiping with them – watching the friendly tweet racing and flying fingers as links and references and citations were magically produced off their laptops – somehow gave an added dimension to the conference and words on their blogs became three dimensional as we settled in together.

I’m a mommy blogger – with fifteen minutes of daily margin to devote to the blog I can’t even begin to compete in the realm of what I was watching them produce. I am sure they will nail the theology and message of T4A - I’m going to share the relational things about it. The people reasons we were there. The organic part of the conference where people with needs met others who were able to reach into their world and met them where they were at. I needed to focus on worship and this man Jimmy McNeal helped lead me there.

Jimmy McNeal at T4A

T4A: Book Give Away...........

2011-10-21T20:26:00.001-05:00

Over lunch Tom Davis of Children's Hope Chest shared his love of the orphan and challenged the church again to step forward in new ways to reach into the despair and poverty that affects so many and bring relief.

I was given a set of Tom's books to give away here on the blog - if you got out to Children's Hope Chest face book site, 'like' them, and let me know in a comment here then your entered in the give away. Alternatively, if you not on Face Book then follow over to their main page here, spend a few minutes looking at the their site and let me know through a comment here. If you share the link with your friends let me know that also and you will get your name in twice. I will be randomly choosing the winner Saturday night at 9:00 as i head home from T4A.

T4A: One Minute To Share Their Ministries

2011-10-21T18:42:00.000-05:00

As much as I am loving the speakers and breakout options here at T4A - the chance to meet and hear the stories and visions of the different exhibitors is prompting me to give a few of them the chance to do short videos for me to share here on the blog.

These two fun guys met at an airport and have just launched Village to Village International a two prong ministry to help families fundraise to cover adoption expenses as well as focusing on smaller special projects to meet overseas orphan needs. I loved meeting them and pray that God will take the energy and enthusiasm that they shared with me and do something wild......

T4A: Seeing Change.....

2011-10-21T14:50:00.000-05:00

Even as we are gathered in Arizona to talk, pray and learn how to best love the orphans of our world there are major things afoot demonstrating that small efforts are having large impact. An hour ago MSNBC reported that the Son Of God orphanage was closed in Hati and the orphans there who had been abused and neglected would be placed into better situations.

To see the mainstream media taking up this story and reporting on it is almost as encouraging to me as the closing of the orphanage - usually these closings are quiet events that slide under the radar of most Americans. There is some embarrassment for the supporting churches, the country implicated and all organizations that have had contact with them.

This time, because the truth was reported to the larger public - another window into the reality of the invisible children has been blown open. 'Normal' people can look through and begin to see, to care and to dream about change.

T4A: Rest and Suffering In The Life Of Adoptive Moms......

2011-10-21T08:41:00.000-05:00

Memory is funny. Sixteen years ago I remember sitting with a group of women at the only MOMS meeting I ever attended. Six months pregnant with my first son and utterly unaware that before the week was out I would become absorbed by drama as we worked to prevent his premature arrival - I asked our table mentor - an older women I still know and love - what her favorite parenting book was. Her simple answer was "The Bible" ......and I was honestly disappointed.

I knew what she meant by her answer but I found the Bible unhelpful because what I really was asking was how to deal with the overwhelming number of technical parenting questions I had scrambling around in my over-hormoned brain. Should I let the baby cry? Front or back to sleep? Schedule or not? I wanted technical care and maintenance of a baby questions answered - not parenting theology. I already had a foundation of my parenting theory set out but until this little person was out of my womb and into my arms I really had no way to test if what I had was solid.

Fast forward ten more kids. I shared yesterday with a group of women who have currently adopted or who are in the process. We came hungry for encouragement and guidance. Many were parenting children from hard places and looking for answers to the challenges they face. Many asking for the how-to's of adoption - for book recommendations, theories and practical helps. Over the day we discussed some of my favorites. Parenting is Your Highest Calling: And Five Other Myths by Leslie Fields, The Connected Child (with workbook)by Karyn Purvis and Give Them Grace by Elise Fitzpatrick. All great books with practical ideas and methods for dealing with the parenting journey.....all pointing either directly or indirectly back to the main reference....the Bible.

Which made me pause. Our two main topics for the day were the ideas of Suffering and Rest in the lives of adoptive moms. Deep issues that are at the core of my parenting life and are much more difficult to manage than finding the 'next' therapy option, schooling idea, discipline technique or attachment theory.

I was reminded that if I don't have the foundation of who I am in Christ and why I am in Christ- nailed down (through my confidence in the Bible) then it makes all the other parenting decisions so much harder. I can buy rooms full of books on how to make all those 'other' parenting decisions but if I don't have a solid basis of truth to apply them with, I will become overwhelmed.

Sixteen years after that first MOMS meeting I listened and agreed yesterday as Dennea Pierre and Dr Donna Thoennes reminded us that the foundation of understanding suffering in our lives is the gospel and the key to finding rest - regardless of our circumstances - is in that same place. Today I find myself agreeing with that friend so many years ago. The Bible is the best place to find the core of our parenting ideas and the only paradigm for me to use when facing the struggles and exhaustion of our daily lives. That room full of parenting books can be helpful in some ways but utterly worthless if we forget or neglect to stack them on the shelf and foundation of gospel truth.

I'm ready for the T4A conference to start today - geared up and thankful for the women's pre-event that helped refocus my heart from looking for 'the answers' to remembering that I already know The Answer to the big questions and own the book that holds them - my Bible.

Together 4 Adoption (Pre-Conference) Begins Today!

2011-10-20T02:43:00.000-05:00

Crazy. 1:00am and instead of creeping back into our house following a late night rendevous with Julie and Barb I’m on an airplane headed toward the Together For Adoption (T4A) conference in Arizona. Leaving is never simple for me, but tonight worked well with the help of Julie and Madeleine – one drove me to the airport and the other herded sleepy children into their beds until the church crew returned.

I think everything is in order for me to walk away for a few days. (Insert hysterical giggle.) Medications are filled, the pantry is stocked, a pile of library DVD’s is on the kitchen table with a 24 pack of toilet paper next to them and there are several children with happy dreams of extra-long licorice for breakfast. (I vote YES daddy if you read this – why not?)

My goal over the next few days is to share with you the flavor of the T4A conference and to write about it in such a way that even second hand you will feel the solid affirmation that there is a gospel echo in adoption – and that there are promises connected to everything we experience.

Note On What We Post And Why......

2011-10-20T02:34:00.000-05:00

I have added 10 new editors to the UrbanServant blog. In the past I have asked my older children’s permission to post on certain events in their lives – I have deleted many drafts because they felt that they were too personal and I am very aware that there is a need to maintain both a public and private life. Recently I have started asking each child more directly for permission on posts relating to them – it’s important that they have a say in what is out there about them. Moving forward I will be raising that bar even higher and making an effort to write more indirectly about what we are learning and living – at the same time realizing that we have been given a very important message to share with the world and many good reasons for us to stay public.

Can't Stop Bragging On This Boy......

2011-10-18T15:24:00.001-05:00

This morning I went into Speed's EEG appointment prepared for the worst and hoping for the best. Not that I was worried about the results - we wont have those for a few days and there is nothing we can do regarding them - it was the specter of a new (and unnecessary in his mind) medical procedure that made backup plans necessary.

Today was wonderful. He amazed me by again he doing something really hard that he didn't want to do. He allowed medical personal to draw/scrub/tape his body and didn't take a single swing. I was prepared. My glasses were off my face and I had on a good kid-wrestling outfit. But God gave me the opportunity to see progress in his life...slow and unpredictable as it may seem to me ...this kid is my hero again today because he pulled an A+ out of a potential crash and burn situation.

(Post edited at his request - thanks Speed for keeping me to my word! You are a hero times three!)

"Okay. Which One Of You Took My Sanity?"

2011-10-17T06:59:00.001-05:00

Isn't that a fun name for a book? Okay Which One Of You Took My Sanity? truly is the title of Matthew Hoffman and Claudia Fletcher's new book on parenting and I invested the weekend picking up their best ideas on living with and loving our adopted kiddos with special needs.   It isn't a book I would have enjoyed ten years ago when consistency - consistency- consistency was my mantra and the clearest idea in my head was that our kids were 'special needs' because of their race. (A thought that makes me laugh hysterically now - since they absolutely were and still are challenged not primarily by skin color but by IQ, FASD's and ADHDs - but that is another post to be written.)

The last year has been about failure and recovery in my parenting methods. Somewhere in the desert of Colorado I found myself in the place where I was willing to admit that many of my kids have behavioral and mental challenges which really are not going to be modified through consistency.   Not that I gave up on them - it just dawned on me that I was spending huge amounts of energy trying to change my kids and was at risk of loosing them because of it - I was simply ruining my relationships with them because they wouldn't/couldn't change. Which stunned me. Shoot.  I was a child of the 80's where we learned that it doesn't work to make other people change in order to please us we must first change ourselves. Something I got a little hazy on when I became a parent. Something that is still true today.

It's been a long and weary journey back from that place of acknowledging my failure. There are not many authors out there who are sharing the message that our relationships should not be based on the success of behavior modification and a punishment/reward system. I'm all for consistency - my kids with FASD's thrive under it - but I need to be super careful I am not taking the same punitive system we use for housework into my relationships with the kids.   Which sounds horrible to write here but I was doing it far more than I want to admit.

Some of it was subtle - just an emotional distancing.
Some of it was not subtle - letting them know that they had disappointed me and now there was a cost. Remember the Soup Nazi's famous phrase "No Soup For YOU!" I had the same heart attitude as that character and it wasn't pretty. Nope. It was all about setting up some weird sort of conditional-love based on behaviors and me as the controller of the standards. It was wrong and I am sorry that I manipulated my kids in that way.

The good news is that out of my failure I am finding success - in perfect God-type timing my own heart has turned toward my children and I can walk with them through the valleys of their challenges fully aware that I don't need to limit our relationship based on their failure to meet my expectations. The world will tell them often enough of their failures - I need to find and nurture all of the good, strong, positive things that are within them and be sure that I am seeing and reacting to those things. Which isn't to say that I need to let them walk on me or become out of control behaviorally. That's the consistency part that is important - but I am learning to really see that there is a difference between their exterior behaviors and interior hearts. Especially for those with FASD's and anxiety issues what I see (and react to) on the outside is not necessarily what is going on on the inside. It's my job to know their hearts - and not crush them - regardless of if they make me 'happy' with their behaviors.

I'm going to ask for a Soup Nazi tshirt for Christmas - I want to be reminded that I don't want to go back to that character of a person. I want to make a joke of the control freak in me - the part that thinks I should change the people around me so that I can have the life I dream of - I want to laugh with my children about how sill I am and feel their forgiveness. I want to be the anti-Soup Nazi.

We All Fall Down....

2011-10-16T07:11:00.001-05:00

It's true. Everyone falls down occasionally. One might trip over a toy, lose balance at a curb or just forget to move one foot in front of another. My son Speed seems to enjoy falling and makes every stumble an opportunity to demonstrate his amazing flexibility and agility. He looks like a cat to me - a young one that always manages to twist in mid fall and land with at least two legs on the ground. Friday he took a fall of a new sort - one that gave him no opportunity to get his feet down first - one that may be heralding a new twist in his medical journey. He had a seizure and cracked his head really good during PE.

The fun here is that no serious damage was done by the fall - and that though he is still sporting an impressive bump on the back of his head and is scheduled for an EGG on Tuesday there haven't been any repeat episodes so we are not in panic mode. Instead we have been able to appreciate the lighter side of the moment.....like the fact that our friend gave him a sprinkled doughnut after he fell - which is now his primary memory of the incident. And that the Shaun White clearance tshirts that Julie picked up for my boys and gave me Friday night say "Built to survive the unusual." Of course the cream on the day was the new signs that the UM painted on their sidewalks which fit our day and seemed a little silly to be reminding college students......

Promoted to Brown Belts......

2011-10-14T07:05:00.000-05:00

Two years ago (as sort of a joke) I wrote in my homeschool notebook that TKD was our physical education option of choice and that our goal was for each child who was able and interested to recieve their Black belts before graduation.

What started as a joke is looking very possible. In fact, since the eight oldest kids and I are now Brown belts (two belts before Black) I may have the fun of writing on their transcripts for the 2012-2013 school year 'advanced to First Degree Black Belt.'

More important than the fact that every one of us completed and preformed the requirements for this testing are the less easily identified achievements. Speed demonstrated an amazing amount of unusual resilience when he failed to break his Green board with a side kick (though he has done it before the stress got to him) was excused from the line without success, came to me and allowed himself a few minutes of comforting and when Mr Jones offered him the unexpected opportunity to try again when every one else was done...stood up and did it! The trying again after a failure piece is huge. Beyond huge, it's amazing for a kid with serious anxiety issues to get back up in front of the group and try again right after so public a failure. A year ago this would not have happened - it's not about sportsmanship - it's about an overwhelming wave that he is starting to surf on rather than be drowned by.

Though I am happy we received our Brown belts I am even happier that we all got to celebrate this moment in his life with him.

Maybe It IS All About Me.......

2011-10-13T07:22:00.000-05:00

I woke up this morning pondering how much of the frustration and anger I experience as I parent kiddos with FASD's really is all about me. After all, my kids are not unusual. In fact, they act exactly as expected for persons who's brains and bodies have been damaged by pre-birth exposures to drugs and alcohol. They are normal for people with their set of circumstances - I am the one wanting (and expecting) something different. I don't want them to have the emotional/behavioral challenges that come as the logical outcome of their FASD's. I don't want them to know the cardiologist, endocrinologist, psychiatrist, sleep specialist and developmental pediatrician by name. I don't want my day to be regulated by medication timing and sensory regulation. I don't like the fact that FASD, ADHD, DD, OCD, SPD and a plethora of other abbreviations are part of my daily life.

All of which makes me wonder.
How much of my own trouble is not caused by my children but is wholly my own issue. Because in my self centered heart I keep twisting their challenges and disabilities until it's no longer about them but all about me.
Me pitying myself.
Me wanting something different.
Me, me, me.
Forgetting that they are living 24/7 the truth of these disabilities while I am only fussing about how they affect me.

That's my challenge today. I am going to count how many times I catch myself putting an overlay of 'me' over the people and situations around me. How many times I take their moment and trauma and make it into something that isn't about them any more but in truth is all about me.

Thanks for listening
D

Favorite Suppliers?

2011-10-12T06:56:00.001-05:00

Somehow my stash of special needs catalogues and notes was ruined by water in the last move. A sad reality which has me scrambling to recreate the wheel as I transition the family past summer and into our fall routine. So.....I'm looking for catalogue recommendations, sites, and products that you love. Specifically this year I am addressing sensory understanding, social cues, self regulation and organizational skills with the middle age kids (6-12) - after I get this wheel turning again!

Large Families and Small Groups.....

2011-10-11T07:15:00.000-05:00

I have a confession: We are not members of a church related small group and haven't been for eleven years. Gasp. Choke. Are you reading in stunned amazement? After all, we are serious members of a small group focused church and totally 'get' the reasons for living in community. But that doesn't change the fact that we are not in a small group.
Enter guilt - sort of. I'm just not very good at carrying that could-have, should-have, ought-to type of burden for very long. It's not my nature. Here are five thoughts on why we are are entering our 12th year of not participating as a family in a small group......

1. We are big enough to be a small group all on our own. Adding 13 people into any group is daunting to a leader - compounded for us by special needs.

2. I don't want to host a small group. We have done that and loved it but reality is that I don't want to host a small group for my not-so-small group.

3. We are constantly in relationships with other people. It's the nature of the life we have built. People flow into and out of our home like a river some days - because we are always in some level of chaos there is no 'best' time for people to visit so we end up with company at all hours of the day and night. It works.

3. People come to us. Because we are a mess people really do come to our house to fall apart - there is a 'norm' to it that allows all pretense to be dropped when there is no expectation that we 'have it all together.' Truth is that hungry guests may be served cookies on a pretty plate, a spoon of peanut butter from the communal jar or maybe nothing because we are between meals and there is no way I'm starting another round of feeding. We are not hosting company - we are simply living and leaving the door open for others to join us.

4. Needs find us. We might not be rich but there is always room at our table for another person, a car we can loan and the time to stop, cry and pray through a crisis. We make meals, meet needs and pull others into our lives because its natural.

5. We are not alone- we are intentional about meeting and engaging with people - all sorts of people. Having a large relational field allows us the benefits of being in a small group even though we are not officially signed up. Our needs are met and we are able to meet those of others because our lives are interwoven - no official meeting time or place - it just happens.

Five reasons which are enough to assure me that we are not wrong to pass on the opportunity to sign our family up for a group this fall....and to remember to leave the door open and the underwear picked up (I do have some standards!) in case our own 'life group' is having a meeting today.

A New Season Of Bling.......

2011-10-10T14:07:00.000-05:00

Don't be surprised if you catch me sporting two or three of these around my neck at church on Sundays this Fall. They are a great option for the bigger kids who need to chew/suck and allow for a little quiet sensory activity (for calming or satisfying) without destroying other things like hands, pens, books, clothing or shoes.

After a three week trial I'm liking my new bling well enough to lay up a stash for baby presents as well as simple encouragements to other moms who's older kids needs this type of option.

My Kind of Hero......

2011-10-07T12:36:00.000-05:00

My son Speed is an amazing kid.

Even though his list of challenges fills a page -

The one I keep of his strengths and successes is longer.

These are his new 'hero' jeans.

My friend Julie bought them for him

as an encouragement.

Because he made a good decision at church last week

when his friend Maisy was lost

and an adult handed her to him

he did a good thing.

He picked her up

and carried her.

He kept her safe -

He was her hero.

Love Is Enough in Adoption....But Can You Love This Way?

2011-10-06T20:00:00.000-05:00

Love is enough in adoption.
Which is a statement that should have 50% of my friends making a double take and starting to panic that I have learned NOTHING so far in our adoption journey and gone around some sort of serious mental health corner. Hear me out on this one (and stop smiling Twisted Sisters...I said STOP!)

Love is enough in adoption.
If you are ready to say you love them a thousand times
and never hear it back.

It's enough
if you are willing to lay down your comfort zone, your friends, your family,
and go with a child into dark places.
Places other people run from.
Places that scare the pants off you.

If you can realize that words like
'failure'
'abuse'
'suffering'
'mean'
'violent'
Might be better labels for your children's future than success and kindness.

Love is enough when you can stand beside a child
who has done wrong.
Maybe horrible wrong -
Maybe minor.
And not take the place of punitive judge.
But that of intercessory supporter,
Because you know that no one else ever will.

Can you separate the behavior
from the child -
enough to continue loving them
even when they can't stay in your home?
Even if they hurt you?
Even when they hate you?
Even if they ruin your dreams?

Love is enough in adoption.
But it isn't the surface sort of love we think about.
Where we heal their wounds with Bible stories and home cooked meals.
Where children of trauma (inflicted both before and after birth)
Emerge as young adults who lead their peers in righteousness.

It can be a suffering, bleeding, crippling -
God filled and God ordained love.
Where we talk not of summer jobs and drivers licences
but of crisis care and safety plans.

Love is enough
but it might look
     and taste
          and feel
             more like
the love that Christ taught us on the cross.
A different sort of love -
LOVE.
All capitals
On a separate line.
Because it's the answer to the question
"Would you lay down your life for this child?'
Every
      Single
           Tiny
               Piece
                 until it is gone?

Love is enough.
But it might take all of us
and it might not ever look or feel like progress in this life.
But it is LOVE.
And I believe that that is enough.

Personal Shopper Needed....Can YOU Find This?

2011-10-06T14:45:00.000-05:00

We use the Tickit hourglass timers a lot in our house. The 3,5,10 minute ones are helping us measure chores, eating and school time. I like them enough that I am on the hunt for the 15 and 30 minute ones....which only appear to be available in Europe! Drat on that. Anyone in Canada have a source?

Choosing This Day.....

2011-10-06T09:37:00.000-05:00

Each morning I need to choose what path my heart will take. Will I rejoice in the new mercies of each day or follow the path of sadness and despair?

The choice is real. My life could be overwhelming and crushing in the truth that I am living in a home with many people who have serious and often critical mental and physical health issues. I can't ignore them. I can't change them. I can't parent them away by working harder. But.... I can choose where my heart will dwell.

I also have to choose how I see my life path. Is this punishment, bad choices or a bad joke? Or is this a meaningful, important, investment in people who have been and will be marginalized by the larger world? It's all up to me. I can parent and live from either side of the issue - I have a choice. Each one of us has a choice in how we see our day, our children and our lives.

This song is still our family theme in this season...........it's been playing over and over again as we do the morning chores. There isn't room for despair...because God's blessings are overwhelmingly new every morning..our choice is clear..

Therapy In The Everyday.....

2011-10-05T21:55:00.000-05:00

Every day we work on both the weak and the strong areas in our kids physical/social/psychological skill sets. I was amazed today as I watched these quiet successes unfold at the zoo.......can you see them?

Two open, relaxed hands..held at a natural level rather than elevated in excitement. Even though the goats tickled.

The effective turning of the dispenser handle which mimics that crazy can opener motion we still struggle with....

The first set of fingers that so hesitantly hold the food above are not jerking away. She is not freaking out, throwing the food or panicking.

And finally, the brain that becomes so easily overloaded is simply watching. Absorbing. Trying to understand what is happening around him as he maintains a beautiful stillness and processes the situation at his own speed - in his own way.

Looking Into the Eyes Of The Orphan............

2011-10-03T13:48:00.000-05:00

By necessity my heart and compassion has been strongly focused within the four walls of our home for the past ten months. Though I have prayed over, fund raised and cared about the larger issues of our world I haven't had the emotional margin to fully feel the weight of global suffering and have half turned away for a season. There have been no committees, public speaking, orphan/adoption conferences, guest blogging or travel on my calender as I have focused on knowing and understanding the needs of those closest to me first.

These eyes are calling me back. Emma's story and the daily challenges of my friend Sarah - a Montana girl who woke up in India -are piercing the fog that can surround a household like ours. The timing is good - cooler fall weather is bringing with it stability and the margin I need to turn back toward toward the larger orphan community. As part of that we have chosen to sponsor another of Sarah's children - a young man named Benjamin who was misunderstood, unloved and reminds me so much of my own boys. Our kids still remind me that the last child we sponsored - Noah - died - but that we loved him, Sarah loved him and God loved him.

My heart turning is also aided by friends closer to home. Noel's gentle encouragement has caused me to register for Together For Adoption in Phoenix later this month. I even agreed to participate in an adoptive moms panel while I am there - another sign that things are loosening - that I can take a deeper breath and look closer at what is happening outside my door.

With each step I can feel my emotional margin expanding - Emma's eyes break my heart today - but with a 'yes - I can reach out into our world and advocate for her' rather than with the waves of silence and still hands that the last season has required of me. Silence and listening that has been good....but oh so hard for one who prays and loves best with hands and feet and heart.

It is good.