A Letter and A Box.....

This box came in the mail today. 600 tablets of chewable melatonin from OurKidsASD - enough to last our family a month - enough combined with their regular sleep prescriptions to hopefully get all of us through the night. 

It was good to get that box in my hands because I had forgotten to order it last week and was a tad worried we might have to resort to another brand - not good for my kids who like consistency.   Really not good when we are trying to get things settled down for bed.

The same mail also brought letters declining insurance coverage on the two sleep studies we did last for our worst sleepers in March.  Funny.  I thought we had jumped through every hoop we could find to get it preauthorize and properly covered. To the point of obsession.... Thankfully, out of the studies we determined that Storm was experiencing multiple apnea episodes each hour which led to his tonsils/adenoids being removed within a month.  Winds study supported the bizarre sleep/wake cycles she has experienced (and I have been tracking) since birth and led to a new medication to help her.  Even if we have to pay this crazy big hospital bill( the wrong side of $13,000) it will have been ultimately worth it to me.  Just like rejoicing over the box from OurKids - I am thankful that we made the choice to do the sleep studies - regardless of if insurance chooses to cover them or not. 

Destruction of Property: The Unexpected Cost of Raising Kids With FASDs......

Paying for adoptions has been relatively easy for us.  Though we are not 'rich' and don't generally have savings past the end of the month - the initial bills from adoption have been covered through the help of friends, family and amazing grant giving organizations such as the MICAH fund and Gift Of Adoption.  (And if you care...our team got to help out on the latest GOA video here.  We are about minute 2.10....don't you love the dirty kitchen?  This is me for REAL since the crew showed up about half an hour early on a crisis morning.)

But I digress...

The ongoing costs of raising kids with FASD's amazes me.  Not the medical and behavioral/psychological bills but the grinding daily reality of what it means to live with the fallout from sensory overload, impulsively, memory impairments and the range of IQ and LD challenges that can manifest on any given day.  Not that these issues are unique to FASD but within our crew we have more than the average number of daily opportunities for destruction and mayhem.

At this point I still have on my May Handy Mommy Maintenance list the following items.......(note any thing that can be fixed in under 15 minutes I do immediatly - usually one or two items a day...times 30 days...somewhere between 30-60 handy mom repairs a month on top of the big ones.)
1. A soccer ball size hole in the family room window (from - you guessed it - a soccer ball.)
2.  Two half repaired - hand size holes in the living room wall from plaster they pounded with a broom - pretending to do something creative.
3. Another pair of glasses to replace - crushed when we hid them under the big love-sac. (SIXth pair in two months I have had to get repaired/replaced.)
4. A pair of expensive headphones for the kids with APD - with the jack cut off.  Nail trimmers were used for this particular event.
5. The insulation around the front door was removed - one swipe at a time by a child who found a pair of scissors unsecured.
6. The awesome sensory table that we love was put down on the ground for 1 minute while being brought up for the summer....two kids jumped in and broke off the drain as well as the plastic around it.
7. Stab holes in my bedroom wall....from a pen.
8. Beds.  Oh yes - if we jump on them (against the law here BTW) and break the slats every week it just becomes part of the routine to fix them.....
9. Shoes, clothes, Bibles, school books - whatever we can leave behind us in a decimated trail wherever we go - regardless of the reminders we provide.
10. How about the cost to our friends as MOFAS who told one of my kids that they would send 049 tee shirts for them after MOFAS on The Hill....the  same child who can't remember where they put their glasses - was like an elephant on this issue.  Thanks MOFAS for sending our friend Sierra to deliver tonight.  It was an awesome surprise for a Friday night!

Note:  For those who are tempted to say 'my kids do those things too' I totally agree - but you expect yours to grow out of those behaviors by a certian age.  Mine just might not. :)   Just saying....especially before I get the comments suggesting punitive punishment, time out or sticker charts. (Choke - snort - giggle:)

Late Night Alley Hunt......

26 monarch caterpillars eat a lot of milkweed.  I just went out in the dark and prowled our city alley for a little bedtime snack to hold them over until morning.  I'm thinking this is pretty funny... mama out in the dark stealing the neighbors weeds.....more strange things for the neighbors to watch and wonder about over the fences tomorrow......hope this post makes someone smile.  It worked for me at the end of a long day.

The Road We Didn't Take........

Three kids needed allergy testing this morning - Madeleine is holding down the fort and I'm 20 miles away with only the ones I gave birth to.  It's a strange thing to be here with this particular combination of kids -  at an extended doctors appointment with a team that doesn't need behavioral management is almost beyond my scope of experience.  I'm simply here to answer medical questions remind them not to itch and offer moral support as they endure the process.

Which leads to a little speculation...........
What would my life would be like if God hadn't expanded our family through adoption?

We would still have learning challenges - all three have some level of dyslexia.
We would still have ADHD - two fall there.

We would still have physical challenges - one has issues with rotation to hips/knees/ankles.
We would still have allergies - as the photos testify.

It's good for me to see that our life would not be without challenges.  And I am sure that if we hadn't adopted these three would expand to fill the space that is currently shared between the 11.  Life wouldn't be simpler or less stressful - I think it would still be full to overflowing.   But we all would have missed out on the overwhelming blessings that our 8 adopted children have brought into our family.  Stretching and growing us far beyond what we could have ever dreamed - allowing us the opportunity to experience life more fully because there is no chance for us to sink into the soft, smothering cushion of middle class life.

Today I tasted that other road and though I enjoyed the ease of it for a few hours - there is not a single ounce of me that regrets the path we followed.

Potty Training and Car Keys....

It's transition time again around here.  This afternoon Steam sat in the drivers seat for the first time and drove me slowly through our city neighborhood.  From scrawny preemie to six foot young adult it's been a fast 16 years.  I am laughing at myself though as I steel myself to potty train the youngest (how hard can it be?  I've done it ten times already?!) at the same time I intentionally place my life in the oldest child's hands.  Parenting is an awesome job but it sure can take a lot out of a person!

Why Are You Here If There is Nothing You Want?

This morning - between the arrival of the repair man to resuscitate the dishwasher and washing off the dirt from phase 2 of the urban garden remodel - I had my first meeting with the county mental health worker to whom one of my kids has been assigned.

It was awkward to say the least. (The meeting not the repair man!)

The county workers don't know what to do with parents who are pro-actively looking for supports for kids are currently doing fine but most likely headed into crisis in the future.  When I explain what I am doing they stare at me blankly and ask the same question in different ways....always boiling down to "What do you want the county to do?" 
"Do?"
"Nothing really at this point."
Which is a total conversation killer for every meeting I have had so far.

Because when I say that we are simply trying to educate ourselves, explore our options and set supports in place to prevent unnecessary crisis situations in the future, they have no box to put my words into. 

They just sit there uncomfortably.  Tying to figure out what to do with this mom who isn't asking them for anything, but who is asking what is available.  A situation that doesn't seem strange to me - but to them seems totally off the wall.

Drat that.
I don't want to have to learn everything in a crisis moment........

Emergency Plans And Crisis Response.......

Tornado season has arrived with the seasonal move into warmer weather. A year ago tornadoes ripped through North Minneapolis and the first Wednesday siren drills take on fresh meaning as I review with whatever child is close the need to pay attention to the high pitched wails that echo through our neighborhood. 

Tornadoes are scary but there are certain indications that they are coming.  The same can often be said about living in a home with identified special behavioral needs.  When I am alert and flexible (vs exhausted with zero margin) I can see the storm brewing and take steps to manage and contain the potential harm.  I have an emergency plan for many situations we encounter.  An over stimulated child who is ramping up based on sensory input can often be removed from a situation either physically (leaving the room, taking a time-out) or relieved of the input (headphones, stroller time, lap time.)  If things go well, thunder clouds can hover over us but not break out into a dangerous storm.  The same can be said of anger challenges, irritation and the random flare ups which seem to be controlled by nothing more solid than the lunar phase.  Having a plan, knowing how to diffuse the situation and being aware enough to identify it early helps us to manage the potential harm that can come of a tornado-like child touching down in our living room.

There are other times when there is no warning.  Out of a clear blue sky a storm hits and we need to have a the ability to shift and flex so that everyone can be safe.  Separate and divide.  Focus and discern.  It's like tracking the progress of a storm by flying through it in a small aircraft.  It's crazy, it's wild, and if there are certain safety measures in place ahead of time the damage can be contained. 

When we are open, there are also opportunities to be drawn into other families storms where we can provide the same sort of navigation and support that we practice at home.  The quick shift from 'stranger' to 'storm specialist' may happen in an instant and can pull all of our previous experience into play.  I had the chance to use my storm tracking skills in the larger community this weekend - it was good to help another family navigate the unexpected darkness and be an extra pair of experienced arms as their world shifted into chaos.  I am praying that as their Monday unfolds and they evaluate the damage they will see the amazing interventions of a God who sends helpers into the darkest storm.  People prepared ahead of time to take the buffeting - those who have tasted this storm before and survived.

Passing The Black Belt Hurdles....

Yesterday morning my 8 oldest kids and I completed the Black Belt Commitment Workout portion of our Black Belt test with ATA.  It was an intense two hours in the heat (80' in the gym) broken up by only one two minute water stop.  The sort of -stretch yourself to the limit-hope you can still walk when you are done- exercises that we look for to help build their confidence. 

A year ago this would not have been possible because pushing yourself to this point takes emotional strength and self control that several had only in limited amounts. But this is a new season in our life and every single one of them flew through the requirements and behaved perfectly.  This morning I am one hopeful momma.  They have done this hard thing and our eyes are now set on the the next one - our Black Belt Decided test on June 1.

Living and loving with FASD is hard- but it's only a piece of the puzzle - not the end of our story. (The photo has nothing to do with the testing - Wind is just helping crack her instructors back after class one night.   But it shows an amazing amount of self control for this little girl.)

"Nothing Wrong With This Child....."

I'm writing this post to all the parents out there who are loving kids who have undiagnosed hidden disabilities.  Those of us who are like the persistent widow at the door....knocking....knocking....knocking...weeping....hoping...pleading...for someone to take our concerns seriously and give us the tools to help our child.  This post is a long-distance hug and reminder that you are not alone..........


Some words are horrible for a parent to hear.  When a doctor calls and says"there is something abnormal with this child's test" one type of crisis sets in.  A life that was sailing along quite peacefully is suddenly rocked by the news that something is 'wrong' with our child and we flounder to find balance and equilibrium within our new reality.

When parenting children who have hidden disabilities hearing the doctor report 'there is nothing wrong with this child' can be much worse.
Ok.  Honestly. 
Horrifically worse.
Why?
Because no one I know drags their child into the psychiatrist, neuropsychologist, psychologist and behavioral specialist because their children are doing great.  No.  We contact these professionals and run through the gauntlets because we can see that something is seriously 'not right' and we are unable to correct the issues using the gear in our tool box.

I want to say loud and clear for all the parents out there who think that their child is a 'little different.'  But who have been told by the experts that they fall within the norms for their current age so there is nothing wrong.......
If in your gut you still think there is something not right...even when they say otherwise........
YOU ARE RIGHT!
They are using a antiquated model of broad developmental norms to determine what's happening with your child.
While YOU know your child intimately and are faithfully watching where they deviate from their own norms.
You are the expert on your child.

Of course this post is surfacing because I was told (again) by a medical professional that 'there was nothing wrong' with one of my children.  That the behaviors I was describing fit into the developmental norm for their age group and that the issues were behavioral caused primarily by the size of our family and the fact that we homeschool.  The solution?  This child should spend as much time as possible away from the family - the family structure is messing them up.  Which is an old, old tune I have heard for the past ......ten years or so.

So am I a slow learner?  If the specialists keep saying the same thing year after year to me why do I keep homeschooling?  Am I so committed to my ideals that I can't try something new?  Am I just a wack head?
Nah....
I'm just the expert on my kids-and on my family.

I'm still homeschooling because they keep making the negative comments about my four/five/six year olds....then the tune changes when those kids turn 8,10,12.  The same kids that they told us were 'fine' as preschool and early grade school kids who just needed to be out of the house, start deviating from the norm enough to be diagnosed with hidden disabilities as pre-teens. And the very same doctors who criticized my homeschooling choice start singing my praises and saying it's the very best option for my kids, pointing out all the ways it has worked well and encouraging me to keep it up.

Not that my kids didn't have the same disabilities when they were little.  Shoot.  Most of them were born with these issues because of pre-birth exposure to drugs and alcohol.  But the behavioral norms for their ages were so broad that they just slipped through as 'fine.' 

And yes.  I'm sure that homeschooling didn't cause the problem.
Seriously.  I have been told that also.  Did you know I could cause all of our issues because I didn't send a child to kindergarten?  Funny me...I thought it might have something to do with the FASD, PTSD, RAD, ADHD, SPD, ASD, LD,  APD.... whatever....that make up how their individual brains and bodies work. 

All that to say.  It still hurts when a professional tells me that our child is fine and that the problems relate to our parenting/education/family choices.  But it doesn't rock me to the core like it used to.  I'm confident that the same God who blessed us with 11 children has a plan for their education and lives and will continue to make it abundantly clear as each day unfolds what the best choices are.  And I trust his opinion way more than the doctor who's simply measuring a childs deviations from the norm based on a ten minute appointment and personal opinions about large families and homeschooling.

And by the way...
Every one of my kids is fine.
There is nothing 'wrong' with them - but many have issues which will be correctly identified in time.
As long as we keep on knocking......

Dental Appointments Make Me Cringe......

 It's over.  The six month dental hurdle has been cleared and all 13 of us got through the morning with no follow up appointments or cavities. (Except for Star's sealants which dont' really count as we are always battling weak enamel on her teeth similar to mine. )  I let out a huge sigh of relief as my schedule is filling up with the next round of medical appointments and I'm feeling just a tad overwhelmed looking at what the next six month requires of us.   There were sweet moments in the morning though - Laughter had his first appointment and got to choose his own toothbrush and those who usually struggle with the sensory pieces of the appointment didn't melt down until they were out of the office. It was good.....but man am I glad that it is over.