Tuesday, May 31, 2011
Parenting is STILL Not My Highest Calling............
Back in 2009 I posted on Leslie Fields great book "Parenting Is Your Highest Calling: And 8 other Myths That trap Us In Worry and Guilt." My real life (vs blogging only) friend Carrie wrote a wonderful post on the same premise, relates it to adoption and mentions the book over at her blog today. I found Fields book freeing three years ago and still share my copy out to anyone who's up for thinking just a little outside the box of 'normal' christian parenting. Not unbiblical, just a very different perspective on what we are doing as parents and what it means to be successful......almost like a handbook for those who know there is no handbook on how to raise our special kids.
GFCF: Maybe It Did Matter......
Crazy. That is the only word I have to summarize the last 48 hours and my new challenge is sifting through the various weird behaviors to figure what was due to our crazy schedule and what might have been caused by reintroducing wheat and dairy back into our life.
As of this moment - we are back to GFCF until I can sort through what is going on. I realized that something extra hard was on my plate when I almost abandoned my full cart at COSTCO because one of the older boys was headed into dangerous emotional territory. Not a big deal normally, but I had left a few of the older kids home to do school work and didn't have any sort of an 'escape' option for him when he started getting overwhelmed. I didn't even have the double BOB which would have allowed him a place to curl up and hide - I had the silly umbrella stroller for the preschool boys....and things were looking prime for a meltdown.
The good thing was that Barb was in the store also and able to help us get through checkout and into the van without him totally losing it. Now, an hour later, he is curled up in my bed, teddy bears all around him sleeping the hard sleep he needs after events like this. Naps are much of the solution for his brain - sometimes he needs two or three a day in order to regulate himself and stay engaged with the world around him.
I need a nap also but hear the laundry siren calling my name.......have I mentioned yet how much I miss my front loaders? These 1970's monsters have taken all the fun out of cleaning clothes but that doesn't mean the piles grow slower. (Whine, whine, whine...)
As of this moment - we are back to GFCF until I can sort through what is going on. I realized that something extra hard was on my plate when I almost abandoned my full cart at COSTCO because one of the older boys was headed into dangerous emotional territory. Not a big deal normally, but I had left a few of the older kids home to do school work and didn't have any sort of an 'escape' option for him when he started getting overwhelmed. I didn't even have the double BOB which would have allowed him a place to curl up and hide - I had the silly umbrella stroller for the preschool boys....and things were looking prime for a meltdown.
The good thing was that Barb was in the store also and able to help us get through checkout and into the van without him totally losing it. Now, an hour later, he is curled up in my bed, teddy bears all around him sleeping the hard sleep he needs after events like this. Naps are much of the solution for his brain - sometimes he needs two or three a day in order to regulate himself and stay engaged with the world around him.
I need a nap also but hear the laundry siren calling my name.......have I mentioned yet how much I miss my front loaders? These 1970's monsters have taken all the fun out of cleaning clothes but that doesn't mean the piles grow slower. (Whine, whine, whine...)
Sunday, May 29, 2011
Don't Poke The Elephant....Parenting Kids With Disabilities....
A few weeks ago I wrote about the reality that being the mom to many kids with hidden disabilities has caused me to develop 'elephant' skin. I shared that I had been......
"Too often verbally whipped
until my emotions were raw
and over time my skin became protective
thick like an elephants.
Because those
who are not walking this path
can't see the harm in their words
or feel the sting of having to convince
everyone
every time
everywhere
that this child
isn't 'normal.......'
There is a second piece to this thought. Not only has my skin been toughened by the harsh reality of living in a world that isn't aware of and is often uncaring about our life and our children's realities, but I have come to realize that we are expected to 'take it' and be polite even when peoples words and ideas cut deeply.
It's as if we are not allowed to cry out when we are pierced and defintely not supposed to acknowledge publicly that we have been wounded. It is some strange social dynamic at work that has caused us to lose some of our footing - I haven't figured it out yet, but it's in the same realm as talking about racism.
Most people become intensely defensive and upset if we even hint that they might have said/done something that hurt us based on our children's disabilities. In my head I hear the same type of arguments flowing out of this side of disability as I do out of racial differences....an instant defensiveness based on 'I have friends who are' or 'I am color/disability blind....' This is a fascinating sociological position to take when we are told we hurt someone either through carelessness or intent. It's sort of turning the whole discussion back around to making it not about the person/family living with a disability but about the speaker and why their words shouldn't hurt. Like an elephant in chains we are expected to take the hits and pokes and not react - and when - in our humanness we do it makes many people disturbed, uncomfortable and wary. Not in a healthy way that will bring understanding and healing but in a 'keep the elephant calm so it doesn't rampage' sort of way. Which makes us all the more likely to start tossing furniture around the next time we are poked.
"Too often verbally whipped
until my emotions were raw
and over time my skin became protective
thick like an elephants.
Because those
who are not walking this path
can't see the harm in their words
or feel the sting of having to convince
everyone
every time
everywhere
that this child
isn't 'normal.......'
There is a second piece to this thought. Not only has my skin been toughened by the harsh reality of living in a world that isn't aware of and is often uncaring about our life and our children's realities, but I have come to realize that we are expected to 'take it' and be polite even when peoples words and ideas cut deeply.
It's as if we are not allowed to cry out when we are pierced and defintely not supposed to acknowledge publicly that we have been wounded. It is some strange social dynamic at work that has caused us to lose some of our footing - I haven't figured it out yet, but it's in the same realm as talking about racism.
Most people become intensely defensive and upset if we even hint that they might have said/done something that hurt us based on our children's disabilities. In my head I hear the same type of arguments flowing out of this side of disability as I do out of racial differences....an instant defensiveness based on 'I have friends who are' or 'I am color/disability blind....' This is a fascinating sociological position to take when we are told we hurt someone either through carelessness or intent. It's sort of turning the whole discussion back around to making it not about the person/family living with a disability but about the speaker and why their words shouldn't hurt. Like an elephant in chains we are expected to take the hits and pokes and not react - and when - in our humanness we do it makes many people disturbed, uncomfortable and wary. Not in a healthy way that will bring understanding and healing but in a 'keep the elephant calm so it doesn't rampage' sort of way. Which makes us all the more likely to start tossing furniture around the next time we are poked.
Saturday, May 28, 2011
GFCF: Why Does That Boy Have A Python Around His Neck?
This Monday marked the 'end' of our three month trial on a GFCF diet. Looking at possible behavioral/physical reactions to reintroducing both dairy and gluten into our diet i decided that last night was the time to do it.
It was anti climatic to say the least. I procured pizza, tollhouse cookies and milk based yogurt, laid it all out for dinner and waited for something to happen. There were a few 'abnormal' behaviors - Willow's night terrors returned and Wind didn't fall asleep until midnight but until they repeat I can't say they were due to stepping back from our GFCFdiet. There was no horrific shift in behaviors and even though Dearest is gone for the weekend (usually a trigger for odd behaviors) the kids and I tackled several large projects without any meltdowns or obvious signs of distress. Good enough to drop in on our friends the Martindales and spend the day planting and playing....good enough to wrap a python around our neck and love that deep sensory squeeze. (SOOOOO not me!)
On the positive side I think that this experiment demonstrates that we do not need to commit to a GFCF diet in the long haul and that none of our kids have a serious reaction to either gluten or casein. On the negative side it means that we are headed into some new medications for behavior management. I really don't like that but at least we have tried this alternative before we go there.
Over the past three months I have learned a lot. Living GFCF wasn't as hard as I thought it would be. Most of the 'hard' things were actually caused by my own lazy habits and bad attitude (I didn't like that fact that 70% of the grocery store was off limits to me) - the biggest being that last minute dinner prep and quick and easy had to be redefined. In this process we all learned that hummus on anything is tasty (rice crackers, sweet potato chips, corn chips) and that there is much more variety in Hispanic and Asian flavors that we had experienced before. As part of the diet I increased our fresh fruits and veggies by 50% a day, personally lost 5 lbs and started reading every label that crossed my path. It was interesting to give up cheese, I found that at about week 8 we lost our 'need' to have faux-cheese - it wasn't that the taste was so bad - I just stopped cooking with it and there was no cheese shaped hole on our diet. I also realized how habitual our diets are when we consume huge amounts of dairy and wheat - having to throw out all of my standard ideas on food was good for a season. After three months my kids are used to substituting soy/rice/almond/coconut products in their diet and seem to do it effortlessly. Much easier than I did ..... I have to confess closet slices of pound cake and even an odd McD's cheeseburger on my way to pick Dearest up at work.
So that's it for tonight. I am taking the crew off the GFCF diet and we will see what happens next. I will be sure and post if anything happens tomorrow - otherwise I will be closing this chapter with a better understanding of our eating habits and a much larger vision of what my kids can and will eat. Who wants the GFCF cookbooks and shopping guides next? Anyone else up for the challenge?
Friday, May 27, 2011
Too Much Contact In The City?
After yesterdays post my girlfriend Carrie Asked a Great Question....here is part of it.
“…..Sometime would you talk about what it is like for your very introverted kids to live in the inner city vs. CS? I'm introverted and growing up, just going to public school was intermitantly overwhelming because I had to cope with so many people. Interacting with 13 people before lunch is one of the reasons I can't imagine living in the inner city. Just my four kids, one PCA and one husband inside my house is everything I can handle some days. So how to your kids like Kudo do it? Do they go along with the crowd? Opt out when they've had enough? Not come out of the house?”
After reading Carries comment I realized one thing that might not be obvious to people who don’t live in the city – even though we intersect and connect with many people each day most meetings last less than five minutes and don’t require any preparation or stress – they simply happen. Because we are living in such tight proximity, visiting each other becomes much more spontaneous and the stress of traditional ‘play dates’ and ‘hostessing’ is virtually eliminated. We chat at the curb, the trash can and in the kitchen as I chop the onions....
With this openness, our relationships are more fluid and there is no need to clean, cook or fuss about time spent together – for me it is entirely freeing. People flow in, out, and around our life not as ‘guests’ but more like natural extensions. “Having company” isn’t the same big deal as it could be and much of the social stress is removed for our kids so it feels very different in action than other social encounters.
Somehow, being closer together and more constantly in contact with our community takes out much of the overwhelming aspect for those who are less social. Kudu is aware that due to the informal structure of most situations he can drift through, say hi, and drift away without it seeming odd or unusual. Because of the frequency of interactions there is also none of the ‘line everyone up to say hi to the guest’ sort of dynamic. People don’t expect to be greeted bye or even see every family member at each visit so there is more flexibility for the times an introvert is needing to be apart.
Honestly, I still can’t wrap my mind around having a PCA, therapists and my husband in the home or involved with my family almost every day. To me that feels overwhelming and oversocial (if that’s a word) because as helpful as those extra adults might be, they would be adding another person to my direct line of involvement. It seeme easier to me to intentionally live with overlapping and relaxed concentric circles (which also offers an array of brief opportunities to use developing social skills) as a good fit to our ‘whole schooling’ life attitude and takes away much of the pressure (on me!) to play hostess - a role I don't have much energy or interest in filling. (Note: That doesn't mean don't come visit - it only means that when I say 'just drop in' I mean it.)
I totally understand Carries thoughts on the city as overwhelming - for some families even the suburbs are too much and they have to move further out. I beleive that each family has a balance they need to maintain in order to thrive and in this season and for our family - being in constant, familiar, supportive contact with different people is exactly what we need.
Which doesn't exactly answer her question - but might clarify the thought that we are constantly overrun with company and never have a moment alone. It's more like I never clean the house for company.......
“…..Sometime would you talk about what it is like for your very introverted kids to live in the inner city vs. CS? I'm introverted and growing up, just going to public school was intermitantly overwhelming because I had to cope with so many people. Interacting with 13 people before lunch is one of the reasons I can't imagine living in the inner city. Just my four kids, one PCA and one husband inside my house is everything I can handle some days. So how to your kids like Kudo do it? Do they go along with the crowd? Opt out when they've had enough? Not come out of the house?”
After reading Carries comment I realized one thing that might not be obvious to people who don’t live in the city – even though we intersect and connect with many people each day most meetings last less than five minutes and don’t require any preparation or stress – they simply happen. Because we are living in such tight proximity, visiting each other becomes much more spontaneous and the stress of traditional ‘play dates’ and ‘hostessing’ is virtually eliminated. We chat at the curb, the trash can and in the kitchen as I chop the onions....
With this openness, our relationships are more fluid and there is no need to clean, cook or fuss about time spent together – for me it is entirely freeing. People flow in, out, and around our life not as ‘guests’ but more like natural extensions. “Having company” isn’t the same big deal as it could be and much of the social stress is removed for our kids so it feels very different in action than other social encounters.
Somehow, being closer together and more constantly in contact with our community takes out much of the overwhelming aspect for those who are less social. Kudu is aware that due to the informal structure of most situations he can drift through, say hi, and drift away without it seeming odd or unusual. Because of the frequency of interactions there is also none of the ‘line everyone up to say hi to the guest’ sort of dynamic. People don’t expect to be greeted bye or even see every family member at each visit so there is more flexibility for the times an introvert is needing to be apart.
Honestly, I still can’t wrap my mind around having a PCA, therapists and my husband in the home or involved with my family almost every day. To me that feels overwhelming and oversocial (if that’s a word) because as helpful as those extra adults might be, they would be adding another person to my direct line of involvement. It seeme easier to me to intentionally live with overlapping and relaxed concentric circles (which also offers an array of brief opportunities to use developing social skills) as a good fit to our ‘whole schooling’ life attitude and takes away much of the pressure (on me!) to play hostess - a role I don't have much energy or interest in filling. (Note: That doesn't mean don't come visit - it only means that when I say 'just drop in' I mean it.)
I totally understand Carries thoughts on the city as overwhelming - for some families even the suburbs are too much and they have to move further out. I beleive that each family has a balance they need to maintain in order to thrive and in this season and for our family - being in constant, familiar, supportive contact with different people is exactly what we need.
Which doesn't exactly answer her question - but might clarify the thought that we are constantly overrun with company and never have a moment alone. It's more like I never clean the house for company.......
Thursday, May 26, 2011
"Why Was This Child Born Blind?" Sunday's Sermon........
This Sunday Pastor John preached on the passage in John 9:1-23. As a mom to kids with disabilities this is a life affirming and life sustaining message that I want to write on my heart and refer back to as the hard days come and our road unfolds before us. I know I keep saying this....but it is sooooo good to be home!
Loving Urban Life Because Of The People........
My life is running over with the joy of urban life today - I like people - all sorts of crazy people - real people - broken people...it's only noon and my life has intersected with lots of them today.It started with our own crew. Some days school is easy - other days it's horrifically challenging or even impossible. This particular one was a little different because I needed to balance today's activities in such a way that tomorrows FASD evaluations at the UM would be a success. After wrestling through the calender (we have to review every day what is happening in the course of the next week so there are no surprises for those with impaired memory) math and a little reading I turned them loose to play outside.
The top two photos are what 'play' looked like today. I walked over a block and borrowed a push mower and set the kids in shifts to mowing and raking our next door neighbors yard. Both our neighbors work and their mower wont start so the grass ranged anywhere from six to twelve inches high...some of which was really too much for even the most determined boy in our house. After a few minutes futile efforts with the thick part we followed the sound of a gas mower down the block and across the street and asked Jeff (a shy 40 something MN bachelor man) if he would help us with the worst of it.
He was thrilled to be asked and he and Speed tackled the back yard together. Shirts off...grass and sticks flying. Both of them looked to be having fun, a positive engagement using Speeds talents in a way that didn't depend on him sitting still, being quiet and paying attention. Heck no. I was all for loud noises and aggressive movements as he hacked his way behind Jeff and successfully burned through a sunshiny morning that could easily have ended in a meltdown.
When the back was done the girls claimed the mower and tackled the less intimidating boulevard areas in our regular school uniform of bare feet, black velvet and pink tops...making just as much noise as the boys had made in the back. It was so good.
Quantifying it, our lives have intersected with 13 people outside the family by noon today - simple interactions of a few minutes that all occurred without once getting into a car or leaving the immediate vicinity of our house. Three widows, four adults on the social fringe of society, two adults with serious mental disabilities, an ex-con (or maybe current con...but our friend either way), a property manager, two strangers who were visiting neighbors and many people riding and walking past on the sidewalk. People we needed to be outside to interact with, people who's lives would not have easily merged with ours if we hadn't been intentionally living here in the city, people who make our life richer for having them as a part of it. I am thankful that we decided to put down the books and step out into our neighborhood today - the investment both ways just feels so right.
Wednesday, May 25, 2011
Suburban Nation: The Rise of Sprawl and the Decline of the American Dream....
Trees, sidewalks, people, noise, diversity, activity....these are all words that describe 'normal' life in the city. They are the heartbeat of our families days and a significant part of what we found missing in our 'Colorado Experience.'
Last week I pulled Suburban Nation: The Rise of Sprawl and The Decline of the American Dream (Duany, Speck and Plater-Zyberk) off the shelf at the local library and have been fascinated ever since. It takes all those gut feelings I have had about the physical components of community and puts it into very clear and understandable logic.
It made perfect sense to me that street width, curb design, building height and set backs from the sidewalks would all affect how a street 'feels' to a pedestrian. (And therefore influence if people would really walk there.) It also resonates that mixing socio-economic, cultural, racial and religious differences in a neighborhood improves communication, reduces fear and builds the type of community that many of us long for. A community vision that many suburban architects are directly in conflict with or even dead set against. To the degree that their designs leave many of us furtively trying to shape the spheres of our lives in a way that allows overlap between our shopping/living/walking/schooling/work/church rather than accepting the utterly distinct and compartmentalized units we are supposed to accept. It's the same village concept which many sucessful people flee in the name of 'moving up' and that I crave in the depths of my soul as a grounding factor for my daily life.
My need to be grounded isn't new - as a child I was raised in a very small and overlapping community. My Kindergarten teacher lived across the street from my parents and I lived within walking distance of all my schools from the first day of Kindergarten through high school graduation. I first 'felt' the discomfort of leaving this type of setting when I went away to a state college and realized that there was no overlap in my life - everything was a separate and often anonymous activity. I was very sick that Freshmen year (humm...sort of like I was in Co) and ended up moving back to my hometown as soon as I could. It just felt wrong to the very roots of my toes to be there....it wasn't a community...everyone seemed to be there for only two things. To have a lot of fun (it was a 'party' school) and to get a 4 year degree...all of the other facets of life seemed to be on 'hold' or ignored while we 'went to college' which wasn't enough for me.
In Colorado Springs I felt the same disconnect. Lot's of separate things going on - but no overlap, no intertwining of lives outside of whatever particular event a relationship was formed under. It was strange and again very unsettling - to be the outsider trying to integrate pieces of our life and realize that most people were very happy to keep things very compartmentalized. It was like holding a strong magnet in each hand and feeling that repulsion that occurs when you have one backwards but are expecting the strong pull of magnetic attraction. It was just wrong for me - and for my kids who need to be known as a whole person it was a very scary thing to watch.
Reading Suburban Nation has been enlightening. Chapters on the victims of sprawl (Anyone who can't drive, teens, young moms etc..) isolating housing design inspired by sprawl (massive sanctuaries to recover from the driving - often set back from the street and away from others), the cost of sprawl to family relationships and the advent of the Soccer Mom have helped me to solidify what it is that I have been fighting for so long. Moving to Colorado and back has helped me to identify what I do like - people, places, relationships, stability - and to remind me to always value them above money, prosperity, success and perceived safety. Reading through the psychological cost of sprawl makes me even more thankful that God has placed us in a tiny house on a tiny lot with neighbors out every door and window.
Last week I pulled Suburban Nation: The Rise of Sprawl and The Decline of the American Dream (Duany, Speck and Plater-Zyberk) off the shelf at the local library and have been fascinated ever since. It takes all those gut feelings I have had about the physical components of community and puts it into very clear and understandable logic.
It made perfect sense to me that street width, curb design, building height and set backs from the sidewalks would all affect how a street 'feels' to a pedestrian. (And therefore influence if people would really walk there.) It also resonates that mixing socio-economic, cultural, racial and religious differences in a neighborhood improves communication, reduces fear and builds the type of community that many of us long for. A community vision that many suburban architects are directly in conflict with or even dead set against. To the degree that their designs leave many of us furtively trying to shape the spheres of our lives in a way that allows overlap between our shopping/living/walking/schooling/work/church rather than accepting the utterly distinct and compartmentalized units we are supposed to accept. It's the same village concept which many sucessful people flee in the name of 'moving up' and that I crave in the depths of my soul as a grounding factor for my daily life.
My need to be grounded isn't new - as a child I was raised in a very small and overlapping community. My Kindergarten teacher lived across the street from my parents and I lived within walking distance of all my schools from the first day of Kindergarten through high school graduation. I first 'felt' the discomfort of leaving this type of setting when I went away to a state college and realized that there was no overlap in my life - everything was a separate and often anonymous activity. I was very sick that Freshmen year (humm...sort of like I was in Co) and ended up moving back to my hometown as soon as I could. It just felt wrong to the very roots of my toes to be there....it wasn't a community...everyone seemed to be there for only two things. To have a lot of fun (it was a 'party' school) and to get a 4 year degree...all of the other facets of life seemed to be on 'hold' or ignored while we 'went to college' which wasn't enough for me.
In Colorado Springs I felt the same disconnect. Lot's of separate things going on - but no overlap, no intertwining of lives outside of whatever particular event a relationship was formed under. It was strange and again very unsettling - to be the outsider trying to integrate pieces of our life and realize that most people were very happy to keep things very compartmentalized. It was like holding a strong magnet in each hand and feeling that repulsion that occurs when you have one backwards but are expecting the strong pull of magnetic attraction. It was just wrong for me - and for my kids who need to be known as a whole person it was a very scary thing to watch.
Reading Suburban Nation has been enlightening. Chapters on the victims of sprawl (Anyone who can't drive, teens, young moms etc..) isolating housing design inspired by sprawl (massive sanctuaries to recover from the driving - often set back from the street and away from others), the cost of sprawl to family relationships and the advent of the Soccer Mom have helped me to solidify what it is that I have been fighting for so long. Moving to Colorado and back has helped me to identify what I do like - people, places, relationships, stability - and to remind me to always value them above money, prosperity, success and perceived safety. Reading through the psychological cost of sprawl makes me even more thankful that God has placed us in a tiny house on a tiny lot with neighbors out every door and window.
Tuesday, May 24, 2011
Winding Down The Colorado Experience.........
Doesn't that sound nice? "The Colorado Experience." Since returning to MN I have been trying different ways to summarize what we learned and experienced in our year away and calling it an 'experience' seems the healthiest avenue.
This next week will (hopefully) tidy up our last loose ends with the Big House portion of the journey - Dearest is headed out on an adventure to retrieve our bikes and such from the garage and a super-serious buyer has a purchase offer on the table and inspection scheduled for Thursday. My heart is sad that we are not there to celebrate this years neighborhood fauns and the beauty of spring in the mountains - there were wonderful things about where we lived but there was such an enormous gap relationally that the beauty was like a band-aid on a broken arm.
Please pray that I will be able to speak about and consider the 'expereince' as part of our life journey - not with judgement or tension - but simply as part of the whole that shapes the story. It was hard.....it was exhausting....and it was very good for teaching me to always keep my eyes and my whole heart upon Jesus.
(EEK! What on earth is going on with Blogger this AM? Crazyness with my tags)
This next week will (hopefully) tidy up our last loose ends with the Big House portion of the journey - Dearest is headed out on an adventure to retrieve our bikes and such from the garage and a super-serious buyer has a purchase offer on the table and inspection scheduled for Thursday. My heart is sad that we are not there to celebrate this years neighborhood fauns and the beauty of spring in the mountains - there were wonderful things about where we lived but there was such an enormous gap relationally that the beauty was like a band-aid on a broken arm.
Please pray that I will be able to speak about and consider the 'expereince' as part of our life journey - not with judgement or tension - but simply as part of the whole that shapes the story. It was hard.....it was exhausting....and it was very good for teaching me to always keep my eyes and my whole heart upon Jesus.
(EEK! What on earth is going on with Blogger this AM? Crazyness with my tags)
Monday, May 23, 2011
Urban Gardens.........
This weekend marked the end of a marathon month for our crew. Though my mommy heart longed to buckle down and get back on track with math this morning, I could tell that the need for a positive group project would be a better way to kick the week off.
Gardening 101 became the project.
First we carried and measured and cut our 1x2's to make a grid work for our community garden bed.............
Then in teams of 2 (I learned from Noah on this one....two is a number easily managed on hard days!) we walked the block and a half to the garden and planted seeds for 11 different varieties of vegetables and flowers.
Sunday, May 22, 2011
An Island or an Oasis........Living Openly As A Family With Hidden Disabilities.
Several years ago I posted that we are like a City on A Hill when we adopt trans racially - in that post I basically theorized that because we 'look' different than most families we stand out in most social situations and many strangers are drawn to engage us in conversation because that distinctive.
As an obviously mixed race family we still gather a lot of attention, but our personal focus has shifted away from racial differences and centers much more on the reality of our kids hidden disabilities and challenges. When we started adopting we were required to read books and demonstrate our ability to be sensitive to racial diversity before our first AA child was placed with us. Never did we have to prove our preparedness to parent a child with undiagnosed brain damage, autism, serious learning disabilities or mental health challenges - I am glad that we are where we are today - parenting kids under each of those categories - but laugh at the thought that 'race' was the big concern about us adopting them.
I blog today in order to offer a window into our life as a family with huge and often scary hidden disabilities. I didn't start here. In the beginning - the first five years or so of our journey into hidden disabilities - our challenges were very private and managed alone at home. I was desperately lonely as my world became smaller and narrower in order to accommodate my child's special needs in a way that wouldn't send him spiraling off into a uncontrollable frenzy of screaming and wall kicking. Our privacy was totally secure - but we had zero outside support because I had hidden it so well. Drat that.
Over the next four years we were blessed with many children who came with undiagnosed hidden disabilities and I realized that I had created an island environment where we could function but very few outside people ever visited or knew what 'really' happened there. In some strange way we were riding on the reputation our early years of parenting neurotypical kids had generated, even though our parenting had changed dramatically to meet our kids needs and we looked very little like that original family.
Since then I have been slowly back filling the ocean of space around us with words, openness, education, shared experience and honesty. What once was an isolating ocean is being transformed into an oasis of life. A place where others can come to taste the hope and joy that parenting kids with disabilities can bring as well as offer a safe place for other parents to rest sore and tired hearts in the cool water of encouragement. Sometimes nothing more than hearing that another mom is struggling can give us hope for one more moment...hour...or day and we can press on in faith.
There is no question, my life isn't pretty or nice by the worlds standards - but I have a deep satisfaction that we are doing/being/loving exactly who and where we are supposed to be. Our lives are not wasted and our children are not a burden. Too often I find I am the chain around their tender necks dragging them back toward my own comfort zone. Not willing to fully enter into their world of disability and unwilling to even admit to myself the depth of my stubbornness. (Smiling quietly now as I watch my fingers backfill a little more of the isolating ocean with that confession...)
An oasis, a safe place, a light house - these are the words carved into my heart when I got up this morning. I smiled hugely as Pastor John preached two hours later on God's plans in disability and the call to the larger church not to ignore or disregard those who are challenged among us (I will post the link as soon as it is up.) The sermon added one more thing to that list in my heart - I can't find the right word yet - it's that feeling that our oasis might also be for those who are considered healthy and whole - those who want to know and experience life with those who are living the beautiful reality of disability and the dependency of walking not in our own strength but truly in His.
As an obviously mixed race family we still gather a lot of attention, but our personal focus has shifted away from racial differences and centers much more on the reality of our kids hidden disabilities and challenges. When we started adopting we were required to read books and demonstrate our ability to be sensitive to racial diversity before our first AA child was placed with us. Never did we have to prove our preparedness to parent a child with undiagnosed brain damage, autism, serious learning disabilities or mental health challenges - I am glad that we are where we are today - parenting kids under each of those categories - but laugh at the thought that 'race' was the big concern about us adopting them.
I blog today in order to offer a window into our life as a family with huge and often scary hidden disabilities. I didn't start here. In the beginning - the first five years or so of our journey into hidden disabilities - our challenges were very private and managed alone at home. I was desperately lonely as my world became smaller and narrower in order to accommodate my child's special needs in a way that wouldn't send him spiraling off into a uncontrollable frenzy of screaming and wall kicking. Our privacy was totally secure - but we had zero outside support because I had hidden it so well. Drat that.
Over the next four years we were blessed with many children who came with undiagnosed hidden disabilities and I realized that I had created an island environment where we could function but very few outside people ever visited or knew what 'really' happened there. In some strange way we were riding on the reputation our early years of parenting neurotypical kids had generated, even though our parenting had changed dramatically to meet our kids needs and we looked very little like that original family.
Since then I have been slowly back filling the ocean of space around us with words, openness, education, shared experience and honesty. What once was an isolating ocean is being transformed into an oasis of life. A place where others can come to taste the hope and joy that parenting kids with disabilities can bring as well as offer a safe place for other parents to rest sore and tired hearts in the cool water of encouragement. Sometimes nothing more than hearing that another mom is struggling can give us hope for one more moment...hour...or day and we can press on in faith.
There is no question, my life isn't pretty or nice by the worlds standards - but I have a deep satisfaction that we are doing/being/loving exactly who and where we are supposed to be. Our lives are not wasted and our children are not a burden. Too often I find I am the chain around their tender necks dragging them back toward my own comfort zone. Not willing to fully enter into their world of disability and unwilling to even admit to myself the depth of my stubbornness. (Smiling quietly now as I watch my fingers backfill a little more of the isolating ocean with that confession...)
An oasis, a safe place, a light house - these are the words carved into my heart when I got up this morning. I smiled hugely as Pastor John preached two hours later on God's plans in disability and the call to the larger church not to ignore or disregard those who are challenged among us (I will post the link as soon as it is up.) The sermon added one more thing to that list in my heart - I can't find the right word yet - it's that feeling that our oasis might also be for those who are considered healthy and whole - those who want to know and experience life with those who are living the beautiful reality of disability and the dependency of walking not in our own strength but truly in His.
Friday, May 20, 2011
Moving Up To Purple Belt......
Last week we (myself and the eight oldest) tested and were approved for our Purple belt in TKD with Jones ATA in Brooklyn Center. Even in this season, when our life is overwhelmed by the details of undiagnosed medical conditions and the chaos of moving we have tried to provide a rhythm of life that helps the kids regulate. TKD, church, homeschool, and a predictable daily schedule are all are parts of the puzzle that help us keep as much consistency as possible.
Good job crew! Now we are looking toward our Blue belts in the late summer.....
Thursday, May 19, 2011
Listen To Their Hearts............
This week my friend Julie posted on our need to really Listen to our children - especially those with special needs and limited communication skills. My heart embraced her message wholly as we have been journeying through a valley with several of our kids trying to figure out what the actions/emotions/behaviors really mean.
I think that is my word to share today....
When we know .....and pay attention to....the cry of our children's hearts then we can often plow through the layers of their disabilities and mixed messages and find the core issues which are triggering the irritating and often disruptive things in their lives.
Not that we often get it the first time, or the tenth or the hundredth. But with trial and error, with failure and miscommunication, we can slowly get to know what the underlying challenges are and start to parent each one in the way they need it most. Not the way we want to - but in the way they need us. And that is a very freeing thing.
I think that is my word to share today....
When we know .....and pay attention to....the cry of our children's hearts then we can often plow through the layers of their disabilities and mixed messages and find the core issues which are triggering the irritating and often disruptive things in their lives.
Not that we often get it the first time, or the tenth or the hundredth. But with trial and error, with failure and miscommunication, we can slowly get to know what the underlying challenges are and start to parent each one in the way they need it most. Not the way we want to - but in the way they need us. And that is a very freeing thing.
Wednesday, May 18, 2011
Ketchup, Jelly and Pickles........
Life started with screaming this morning as Willow took a spill carrying a 114 oz open jar of ketchup into the kitchen. She was loud enough to justify the amount of blood she thought had been spilt in the fall....but a tad over dramatic for only landing on her bum.
Violet Jelly: Urban foraging was on the schedule for this sunny day - our Grandma Neighbor Nancy asked for violet gathering volunteers and my crew was more than up for the challenge. It takes a lot of violets to make six cups but we have given her our best shot this week - abandoned houses are a great location for them as well as just below the railroad grade.
Pickles: The park has an abundant supply of dandy lions but not many violets.....and while we were out gleaning the big boys were home making chicken salad for lunch.
Too bad the pickle jar broke while they were fishing them out!
Peaceful jars...in a quiet house. Seems a little odd to see on my blog doesn't it?
Tuesday, May 17, 2011
Weighing The Benefits..........
Every Spring I review and prepare our kids academic goals and evaluate what therapies I need to incorporate or remove from our agenda. Last year Speed had great results with Vision Therapy as well as his ILS (Auditory Processing) and Lexia (reading program.) Star attacked and mastered the Scottish Rite's Take Flight dyslexia program and I worked on our relational and therapeutic parenting skills. I am a little late this year looking over the plan - something about the drama of moving and the unpredictable nature of our Internet connections threw my schedule all off. Oh well....there is still a chance of snow here in MN so I am not feeling guilty about my timing at all.
This year I have a plethora of options to evaluate (almost all out of pocket at $50-$100/session.) and I would love any input that parents of kids with hidden disabilities like FASD/ADS/RAD/SPD have to share. In the journey so far I have done much of our therapy at home - it's a killer to get me and a single child out of the house on a regular basis so things that can happen at home are much preferred. We have also chosen not to utilize school district services (based on them being overloaded already and the fact that we are homeschooling and would need to work through an IEP) nor ventured very far into the psychologists offices.
Any input? Suggestions? The great part is that we have healthy and open relationships going on with all the kids right now so we are not trying to unearth anything - just looking for what the 'next' thing is on our agenda.
This year I have a plethora of options to evaluate (almost all out of pocket at $50-$100/session.) and I would love any input that parents of kids with hidden disabilities like FASD/ADS/RAD/SPD have to share. In the journey so far I have done much of our therapy at home - it's a killer to get me and a single child out of the house on a regular basis so things that can happen at home are much preferred. We have also chosen not to utilize school district services (based on them being overloaded already and the fact that we are homeschooling and would need to work through an IEP) nor ventured very far into the psychologists offices.
Any input? Suggestions? The great part is that we have healthy and open relationships going on with all the kids right now so we are not trying to unearth anything - just looking for what the 'next' thing is on our agenda.
Monday, May 16, 2011
Elephant Skin...........
(Note: this isn't directed at any person or incident in particular but is simply a review of the journey that I have been called to walk as the mom to many kids with hidden disabilities. My wounds are not unique or special, they are simply scars from an imperfect world. I wrote this for the moms who are hurting today, to encourage them that they are not alone and that they are not failures - even if they are sitting under the judgement of those who do not understand - it's God's opinion that matters and He placed these children in our arms ......for good.)
Eleven years ago my paradigm of parenting shattered.
Exploded into a thousand screaming pieces
by a neurologically different child.
Every rule I had learned on how to train and teach
was doing damage instead of good.
He didn't want to be held,
or touched,
or moved,
from one moment to the next.
Discipline was strange,
disjointed,
in his head it meant different things
than it had to my other kids.
There was no
cause-effect learning.
There was simply endless screaming.
Or numb silence.
And my tears blended with his
as we learned
that this child wasn't going to change
that this new reality
was our life and theirs
and wouldn't heal....
And no one really knew the
breaking
groaning
weeping
despair
those first years
were filled with.
Because none wanted to believe
what we were seeing.
No one wanted to hear
the fears of our hearts
and the truth of each discovery.
It wasn't that I didn't try
to find help.
I was just rebuked,
pushed off,
smiled at as overprotective.
Too often verbally whipped
until my emotions were raw
and over time my skin became protective
thick like an elephants.
Because those
who are not walking this path
can't see the harm in their words
or feel the sting of having to convince
everyone
every time
everywhere
that this child
isn't 'normal.'
Not as an excuse
but as a baseline for how to best love them
Because it makes other people uncomfortable
to think
that there isn't a rule,
a way
a method
a cure.
to change the reality of parenting damaged kids.
Eight children later
and many different neurological
tangles to unravel
My skin is almost perfectly thickened
to protect me from the
thorns of criticism.
But sometimes
a chink is found
and someone
with an agenda
or a personal issue
about our family
will dart in
and stab an unprotected area.
A place not yet thickened
through experience
and it brings bitter tears.
I admit
it's tempting to pull everything in
to allow the protective covering
to do it's job
and
stop giving others
the opportunity to harm.
Except
that my life is bigger
bigger than me
bigger than my family
bigger than any dream I
could ever contain.
I am looking forward
not into death
but into an eternity in heaven
which affects
everything.
I can embrace the pain
or not
I can wear my heart
on my sleeve-
exposed.
Because I know
that if one other mom
can see it
hear it
and find the strength
to go
one more day.
That it is worth the pain,
the risk
the torture
of having those
who don't understand
constantly pouring salt
into my wounds.
If one other heart
can beat
more clearly
toward heaven
it's worth the suffering
to me.
Eleven years ago my paradigm of parenting shattered.
Exploded into a thousand screaming pieces
by a neurologically different child.
Every rule I had learned on how to train and teach
was doing damage instead of good.
He didn't want to be held,
or touched,
or moved,
from one moment to the next.
Discipline was strange,
disjointed,
in his head it meant different things
than it had to my other kids.
There was no
cause-effect learning.
There was simply endless screaming.
Or numb silence.
And my tears blended with his
as we learned
that this child wasn't going to change
that this new reality
was our life and theirs
and wouldn't heal....
And no one really knew the
breaking
groaning
weeping
despair
those first years
were filled with.
Because none wanted to believe
what we were seeing.
No one wanted to hear
the fears of our hearts
and the truth of each discovery.
It wasn't that I didn't try
to find help.
I was just rebuked,
pushed off,
smiled at as overprotective.
Too often verbally whipped
until my emotions were raw
and over time my skin became protective
thick like an elephants.
Because those
who are not walking this path
can't see the harm in their words
or feel the sting of having to convince
everyone
every time
everywhere
that this child
isn't 'normal.'
Not as an excuse
but as a baseline for how to best love them
Because it makes other people uncomfortable
to think
that there isn't a rule,
a way
a method
a cure.
to change the reality of parenting damaged kids.
Eight children later
and many different neurological
tangles to unravel
My skin is almost perfectly thickened
to protect me from the
thorns of criticism.
But sometimes
a chink is found
and someone
with an agenda
or a personal issue
about our family
will dart in
and stab an unprotected area.
A place not yet thickened
through experience
and it brings bitter tears.
I admit
it's tempting to pull everything in
to allow the protective covering
to do it's job
and
stop giving others
the opportunity to harm.
Except
that my life is bigger
bigger than me
bigger than my family
bigger than any dream I
could ever contain.
I am looking forward
not into death
but into an eternity in heaven
which affects
everything.
I can embrace the pain
or not
I can wear my heart
on my sleeve-
exposed.
Because I know
that if one other mom
can see it
hear it
and find the strength
to go
one more day.
That it is worth the pain,
the risk
the torture
of having those
who don't understand
constantly pouring salt
into my wounds.
If one other heart
can beat
more clearly
toward heaven
it's worth the suffering
to me.
Friday, May 13, 2011
Funny Twist to the IRS Adoption Tax Refunds.............
Good news is that the IRS has truly started moving the 8839 Adoption Refunds for several of my readers. The funny twist is that of the handful that have made it through the process, two have received too much money back....like many thousands too much. (One in the $3000 range another $24,000) Now they face the quandary of how to return this extra money to the IRS without causing a huge tailspin of chaos....
On our own front, this week I identified the particular confusion that our family created on the 8839's with our Tax Advocate. Last night I faxed over the timeline of our placements/adoptions on a handy-dandy excel spread sheet so that she could physically see the overlap and muddle that 8 adoptions in 10 years created for the rolling credit turned refund. Hopefully, with that in hand, she will be calling us back sometime early next week so that I can send her the last documents she needs and we can get out of the 'pending' and into the 'processing' pile. If not - maybe this is all about building a relationship with a woman named Madeline in California and not about us at all. Wouldn't that be an interesting twist on all this - sort of a God way for life to unfold. I'm game for whatever the plan is.
On our own front, this week I identified the particular confusion that our family created on the 8839's with our Tax Advocate. Last night I faxed over the timeline of our placements/adoptions on a handy-dandy excel spread sheet so that she could physically see the overlap and muddle that 8 adoptions in 10 years created for the rolling credit turned refund. Hopefully, with that in hand, she will be calling us back sometime early next week so that I can send her the last documents she needs and we can get out of the 'pending' and into the 'processing' pile. If not - maybe this is all about building a relationship with a woman named Madeline in California and not about us at all. Wouldn't that be an interesting twist on all this - sort of a God way for life to unfold. I'm game for whatever the plan is.
Thursday, May 12, 2011
Purple Belts and Pink Ribbons........
 |
| Mr Jones in standing behind the Sister Chicks and Mrs Ferguson is on the end. |
Tonight our family is testing for our purple belt with our new school - Jones ATA in Brooklyn Center. Though we sorely miss Mr Wilcox and the crew at ATA Colorado Springs, we are getting acquainted with and connecting to this new group of friends and teachers. Mrs Ferguson and her daughter B are particularly encouraging and seem to appreciate the particular nature of the 9 of us who are there.
The pink ribbon is for one of my friends in the neighborhood. While we were gone last year she was blessed with her second daughter and diagnosed with serious breast cancer. This Spring she has been going through a barrage of heavy duty treatments and is preparing for major surgery in July which certainly isn't the way she planned to celebrate her daughters first birthday. Simply connecting with her again makes breast cancer more real, and all the more scary - that said - I believe that united we can work toward finding a cure and that a lack of research money should never the barrier to healing. Breast cancer is close to all of us - last year my mom walked in Spokane as she was making her own journey through treatment and twice over the past few years I have needed to have follow ups on my own lumpy chest. (clear mammogram for me last month to all my prayer partners - thanks!)
This year Mrs Ferguson (Michele is her 'real' name) is raising funds for the three day walk here in MN. As soon as I finish this post I am clicking over to her team to make my own donation and hope that others will partner with us as well - because every woman affected by breast cancer is a mother, daughter or sister to someone who is hoping for a cure.........and it might be our dollars which make the difference.
Speed and Kudu's Baptisms..........
Last night went well. Both Kudu and Speed were able to give their simple testimonies to the congregation and held themselves together through the long service. A high point for me was watching Kudu come up out of the baptistery NOT screaming. With his sensory issues and autistic tendencies (the autism diagnosis still doesn't seem quite correct) having our Pastor hold his arm and push him backwards into the water might have been enough to trigger an extreme response. This was one thing that we practiced ahead of time....bending backward and trusting the adult (me) to not let him fall. It was also a huge blessing that last night - for the first time in 6 weeks he did not have a debilitating migraine. (Only a small one that we managed with medication.) Thanks to all who were praying - this was a very important moment in the life of our sons and it was so good to celebrate it with our faith-family here in MN!
Wednesday, May 11, 2011
A New Line of Discussion: FASD and The Church.......
FASD and the church..............I must either be feeling a little more settled here in the hood or have lost it entirely to even begin to approach this particular topic....either way it's on my front burner today and I'm jumping in because tonight is a very special night for two of my sons - they are being baptized.
My kids with hidden disabilities are each very unique in their personalities and challenges -though they may share a common diagnosis of FASD or ASD or SPD the challenge plays out in different ways for each one. Tonight both Kudu and Speed are stepping out in faith and participating in believers baptism (Believers baptism? That means that they are making the choice to follow Christ and make a public profession through baptism rather than us making the decision when they were infants.) One is almost paralyzed today - terrified of standing in front of the church and giving his testimony - the other is positively bouncy, calm and confident, sure he has this covered. Not unusual reactions for two brothers but in this case it may play out in some interesting was. The confident one may need to be redirected if he gets a little carried away in his speaking time and flips into 'entertainer' mode (which I have worked out in my head and almost sent myself into fits of laughter thinking about what he 'might' say...think stand up comedian - just a tad edgy...) The other one may freeze up and be unable to speak or develop a sudden debilitating physical ailment.
I believe that it's really a tossup how this evening is going to play out which is fine...this is the reality of our life and in the end the main issue isn't how my kids 'behave' or what others 'think' of their behavior, maturity or eloquence. This is about them and their relationship with Christ - they are stepping out in faith- both knowing full well that they wont 'measure up' next to their well spoken, confident, neuro-typical peers, but both also knowing in their hearts that they have been called to this path.
And it isn't necessarily an 'easy' path for kids with hidden disabilities. Being in the church brings with it behavioral expectations, intellectual failures and social standards with are not necessarily part of either FASD or ASD. Because the disabilities are 'hidden' the larger church body often attributes differences to parenting failure or insincerity in a child's faith. Not many Sunday School teachers can be told to Fu** Off by an upset child and brush it off as the disability talking. Nope, they tend to stand on the principles of respect and honoring authority and take that child's behavior at 'face' value....neuro-typical face value....which is not the same thing at all. But that is another post - the clash between church expectations and the reality of being born with a FASD - today I am celebrating baptism.
My boys are being baptized! I am thrilled because we in no way pushed them this direction and in their own time they have each stepped forward, acknowledged their sins, committed their lives into Christ's good keeping and now are walking down this path. Regardless of if they can read, count or keep up with social situations my sons are choosing to follow Christ and I am right here cheering them on. Will you cheer with me?
My kids with hidden disabilities are each very unique in their personalities and challenges -though they may share a common diagnosis of FASD or ASD or SPD the challenge plays out in different ways for each one. Tonight both Kudu and Speed are stepping out in faith and participating in believers baptism (Believers baptism? That means that they are making the choice to follow Christ and make a public profession through baptism rather than us making the decision when they were infants.) One is almost paralyzed today - terrified of standing in front of the church and giving his testimony - the other is positively bouncy, calm and confident, sure he has this covered. Not unusual reactions for two brothers but in this case it may play out in some interesting was. The confident one may need to be redirected if he gets a little carried away in his speaking time and flips into 'entertainer' mode (which I have worked out in my head and almost sent myself into fits of laughter thinking about what he 'might' say...think stand up comedian - just a tad edgy...) The other one may freeze up and be unable to speak or develop a sudden debilitating physical ailment.
I believe that it's really a tossup how this evening is going to play out which is fine...this is the reality of our life and in the end the main issue isn't how my kids 'behave' or what others 'think' of their behavior, maturity or eloquence. This is about them and their relationship with Christ - they are stepping out in faith- both knowing full well that they wont 'measure up' next to their well spoken, confident, neuro-typical peers, but both also knowing in their hearts that they have been called to this path.
And it isn't necessarily an 'easy' path for kids with hidden disabilities. Being in the church brings with it behavioral expectations, intellectual failures and social standards with are not necessarily part of either FASD or ASD. Because the disabilities are 'hidden' the larger church body often attributes differences to parenting failure or insincerity in a child's faith. Not many Sunday School teachers can be told to Fu** Off by an upset child and brush it off as the disability talking. Nope, they tend to stand on the principles of respect and honoring authority and take that child's behavior at 'face' value....neuro-typical face value....which is not the same thing at all. But that is another post - the clash between church expectations and the reality of being born with a FASD - today I am celebrating baptism.
My boys are being baptized! I am thrilled because we in no way pushed them this direction and in their own time they have each stepped forward, acknowledged their sins, committed their lives into Christ's good keeping and now are walking down this path. Regardless of if they can read, count or keep up with social situations my sons are choosing to follow Christ and I am right here cheering them on. Will you cheer with me?
Tuesday, May 10, 2011
Pamela's Pancake and Baking Mix.....YUM!
Mothers Day here ended with a round of pancakes and bacon for dinner which is as close as I can get to 'fast food' on our GFCF diet. Last week we tried making them from scratch but ended up with a fairly serious failure due to measuring error. Think crepes but even waterier and then almost too thick when we added rice flour. It was pitiful. Yesterday I splurged at Rainbow and bought a bag of the Pamela's Pancake and Baking mix and wow! was it good. Almost like 'normal' pancake good.....which is saying a lot as we are looking at our thrid month as a GFCF family.
Monday, May 9, 2011
Living With FASD: Controled By Expectations.............
It's a Monday in the truest sense of the word around here. Petty fights are breaking out all over and many of us have a 'wish we were back at Sunday' attitude regarding the list of undone chores and the dreary rain. For one of our kids with FASD this is the recipe for an utterly miserable day because he woke up this morning anticipating sun, fun and a mommy not controlled by the tyranny of crisis intervention.
I love my son - no question about it. And as I watched our morning unfold I could see that something more than the shift to a rainy Monday was bugging him and that mining it out needed to be on my agenda. This has been one of the hardest things for me to accept about my kiddos - the simple reality that they need my help in order to process parts of daily life that most other kids just take in stride. It was torture today because he was in the mood to be 'crabby' and 'rough' with the other kids and in truth was enjoying the role of 'dissapointed' far more than he was interested in getting over the issue and moving on. Drat. Double drat. I had to jump it up the priorities list and engage all my available memory to recall what might have triggered this particular episode. (He wont often volunteer what the problem was/is but if I can name it he can often work through it which is much better than days of crabby behaviors.)
By noon I had identified what I thought was at the root of the surly attitude and violent outbursts so I invited him into my office (yeah still in the bathroom), held him in my lap (while sitting on the only 'seat') and started the process of unraveling the emotional knot. I was right. After about 5 minutes of stiff backed, growling denial I had a pliable, sweet temped limp noodle in my lap.. He had been upset because he didn't know that yesterday was going to be Laughter's baby dedication at church. Arriving there and discovering the routine had been changed was enough to send him off into a spiraling vortex of behaviors, attitude and tearful drama that was all about missed expectations. His expectations for a 'normal' Sunday at church had been blown away by Dearest and I sitting in another section for the first 30 minutes of the service and then standing in front of the congregation for the dedication.
It didn't matter that we had reviewed the schedule every day for the past week at family meeting or that he had trusted friends with him when we were gone. It was about a collision between his expectations for the day and the reality of the schedule and it was enough to send him into this place where he had no words and little ability to explain what was wrong.
I love my son - no question about it. And as I watched our morning unfold I could see that something more than the shift to a rainy Monday was bugging him and that mining it out needed to be on my agenda. This has been one of the hardest things for me to accept about my kiddos - the simple reality that they need my help in order to process parts of daily life that most other kids just take in stride. It was torture today because he was in the mood to be 'crabby' and 'rough' with the other kids and in truth was enjoying the role of 'dissapointed' far more than he was interested in getting over the issue and moving on. Drat. Double drat. I had to jump it up the priorities list and engage all my available memory to recall what might have triggered this particular episode. (He wont often volunteer what the problem was/is but if I can name it he can often work through it which is much better than days of crabby behaviors.)
By noon I had identified what I thought was at the root of the surly attitude and violent outbursts so I invited him into my office (yeah still in the bathroom), held him in my lap (while sitting on the only 'seat') and started the process of unraveling the emotional knot. I was right. After about 5 minutes of stiff backed, growling denial I had a pliable, sweet temped limp noodle in my lap.. He had been upset because he didn't know that yesterday was going to be Laughter's baby dedication at church. Arriving there and discovering the routine had been changed was enough to send him off into a spiraling vortex of behaviors, attitude and tearful drama that was all about missed expectations. His expectations for a 'normal' Sunday at church had been blown away by Dearest and I sitting in another section for the first 30 minutes of the service and then standing in front of the congregation for the dedication.
It didn't matter that we had reviewed the schedule every day for the past week at family meeting or that he had trusted friends with him when we were gone. It was about a collision between his expectations for the day and the reality of the schedule and it was enough to send him into this place where he had no words and little ability to explain what was wrong.
As the mom to kids with this particular challenge I work hard to help them find words to cue us and others when expectations are not met. We constantly work to find non-violent, non-damaging ways for them to communicate the off balance feeling in their hearts and day after day after day ....I work with them to identify the solutions as well as the answers to the damage that was cause by their pre-birth exposure to alcohol. Damage that robs them of the joy of seing their little brother dedicated in the fog of unmet expectations...........
Saturday, May 7, 2011
Root Shock.....
Last week I picked up a fascinating book at the library titled 'Root Shock: How Tearing Up City Neighborhoods Hurts American And What We Can Do About It.' The title appealed to my ongoing concern for our urban neighbors but the content spoke to my heart and made me see the past year in a clearer light. As I read each chapter I found the words for what this season has meant to me and to the family....it wasn't exactly PTSD or Transition Anxiety. It was something less easy to pinpoint and even harder to understand - it was root shock. A shared experience that many African American communities have experienced due to Urban Revitalization programs and Eminent Domain claims enforced by urban centers. It is what happens when an utterly secure and confident individual (s) are pulled out of their interdependent community and relocated to another place. It can happen due to natural disaster (flood, fire, tornado etc..), forced relocation (urban renewal or other programs), or be completely voluntary like us where you move for work.
Whatever the reason - persons who were fine in one environment were not fine when they tried to reestablish in another community. It wasn't about poverty or wealth, safety or danger....it was about being known and identified as part of the whole. It was about having a place and an understanding of the social dynamics that swirled around them. For me it was about being known.
I had no idea how hard it would be to go back to ground zero in every way. To be the stranger in every environment, the outsider at every function, the unknown and not trusted parent in the drs office. It might not have bothered me ten years ago - but with the weight of our special needs kids and the importance of supportive relationships for them (and us) I just couldn't handle it in the same way. I realized that there wasn't enough of me to go around in that environment and I experienced root shock in ways that I would have never predicted. My friend Kari posted today on the human factor in parenting kids with disabilities...my humanness was not weakness - but it was a wake up call that I needed support as much as my kids did and that I didn't have time or energy to start over as the new kid on the block.
Sixteen months later we are back in our community and recovering from the shock of being displaced (though it still seems strange to say since we moved voluntarily.) Shock is the right word for it...that slightly numb, living from moment to moment sort of feeling where you are just bracing for the 'next' thing to happen. I suspect it will take at least another year to find our equilibrium again and start moving forward...a year of painful healing following this year of tears. But I also believe that our roots will settle again, we will find our place amongst our neighbors and be known.
Whatever the reason - persons who were fine in one environment were not fine when they tried to reestablish in another community. It wasn't about poverty or wealth, safety or danger....it was about being known and identified as part of the whole. It was about having a place and an understanding of the social dynamics that swirled around them. For me it was about being known.
I had no idea how hard it would be to go back to ground zero in every way. To be the stranger in every environment, the outsider at every function, the unknown and not trusted parent in the drs office. It might not have bothered me ten years ago - but with the weight of our special needs kids and the importance of supportive relationships for them (and us) I just couldn't handle it in the same way. I realized that there wasn't enough of me to go around in that environment and I experienced root shock in ways that I would have never predicted. My friend Kari posted today on the human factor in parenting kids with disabilities...my humanness was not weakness - but it was a wake up call that I needed support as much as my kids did and that I didn't have time or energy to start over as the new kid on the block.
Sixteen months later we are back in our community and recovering from the shock of being displaced (though it still seems strange to say since we moved voluntarily.) Shock is the right word for it...that slightly numb, living from moment to moment sort of feeling where you are just bracing for the 'next' thing to happen. I suspect it will take at least another year to find our equilibrium again and start moving forward...a year of painful healing following this year of tears. But I also believe that our roots will settle again, we will find our place amongst our neighbors and be known.
Friday, May 6, 2011
Finding the Next Level of Order in The Crowded House.....
Yesterday was a turning point for us here in the Crowded House - not a 'decisions have been made' one - but a subtle shift from 'this little house is temporary - no need to nest' to 'it's been thirteen weeks, we can't live well in this level of disorder any longer.'
Not that it's chaos and mess now - it's just a reality of large families that things run smoother when everything has a place and everyone knows where that place is.
Silly things are pushing me there like the reality that the winter clothing needs to be sorted, washed and stored instead of piled on the basement floor or the pot holders should have a place to hang near the stove rather than being mixed into a bin in the bathroom with the towels.
The pressure was strong enough that out came the tools and i began the process of creating order out of disorder.....starting with a shelf and several hooks.
Thursday, May 5, 2011
Pamela's Bread Mix......and Pasta By The Pound!
Something strange is going on here....about a week ago we started receiving boxes from Amazon filled with Pamela's Bread Mix and various versions of wheat-free pasta. Not an unusual occurrence.....except that this is the week when 100% of our paycheck went to paying the rent here in MN, the storage fees for our furniture and the mortgage on the Colorado house. Trust me - boxes from Amazon were not on the 'to do' list at this moment and I didn't order anything. In the mystery of it all word came back that my friends have chosen to 'shower' me with some of the GFCF treats that we can't afford in this season. Special treats like Pamela's Bread blend....which produces a slightly sweet but utterly yummy loaf on the regular cycle in the bread maker. (Note: for those who are looking at a price comparison to buying GFCF bread. Each bag makes three, 2 lb loaves so there are 9 loaves per case. GFCF bread here in MN runs about $6/loaf and we need two of this loaf size to make 12 sandwiches.) I
The boxes have also included various varieties of GFCF pastas. Another treat we had to give up because it was cost-prohibitive. No pictures of that but the joy of having more than two pounds of pasta in the house again makes me quite content. Tinkyada brand is wonderful as are these Ancient Harvest Quinoa Pagoda chunks....and in a 10 lb bag I feel absolutely overwhelmed with the abundance.
The boxes have also included various varieties of GFCF pastas. Another treat we had to give up because it was cost-prohibitive. No pictures of that but the joy of having more than two pounds of pasta in the house again makes me quite content. Tinkyada brand is wonderful as are these Ancient Harvest Quinoa Pagoda chunks....and in a 10 lb bag I feel absolutely overwhelmed with the abundance. Thanks to all of you who are sending, praying and encouraging us in this season. Having Kudu in constant crisis as well as all our usual challenges has left me with a fairly short supply of creativity and our GFCF diet means that there are almost no meals that don't start from absolute scratch. Pasta and bread adds those two options back into our options and relieves a little of the stress.
'Fair' Doesn't Equal 'Same' Treatment For Kids With FASD's.......
This is too easy this week...instead of having to dredge up my own FASD momma realities I can just point you all over to Kari's site and I get a break from the writing process. (Thanks Kari - I'm having a diet coke and chocolate sort of day and there is neither in the house......grumble....grumble...) Today she posted on the reality that fair doesn't mean being treated the same when considering the needs of our kids with FASD (or any other hidden disability.) It's amazing how many people I meet who think it is wrong to adapt our FASD/ASD kids environments to better meet their needs - sadly many of the strongest critics are also parenting kids with similar issues who's very real needs are being ignored.
Wednesday, May 4, 2011
Identifying The Difference Between Dysmaturity and Immaturity......
Kari over at Coffee Catharsis wrote a very important post today explaining the difference between Dysmaturity and Immaturity. Even though the words look similar, there is a very critical difference because one you expect people to grow out of and the other is a failure of an organism (here a person) to mature or develop. A very important thing to know when raising and working with kids who have FASD's and one that most people don't understand or appreciate.
Kari wrote.....
People do not outgrow FASD. Children with FASD will become adults with FASD. There is often a maturity spurt in the late 20s / early 30s when a person with FASD has been well supported. However, it isn't an achievement of full maturity (as if there had never been prenatal exposure to alcohol) but rather a narrowing of the gap between the person with FASD and their peers.....
The school counselor or teacher means well when they suggest, "We are working on the baby talk at school and reminding Java to use her 3rd grade voice. It would be helpful if her family would remind her about that at home as well. "
Java is a third grader who functions like a very young preschooler when she is frustrated and anxious. We can remind her all day long not to regress in her speech when she is anxious, but it is more effective and respectful of her needs to modify the environment and help her to reduce the anxiety....... link here to read the rest.
As the mom to more than one alcohol affected kid I hear all the time from well meaning people who think that my kids behavior is due to immaturity or a lack of attention on my part. Like maybe I 'missed' the fact that my 10 year old sucks his thumb and can barely read, or that my five year old is throwing a two year old tantrum? Some things in our life may be simply a lack of maturity - but other things are definitely caused by dysmaturity and it's my job to sort out which behaviors fall into each pile and address them each with respect and love.
Kari wrote.....
People do not outgrow FASD. Children with FASD will become adults with FASD. There is often a maturity spurt in the late 20s / early 30s when a person with FASD has been well supported. However, it isn't an achievement of full maturity (as if there had never been prenatal exposure to alcohol) but rather a narrowing of the gap between the person with FASD and their peers.....
The school counselor or teacher means well when they suggest, "We are working on the baby talk at school and reminding Java to use her 3rd grade voice. It would be helpful if her family would remind her about that at home as well. "
Java is a third grader who functions like a very young preschooler when she is frustrated and anxious. We can remind her all day long not to regress in her speech when she is anxious, but it is more effective and respectful of her needs to modify the environment and help her to reduce the anxiety....... link here to read the rest.
As the mom to more than one alcohol affected kid I hear all the time from well meaning people who think that my kids behavior is due to immaturity or a lack of attention on my part. Like maybe I 'missed' the fact that my 10 year old sucks his thumb and can barely read, or that my five year old is throwing a two year old tantrum? Some things in our life may be simply a lack of maturity - but other things are definitely caused by dysmaturity and it's my job to sort out which behaviors fall into each pile and address them each with respect and love.
Adoption Tax Refund (8839/2011) Verification Of Deposits....
It's not our deposit - but I have verified the first two 'for sure' carry forward IRS return refunds with rollovers from 2005. It seems a few others slipped through before the audit system was up and running but I see now one full refund reported as deposited on 3/29 and another on 5/3 out on my regular adoption boards. This is the first real movement I have seen so far with the rollovers. Hopefully the dam will break soon and adoptive families all over the US will be able to stop this strange dance with the IRS.
(Added Later: Don't be upset if you have told me you received your refund on an earlier post. I am looking at the larger picture and the stonewall that seems to have been hit by the majority of 'early' rollover adoptive families that submitted their paperwork in mid-February or later. I'm not 'not believing' you - just watching the wheels turn and it seems that some of the 'reviewed' ones are now squeezing through..)
(Added Later: Don't be upset if you have told me you received your refund on an earlier post. I am looking at the larger picture and the stonewall that seems to have been hit by the majority of 'early' rollover adoptive families that submitted their paperwork in mid-February or later. I'm not 'not believing' you - just watching the wheels turn and it seems that some of the 'reviewed' ones are now squeezing through..)
Strep and Migraines?
In the past 7 days Kudu's migraines have been escalating and the complications have been compounding to the point that late last night we had exhausted our options and headed to the ER. Following up on his tangible complaint of a sore throat the ER doctor provided us with another interesting piece to the puzzle - Kudu has strep. A quick trip around the Internet indicated that strep can cause migraines and his first unusual headache started just about the time strep was diagnosed here in the Crowded House.
Might be connected - might not. But for today we have him on antibiotics and will wait and pray that the excruciating cyclical pain from last night wont be the rhythm of this day. If it is we will hunker down and take it one step at a time.
Might be connected - might not. But for today we have him on antibiotics and will wait and pray that the excruciating cyclical pain from last night wont be the rhythm of this day. If it is we will hunker down and take it one step at a time.
Monday, May 2, 2011
My Not-So-Theraputic Parenting Monday.......
Ok - this day is going to push me to a double latte if much more happens. It started off a little wobbly with Kudu recovering from last nights weird neurological stuff but I thought we were doing 'ok' when I faced 7:00am with a fresh loaf made with Pamela's bread mix toasted and on the table beside fresh strawberries and soy yougart. Seemed like a good start especially when we flew thrrough the 8:20am dentist appointment and did the banking on the way home.
Walking back into the Crowed House was the problem....one I really couldn't avoid since I was standing outside in the softly falling snow (yeah...snow) and I could hear Kudu winding up for a hissy on the other side of the door. Poor guy. What began as a headache escalated through both doses of his migraine meds and into the realm of hysteria-inducing pain. Pair the pain with intermittent times of total blindness, ten worried siblings and a mom who needed to get the dr's in a row as far as where we were heading. It wasn't exactly a morning for therapeutic parenting and the structural supports that our FASD/ASD kidds need. Not at all.
I lost it. Not in a 911 call for help sort of way. But in a haul the 10 year old with FASD into the bathroom and yell at him to 'Stop it! Stop it! Stop it! This one time everything is SOOOO not all about you!' Which almost made me fall off the toilet laughing because with his issues it IS all about him. He can't think much beyond himself and his feelings and needs and desires. And I was yelling at him to...be normal and act normal and stop acting as if he has FASD. Which is about the stupidest thing I could have said. Really. And of course I apologized and asked forgiveness.
So there you are. For all of you who haven't seen me lose it - I shared it here so there will be no illusion about my ability to keep my cool. I lose it, we pick up the pieces, glue ourselves back together and move forward.
Walking back into the Crowed House was the problem....one I really couldn't avoid since I was standing outside in the softly falling snow (yeah...snow) and I could hear Kudu winding up for a hissy on the other side of the door. Poor guy. What began as a headache escalated through both doses of his migraine meds and into the realm of hysteria-inducing pain. Pair the pain with intermittent times of total blindness, ten worried siblings and a mom who needed to get the dr's in a row as far as where we were heading. It wasn't exactly a morning for therapeutic parenting and the structural supports that our FASD/ASD kidds need. Not at all.
I lost it. Not in a 911 call for help sort of way. But in a haul the 10 year old with FASD into the bathroom and yell at him to 'Stop it! Stop it! Stop it! This one time everything is SOOOO not all about you!' Which almost made me fall off the toilet laughing because with his issues it IS all about him. He can't think much beyond himself and his feelings and needs and desires. And I was yelling at him to...be normal and act normal and stop acting as if he has FASD. Which is about the stupidest thing I could have said. Really. And of course I apologized and asked forgiveness.
So there you are. For all of you who haven't seen me lose it - I shared it here so there will be no illusion about my ability to keep my cool. I lose it, we pick up the pieces, glue ourselves back together and move forward.
Updated Prayer Needs....
No real word yet on the CO house...waiting on that but it has taken second place in our minds as Kudu has experienced two sight-loosing migraine episodes in the past 12 hours and is at the max for his medications. Waiting for the dr to return our call...nothing like a screaming big kid in the Crowded House to get my undivided attention.
(Noon Update: Now Kudu's vision is fading in and out - at least four sessions of total blindness this am some with pain others without. Appt at 3:30)
(Noon Update: Now Kudu's vision is fading in and out - at least four sessions of total blindness this am some with pain others without. Appt at 3:30)
Sunday, May 1, 2011
Prayer Appreciated....It Might Be Offer Day in CO......
We just got a call from our Realtor in CO - there may be an offer today on our house there. Praying that we will be content in God's revealed plans for our day/week/year. I'm starting to giggle inappropriately again.........so please pray over that little issue also!
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