Tag Archive | Josiah

Josiah’s Story about the 4th of July & Val’s Arbutus Beach & Cottage Reminiscences

Source: Josiah’s Story about the 4th of July

Hey, my son Josiah shared some of his insights about the 4th of July & celebrating near our family’s Cottage in Gaylord, Michigan.  There are some lively discussions going on in the Comments Section of his original post, so I wanted to link that post here on my page to find it more easily going forward.

There are some beautiful descriptions of Michigan there from people who have visited over the years!  It’s so great to find even visitors to Michigan have been blessed here!

All of what you see below got generated by looking for appropriate images…which led to reminiscing about life & times Up North…Whew, that was fun but also unexpected!

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This is a picture of Otsego Lake, Gaylord, MI at sunset & that is the very dock used by the street where The Cottage is located & this dock is lovingly maintained by a kind year-round neighbor–image found via a Bing.com image search for “Otsego Lake, Michigan”!

 

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Map of Otsego Lake, Michigan from a Bing.com image search

For the 4th of July, Gaylord usually conducts their Fireworks Show from the Otsego County Park shooting the fireworks off over the Lake.  We get a front row seat to this majestic & patriotic display from “our” beach.  Usually the lake fills with boats so that people watch the show from all angles and situations.  After the County show oftentimes there are many neighbors up & down the beach that put on pretty impressive personal displays, even before such elaborate explosives were available in-state.  Some of the regular out of state visitors also packed quite a bang-up version of personal 4th displays!

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This is similar to our fireworks view, from a Bing.com image search for “Gaylord Michigan fireworks”

From this map of Otsego Lake, you can see that the Lake is roughly 5 miles long and about 1 mile wide at its widest, and many generations of the extended family have taken pride in swimming across the lake–including me!  The Cottage is located along the Northern most side of “The Pointe” that is prominent just North of Otsego Lake State Park.  If you would bisect that Pointe the Northern half would constitute Arbutus Beach, originally set up as a Public Beach (so the Lakefront property owners don’t technically own the Beach between their property & the water).  The Southern half of that Pointe, all the way to Old 27 Highway would be Pine Beach, where Uncle Hugh, Aunt Bernice, & their kids Tom & Karen had cottages.  Pine Beach was set up as Private Beach property so that the lake-front people own the Beach down to the water.  The other owners in Pine Beach only have water access at a couple of access points, somewhat like at the end of the roads.  We actually “slept under the stars” on our cousins’ beach a few times, but that was a more regular occurrence during my Dad’s & Aunt Pat’s Endless Summers of Fun!

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This view is looking South, with The Pointe protruding into the water…from earlier times, like my Dad’s childhood; from a Bing.com image search for “otsego lake, gaylord michigan “

Now Arbutus Beach, because of various lawsuits & disputes has become “The Arbutus Beach Association”.  This makes the Beach rather “semi-private”, whereby in order for people from outside the Association to technically have access to the beach, they need to be guests of Association Members.  We lived at The Cottage during the time the whole lawsuit thing was just getting underway.  In fact, I was operating as an Avon Lady, with a territory that encompassed the entire Arbutus & Pine Beach area.  The Lawsuit was a frequent topic of conversation as I made may way through my Avon Territory and I heard many sad stories from residents.  In some cases friends who had known/interfaced with each other for generations were no longer speaking because they were on opposite sides of the (pointless) disputes.  To my knowledge, some of those historically congenial relationships were permanently destroyed through this lawsuit & subsequent legal maneuvering & fallout.  The only “winners” in all of that were the lawyers…

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This is the sign as you enter Arbutus Beach off Old 27, from a Bing.com image search for “Arbutus Beach, Michigan”

Since my Dad & Aunt Pat, and their cousins Tom & Karen, spent their Summers at Otsego Lake, we get plenty of historical insights & nostalgia about the way things used to be up there.  They traveled around with a bunch of similarly aged kids some of whom lived Up North year round and some of whom, like all of them, were Summer Refugees from Detroit, including a gang of kids at the next most northern train stop, WaWaSoo.  They speak fondly of the days when there were fewer docks & boats on the lake, like two pictures above.  There also were many community events that happened around the lake, at least in the Summer time.  There are many ads in the Gaylord Herald Times Newspapers from like a hundred years ago that show the vibrant community life that seemed to revolve around Otsego Lake back in the day (see some links at the very end of this posting)…The below picture is an historical one of the Resort where historically many community events were held, I believe.  This is now a private residence with a huge dwelling erected on the former community-centric site.

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from a Bing.com image search for “Arbutus Beach, Michigan”

 

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My Great Grandparents’ Cottage & one of their rental cottages in the foreground; from a Bing.com image search for “Arbutus Beach, Michigan”

The above picture shows cottages that are on the street set back from the lake and near the top of the hill.  You can just see the lake in the distance in the middle left of this photo, beyond the car.  This appears to be one of the cottages my great grandparents Rowland Edward & Florabelle Mansell Thompson used to rent to others.  The white cottage in the center of the picture was the cottage my great grandparents moved to Arbutus Beach and was apparently the first cottage there.  The story goes that they bought the lumber company’s manager’s cottage/office? from the South West side of Otsego Lake.  It was pulled by horses over rolling logs across the frozen Lake one winter.

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from a Bing.com image search for “horses pull house across frozen lake”

Though I couldn’t find a picture showing horses pulling a house across a frozen lake, the size of the logs in the above picture and to some degree the time frame may be representative of the process of moving my Great-Grandparents’ First Arbutus Beach Cottage across Otsego Lake.  Also, my Dad’s namesake & grandfather, William Ellsworth Stoddard, found his calling working in lumber, first in Northern Michigan and later managing his boss’ lumber yard in Detroit…WES also had a Gaylord cottage as did several of his children, my Grandpa Elzine Munger Stoddard’s siblings.

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from a Bing.com image search for “horses pull building”

I guess if you add the above two pictures together, divide by two, and pull the building over ice it Might Approximate what allegedly happened with my Great-Grandparents’ First Cottage!  At some time I hope to peruse the historical newspapers from that location & era to see if there might be some mention of this momentous event.  It sounds like the kind of local color piece that would have been so interesting to read from that time period.  Alternatively I may try to see if the Gaylord/Otsego County Historical Society has some record of this event–and hopefully pictures to go with the account!  There’s another couple approximations of that event below…though my great-grandparents’ cottage was bigger (or did it only become bigger later???)…However this was accomplished, it was likely a pretty big deal and involved quite a few people & animals…I would have loved to have heard the tale from my Great Grand Father, as he was a notorious Tall Tale Teller!

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from a Bing.com image search for “horses move building”

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from a Bing.com image search for “horses move building winter”

 

After my Great-Grandparents, Rowland & Florabelle Thompson, died one of their Grandsons, Kenny Moore, who lived in Traverse City, owned their original cottage for many years.  He sold it to his mother’s brother, Thurman Thompson, who lived in California and would occasionally return to Michigan to visit his sisters Vivian Beatrice Thompson Stoddard (my grandmother) & Bernice Genevieve Thompson (Tom & Karen’s mother–she married Hugh Orr Thompson so basically retained her maiden name as a married woman).  After Uncle Thurman died one of his daughters, Mary Louise, inherited the cottage & she eventually moved to Michigan to live there year round.

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from a Bing.com image search for “Fairview Cemetery, Gaylord, Michigan”

By the way  all the names mentioned in the above paragraph, excepting Kenny & Mary, are buried in Fairview Cemetery in Gaylord.  My parents recently bought lots in the vicinity of where my Dad’s first cousin Tom was so lately laid to rest.  Though I hope that it is still many, many years before we need to put that land to use, it is a comfort to know that Mom & Dad will be buried so near so many of the relations on my Dad’s side and so close to our beloved Cottage.  We visited Tom’s grave over Memorial Day and it was a beautiful weather day, though of course bitter sweet in our loss…It was also remarkable the high volume of Military Service represented in that Cemetery, for it appeared that close to half of those graves, going back at least to the Civil War, carried American Flags to honor their Service!

 

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from a Bing.com image search for “Arbutus Beach, Michigan”

This above picture is the cottage that lies between our family Cottage and Otsego Lake–you can see the white “sleeping porch” of Our Cottage behind their side entrance roofing.  When I was a child I used to play with the kids who visited there.  When Michael & I lived at The Cottage in ’93 & ’94 our Pastor’s wife’s sister & brother-in-law lived there with their family.  Later it was bought by a Gaylord native who worked & lived downstate.  It recently changed hands and is now a rental cottage for the new owners.

The swing & platform in the above photo was erected by our neighbors across the street to accommodate the matriarch of that clan when she comes to visit from Florida.  When I was a kid my Grandma & I would sit on the immense log that marked the line between grass & beach to watch sunsets & chat, under where the swing & platform now reside.  Virtually every evening my Dad will sit on that swing, with his sister if she’s Up North, or my Mom, myself, or any of the many grand-kids who might be about to see if there will be yet another spectacular sunset display (& I’ve seen many people up & down Arbutus Beach do this too).

The white cottage on the left is owned by a lovely lady who also spent her growing up Summers at The Lake, like my Dad & Aunt did.  She comes up from Ohio and spends a lot of time Up North throughout the year in her retirement.  To the right of the swing (not in the picture) is a small brown cottage that was owned for many years, possibly generations, by one of the families who generated that dreaded & divisive lawsuit.  They were from California and the man’s brother also had a place further North within the Arbutus Beach community.  The little lake-front gem recently changed hands & is now owned by a couple who live further up the street year round, & maintain that dock in the very top photo above.  They turned that little cozy cottage into a rental place & my parents actually rented it one Summer when so many of our clan were Up North for the 4th for extra sleeping & hangout space–it was quite lovely!

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from a Bing.com image search for “Arbutus Beach, Michigan”

It’s possible that the above picture is from the “Arbutus Beach Highlands”, a small residential community just East of Old 27, across from the Arbutus Beach & Pine Beach neighborhoods & entrance.  Several years ago, Josiah & I along with Brandon & Clarissa spent about 3 weeks at the Cottage in Gaylord.  We walked along the wooded trails of the Highlands, to pick some wild blackberries.  During one of our excursions we ran across some Elk foot/hoof prints.  We would regularly also see Deer prints, but not the animals. Another time, August 2013 to be specific, as Josiah was recuperating following his Liver Transplant in July, he & I had an extended Cottage visit.  On that trip I actually saw a small Red Fox along the Train Tracks where you turn into Arbutus Beach–the only time ever in 50+ years of personal excursions there!  There is so much Natural Beauty abounding in the area.  Sometimes it reminds me of my Grandma, who died in the 1970s, to see the various plants & animals, as we used to walk to the Pointe & some of the wooded pathways together & just talk….She used to be a Teacher, loved kids, and shared her love of God’s world directly with me!!!  These are such treasured memories…

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from a Bing.com image search for “Gaylord, Michigan”

Above is an historical image of the Call of the Wild Museum.  This is a dated though fun family outing place, especially on bad weather days.  My husband often takes our kids there to buy yet another cool knife from their well stocked Gift Shop.  There are many trophy animals on display there including quite a few specimens taken by the legendary hunter, Fred Bear.  He was a dear friend & mentor to hunter, rocker, conservative commentator, and “Motor City Mad Man” Ted Nugent.  I believe Ted has connections to Northern Michigan, but I think more so to the Grayling area, about 1/2 hour South of Gaylord, where he obtained a lot of Fred Bear’s property following Fred’s passing.  I also believe that Fred Bear was a very gifted Archer and even has a particular bow named after him.  In our family my husband brought the Bow Hunting tradition to Michigan when we moved Up North as Newly-Weds.  He used to get various bow-hunting magazines then & I believe Michigan had more bow hunters than any other state!

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from a Bing.com image search for “Gaylord, Michigan”

Gaylord is practically perfectly situated for Four Seasons Living, equidistant between the Equator & the North Pole.  It is known to have the highest snowfall in the Lower Peninsula of Michigan.  The last Winter we lived there, 1996-1997,  I believe it had roughly 220 inches of snow!  Even so, they did a great job of maintaining the road conditions so driving wasn’t too hazardous, relatively–except, of course, during white outs!  There is some picture in the family vault showing The Cottage with snow up to the eaves of the roof, similar to the image below!

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from a Bing.com image search for “Gaylord, Michigan winter”

 

Well I’ll leave this meandering trip down Memory Lane with another stunning Otsego Lake Sunset!  In case you can’t tell, I Love The Cottage, Arbutus Beach, and Gaylord, Michigan & am so thankful that my husband Michael & I began our family there!!!  In fact we may have the only Gaylord born relation within the extended clan, in our firstborn, Nathaniel, who was born in Gaylord, and marked on The Wall at just one day old. We gifted him the nickname of Jackpine Savage because of that Northern Michigan birth!  The Wall would be the Door Jambs at The Cottage between the Dining Room & Living Room.  The Inner-Facing Jamb on the Lake side has my Dad’s Generation & spouses.  The Inner-Facing Jamb on the Garage side has My Generation & spouses.  The Dining Room Facing Jamb on the Lake side has My Kid’s Generation.  Finally, the Dining Room Facing Jamb on the Garage side has my first cousin’s grand-kids–as in my generation’s grand-kids & my dad’s great grand-kids, whenever our side adds to that generation.  No one has been marked on that wall immediately after birth except for Nathaniel…& speaking of marking, the Fourth of July is the traditional time to check everyone’s height (including against existing & ancestral markings)…& this year we get to add in our latest family member, Nathaniel’s New Bride, Tara!

All our years are written with love in the very fibers of The Cottage!

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from a Bing.com image search for “Arbutus Beach, Michigan”

PS If you’d like to see a Newspaper article from back when Michael & I and the Boys lived in Gaylord check it out here, on pages 1, 4, & 5:

http://207.74.70.101:8080/docushare/dsweb/Get/Document-6631/1996-11-07%20Thu%20Building%20Familes.pdf

Page 2 of the below newspaper tells of some of the history of Arbutus Beach and speaks so highly of Otsego Lake as a natural beauty filled resort vacation destination–in 1923!

http://207.74.70.101:8080/docushare/dsweb/Get/Document-8848/1923-07-26%20Thu.pdf

The below link goes to the searchable Newspaper Archive for the Otsego County Library!

http://207.74.70.101:8080/docushare/dsweb/HomePage

 

 

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Shorthand Hospital Run…

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from a Bing.com image search for “U of M Hospital”

So my son, Josiah, and I returned to the University of Michigan Hospital today because I’d rescheduled his MRI of the head (aka Brain Scan) from yesterday afternoon to this morning, so he could participate in a special needs social event last night.  We rarely have back to back hospital runs so this was kind of “fun”…

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from a Bing.com image search for “U of M Hospital”

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from a Bing.com image search for “who heals you of all your diseases scripture”

  • Up late, running late, getting to the hospital “on time” cause we left a cushion!
  • No traffic “cops” at the parking structure entrance like yesterday (when a screaming motorist & screaming parking lot “enforcement” personnel made me think someone just might pull a weapon–it’s Detroit area, after-all–& for once Josiah decided to Not escalate an already tense situation!)
  • Doing loop-de-loops in the parking structure looking for a space…and Josiah feels some dizziness coming on (he’d already complained how he got dizzy at his recent Liver MRI & was concerned about dizziness from the procedure)
  • Offering to drop J off near the entrance we might use (depending on what level I actually get to park on) & he finally takes me up on the offer–so hoping he actually follows instructions & waits in the right place–praying all the way…
  • making our way through the various “buildings” (interconnected) of the hospital complex to the appropriate elevators & descending to sub-basement B-2
  • walking the halls to the Adult MRI department (his Liver MRI was in the Mott Pediatric part of the hospital the other day) with Josiah getting spooked (it looks older & less kid friendly here) and saying that it looks like we’re going to the morgue (where we’ve never been but maybe he has in video games or shows?)
  • filling out the “abbreviated” pre-procedure forms (3 pages)–thankfully they don’t ask about All Organ Systems, like the pre-op paperwork, for that level of recall is really exhausting
  • Josiah wants to fill out his own forms (which is great)–I finish page one & give him page 2 and he gets stumped right out of the gate when descriptions of prior heart surgeries/devices are needed–sigh–I want to support his independence, but I know these things better, can write in an adult hand (his printing is large & grade-schoolish), and he’s already said he doesn’t want talking so wouldn’t appreciate the amount of verbiage needed to “coach” him here…I complete p 2 & he refuses p 3…
  • no problems in changing, getting a locker (I keep the key for him), nor getting an IV–I’m not allowed back with him (he’d requested me to accompany him at the Liver MRI) and he actually goes along with the staff without issue!
  • I remind the technician that he got dizzy when they moved him in and out of the other MRI machine & she says she can accommodate him there…since he didn’t complain of dizziness afterward it appeared like things went OK!
  • sitting in the waiting room working on a book (I finished), a sudoku puzzle, and a word search…then perusing a number of photo based magazines where I’m bombarded with guilt-trips of the leftist agenda ad nauseum–sigh…no napping…a TV blasts out of sight while trying to sleep & I recognize Chip & Joanna Gaine’s voices from the Fixer Upper TV show…but too tired to attempt to watch this
  • he’s done & we depart without issues & decide to swing by the “interfaith” chapel that’s just outside the elevator on our return trip to the 2nd floor
  • We are alone in the “chapel” so we search for any signs that Christianity is even one of the faiths that might be represented in that room…there’s no cross visible, but prominent Islamic paraphernalia, slightly reserved Judaism items, and eventually a “New Testament with Psalms” Josiah unearths under one of the seats
  • Josiah reads a Psalm from the lectern (we’re in full view of some security camera–yikes, does it have audio?), I sing a version of the 23rd Psalm aloud.  Josiah and I both pray aloud for many things/people “in Jesus’ name”.  Josiah begins singing “How Great Thou Art”–a song that always reminds me of my father & the first church of my childhood–solo (he asks me to Not join in) when a swarthy looking young man enters & sits adjacent to the Islamic prayer rug; J voluntarily stops singing & we decide to leave to give the other person privacy
  • Traversing 3 different buildings to get to the Family Resource Center, where we use the computers & partake of complementary snacks/drinks
  • strike up a conversation with Cameron & his mom about Cameron’s medical needs (brain tumor found 4/30, two surgeries, stroke, etc)–he’s wearing some type of helmet to cover his missing skull…I offer to post his prayer needs on my CarePages medical blog & they agree…we give pointers about living at the hospital etc.
  • J & I both work on both CarePages.com and on WordPress.com blog accounts and attend to some email business at adjacent computers
  • I decide to use one of the consult rooms to call my husband (I don’t have a cell phone) & they are now locked, a new development since my last usage
  • get a staff person to let me in and complimenting her on her new hairstyle leads to an in-depth discussion about her recent Cancer & Heart Attack scare.  We share various stories about medical issues, hospital employment (in my former life), and dealing with overwhelming emotions.  We go on a bit about Transplant issues, me from the family perspective & her from working as staff in an organ procurement organization.  She tells of a family that she turned down as a transplant donor because they didn’t want any of their son’s organs going to any N-words–Wow!
  • we’re interrupted by a volunteer & later an MSW co-worker so we never “finish” our conversation…are those discussions ever really done?
  • Quick phone call with my husband, who’s still at work
  • J & I wrap up computer work & head up to the 12th floor for Skyline Cafe, the Thursday evening complementary meal & music offering sponsored by Delta Airlines & managed by Bob (musician) & Byron (social worker)
  • We assist two different families with in-patient kids on IVs in the elevator
  • We enjoy nearly an hour of acoustic guitar & vocal music as we eat pizza, etc
  • after the event wraps up we speak with Bob & his wife Tracy about my husband’s band, The Lively Pelts, possibly participating musically sometime–I’d cleared this planned discussion with my husband previously–(Bob says Skyline happens Every Thursday of the year, except Thanksgiving)…
  • discover that Tracy & I met before as she’s actually the Pastor at the church kitty-corner from our own church–wow–small world (& I’d almost applied for a recent job opening there)…
  • Josiah tells some tales from transplant & beyond & several eyes tear up…
  • we finally head home during a rainstorm with just enough time to spare to take care of one errand before that business’ closing time; I get soaked to the skin…
  • I send Bob the promised email about the Pelts…and we await to see if God might open yet another door in our lives…

As you can see, even a “simple” day at the hospital can get pretty involved…and exhausting.  Josiah & I both did decently and had an overall good time, which was capped off by the blessing of Skyline Cafe, a pretty rare treat for us nowadays…

Well thanks for stopping by and sharing a bit of our experiences.  Blessings, Valerie

Image result for who heals you of all your diseases scripture

from a Bing.com image search for “who heals you of all your diseases scripture”

PS Please consider keeping Cameron & his family in your prayers as they travel a new special needs pathway…I’ve written more about their situation here if you’d like more details:

http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3856615

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from a Bing.com image search for “gently leads those with young scripture”

Father’s Day Wanderings…

Happy Father’s Day, Michael.  I love you!!!  Valerie

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My husband Michael Ellsworth Curren Rocks!

I’m so thankful for the heritage of faith!  My own father has been an incredible example of godly fatherhood for my entire life.  He has found the way to balance faith, fun, and fatherhood…and it’s been passed down to both his sons and his son-in-law, my husband, Michael.  What a tremendous legacy…his children rise up and call him blessed!

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image from a Bing.com image search for “quiver scripture”

My husband has experienced Father God as a literal father to himself, someone who grew up basically fatherless.  Although his parents were married when he was born, their marriage dissolved during his early elementary years and his mom moved him nearly halfway across the country surrounding that divorce.  He only saw his dad a couple more times before he died during my husband’s teen years.  He later had a step-father, who being a strong Christian, lead both Michael and his mother to the Lord!  This man has been gone now for nearly two decades, and was a thousand miles away during my husband’s own developing into a father years.

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image from a Bing.com image search for “fathers scripture quotes”

Michael is an amazing man of God, who has a near Abrahamic friendship style relationship with his Heavenly Father.  He has overcome the odds of familial alcoholism and serial divorce and lives his life as a testament to the power of Christ to break the chains both within and about us.  There are not enough words to convey the impact of seeing Michael persevere through the crucible years of Special Needs Parenting, and that is still the gift that still keeps on giving, though thankfully not with the same brutality as the early years!  We love our special son, but he has challenged us in many ways–certainly beyond our own abilities to endure apart from God’s grace & strength…

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image from a Bing.com image search for “quiver scripture”

My husband is such a blessing to me and to our four children…and also now to our new daughter-in-law.  I really can’t wait to see where the Lord takes us on this wild ride that is marriage and family life in the (hopefully) many years to come.

Happy Father’s Day 2017

25 Years of Marriage

23 Years of Parenting

1 month of In-Lawing

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Bing.com image search for “what a ride”

Below is a copy/paste from my niece’s Facebook page.  She is quoting a poem my brother Curtis wrote about our dad many years ago.  [Correction per my parents, see Comments below, this is actually a poem that Ashley wrote for my brother Curtis on the occasion of his birthday earlier–my mistake…]  These sentiments are so applicable to my husband, my father, my brothers, and presumably to my sons when they too are blessed with Fatherhood someday…having all had many examples of men doing Fatherhood God’s Way!  Enjoy…
Ashley Farasyn with Dawn Williams Stoddard.

Thank you for the gifts you’ve given me. The gifts of laughter and story-telling and articulation and poetry. Thank you for teaching me math is my friend and for being a rock and a firm foundation to stand on. Thank you for lifting me out of the water when I go under and gasp for air. Thank you for always knowing how to catch me even if I flail in the air and come down the wrong way. Thank you for being a dad who knows how to be right but also knows how to be wrong. Thank you for loving Jesus and bringing generational freedoms to your children and your household. Thank you for all your prayers and healing. Thank you for stepping into soberness so that I could follow. Thank you for speaking life into others and being sometimes the only bright part of someone’s day. I love that your main goal with whoever you come across is to make them see the love of Jesus and also pee their pants. I love how God made you. And I love that He put us together. And since you are not on FB, I will tag your wife because I know you use her phone in equal amounts. And because I can’t help it, I am recycling your birthday poem because it’s all so true. You are one of my favorites. ♡♤¤

“What does it mean,”
“What does it mean?” you say
To have a dad who has fun
and knows how to play?

It means there’s games, and smiles,
and laughing galore
And tears rolling down cheeks
and more, more, more, more!

The more games there are,
the more creative our minds.
You see, dads who have fun
know how to seek, hide, and find!

They like to think out-of-the-box
and do the impossible.
Dads who have fun
are down right unstoppable!

What can’t we do
if we can climb the shelves at the store;
And throw cans of spaghetti sauce
at dinosaurs on the floor?

How about walking through forrests
and crossing tree logs,
To find the buried treasure of pirates
filled with chocolate coins and pogs?

When you have a dad who has fun,
nothing is boring!
So there’s no time whatsoever
for sleeps, yawns, or snorings!

Games abound by the dozen
and so does the fun!
Have you ever turned off the radio
and at the top of your voice, sung?

Have you ever crossed your legs
because you’re laughing so hard you might pee?
I don’t want to say it was me that did it,
but okay, it was me, it was me!

Dads are the best!
(But the fun ones are better.)
Your cheeks and your pants
just might get a tad wetter!

Don’t underestimate
the power of fun!
Laughing is therapy,
I asked a doctor once.

When you laugh,
you gain confidence
which is the opposite of fear.
A dad who shows you to laugh,
shows you he cares.

My dad is funny
and boy, he sure is the man!
He’s my number one sitcom
and I’m his number one fan!

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Posting & Picture from my niece Ashley Stoddard Farasyn’s Facebook page, showing Zachary, daddy Curtis, and Ashley circa 1994

Here are a some special photos from my husband’s Facebook page: 
Family
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Michael & Valerie engaged, December 1991

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that was then, this is now…”It’s not the years, it’s the mileage” as Indiana Jones said…

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sons: Josiah, Brandon, & Nathaniel; husband Michael; & father Bill, circa 2011; at The Shack

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Michael & our daughter Clarissa hunting Michigan’s North Woods, circa 2014

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The pool where it all began…Valerie and Michael met at this pool in their then apartment complex, Sand Dollar, in Tulsa, Oklahoma in May of 1991. Val says that since they had no one in common, God introduced them. Returning to the scene of the crime they documented how things have changed over the ensuing years, Summer 2010.

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Michael and his mom’s artwork; the rest of us will meet her some day when we are all with the Lord…

and in honor of the familial ADHD tendencies…

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Michael’s Facebook caption for this one, “One of the dangers of being distracted by a squirrel!”

Rock!

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Binding Faith Band, the beginning of Michael’s Christian Rock Band Adventures!  Jason-rhythm guitar, Tim-vocals, Greg-lead guitar, Paul-drums, & Michael-bass

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rocking in his basement Man Cave before allowing our son(s) to live there instead…

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Rocking Rocktoberfest with his former band, Harken

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New Band, Lively Pelts: Marty-lead guitar & vocals, Roy-drums, & Michael-bass & backup vocals, at Blessing of the Bikers, Victory Biker Church, June 17, 2017

Faith Walk

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“Went to pick up pizza and got caught up in appreciating my Fathers handy work! Artist God.”

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Michael’s found the narrow way, and wouldn’t you know it’s in the North Woods of Michigan!  I’ve always said that Michigan is God’s Country…

Thoughts on “I Can’t Do This Special Needs Life”

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from Bing.com image search for “special needs life”

It’s always with a bit of fear & trepidation that I ever decide to engage the special needs arena more directly than daily life requires, especially when it’s mandatory (like IEP time).  Well, this short article came into my inbox and some of her thoughts below really resonated…

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes.  I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.”

from: http://www.keyministry.org/specialneedsparenting/2017/6/9/i-cant-do-this-special-needs-life

The bolded part in the above quotation is what got me back typing away here.  Through a series of seemingly random events I studied and graduated University with a Pre-Med Degree (BS, Bio-Medical Chemistry).  I did take the MCAT (Medical College Admissions Test) and did marginally well but just never applied to Medical School.  At that time I was getting burned out on an extreme science emphasis like my basically Chemistry Major/Biology Minor Degree had demanded; I needed a break.  Being pretty eclectic in my interests & “motivations” (if one can even say I have the latter!) I was just not really interested in then pursuing medicine right out of my undergraduate program; I ended up pursing Christian Counseling instead…

The ironic thing is that I partially made this decision because I “wanted to have a life” and thought the extensive studies and training involved in Med School would mean many years before I would get much reprieve or enjoyment out of living.  Amazingly, before a decade had passed, I too, like the mom above, was facing the most challenging of all patients, my own extremely complex special needs child, and truly my life would never be my own again…

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from a Bing.com image search for “sick child”

Frankly I don’t know how anyone copes with the challenges, upheavals, sorrows, rage, exhaustion, confusion, depression, isolation, and tediousness of it all without the Lord’s saving Grace & Peace!  These extensive trials have driven our family to the Foot of the Cross time & time again.  And even with His “Peace that passes understanding” there are many days when we just have to slog it out…& it ain’t pretty either!

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from a Bing.com image search for “comfort in suffering”

I still honestly don’t know what to do with all the “stuff” that has been crammed down into my soul with minimal if any real “processing” time or resolution.  It is difficult for me to make sense of some of those special needs experiences without some outlet for said processing–which is one of the reasons for the existence of this blog at all.

Only considering my “special” son’s particular needs, here’s some of what we’ve faced:

  • Pregnancy problems/IUGR (Intra-Uterine Growth Retardation AKA small for gestational age)
  • Prematurity, Very Low Birth Weight, 2# 6 oz (qualified for SSI in the hospital)
  • Failure to Thrive
  • Congestive Heart Failure
  • Complex structural birth defects
  • 2 1/2 months in the NICU (Neo Natal Intensive Care Unit)
  • Ambulance ride to a different hospital for Open-Heart Surgery
  • Living apart from my husband for 3 months during heavy season of stress
  • Inability to directly breastfeed my son due to his weakness, so nearly 3 months of pumping breastmilk for him to be gavage fed via a tube in his nose, or alternatively to feed his twin when we were apart because I was in the hospital with his brother around the clock…
  • Open heart surgery at 2 1/2 months & ~4 pounds; the night beforehand being the only time our entire immediate family was in one room together, as in I was preparing myself/us for the possibility that our son would die & that pre-op visit would be all the time that we ever had together as an intact family…
  • Urinary Tract Infection delaying hospital discharge, I discovered this
  • Relatively short time at “home”; Life threatening respiratory infection (RSV) leading to an across state ambulance ride and re-hospitalization, and the admission X-Ray revealing an unexplained broken rib so “formality” inquiries; he had a second RSV hospitalization when about a year old
  • Breathing Machine (Nebulizer) with meds & chest percussions
  • Seemingly endless vomiting with practically every feeding and/or dosage of meds
  • Various Proprioceptive & Vestibular interventions, brushing, joint compression, etc (mostly done by me)
  • Problems with hernias requiring near emergency surgery during the post-op phase from Heart Surgery
  • Visiting Nurses
  • Medicaid
  • WIC
  • County Health Departments
  • Numerous Medical Specialists with sometimes conflicting advice
  • In Home Therapy visits (PT, OT, Speech)
  • In Home Teaching, in three different cities
  • Preventive Care Services, support for a family in near crisis
  • Being written up in our local paper because of the uniqueness of our situation
  • Authorized coverage for respite child care so my husband & I could get a reprieve, but an inability to use this service because we couldn’t find anyone capable of handling Josiah’s needs and our other two or three kids…
  • Major behavioral & emotional problems
  • Balance Problems & Hearing Loss needing Myringotomy Ear Tubes surgically placed numerous times to help correct
  • Autism Spectrum issues, but not diagnosed early enough nor classic enough to get real help from the school system
  • Sound Field System in School
  • Neuropsychological Testing numerous times, virtually all data was ignored by school “professionals”
  • Unspecified Neurological Impairments
  • Balance, Equilibrium, Processing, & Sensory Challenges
  • Unusual Therapies; Sensory Integration Therapy, Music Therapy, Art Therapy, Social Skills Group, etc.
  • Early-On Program
  • Developmental Assessment Clinics
  • Virtually no “typical” twin experiences, nothing like what “the books” say
  • Complex staged birth defect surgeries
  • Positional Head Deformity, requiring an orthotic helmet to reshape the skull
  • Moving our residence across the state to be closer to adequate medical care (husband’s job change & our near year separation, except for weekends, during the entire selling/moving process)
  • Second Open Heart Surgery at about 4 1/2 years with statements implying that another heart surgery would be likely within a decade (though a 3rd surgery in this domain still pends)
  • High Blood Pressure, Blood Pressure Monitoring Machine, spotty compliance
  • Numerous Medications over the years
  • Social isolation for our son in particular, but our family as well, due to the complex challenges & lack of awareness on other people’s parts
  • Years of car rides, mornings, announcements of plans changing, etc that resulted in ceaseless screaming, hitting, kicking, etc…=familial upheaval
  • Years of deliberate “button pushing” of all family members, being a deliberate atomic bomb within the family=massive stress
  • Lifelong Pediatric Cardiology care
  • Lifelong Pediatric Urology care
  • Massive battles with Special Education after having positive Special Ed Pre-School experiences
  • Only one month in “real school” with his twin brother
  • Having to “repeat” a year of Special Ed Pre-school due to educational negligence, incompetence, &/or indifference & my own weaknesses in entering the fray
  • Severe Learning Disability in Math, misinterpreted as global delay
  • Tutoring
  • Being told for years we needed Advocacy help, but rarely finding any available and/or affordable
  • Community Mental Health, home & center-based care
  • Insurance challenges in getting needed services covered/provided
  • Respite Care, both in home and center based
  • Chronic Bedwetting, well into the teen years
  • Multiple Sleep Disorders requiring CPAP usage
  • Congenital Double Vision, eventually “corrected” surgically
  • Student Aides/Para-Professional involvement only after major battles with Special Ed even though doctors insisted this was vital at the outset of regular schooling
  • Massive Educational & Disability Discrimination…any real recourse here???
  • Learning about free advocacy training and materials but when pursuing them discovering the programs were cut; same now in relation to job training issues
  • Having a Brain Tumor and Liver Masses discovered at virtually the same time
  • Getting Cancer evaluations
  • Human Growth Hormone deficiencies, but no real treatment because of other complicating issues
  • Being accused by school staff of inappropriate behavior that he didn’t do, and not allowing a parent to be present to assist him in processing the situation
  • Brain Tumor removal through the nasal passage, so no visible scarring!
  • Ultimately needing & getting a whole Liver Transplant
  • Lifelong Liver Transplant Clinic care
  • ADHD, Depression, Anxiety, OCD (Obsessive Compulsive Disorder)
  • Unexplained dizzy spells, EEGs don’t reveal reasons
  • “Hypoglycemia”
  • Emergency Room Runs for injuries & once for an environmental breathing issue that I thought meant my son would die in my arms before we reached the hospital
  • Pervert encounters in the park as a child and at school as an adolescent, with major emotional fallout
  • Spiritual battles that periodically resurface & blindside & overwhelm him
  • Continuing to help him navigate the world, including processing why even though he and his twin brother are a minute apart in birth times their life experiences are worlds apart
Image result for comfort in suffering

from a Bing.com image search for “comfort in suffering”

Well, my oldest son has mentioned on a number of occasions how I “never use my education”, since I’m not currently in the workforce.  It has honestly taken every aspect of what I’ve learned formally, inter-personally, spiritually, and experientially to navigate the extremely treacherous waters that Special Needs Parenting has led us through.  Some doctors have kindly indicated that I have a virtual medical degree by way of this personal parenting experience.  Whatever I have become, much of it is now attributable to being a Special Needs Mom.  It has become a burden, a badge of honor/courage, and ultimately a blessing.  In God’s Kingdom He brings Beauty for Ashes, Light from Darkness, and Hope beyond Despair!

Though I didn’t ask for this calling, as much as it lies within me, I try not to shirk the attendant responsibilities.  We’ve spoken as a family on these matters a number of times and we all agree we wouldn’t change things, even if we could.  As my eldest son has said, “Josiah is the heart of our family!”  So we are Challenged, Confused, Cracked Up, and Comforted by his uniqueness.  He still sees the Lord with “unveiled face”, being so pure of heart.  The rest of us might be relatively normal by this world’s standards, but Josiah stands tallest and purest in the Kingdom of God!  It is all of our privileges to walk along side of him in this crazy, painful, wonderful life…

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Image from a Bing.com image search for “beauty for ashes”

 

 

Rocking Detroit for Jesus!

My husband’s band, Harken, has a couple of music videos posted on YouTube, but they were hard to find via the search engine so I’m posting them below for easy access.  Both videos were recorded at the same event, Hosanna Palooza, an outdoor Christian music and craft festival that apparently occurs the same day as the Telegraph Dream Cruise (we ate at a restaurant after the concert along the Cruise route & had awesome views of some of the Motor City’s great Classic Cars that evening…what a treat!)

image from this page: http://jobbiecrew.com/6th-annual-tele-car-cruise/

The day this concert happened temps got up over 100 degrees Fahrenheit and the guys were at the music festival for several hours before playing.  It was truly by God’s grace that none of us suffered any heat exhaustion.  This was a special day for our family for it was the first time All of our kids were able to see their dad’s band play with their new lead singer.  This was such a God honoring event and a privilege to participate as a support to our family’s version of a “Motor City Mad Man”–my husband, Michael, the bass player.

He is an amazing man who has lived a life of sacrificial love before our family, friends, and colleagues.  God has gifted him in so many ways yet he remains humble, joyful, and playful as he lives out his faith daily in the crucible that Special Needs Parenting (& Marriage) can be.  Thank you, Lord, for blessing me with a Godly man to love, laugh with, and live this crazy, amazing life alongside!  “A three-strand cord is not easily broken”– that would be a husband, wife, & the Lord in the center of their marriage!

VOICE  Ecclesiastes 4:12
And if one person is vulnerable to attack, two can drive the attacker away. As the saying goes, “A rope made of three strands is not quickly broken.” Biblegateway.com

Image result for enjoy life scripture ecclesiastes 9:9

(the above image comes from a Google Images search for “Ecclesiastes 9:9)

 

 

The info is from the given youtube pages–note the chorus for “Your Will” is taken directly from scripture, a personal favorite aspect of many Christian songs of impact!

Psalm 40:8

New International Version (NIV)

I desire to do your will, my God;
    your law is within my heart.”

from BibleGateway.com

Published on Jul 24, 2016

Our original song Your Will recorded at Hosanna Palooza on July 23, 2016 in Redford, Michigan.

Published on Jul 23, 2016

Our original song Dose Of The Ghost recorded at Hosanna Palooza, July 23, 2016 in Redford, Michigan.

Finally, here is a link to their ReverbNation page with more band info, & audio for 6 songs.

Harken rocks Hosanna Palooza, July 23, 2016

this picture is from the band’s Facebook page here:

As an extra treat, here is the “tribute page” of his previous band, Binding Faith where their whole CD can be heard and there is video footage of another outdoor Michigan festival where this band was blessed to play, filmed by their drummer’s son…

“Chaoticness!”

Harken Bass Player, Michael Curren, at Rocktoberfest 2013

from the band’s Facebook page here:

Michael Curren & Valerie Stoddard engaged, Christmas 1991…What a Gift!

Photo from my husband’s Facebook page, our informal engagement pic from December 1991…“it’s not the years, it’s the mileage,” Indiana Jones.  Here’s what Michael said there on Facebook about this picture, approaching our 20th Anniversary:

I love her twice as much as the day I met her, and I would do it all again. Bring on the next 20 years!

 

Curren family at Skyline Cafe, U of M Hospital, Ann Arbor, Michigan, November 2014              (left to right) Nathaniel, Brandon, Clarissa, Michael, Valerie, & Josiah

Our family 2 years ago at the University of Michigan Mott Children’s Hospital, “Skyline Cafe”, following a day of genetic testing to attempt to pinpoint diagnoses our special son, Josiah (foreground, right) might have…usually just J & I do the hospital runs…

Well, there’s lots of personal info in this posting so I’m going to be checking back here to review pictures & sounds whenever I might need just this kind of a pick-me-up.

Blessings to All,

Valerie

Commenting on “Autism it’s Different in Girls” (& so is ADHD)

looking for images with this post…here’s a great Pinterest site

I recently read an intriguing blog post by someone who has autism but chooses to remain Anonymous…hopefully there will be many other nuggets to mine in her blog as well as the interesting comments sections filled with feedback & unique perspectives.

I had wanted (in my comments below) to go into the girls aspect of Autism and mention how there may be a continuum between Autism and ADHD…I’d read a book a few years back that laid out a good scientific case for this insight.  Later, while doing massive amounts of research for Josiah’s special education needs/case I read a number of things that talked about ADHD and how it presents in females…and in particular how there are some mothers of kids with ADHD (and/or autism?) who were never diagnosed themselves but see so many of their “issues” reflected in their kids struggle…apparently to the point that this is a “thing” that gets some degree of recognition in certain circles.

(ironically, while looking for images found these “circles” supporting my views!)

Autism: Different, Not Less:

(from the above Pinterest board…and almost every item ascribed to my son)

Just a few of the many disorders associated with ADHD. Many have similar symptoms and impairments. Getting the correct diagnosis is further confused by the high morbidity rates associated with ADHD. (View only)                                                                                                                                                      More:

the image above is from this pinterest page

I’ve meant to look back on this topic for my own “edification” but have been mightily depleted by the Special Ed case and fallout that it just hasn’t happened yet.  In our family of 6, 4 have officially been diagnosed with ADHD, & the two that haven’t (myself and Brandon, Josiah’s twin brother) exhibit quite a few of the ADHD traits (but perhaps not enough to rise to the clinical level of diagnosis…but then again who’s actually asking to be “officially” labeled)…so we think we probably both have some part of ADHD, at a minimum.  So if the continuum theory holds water, could it be that people that have ADHD are on the (potentially) mild end of the Autism Spectrum?

It’s so hard to really say and it may in large part depend on who you ask and what their personal practice emphasis (if you only have a hammer then everything looks like a nail and all!) might be…It is supported in research, I believe, that many times the parents of kids on the Spectrum have many of those traits themselves.  Certainly when “we” were growing up awareness of Autism “Spectrum” issues was nowhere near the level it is at now.  Also, if it is shown that there is any level of a genetic component to Autism and/or ADHD it would stand to reason that these things would run in families to some degree.

In my own family, from a retrospective perspective there could be arguments made that both my parents have possessed some traits of ADHD, especially when younger.  At least one of my brothers had many such traits when young and his son was also officially diagnosed with ADHD.  My other brother has a couple of kids that seem to have a lot of such traits too.  My husband wasn’t diagnosed with ADHD until adulthood, but it surely negatively impacted his academic trajectory when younger, even though he has learned to “compensate” for the ADHD issues as an adult, as have most of our kids.

Most everyone in my present family has some degree of sensory issue and we all possess varying degrees of emotional vulnerability, but thankfully this trait is at least somewhat intermittent in most of us!  Could these also be evidence of the “Spectrum” Continuum?

The author of the Autism in Girls post speculates on how important it is to find out what is going on with you and to get that diagnostic label (paraphrasing without re-reading her actual words…so I could already be distorting inadvertently her view) and therefore enable some degree of an “Autistic Identity”.  This apparently resonates with a lot of her readers, at least those who have posted comments.  It’s possible that she  draws in these more “anonymously autistic” people by the very nature of the type of blog she writes, as in people who are on the Spectrum, but can “fake it” sufficiently for the outside world to not know they are autistic…

It’s hard for me to relate to the “need” to find an identity, like in Autism.  And frankly I really do not “get” that aspect of our current culture that seems to think one has to discover a “role model” to emulate in order to aspire to things that no one “like me” has ever done before.  This will likely be controversial, and even offensive to some (sorry)–but Obama being “President” of the US should not really make it any more of less easy for any other “black” person to be the President…if the job was about the merits of the individual aspiring to the position (and who could argue that this election year!) and not about someone’s “identity”…and if he had actually obtained such a job based on his own merits (which he manifestly did Not do based on his abysmally thin resume)–no “white” man with his background, (lack of) accomplishments, known dangerous associates, and incredibly thin skin would have ever gotten near to the place of getting his finger on “the button”…but I digress…

Anyway, I don’t fully get why so many people feel the need to find such a label and thereby get some type of identity by identifying with a group.  Obviously, for anyone who knows me very well, I have spent much of my life in isolation, going against the flow, and refusing to join into whatever “group” (like Groucho Marx I wouldn’t be a member of any group that would have me!)…so the herd mentality is far from appealing to me personally.

I do, however, take a measure of identity from my personal faith…as in I’ve considered myself a strong Christian for the bulk of my life and that remains my primary identity…but I am much more likely to think of myself as a person (even as an intellect) than as a woman, wife, mother, daughter, sister, friend, employee, neighbor, parishioner, or any other ready label, per se…

I will acknowledge, however, when it come to my son with special needs, Josiah, when he was first given the PDD-NOS (atypical autism) label it lead to huge sighs of relief for myself and my husband.  That was because we were dealing with so many issues back then that Autism at least made a degree of sense and it was able to take a number of his significant behavioral anomalies under its umbrella.  It is also true now that Josiah appears to think of himself as “autistic” and he uses that label, perhaps as a shorthand code, as a blanket explanation for various aspects of his quirkiness, at least that’s how it appears to me (I am in no way pretending to speak For him)…

I have spent so much of my life seemingly on the outside of whatever the group thinks it is or what it does that it’s actually harder for me to acquiesce to the “herd mentality”, even in a church setting where people are looking to foster “unity”.  This may be a holdover of the “rugged individualism” of the traditional American ideal that I do internalize to some degree, my own individual personality & intellectual makeup that always goes into suspect analysis mode whenever everyone around me jumps on some bandwagon (or follows some pied piper toward yet another cliff), or even can be an outgrowth of having lived virtually my entire life “counter culture” (especially now that Constitutionally Conservative Christian is virtually a pariah position in this formerly free land of ours).  Perhaps being an “outsider” is enough of an identity that it’s not necessary for me personally to seek other labeling for myself.

As far as role models go, though, as a Christian the Only real role model would be Jesus Christ…and that represents a role that none of us could ever live up to!

Philippians 3:14King James Version (KJV)

14 I press toward the mark for the prize of the high calling of God in Christ Jesus.

King James Version (KJV)Public Domain

above scripture from BibleGateway.com

(image from searching Google images for the scripture…may have been a youtube screen grab..but here is the link for the image…well it wouldn’t paste the link just another image)

So, thanks for listening in…and check out the original post below that my comment following pertains to…and let’s support those amongst us who are learning to speak up and speak out and encourage them to share their hearts with all who might choose to listen and care and handle our human frailties with tenderness and truth…

Blessings,

Valerie

Autism—It’s Different in Girls

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My perspective on this is a bit different in that I am a Parent of someone on the Spectrum who was diagnosed as “PDD-NOS” (Pervasive Developmental Disorder Not Otherwise Specified, aka “atypical autism”) and we got such a “label” for our son when he was still a preschooler. He also had many other issues that were primarily medical in nature and during key points of his life these medical needs really took preeminence (2 open heart surgeries, brain tumor, liver transplant, etc).

Our seemingly biggest challenge overall was in getting the educational system to even pretend to address his Actual Needs. We had years of frustration where they absolutely refused to acknowledge his autism diagnosis (in fact they never officially Did recognize that he was on the Spectrum, though his last Special Ed Case Manager did admit the obviousness of his Autism in private conversations with me). The school system was extremely derelict in its legally mandated duties to my son and we dealt with significant frustrations in this arena for the duration of his public schooling, K-12 (ironically special ed preschool did a Great Job with him, so our frustration was mightily increased by the torments that followed).

One extremely important aspect of special education law (in the US) involves Transition Planning & Services that are required to begin no later than the year the student is to turn 16. These services are to be tailored to the individual needs of the student and should be designed to facilitate their Transition from public school to Independent Living, Post-Secondary Education, and Employment. The ideals of this approach are laid out in detail in US law (IDEA, the Individuals with Disabilities Education Act & its later “improvement”), but our experience, and likely that of many others, reveals how far short of the legal mandates/standard things are…let alone compared to what should be “ideal” (as in identifying and addressing All areas of known or suspected disability, regardless of diagnostic “labeling”)…My son was “graduated” from high school not even possessing 3rd grade math skills and his now denied Michigan’s through age 26 special education because he “graduated”. I have a cousin with two autistic sons in Arkansas and her older son also “graduated” but struggled so significantly in college that she got him tested and discovered that his reading was only at grade school level even though he had a “diploma”. I don’t know how much she fought for him educationally but I know to what incredible lengths I went to over the years all to virtually no avail…

My son’s Primary Care Doctor, who has a practice devoted to complex special needs kids & families, including a significant cohort on the Autism Spectrum shared a chilling perspective. She said that the “high-functioning” autistic kids, like my son is now (he’s been significantly lower functioning when younger) are not coming close to having their needs met here in Michigan. If they are high enough functioning to be included in regular academic settings then often their “independent living” or functional “life skills” needs often go unaddressed. Once they get out of high school they discover that “the adult services industry” is woefully inadequately prepared to address so many of their needs. Also, because the many systems are so poorly managed and financially irresponsible and/or overburdened many times kids with significant needs do not come close to getting their needs met at any point…

Given that the “higher functioning” autistic kids are probably the ones most likely to be able to “handle it” to some degree in the regular/normal/neuro-typical world it would certainly seem in society’s best interest to help give them the tools and support necessary to foster their highest level of independence while young and thereby ensure a likely increasing percentage of such kids will grow into (nearly) independent adults. This would mean the possibility of significant resource allocation during the earlier years developmentally but should hopefully result in many more of these kids not needing nearly so much public support as they likely would otherwise had such intervention not have been provided. The arguments for early and intensive intervention for Autistic Spectrum kids have surely now made that perspective widely accepted and hopefully there has been sufficient time for data gathering to bolster this view “scientifically”.

In our family’s case, we spent many years and uncountable mental, emotional, spiritual, and financial capital attempting to get our local school system to DO THEIR LEGALLY MANDATED JOB…and these requests were based on data, diagnoses, and clear evidence of myriad needs (many in keeping with autism spectrum issues)…however the real bottom line was that my son got virtually Only what the school felt like offering whether it directly addressed his needs or not. And since they absolutely refused to acknowledge or address his Autism Spectrum issues (which were known as early as 2000 and had written behavioral pediatrician’s orders) he was significantly negatively impacted by not having received these necessary (and technically IDEA mandated) services.

The cost to our family (we had four kids within four years) was/is truly incalculable. I’m not “blaming” the school for all the issues, but had they done their job there are so many things that would have gone differently. For instance my son required significant therapeutic intervention, especially when he was younger, so we would take him to PT (Physical Therapy), OT (Occupational Therapy), SLT (Speech & Language Therapy), Sensory Integration Therapy, Music Therapy (which I tried for years to get the school to provide to assist in re-mediating his Severe Learning Disability in Math), Art Therapy, Psychological Therapy, Visual Therapy, etc…We spent so much of what should have been family free time shuffling him to and from these visits and when I finally stepped back from it one year due to personal overload and burnout basically watched him deteriorate before my eyes. He should have had year round intensive intervention provided by the school but they absolutely refused to analyze or address his very real needs and declines. I actually ended up dragging all my kids to random Vacation Bible Schools over a few consecutive summers just to try to give my Special Needs Son some degree of educational structure (and all the other kids really came to resent this as they got to attend these nearby VBS’s along with their brother). There were a few years when being out of school got so upsetting for my son that he lost his toileting skills…but they immediately returned when school began. This level of distress did not concern school staff at all but it caused significant suffering for my son…and the rest of us.

Well, this obviously went on Way Longer than I intended it to. I’m so glad you are putting your voice out there and speaking up on behalf of yourself and others who may not choose to speak but whose experiences and perspectives resonate with yours. My son has come such a long way from those virtually non-verbal and overwhelming sensory distress days to having discovered himself and continuing to refine his own unique voice. Although “movie quoting” and verbatim dialogue still punctuate much of his communication he can at least now speak as himself so much more freely now than ever before.

Loving someone with autism and living with someone on the Spectrum can certainly be a challenge (and I won’t minimize the major hardships of our personal journey historically &/or presently) but it also presents a tremendous amount of joy as well. Our “special” son is really the heart of our family in so many ways. He is a constant source of entertainment and his humor is so random that it continues to surprise and amaze us all, which is a huge blessing and counterpoint to the stressors. However he also represents a personal bridge between this world and the Kingdom of God (he is a very strong & outspoken Christian)…he has seen the Face of God while undergoing his Liver Transplant and (similarly to his dad) can have a nearly conversational relationship with the Lord. I really believe that his “autism” facilitates this transparency. Just as he doesn’t know how to put a “mask” on in his human relationships, he is virtually incapable of having a barrier between himself and God. Witnessing his Christian Walk is both humbling & encouraging for those who live with him. If he struggles to talk with us earthlings there is no communication barrier with his Heavenly Father…and that is a gift that no “labeling” nor lack of supports could ever diminish!

Blessings, thanks for all you shared, and thanks for letting me “wax eloquent” too here.

Best Regards, Valerie Curren

PS, I wrote more thoughts on your article at my blog here…I’d love to hear back from you on that, if you might be interested…

https://specialconnections.wordpress.com/2016/10/11/commenting-on-autism-its-different-in-girls-so-is-adhd/

this provocative image could lead us to consider these topics further…hmm; from:

http://theemergencesite.com/AutismSpectrumMenu.html

Image result for autism adhd

Special Needs & Church

I just read the post at the below site about the challenges one family faced surrounding church attendance…that seemed to be generated, in particular, by one church staff person being inflexible and unaccepting of their child’s unique quirkiness…

http://supportforspecialneeds.com/2016/02/10/when-church-special-needs-do-no-mix/  “…we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that …We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.”

I agree with the exhaustion statement above .  Families facing complex special needs scenarios can be overwhelmed and even burned out because of the day-in and day-out battles they face on multiple fronts.  Church should (theoretically) be a place where we can go and be accepted “warts and all” and where our children can be especially embraced in spite of, or even because of, their differences.

But, oftentimes church can be a battleground.  There are a couple of posts at SpecialNeedsParenting.net that outline a pretty ideal scenario of love and acceptance of a very unique autistic young man in a church.  Please see this story at these two links:  http://specialneedsparenting.net/autism-church/  http://specialneedsparenting.net/autism-church-its-a-good-thing-part-ii/

Our family’s experience has been a bit more uneven than this.  When our son with special needs was born we lived in Northern Michigan, about 3 1/2 hours North of the birth hospital.  At that time I was staying with my parents in Metro Detroit with our just 2 year old son after having seen a high risk pregnancy doctor and being told of my twin pregnancy “we’ve got to get the little guy out before he dies” on a Friday, and being scheduled for a premature delivery on the Monday following.  Both twins were needing to stay in the NICU before coming home.  The basically “normal” baby (Brandon) came “home” (to my parents’ home) after 10 days in the NICU, but Josiah remained there for about 2 months before being transferred to the University of Michigan Hospital for Open Heart surgery.

My husband and I had been quite involved in our Northern Michigan church before becoming parents.  We had been the youth leaders/pastors for a period of time and also both very active in the worship ministry.  When it became known that Josiah would be having heart surgery both pastors traveled South to visit with him (and me) in his birth hospital.  It was a fairly awkward visit as the senior pastor was visibly uncomfortable in the presence of this very small (about 4 pounds then, having been 2# 6oz at birth, a condition called IUGR–Intra-Uterine Growth Retardation, very small for gestational age) and sickly premature infant.  They did ask how they could help our family and offered to stay with us at U of M during Josiah’s upcoming heart surgery, but I did not feel “safe” in their presence so declined this “service”.  I suggested that they could have some families in the church either provide meals for my husband, or invite him over for a meal as he was living alone (in order to work) and coming downstate to be with his family each weekend.  This resulted in one dinner invitation for my husband during that extended time of extreme stress and isolation.

Years later we ended up discussing that early time and how uncomfortable we were with how the senior pastor, in particular, handled us and our situation.  There was something about things that never really sat right, though it was hard to pinpoint.  Our friends had also been attending our church during that time and were quite close with my husband in particular (he and our oldest son had both participated in their wedding).  They provided some needed perspective about how our “heart surgery baby” was being handled by our then pastor at that time.  According to them he would brag about the small sick baby from his congregation, kind of like a feather in his cap about how he/the church were doing so much to “meet our needs”.  Apart from that hospital visit (which was a significant drive and Not requested by us) and that one meal for my husband there was nothing done for us by our church…including during multiple surgeries and intensive home interventions from government program workers for about the next two years before we left the area.  I forgot, the Senior Pastor did visit me and the boys in our home at one point, I’m not sure when, and asked what I needed.  When I said that I could really use a friend he exclaimed (in seeming outrage) “I can’t get you friends!”, which wasn’t what I was actually saying.  Needless to say, talking to pastors about “issues” has never been very high on my priority list (and perhaps I’m too picky in this arena given my background in Christian Counseling)…

In the early days after the twins’ birth, when we were finally all back in our own home I heard a very moving story on the local Christian Radio Station.  There was a family that had given birth to a very medically fragile child and they had been surrounded by love and support from their natural and local church family.  This involvement rose to the level of round the clock shifts to provide extra assistance during the early weeks, and perhaps even months, of intensive neediness.  What was portrayed seemed so ideal and so far apart from our own experience that I was very saddened at that time by how unsupported we ended up feeling from our local church family (our natural family being hundreds of miles away and helping us with housing/babysitting during medically based visits).

Because of our son’s complex medical needs, which were all being treated and followed at U of M, a good 3 hours South of our then home, we began to explore the possibility of moving closer to this needed ongoing medical care.  Ultimately my husband went through a job change that allowed him to work downstate and live in my parents’ home for about a year, commuting to our home for the weekends, while I stayed North with our three sons so that we could sell our home ourselves (For Sale By Owner).  The boys and I would head South with their dad for any weeks where Josiah had medical appointments and return home the following weekend.  This situation was extremely stressful for all involved and for the most part we had no support from our local church.  I lived in extreme isolation during the weekdays, rarely leaving the house because of Josiah’s fragility and risk of infection, etc.  In fact I was shocked to find out that the woman I considered my closest friend from that church had been attending a weekly bible study a few houses from my own, but she had never stopped in to see me or the kids nor to check on why we attended church so sporadically, if at all.  That lack of attendance was due to the fact that Josiah contracted life-threatening RSV (Respiratory Synsichial Virus) and required lengthy hospitalizations for it twice in the first year of life–basically taking him out in public was risking his life.

When we finally accomplished moving the entire family downstate and got situated in our “new” home, we began searching for another church home.  As the twins were now toddlers (2), our oldest son 4, and our daughter an infant this was an extremely challenging process.  If we found a church that had sufficient nursery capacity they rarely, if ever, were able to handle the magnitude of Josiah’s behavioral or emotional needs for the duration of a worship service and either I or my husband would need to intervene with him, sometimes multiple times in one service (this was before we knew about “autism”, but even after such a diagnosis we had minimal autism treatment so it was more just an “ah ha” explanation for us about what was going on with him).  This really meant very sporadic church attendance overall as it was very difficult to “get anything” out of a service being so distracted by Josiah’s needs.  The magnitude of those needs was also a major reason why we sought the support and sustenance of a local church “family”, as a way to cope with the massive pressures of the special needs family’s life.

It was a number of years before we began attending our present church and we ultimately went there because it had a bit of a “comfortable old shoe” component to its ambiance for us.  During Clarissa’s infancy I had attended a MOPS (Mothers of Preschoolers) program at that particular church and felt that it had a pretty welcoming atmosphere.  Because of that positive MOPS experience, and because the church was pretty local and seemed relatively welcoming we eventually began attending more and more frequently.

Since our children were then mostly in their elementary years we were no longer battling the nursery situation.  Also, this church has a fairly limited “Sunday School” type programming, so we often just kept Josiah with us during the service in order to minimize some of the upheaval.  Josiah has always had a true worshiper’s heart for the Lord!  This means that either in church or during times of spiritual meaningfulness (family devotions and/or communion, etc.) he was more attentive and/or more behaviorally appropriate than he might otherwise typically have been.  That meant that at least sometimes he was appropriate to attend the kid’s programming, and having him included in some musical kids productions was a definite blessing.

Even though our current church home is relatively “special” friendly there are still glaring times of insensitivity that can be on display.  A couple years back our daughter was nearly moved to tears while at a youth event when she observed how her special brother was not at all appropriately included in a physical activity.  His processing challenges and  poor coordination meant that he was rather bowled over and disregarded during a sporting event.  Clarissa was very sad that the attending leaders were either unaware or unconcerned about how Josiah (and his sister) was being hurt by not being appropriately accommodated.  It would be great if either of them would have been assertive enough to speak up and seek help during such difficult experiences, but that is unlikely to happen.  That means that people in leadership need to develop increased observational skills and sensitivity and perhaps creativity in how they reach out to people and families that are “different” and who may need extra help, patience, or understanding…

Being able to reach out and embrace kids/adults with special needs and their families really should become a primary mission of virtually any local church.  The uniqueness of the needs represented would mean that staff and parishioners would need to be especially sensitive to where a given family was in multiple domains.  There could be great opportunities to reach out in service to such families who often face more than their “fair share” of crises and upheavals.  Having a ministry targeting special needs families could mean a much more vibrant style of community outreach and Christian witness.  The love and compassion, gentleness and patience, joy and peace, kindness and self-control that Should accompany the Christian life would be the ideal characteristics for people reaching out to special families to possess.  Wouldn’t it be wonderful if the Lord would lay such a burden on the hearts of so many in ministry?

Until such a time as that ideal scenario presents itself, those of us who know the Lord need to allow Him to move in and through us in developing eyes, ears, and hearts of compassion toward one another…and especially to people and families that are often broken and hurting.  And if you come from a special needs family it is almost certain that you bear burdens and wounds and need the love and tender mercy of the Lord poured out into your life.  The author referenced at the beginning of this post took a long hiatus from church and didn’t really raise her kids much in the faith.  Although she herself is attempting a return to church now, it is unclear what spiritual relationship her kids have–and those losses are at least partially attributable to an incredibly insensitive church leader who by her demeanor may have inflicted permanent damage on a vulnerable family…How Tragic!

May the Lord give His wisdom to His people that they/we as individuals and as local church bodies may open their/our eyes to the many needs around them/us represented by special needs families.  May they/we choose to see and to give of themselves/ourselves in time, prayer, emotional support, or tangible means of assistance and so reach out to so many of the vulnerable, lonely, hurting, and fragile within our communities.  Consider the Randy Stonehill song () below which beautifully portrays the need for each of us to be Christ’s hands and feet to a hurting world…Blessings to All, Valerie

RANDY STONEHILL
Who Will Save The Children Lyrics

Cry for all the innocent ones
Born into a world that’s lost its heart
For those who never learn to dream
Because their hope is crushed before it can start
And we shake our fists at the air
And say “If God is love, how can this be fair?”

But we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

We count our blessings one by one
Yet we have forgotten how to give
It seems that we don’t want to face
All the hungry and homeless who struggle to live
But heaven is watching tonight
Tugging at our hearts to do what’s right

And we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

As we observe then through our T.V. screens
They seem so distant and unreal
But they bleed like we bleed
And they feel what we feel

Oh, save the children
Save the children
Save the children

Now we decide that nothing can change
And throw up our hands in numb despair
And we lose a piece of our souls
By teaching ourselves just how not to care
But Christ would have gone to the cross
Just to save one child from being lost

And we are his hands, we are his voice
We are the ones who must make the choice
And it must be now
There’s no time to waste
it must be you
No one can take your place
Can’t you see that only we
Can save the children
Save the children
Save the children
Please, save the children
Will save the children?
Who will save the children?

Lyrics taken from:   http://www.elyrics.net/read/r/randy-stonehill-lyrics/who-will-save-the-children-lyrics.html