Tag Archive | Michigan

Rooted

Toodling around today at Word Press various other bloggers’ postings have loosely inspired these thoughts on being rooted…At our Memorial Day Weekend trek to/from the family Cottage in Gaylord, Michigan my husband & I collected a number of plants from the property to transplant to our own yard in Metro Detroit.  We actually left a few plants in Gaylord accidentally & they were kindly transported South by my parents later!

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Bing.com image search for “fragrance of life scripture”

Previously we had transplanted a couple of Lilac “bushes” and they are doing really well in our yard.  Those lilacs were individual woody stalks, possibly decades old, that had held on in the harsh climate and poor sandy soil conditions of Northern Michigan and now flourish as expansive bushes in our backyard.  In fact, our newly married son wants to take a transplant from our transplant(s) so that he & his wife can have some familial lilacs in their yard too.  These transplanted lilacs are very special to me because they come from my grandparents’ property and remind me of them, and their love, whenever I look at the bushes or smell that amazing lilac smell.  Also while growing up there were a few lilac bushes outside my bedroom windows and that heady fragrance always takes me back to those carefree days just a bit…

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From a Bing.com image search for lilacs

For years I’ve wanted to get further lilac transplants from my great-grandparents’ property that’s just a few blocks away from The Cottage.  The Cottage flowers are a light purple, aka Lilac!, color, but some of the lilacs from my great-grandma’s garden are white & some of a darker purple, or so I thought.  If we don’t do the lilac gathering during the Memorial Day trip we have to wait another year to confirm the location and/or color of any potential transplants, and this concept minus action has occurred many times.

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from a Bing.com image search for “cottage turret”…this is about the right size as the historical family cottage…

This year we encountered the latest owners of one of my great-grandparents’ cottages, the one with a turret that is near the railroad tracks.  We had a lovely chat with them, were able to view the recently renovated & gorgeous interior of that cottage, and get permission to get some of my great-grandma’s lilacs!  We ended up digging up a couple smallish single stalks from the white bush and they are definitely taking root in our flower beds!

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From a Bing.com image search for lilacs

We also got to see some photos of their cottage as it previously existed as a Texaco gas station.  According to the new owners this little gem of a building, one storey with an interesting octagonal turret, started its life in Detroit.  They showed us a photo of the alleged first cottage owner but he did Not appear to be my great-grandfather (Rowland Edward Thompson).  We shared what tales we could recall about the gas station cottage with my Dad & Aunt (they both spent Every Summer of their respective childhoods at the Gaylord Cottage) to see if the tales lined up with our family lore.  According to my Aunt Pat, Patricia Kay Stoddard Armstrong Ziemba, she was actually there when my great-grandmother, Florabelle Mansell Thompson, negotiated a purchase price and bought the gas station cottage.  Pat swears the gas station was in Gaylord, and she remembers where it had been located and observed it being moved to its present location.  Mysteries here…

 

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From a Bing.com image search for lilacs

Well there weren’t appropriate Dark Purple lilacs at the great-grandparents’ cottage site so we searched further afield.  There had been an amazing bush in a neighborhood flowerbed near where our Gaylord home was located, but we couldn’t find it on this trip.  We did, however, discover an even larger Deep Rich Purple lilac bush near an intersection in town, so we can easily recall its location.  Now we just need to track down the property owner to get permission to dig up a couple of new starts…Can’t wait!

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from a Bing.com search for “myrtle lily-of-the-valley”

We also took several starts of myrtle, lily-of-the-valley, forget-me-nots, and some purple “weeds” that can happily grow in our grass to help fill in a bare patch in our backyard under a spreading maple tree.  There are also some long leaved plants interspersed with some lily-of-the-valley plants to fill in some of the barrenness between our trees between the sidewalk & the street.  Myrtle & Lily-of-the-Valley grow along the house & driveway in my parents’ yard (the home I grew up in) and we had already transplanted some Myrtle to our front flower bed a few years back and it has filled in things beautifully.  These two species seem to spread easily so will need some attention to keep them in check, but honestly I love both of these flowers so much, and they remind me of my childhood home & the Cottage so much that the maintenance is worth it!

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from a Bing.com search for “myrtle lily-of-the-valley”

 

Each of these plants are a tangible representation of the gift of life…a heritage passed down from my great-grandparents to my grandmother and indirectly from both their yards to us.  They also are directly and indirectly from my parents & grandparents and are likely to continue on to my son & his wife.  We’ve received the gifts of physical & mortal life from our forbears and they’ve also blessed us with the heritage of faith–the seeds of eternal life in Christ Jesus.  We’ve passed those gifts on to our children & look forward to them continuing to be passed on to the generations to come…just like so many of the flowering beauties that unify & connect our hearts & all of our earthly properties.

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from a Bing.com image search for “Ephesians 3: 17”

Bikers Rock Mid-Michigan for Jesus!

We were so privileged yesterday to participate in the Blessing of the Bikers event held this year at Victory Biker Church in Lennon, Michigan!  My husband’s band, Lively Pelts, was among several Christian Rock Bands invited to share in this amazing venture.  Also attending were Second Day Story, The Savior’s Army (TSA), and the church’s house band, Anchored in Christ.  That church band can sure rock!  The lead guitarist/singer, “Crow”, is also the church’s worship leader–wow.

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Lively Pelts, Marty–Lead Guitar & Vocals, Roy–Drums, & Michael–Bass & Vocals: 6-17-17

 

This day also featured a special guest preacher, The Machine Gun Preacher.  This is the real man upon which the movie by that same name is based–he actually said that there is a movie sequel in production that should be out in a year or so.  Machine Gun Preacher shared some of the moving stories based on his intensive involvement in all types of ministries in Africa, where he lives and works full time.  He appears to be doing serious kingdom work over there and his ministry is well worth investing in.

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Machine Gun Preacher at Blessing of the Bikers, Victory Biker Church, 6-17-17

Check out his website here:  http://www.MachineGunPreacher.org/

Victory Biker Church seems like quite a unique place for real world fellowship and teaching.  They obviously cater to bikers but were very warm and welcoming to us band families too.  There were people of all ages and races present and they really exhibited a Family of God atmosphere and a come as you are mindset.  This seems to be a church where The Rubber Meets The Road–Literally!  Please feel free to stop by and visit them if you are ever in the region of Flint, Michigan on a Sunday–you are sure to be blessed!

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Poster for Blessing of the Bikers, from VictoryBibleChurch.org

Following the concerts the Bikers were going on a Hundred Mile ride, fanning out across Michigan to share their faith in Christ along the road.  This was a day for real ministry to the real world by real people, many of whom have a background of brokenness, but have surrendered their hurts, habits, hangups, and history to the Lordship of Jesus Christ and He is using them mightily!  How many of us can truly say that about our own walks with the Lord if we are being completely honest?

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Poster for Machine Gun Preacher, from VictoryBikerChurch.org

There were quite a few trials the band faced in participating in this event from power outages, technical difficulties, & even near collapse from heat exhaustion.  In fact, when “Crow” took the stage just after the Pelts set, he declared “It’s hotter than hell-fire up here!”  That was no exaggeration…so the guys really had to press through on multiple fronts.  However, this was a venue and event that bore tangible fruit in the Kingdom of God, & we were so blessed to be there & to be part of at least Four New Souls coming into the Kingdom by accepting Jesus Christ as their personal Lord & Savior!  Thank you, Lord, that your Love is not limited to one type of person but is poured out freely to us all!!!

Blessings,

Valerie

A version of this quote below adorned the men’s room wall at the Biker Church and my husband enjoyed reading the quote aloud to various family members Sunday.  In honor of Father’s Day, and manliness, this perspective seems extremely apropos!

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from a Bing.com image search for “what a ride quote”

PS  please check out Michael’s band’s Reverb Nation page…or find them on Facebook…

 

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

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(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 yet another DNA Explained Blog posting

Below is a comment I made to another DNA Explained blog posting  in response to another commentator’s post.  My response was based on relatively recent experiences at the Gaylord, Michigan Family History Center, a local branch where genealogists can access much of the Mormon Church’s massive Family History Library’s holdings.  On the rare times I get to be in Gaylord during the week I will make a concerted effort to access the local FHC…as the ones that are closer to my home require much more travel coordination that the one near my parents’ vacation Cottage.
Here is the article that both Roger (I copied his comment below) and I were responding to:
This above blog posting gives a very thorough treatment of Ancestry.com’s DNA testing, comparing the current to the previous version.  I was given an Ancestry DNA kit relatively recently and have been reading Roberta Estes’ postings on Ancestry DNA as part of my information trajectory for when to send in our own DNA samples, hoping to avoid the upheaval expected at Ancestry as they were transitioning between their old and new test versions…fyi…Valerie

I don’t know if anyone will read this or even care, but want to express my dissatisfaction with the ‘new’ Ancestry.com way of doing business, which also carries over and severely impacts my research of 10 Ancestry DNA kits that I administer —

For the rest of my limited time on Earth (I’m 70), I’m not going to waste it on Ancestry.com phone queues that are ultimately unsatisfactory. I’m done calling you guys — you promise all and deliver nothing.

My 3-year-old cry for support with outgoing in-app messages has never been resolved. In fact, you recently closed my last Ancestry Support Case — 00155616 — without even following up by telling me why.

The last time I phoned, the lady promised me a 3 month complimentary sub when my paid one ran out. Instead, I received — “Roger, we’re sorry auto-renewal took you by surprise.
We automatically renew our membership packages to make sure our members always have access to their discoveries and family history tools. But it seems we weren’t very helpful this time. To make it up to you, we’d like to give you a chance to save 15% on your membership.” — Thanks, heaps!

You shift the burden on us users to call you, instead of allowing me to e-mail. I’ve called at least 8 times over the last year. You’re ignoring me, I guess. Is this your business strategy? Too big to fail?

Oh well, in response, I’m switching over to Geni. Sorry it had to end this way.

  • Hey Roger,

    I was recently at a small town Family History Center in Gaylord, Michigan and the manager of that center spent a significant amount of time assisting a patron via the phone and web in handling some type of problem with Ancestry (I’m not sure if that was a DNA problem, per se). She used her FHC leadership position to apply pressure to the seemingly less than helpful Ancestry employee in an attempt to resolve the patron’s problem. This service may be reflective of FHC service in other locations or an example of a lesser trafficked location’s leadership going above and beyond.

    Based on this observation may I suggest that you consider visiting a local Family History Center (you can find them from FamilySearch.org) and seeing if you may be able to get direct help in navigating treacherous Ancestry waters. That FHC manager also mentioned that (at least at that Gaylord “church”) if you joined the “church” that you automatically could/would receive a free Ancestry.com membership. From my perspective this Could mean that if one could locate Mormons that are also involved in DNA this could lead to a group that by definition works with Ancestry and likely Ancestry DNA. Hope this hint may be of some help.

    Best Regards,

    Valerie Curren

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

 

Commenting on “Only the Rich will Have Rights” Article

I’ve recently decided to check out the blog, ComfortInTheMidstOfChaos.com in the hope that I will find writings that speak to me where I am currently.  This is a community of Christian Parents whose children have complex special needs.  If you’ve read anything here at Special Connections you may guess why that sounds appealing.

Because I’m basically still reeling from some very difficult, painful, unethical, and frankly illegal events surrounding my son’s education (or lack therof), I clicked on the “special education” tag at the above website.  The article below jumped out sufficiently for me to write to the author in the comments section.

http://www.comfortinthemidstofchaos.com/2015/01/are-you-serious-awards-volume-xl-only.html

Below are my comments as shared with the above blog post, though due to the character limit they were posted there in batches.

We have just experienced the fallout of this dilemma first hand. Our 20 year old autistic (among many other issues) son “graduated” last Spring with a “diploma” though he still cannot do 3rd grade math! At the IEP near the end of the school year I (again) raised the issue of Transition Services and provided several “age appropriate transition assessments” to show areas where he still needed significant help. By the way, the school has done Zero Transition goals or services over the years even though I have asked in writing for such Legally Mandated services to be provided. They once again refused, and also refused to reconvene the IEP to address outstanding issues and my son’s need for clarification from IEP Team Members.

The bottom line is that we ended up filing a Due Process Hearing Request near the end of 2015…and I had been working on the issues related to that filing leading up to the IEP and before filing, for about 8 months preceding it. We tried to find an attorney or legal advocate including returning to the University based “poverty law center” who had assisted us a decade ago when we had been compelled to file for Due Process, again as a last resort. The law center said no; our state’s Protection & Advocacy organization said our situation was too complex (after working with us over the phone and email for a month) so no; a state level Autism Organization did basically the same thing as P & A.

We are in a lower income situation and our son is on SSI, Medicaid, and Food Stamps so he personally, a legal adult Not under guardianship, is definitely low income. I went through our state’s Bar Association (phone & web) and sent emails to every attorney listed who had Special Education expertise and also did pro bono work…no takers. We contacted another university’s disability law clinic–no. I was in the process of trying Legal Aid (who seemed unlikely to have special education expertise but would at least be free)…

Anyway, a relative offered us a sum of money that could enable us to “hire” legal advocacy for the filing of motions, oral arguments, and conducting the hearing itself. We visited this attorney’s office and he basically told us it would cost us at least $20,000 to have a lawyer see us through the Hearing, which of course (even with help) we didn’t have.

In fact, in our state (Michigan) the school district attorneys are now habitually going after families and their lawyers to get attorney fees, claiming the filings were “frivolous” even when they are clearly not. They also apparently get $100,000 insurance money from the taxpayers whenever someone files Due Process so they can pretty much Always defeat the little guy (who already has the burden of proof and a major uphill battle). The lawyer examined the school district’s lawyers’ motion to dismiss (where they either denied or ignored every issue we raised) and seeing that they hadn’t already tried to hit us up for attorney fees said he would talk with them and get the case dismissed (like he was doing us a favor by Not allowing the Significant Issues we raised in the Due Process Hearing Request get a “fair” hearing). I thought we were there to hire him to represent our son, but he talked as if we decided to proceed Josiah would be on his own in court…

The financial component of what would likely fall on our head if we proceeded, our direct attorney costs and the likelihood of being “sued” to pay for the school’s attorneys, regardless of the legitimacy of our issues really scared most of the other family members at the meeting. My husband was afraid that if we proceeded we could lose our house (though not having $20,000 meant, apparently, not proceeding at all)!

So instead of helping us with our case “our” attorney (who at least lowered his fee) appeared to never read our actual hearing request (it was nearly 40 pages long after all), nor did he review some of the supporting documentation I sent him electronically to show “proof” of what was being contended, nor to offer us any advice or analysis on the “merits” of our case, or lack thereof. Needless to say I was, and basically still am, furious. I felt as if the 15 plus years of Wrightslaw and other advocacy training and self education I’ve attained was pointless. I could have rolled over and played dead at virtually every IEP meeting we’ve had and gotten virtually the same results!

The upshot was that our disabled son was pressured to sign a “with prejudice” dismissal of the case request so that the case would just go away…and we were all supposed to be grateful that at least the school wouldn’t try to make us pay for their lawyers! How is that protecting the rights of the disabled, especially the lower income disabled (& their families)?

We had and still have extremely serious and legitimate issues, many of which have been problematic for years, some going back to 2001 when the school disregarded autism and outside (hospital based) neuropsych testing showing my son’s IQ to be “low normal” and they decided he had an IQ 30-40 points lower than the outside testing showed…put him in a class for mentally/cognitively impaired students, didn’t address his autism, denied him access to general ed in any meaningful way until our prior hearing request (which finally got him a Para Pro, which had been a doctor’s written recommendation from at least 2000), refused to re-mediate his areas of learning disabilities because they preferred to use their significantly lower iQ during the “severe discrepancy” LD era, even though his math LD met that more stringent requirement even considering the IQ they claimed he had…and many other things.

The irony is that we would probably never have pursued Due Process this time if they had been willing to Finally address his Transition Needs. I had mistakenly thought that that area got short shrift when other heath crises (like a Brain Tumor and eventual Liver Transplant) took preeminence. Apparently it was the same as always, obvious needs that would be disregarded, denied, or dismissed…

I could go on at even greater length here, and I’m sorry for going into this so much, but it is still very fresh and raw. In fact, today was to be the day the Hearing was to have happened/started. At this point I’m trying to regroup to find another way to get my son’s significant needs addressed when a system tasked with caring for these issues was extremely derelict in its duties. Given that Michigan is usually quite generous, in that it provides Special Education through age 26 (unless one “graduates”) it is even more frustrating.

My son’s doctor has said that kids that have high-functioning autism are the one who aren’t getting their needs met, not in school and definitely not in the adult services industry. If you are high enough functioning to handle the academics then they apparently completely disregard the independent living skills side of the equation. If you can’t handle the academics then the “life skills” track means you never acquire anything like a high school education. If you examine the IDEA requirements for post-secondary transition you have to wonder where the “diploma” track kids will get those issues addressed if they are busy taking the course requirements for graduation…and graduating kids without high school skills and no transition services violates the letter & spirit of IDEA!

Here’s our bottom line, too weary over the years to step our issues up to the next level after the extreme exhaustion and years of dispute that accompanied our first Due Process request (that took like 2 years to resolve, when 60 days is “required”)…overwhelmed by Brain Tumor & Liver Transplant issues that exactly overlaid the years when Transition should have been addressed (and initially when we should have confirmed that the Settlement terms from the first Due Process request were followed–they weren’t entirely). Being lied to by school staff that you don’t get functional needs met when you’re on the diploma track and being too beaten down by the IEP process (always backed up to the end of the school year so there’s no maneuverability for “procedural safeguards”) to start the battle all over again when school starts. Being unable to find virtually Any Advocacy to assist us over the years so living with the “as good as it gets” aspect of the IEP that was, from my perspective, No Good At All (and Never Legally Compliant ANY Year). When finally filing Due Process again, as a last resort, being told that because you don’t have deep enough pockets to absorb attorney fees for your son AND the school you can’t/mustn’t proceed.

And here’s the real kicker, since our son is Not under guardianship, if you cannot find an attorney to represent him then HE MUST ACT AS HIS OWN ATTORNEY. So in order to vindicate our son’s rights he must be mightily violated by the system in order to proceed. Someone on the spectrum, with communication, attentional, and processing issues will be forced to act as his own trial attorney in a hearing. He doesn’t have near the breadth of understanding of special ed law, or even his own educational history, that his mother does, but she cannot speak on his behalf! The attorney insisted that the hearing experience would virtually destroy Josiah, being made to listen to people he cares about potentially lying and saying horrible things about him (even if they didn’t believe them but in order to protect their jobs). His twin and father were convinced to “quit”…Josiah and I, not quite so much…

We are praying about where to go from here, but it is an incredible heartache to me that we cannot even, apparently, have our legitimate issues heard nor obviously afford to find someone to proceed. Now it may be that even if we found someone free who could proceed we cannot carry on because of the “with prejudice” dismissal (which apparently means cannot be brought up again and is used to dismiss a case on the merits–which were never addressed in any venue, not even our alleged “legal representative”). Being told by the attorney that if we’d come to him a year ago he could have “kicked them in the…” but now it’s basically too late. “You can’t do anything to help your son…but I really hope you’ll become an advocate to help others…you know the special ed law better than the administrative law judge who would have decided your case”…what does a parent even say to news like that?

Thanks for letting me vent, and thanks for writing about the many issues families face. I only just found your blog after reading your recent article on Rare Diseases and Not Being Alone that you published through Special Needs Parenting. I am planning to read many of your postings in my process of moving forward from this devastating disappointment.

Blessings In Christ,

Valerie Curren

PS I recently started blogging at SpecialConnections@WordPress.com and would love to have you stop by! Best Regards!

Also, I’ve been writing a medically focused CarePage.com blog mostly emphasizing Josiah’s needs for several years now, trying to cope with Brain Tumor & Liver Transplant for a while here:

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

And my son Josiah is working on finding his own voice here:

http://www.carepages.com/carepages/JosiahTheOvercomer/

I have not yet, until this reply, written about so many of the details of what has transpired surrounding our Due Process Hearing Request and the horrible and entirely ineffective results from attempting to assert my son’s legal protections.  If you are reading this page our family would greatly appreciate your prayers on our behalf as we seek to find a way to move forward that addresses our son’s myriad needs, redresses existing grievances (if that is even possible now), and hopefully ultimately blazes a trail so other students and families won’t have to suffer the major setbacks that have been body blows to us all.

There is Always Hope…and the Lord is still Light & Life even when all about us is seemingly darkness.  May you too find Rest, Peace, Joy (even in the midst of sorrow), Light, Love, and Hope in Him!  Blessings, Valerie

Anatomy of a Medicaid Physical

Today I had to take my son, Josiah, to a doctor’s appointment to have a Medicaid mandated yearly physical.  Here are some of the myriad aspects of addressing my son’s needs…

Triggering the negative memory of why this physical was originally rescheduled to accommodate the schedule of a Special Education Attorney that were needing to see about our recently filed “Due Process Hearing Request”–that “case” having now been “dismissed” in a manner as to provide no resolution of significant issues and seemingly no recourse for any type of a redress of grievances…

Looking again for paperwork associated with accessing Special Olympics and a local ARC Chapter as a way to potentially support my son’s desire for athletic participation.

Speaking with someone at the doctor’s office prior to the appointment to see if we could get the necessary forms printed off there as our printer is basically inaccessible…fortunately this was something the nurse could do once we were there.

Gathering necessary materials from several locations in case any of those particular items needed to be referred to during our visit.

Since Josiah didn’t bring something to keep him occupied during our waiting room time offering him the “Autism Speaks Family Services Transition Tool Kit” (this was a resource that I had laid aside some months back when in the immediate intensity of preparing our “Due Process Hearing Request” & it represents another load of guilt I carry for not having satisfactorily nor sufficiently made transition efforts)…as he flipped randomly through this item he became increasingly verbally and physically distressed, especially when he encountered “sexuality” in it’s pages and would only spell the word s-e-x and expressed his upsetedness that this was even a topic within the book.  I kept trying to reassure him that it was a part of life so it was reasonable to have to discuss this area at some time.

Discussing various aspects of Josiah’s recent medical needs and medications.  Since we were seeing a provider that wasn’t usually on Josiah’s case she was not personally very familiar with our unique situation.  This meant expounding on issues that are theoretically in “the past”, but still retain power to impact, distract, and detract from present tense realities.  This meant a more thorough discussion of his Brain Tumor scenario as well as touching on the Liver Transplant and part of what lead up to it…Also there was a side jaunt into the Cardiac need for “Aspirin Therapy” but that we were pending this until getting concurrence from Liver Transplant.  Having made email requests and having the Cardiologist send an in-house request for this Ok in addition to requesting the Transplant Pharmacy (from whom we receive the bulk of J’s meds delivered on a monthly basis) to use it’s medication management techniques has gotten no apparent results.  This either will await the 6 month Transplant visit in May or next month’s post bloodwork nurse’s call to see if we can get that med started to prevent blood clots in his heart–sigh…

We also briefly touched on the CPAP issue, how he has yet to get back into compliance with his sleep apnea breathing machine.  He first got out of compliance when the machine broke and after the “repair” a part went missing (not sure if at home or at the repair shop) and it was then un-usable for a period of time.  We got the replacement part donated and another newer machine but he was only beginning to reorient himself to its usage when he had the Brain Tumor removed through his nose and he wasn’t even Allowed to use the CPAP for six plus months.  Given he was then on the Transplant list and I was pretty much a basket case I surely dropped the ball in this arena (how much you have to prompt someone to do certain things when they are on the Spectrum and have gotten out of a particular functional routine)…Anyway he has since moved his bed from the platform to the floor below and disassembled his CPAP machine for a recent Sleep Doctor visit and Med Equip run (for new mask, hose, & filter supplies)…so he has not gotten back into the routine and when I remember to remind him about using CPAP it’s when he’s preparing for bed and too tired to deal with it…of course I forget to prompt about this when we’re both awake–sigh…

His most recent surgery having been the one to “correct” congenital double vision (V -pattern esotropia?) meant going into details of how that condition was discovered back when getting the Neurological Ophthalmologist’s input on the safety of surgically removing the Pituitary Tumor as it was basically pressed up against Josiah’s Optic Nerve.  Apparently that doctor diagnosed the congenital double vision back then in 2010 but since I was overwhelmed with the presence of both the Brain Tumor and the Liver Masses (and the intensity of which situation was More Life Threatening and pre-eminent) I didn’t actually “hear” that diagnosis (it’s also possible that layman’s terms weren’t used so I didn’t actually “comprehend” the significance of “V pattern esotropia” and the result was that Josiah suffered with Double Vision for an additional Five Years before surgical correction this past summer.

This also meant discussing the extent of the “correction” which our two post-op visits had indicated was 100% successful but a recent OT eval for “Vision Therapy” seemed to indicate that double vision persisted, at least at longer distances…and also that Josiah apparently has 20/40 &20/50 vision in his eyes.  [I’m guessing this means we should be looking into some type of correction but who/where I don’t know.]

This also meant discussing “Vision Therapy” and how the only reason I even got a referral from the Neurological Ophthalmologist for a therapy he considers “controversial” is because I asked if we could at least see if it could be effective for Josiah in particular.  The University-based OT we were referred to does Not do such therapy, but did some type of evaluation to see if Josiah might be a candidate…it appears that he might be.  Today’s doctor said that Josiah’s Primary Care Physician there “is a great believer in Vision Therapy” but apparently most insurances don’t cover it and it can cost upwards of $3,000, which would basically mean no access to this, unfortunately.  She said one clinic family had managed to get Medicaid to cover this treatment and she would look into what they did and pass the info along.  I speculated that due to the surgical “correction” of his congenital (birth defect) double vision perhaps coding for visual therapy could be used for another diagnosis apart from Autism so that he could receive this seemingly important and necessary intervention…we’ll see…

When she asked about how things were currently going this lead to an intense and convoluted and rather disjointed retelling of some aspects of our recent special education battles.  Josiah & I both shared multiple perspectives and just discussing this situation at any length (as well as not discussing it and keeping it bottled up) is incredibly exhausting.

Apparently the way this, and other topics, were addressed led this doctor to conclude “I had no idea you were this alone” and she kept trying to reassure me when I expressed a number of arenas of self-criticism for not doing a better job in seeing Josiah’s needs met; particularly those issues related to Transition and Special Education.  She was quite empathetic regarding the magnitude of the issues we have faced and sought to reassure me that being only one person meant that I could only do so much.  Speaking obliquely of my responsibilities to the other four family members reminded me of how short I have fallen as a wife and mother over so many years when I’ve placed such emphasis on attempting to address Josiah’s needs.  Certain conversations at home later helped to increase this load in part and alleviate it in part, especially when the emphasis was on trusting the Lord to be the one to carry and  be responsible for addressing Josiah’s needs…

Observing the physical examination lead to overhearing the aside diagnosis of “mild scoliosis”, something I’d never heard before in relation to Josiah.  The Doctor indicated a stiffness in his shoulders and a tilting and I mentioned his history of Torticolis and wondered if what she was observing was related to that.

Josiah blurted out his frustrations, on my behalf, about historical verbiage by a Michigan Protection and Advocacy “advocate” who had “helped” us about a decade ago when we had also filed our only other “due process hearing request” against our local public school (the only significant gain from which was a Para Pro provided roughly SEVEN YEARS after the doctor–legally mandated IEP Team Member–had recommended, in writing, that such a one on one support be provided to Josiah so he could remain in general ed; I obviously have No Unresolved Issues here!)…anyway this led to me quoting the above “advocate” in her phone response to my then attempt to lay out the magnitude of the issues we faced getting our son’s needs met via the school.  “I think you are a delusional mother who refuses to accept that you have a mentally retarded child!”  Josiah is still angry about this and the Doctor was seemingly shocked that we received such treatment from an organization who exists to protect and defend the rights of the disabled…whatever (they didn’t really help us this “case” round either, but that’s another story)…

The doctor mentioned another family facing similar challenges where the father has become a tireless advocate on his son’s behalf.  She said “he’s like you only times a thousand”.  He has been aggressively advocating on his son’s behalf, even to the point of picketing in front of schools in an attempt to get needs met.  She may put us in touch with each other since our sons are similar ages and facing similar Transition needs.

She mentioned that this father “only” dealt with Autism with his son, not the complex health related Scenarios we face with Josiah.  This led to me expounding on how Autism has really become for our family the overarching issue impacting us daily in relation to Josiah.  Apart from times of extreme medical stress, like waiting for a transplant, or the ubiquitous pain, frustration, anger, and disappointment of dealing with Special Education and Not getting his legitimate needs met the Autism side of life was our main “stressor” and should not, in my opinion, be spoken of in any minimizing way…

In a side highlight, we briefly touched on the issues of vaccines based on questions on the Special Olympics form.  Josiah is currently out of compliance with some vaccines and this was in part due to Liver Transplant recommendations.  We had Josiah receive All the vaccines recommended by the LT Nurse prior to Transplant (and his siblings get the ones LT recommended they receive to put their brother at less risk post-Transplant).  This was after years of me declining most/all vaccines for all our kids because of Josiah’s Autism (and in part because of a book that speculated that ADHD and Autism were in fact on a continuum)…anyway I ended up expounding on the frustrations of being pressured by the other kids’ doctors to vaccinate them even when I referenced a study I’d heard of (but not read) that purported to show the difference in autism between Amish and general populations.  This doctor said that she and J’s PCP are strong believers in an association with Autism and Vaccines.  I said I didn’t think that vaccines Caused Austism, per se, but more that people that are prone toward Autism are perhaps more neurologically fragile and that giving so many toxins so young and so soon to children likely increased their likelihood of neurological disorders like Autism.  The doctor didn’t dispute this layperson analysis, but went on to add that she thought overuse of antibiotics may also be a contributing factor…hmm…

As an aside, I mentioned that Josiah had NEVER Received ANY of the intensive Early Childhood Autism interventions.  This I believe was in part due to the magnitude of the medical issues being addressed then but in greater part due to the Special Education system NOT addressing his needs.  I believe I may have also mentioned my exploration of the topic of “disability discrimination” that I believe has directly plagued us in our local school district since at least 2001…but I may be mixing that us with a later discussion at home.  I told the doctor that I had recently downloaded a scientifically based research analysis study that purports to assess a number of autism approaches and their effectiveness with teens and young adults.  As this study is nearly 200 pages long I have not yet reviewed it.  Here is another arena where I would greatly appreciate the input from the Primary Care Doctor, and she sounded like she’d run some of these issues by her.  It would be great to get some real-world insight on this topic from one of only 3 Michigan clinics authorized to do the Autism Waiver work mandated under certain insurances now.  Hopefully this conversation will Actually take place and the results get back to me…

This was also mentioned in that since it appears that our “legal case” is stalled out and little, if any, help will be coming (at least not any time soon)…it now is becoming that much more imperative for me to find some way to cobble together Real and Meaningful Transition Services and Supports to Finally Attempt to meet my son’s myriad needs.  Since “special education” is seemingly out of the picture at least this process need Not be limited by what is mandated/allowed by IDEA (Individuals with Disabilities Education Act).  I’m trying to look at that “freedom” as a degree of blessing even as I “officially” take over the role of Josiah’s “Transition Coordinator” (which I’ve basically been attempting to do anyways), a role legally mandated of special ed but NEVER Done!

She also planned to have one of their Social Workers, I’m not sure which one, look into further Transition Resources for us.  They are also to send us material regarding current offerings for Adaptive Sports.  I tried to get a business card and email address for this particular social worker upon checkout but was unsuccessful here…

I mentioned how the complexity of Josiah’s needs over the years has made it very difficult where to focus my efforts.  Her colleague, Josiah’s Primary Care Physician, has been an invaluable resource whose advice I make a consistent effort to put into practice.  With her “umbrella style” care in Josiah’s case (she gets virtually all specialty reports and processes and discusses them with us periodically) and her more “Big Picture” perspective, as opposed to my more “lost in the minutae” (no fake!) approach, can really assist in gaining a measure of clarity in numerous areas.  I so value how much this particular medical clinic has come close to providing a degree of “medical home” style service to us over the years!

Josiah also stated that I verbally took out my anger about the “case” on one of my older son’s friends.  This meant clarifying that I was speaking passionately answering questions he had asked.  As an aside, that young man is in college and is likely to pursue a Law Degree and eventually inherit his mother’s Law Practice.  He had taken a copy of our 12-4-15 “Due Process Hearing Request” copied and read it (and provided constructive feedback) and given copies to his attorney mother and one of his professors who teaches pre-law classes and is also an attorney.  We had given him permission to spread this info around thusly in hopes that some help would Eventually be forthcoming…

Josiah got pretty revved up expounding on our plans to write some letters to various people that we hope may have an impact on the special education situation and disability discrimination.  He and I are both planning to write to our local Michigan State Representative.  Josiah was in a class with this man’s son a number of years in elementary school and has learned to communicate with him even though he cannot speak–he has Fragile X Syndrome.  Both J and the son “graduated” this past Spring, though I believe that the son didn’t get a “diploma”, but likely a “Certificate of Completion”.  Writing to this man could be a crap-shoot, at least from my perspective.  Josiah is apparently much further along than his own son (who likely continues to receive some type of special education supports and hopefully some degree of transition services).  He may perceive our efforts to finally secure meaningful, appropriate, and legally compliant long-overdue education services in a negative manner given what he’s experienced with his son.  However, he could end up being a tireless advocate and a voice to represent Exactly What We Need because he, to at least some degree, has learned that hard fought language I also reluctantly but necessarily have been forced to speak.  Other people I am contemplating writing are the Secretary of Education, federal and state; the Governor; the local School Board; our County Level Educational Authority; certain disability organizations; and whomever else a letter writing Advocate in our State (whom I hope to consult/collaborate with) may suggest…

I completely forgot to ask her what she saw in his ears since he’s had a history of persistent fluid buildup and Otitis Media…also didn’t ask if the eardrum was retracted on either ear.  He has had a problem with negative pressure in one/both ears since no longer having Myringotomy Tubes surgically implanted and this can mean in the long run Permanent Hearing Loss as persistent negative pressure can lead to his inner ear bones rubbing together and wearing out to some degree.  This issue may be a lingering effect of his presumed Eustachian Tube Dysfunction…

Me being without many supports to process/discuss so much of what’s gone on, or is currently going on with Josiah, led to me recounting briefly how finding a support group has been difficult.  I used to “lurk” in “Moms Online” and read, in particular, various forums focused on their kid’s diagnostic categories.  I told this doctor that I’d go to various message boards like “Congenital Heart Defects”, “ADHD”, “Autism”, “Urogenital Defects”, “Prematurity”, etc and that I don’t think I ever found another poster dealing with even three of the things that were heavily impacting us at that time…it’s so hard to find Anyone who knows this language in which I’ve been unwillingly forced to become so fluent (medical-major & minor; behavioral; therapeutic; “educational”; legal; interpersonal; advocacy; psychosocial; complex family dynamics & diagnoses, etc.)…this can make addressing the magnitude of issues and factors associated with the care of a complex child so much more daunting and isolating….

Filling out the family portion of the Special Olympics physical form requires a brief jaunt down painful memory lane (though not quite as brutal as a pre-operative questionnaire; it’s difficult to have to give significant details on virtually every body/mind system).  For the “Major Surgeries” I was able to pull from his 17 surgeries “2 Open Heart, Brain Tumor, Liver Transplant, Eye, and Ears, etc.”  (Oops I forgot to list hernia repairs, 3 stages of urogenital repair, & tonsillectomy, but afterall do I even know what constitutes “major surgery” anymore?)

The Doctor asked about our Respite Care services and the hours we were supposed to receive.  This lead to discussing how he’s has Community Living Services listed in his Community Mental Health case for years but is not getting them fully.  We’ve asked for another staff person in addition to the young man who works with Josiah on both Respite and CLS.  This lead to discussing how “Supports Coordination” via CMH has broken down at key points, like when we were trying to establish “Power of Attorney” or how Josiah has now been without needed PT, OT, and Speech Therapy for a year.  The Doctor mentioned their in-house social worker who handles “transition issues” and I said how I’d used her recommendations with CMH in that they can verify with our primary insurance whether they will or will not cover the above therapies…if not then they can immediately begin billing Medicaid…this has been going on for about 6 months with me reminding CMH staff verbally and in writing…so far to no avail…

Answering “Please indicate intellectual disability, diagnosis if known (condition or cause)” meant discussing more of the nitty gritty of what exactly Josiah’s challenges may be in this arena.  I’ve been told that his “developmental disability” diagnosis is “PDD-NOS” or “Atypical Autism” and wondered if this would apply.  She said they were referring to “cognitive or intellectual impairments” and Josiah didn’t have one (though his paperwork has said otherwise, depending on the source)…we are really dealing with various aspects of “neurological impairments” and so it’s unclear, at times, how to “classify” Josiah’s complexity in this domain.  The “answer” I wrote said “PDD-NOS, Learning Disability in Math, “mild cognitive impairment””, the last quoting some other documents.

This led to me having to explain to Josiah that he may be too “high functioning” to participate in Special Olympics at all.  In the event he is allowed to participate I was trying to prepare him to handle a scenario similar to one he experienced years ago where he was in a “social skills” group at CMH with “high functioning autistic young men” and he was angry and hurt that he was perceived to be like that group since he was the highest functioning one, seemingly.  He keeps hoping to have interactions with people who are “like him”, whatever that means.  If he’s in Special Olympics and more higher functioning than most then, I’m encouraging him to be a leader, friend, and helper to the others.  He will need to learn to communicate with each person, learn their names, and learn how to become part of the team, especially if many of the people have been working together for a long time.  We both took time to read and sign the appropriate paperwork…

Josiah tends to “perseverate”(get stuck or fixated–what’s wrong with that???) on certain topics, and one of late is his desire to play sports with regular guys.  This can mean re-treading ground like how he wished he’d been cleared by Liver Transplant to sustain body blows in time to have joined his high school football team.  He has been “friends” with many of the footballers but was unable to participate for medical reasons.  He also Really Wants to play basketball with guys, like his brother.  His oldest brother has been lately going once or twice a week to play B-Ball with various guys.  One location includes guys like my brother, in his mid 40s, so might be a slightly better “fit”.  I’ve been trying to convince Nathaniel to at least take Josiah once and Potentially give him some court time.  N is pretty adamant that J couldn’t handle the intensity and that he could really get hurt….Josiah is really caught in that “high functioning” place, too high functioning for easy/reasonable access to supports geared toward more severely disabled people and too low functioning to reasonably fit in with regular “able bodied” guys…

Believe it or not, this post actually started, at least in my mind, as more of a bullet pointed short-hand listing of certain (tedious and mentally/emotionally exhausting) details of just what went into having a “routine physical” with my son–accompanied by yours truly.  Obviously that “goal” has transmogrified into the monster displayed before you.  Since one of my primary reasons for starting the Special Connections blog was as an outlet to process many of the issues with which I wrestle, it appears that this posting is actually living up to that personal expectation, to some degree.  Given the level of “perfectionism” which my personality, past, and/or current life requirements demand of my existence that is a nearly impossible task!

This posting has been written over the course of several hours with numerous familial interruptions breaking my train of thought.  Since it’s now exceedingly late it looks like I’m going to post it in an “as is” status.  Hopefully you will all bear with my feet of clay as you read through the barrage of info here…if you even choose to do so.

I hope and pray that somehow our journey can be an inspiration and encouragement for you to continue to press on in arenas where you find yourself facing difficult, painful, traumatic, inevitable, hopeless, hopeful, tenacious, resilient, overwhelming, belittling, labeling, understanding, and supportive forces.  May the positive “forces” outweigh those that would seek to destroy us.  For our family the ultimate source of strength is in our Lord and Savior, Jesus Christ.  It is His Indwelling in each of us that provides us with the fortitude, tenacity, resiliency, and fidelity to Truth that somehow enables us to “rise and rise again”–I guess you could say that we are acting via Resurrection Power, Life from Lifelessness.  If you are encouraged or challenged by reading our words, we would love to hear from you, and to pray for your needs, if you would care to share them with us.

I’ll leave you with a listing of questions that still remain outstanding from our last visit with the Primary Care Physician from today’s clinic.  When she saw me pull out my steno notepad (“Blue Brainiology, the Jottings” a notepad I started keeping starting 11-30-09 when we had the first specialty visit following the discovery of the Brain Tumor and Liver Masses and that initial appointment included a Pediatric Neurological Oncologist, among other disciplines), one I have taken to virtually All Specialty Clinics but never her visits, with a listing of questions written out she became overwhelmed and said we’d have to discuss them over the phone.  Though she gave me her cell phone number I chose not to call her, having used up more than enough of her time during that day’s visit.  Subsequently some questions were answered by other clinic staff, nurses and/or social workers.  Below are questions that remain outstanding.  I Might include a couple questions for which I got an answer if I think that info could potentially benefit anyone who still might be reading this missive.

Thanks again for joining our journey.  God Bless–Valerie

Outstanding steno notebook questions I hope to send to the clinic staff and get addressed via email or other communication:

#12 For someone of the autistic spectrum, especially if they are “high functioning”, what is her general overall recommendation to education, medications, therapy, lifestyle, etc.  Like does she typically recommend an aide/para pro in the classroom, Least Restrictive Environment, a Center-Based program; LOVAAS or ABA (Applied Behavioral Analysis) Therapy?  [this was to inform the development of our case request and to provide a professional frame of reference of perhaps what “should have been done” for Josiah in analyzing the “appropriateness” of his education, at least as pertained to Autism]

#13 Should the issue of adequately addressing Learning Disabilities be limited based on the child’s “perceived” intellect?  [we have had many battles with special ed over what Josiah’s “true IQ” actually is…in an earlier iteration of IDEA schools were allowed to use a “severe discrepancy” model between “IQ” and individual subtest “performance” to determine whether or not an LD was actually present.  Given a more than 30 point IQ difference between what the school psychologist found–testing J in a manner that was entirely discriminatory based on the nature, severity, and complexity of his many even then known disabling conditions–versus what the University based Neuropsychologist found, using the the higher, and I believe more accurate, IQ would have allowed most arenas to be considered LDs; using the school’s number would have at a minimum allowed the Math arena to be considered an LD, but back then they claimed “low intellect” and therefore no Learning Disabilities so no interventions]  the Math deficit is a huge factor that drove the “due process hearing request”–for if Josiah indeed has a (near) normal intellectual capacity, as early U of M (and some subsequent) testing portrayed, then giving him a “diploma” without appropriately educating him in math is a huge FAPE violation…

#14 What Transition Assessments do you think provide the most meaningful info for planning post-secondary education, training, employment, independent living,  and community participation?  [all of those arenas are Legally MANDATED to be addressed in Transition Planning and Services under IDEA and the inadequacy of even assessing, let alone addressing, these areas was a significant portion of the then in development “due process hearing request” and, at that time separately envisioned “state complaint”]

#15 Do you know of a way for Josiah to connect with kids “like him” (high functioning, Godly, transition age, multiple challenges, etc.) and would that be in person or online?

#16 What resources do you know of and could recommend for Josiah (and I) to review–books, support groups, blogs, e-magazines, etc, to assist us in our current challenges and going forward?

#17 What’s your impression of STEP and do you think it might be a good fit for Josiah?  [STEP is a local program called Services to Enhance Potential; it is apparently for lower functioning individuals and provides a form of “skills training”–we had already interfaced with MRS, Michigan Rehab Services–basically the only form of “transition” his high school offers, as in passing the buck of their IDEA mandated responsibilities to Vocational Rehabilitation; we were told by MRS that they are basically for people a couple of months away from being employable and Josiah needed significant “skill building”, also the magnitude of his disabilities meant that regardless of when we returned to MRS for services he would likely be among the population whose needs were legally mandated to be addressed, irrespective of funding issues or his place in line–I believe this provides quite strong evidence that the HS did NOT do its IDEA mandated job in relation to transition, etc]

#18 What about Higher Education?  Locally or further afield where might be a good place to plug Josiah in to help him in heading toward ministry?

#20 Could she please put us in touch with anyone who has Successfully navigated a State Complaint and/or Due Process Hearing?

By the way, at that earlier visit with Josiah’s Primary Care Physician she reviewed an earlier iteration of what ultimately became our Due Process Hearing Request and agreed that  each issue we were raising was valid and important and didn’t suggest we change anything!  That was an important encouragement to receive during a time of pretty intense stress.

So if you have read this far, please hang in there no matter what you are facing…and hopefully, prayerfully, find a way to Hang on to Jesus!  Be Blessed, Valerie