Tag Archive | Nathaniel

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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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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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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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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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…

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

 

 

 

Val’s Day & the Giving & Receiving of Names

Ok, technically it’s Valentine’s Day…but there’s just a bit of enjoyment by using this shortened moniker when your name also happens to be Valerie…

So I’m not actually much for celebrating this seemingly made up for Hallmark coffers “holiday”…but I’m all for the celebration of love!  And apart from the Love of the Lord there is no greater love than that of a family…and being the perpetual family historian for my own clan has lent a measure of appreciation for our names, their meanings (actual or folkloric), and the line stretching back into our personal, familial, ancestral past.

Given that my birthday is a half week off from Valentine’s Day I’ve always wondered if the proximity of that holiday influenced my parents in their naming of me…hmm?

Valerie means (at least this is the meaning I “remember” & assign to it now) “strong in body and mind; persistent, will succeed”…and that perceived meaning has provided a measure of comfort and perseverance during difficult seasons in my life.

Lynn, my middle name (that I really wish were spelled “Lynne”) means “clear, light, water from a brook”…and since my mother’s name is Elaine, it also seems like a shade/flavor take on her own name…

Stoddard, my maiden name, has at least one folkloric meaning from some of the genealogical books I’ve consulted.  In the legendary past this surname apparently applied to the Standard Bearer, and supposed cousin, of William the Conqueror.  Stoddard was a time modified distortion of “de la standard”.  Some genealogical tomes completely refute that potentially folkloric meaning.  The less romantic origin may be that of “stud-herd” as in the keeper of the horses.  I’ve often chosen (in the rare times I contemplate the meaning of my birth surname) to consider the “standard bearing” “origin” to be more meaningful, and this especially so being quite informed by my faith and the need to represent Christ, being in a manner of speaking a “standard bearer” for the King of Kings–the True Conqueror.

My husband, Michael, has a name with more spiritual roots, “one who is like God”.  It is interesting that when he was born his mother, who was Not a Believer at that time (nor, presumably, was his father) chose to “dedicate him to the Lord”…since she really had no idea of what that might entail nor did she have any sort of plan to raise him in the “fear and admonition of the Lord”.  Michael has in many ways lived up to his name in that he makes it a regular practice to submit his human/fleshly side to the Lordship of Jesus and in many ways is thus enabled to embody Christ to his family.

Michael’s middle name, Ellsworth, is also shared by my father, and our firstborn son, Nathaniel.  I don’t carry an “Ellsworth” meaning in my back pocket, so at some point I’ll perhaps supplement this post with a collection of some of the “meanings” available online.

When Michael and I were first getting to know each other we ended up having a conversation about our names and in particular middle names.  He wanted me to guess his middle name based on the initial “E”.  After entertaining several of the “usual suspects” like Edward or Eugene I ultimately said (with the half squint eye that is a Stoddard family inheritance) “it wouldn’t be Ellsworth would it?”  Michael was dumbfounded as no one in his entire life had Ever correctly guessed his name.  In an interesting twist, it actually turned out that we Both had fathers named “William Ellsworth”.

Tracing the Ellsworth name passage throughout our different lineages has been one of the interesting rabbit trails to indulge in periodically.  In fact I was eventually able to discover that Michael’s grandfather also bore the Elsworth middle name, though apparently with only one “l”…it’s is nearly “confirmed” that his great grandfather also carried that same name.  I am still actively pursuing that “Ellsworth/Elsworth” line of inquiry to see if it will lead any place interesting…and it would ultimately be interesting if it were possible to discover the origin in both our families…if that is even possible.

Our son, Nathaniel Ellsworth, and his girlfriend (and likely soon-to-be fiancee) have already discussed the passing on of the Ellsworth tradition.  They are currently planning to gift “Ellsworth” to the next generation should the Lord decide to grace their expected union with a son…

Here’s the current progression of Ellsworth in both our families:

William Ellsworth Curren

Clarence Elsworth Curren

William Ellsworth Curren

Michael Ellsworth Curren

Nathaniel Ellsworth Curren—future baby Ellsworth Curren, God willing

Valerie Lynn Stoddard Curren

William Ellsworth Stoddard

Elzine Munger Stoddard

William Ellsworth Stoddard

(I wish you could see the above names in the formation in this post creation…it involved indenting each succeeding generation so that Nathaniel and his theoretical future son were the tip of the arrow with all of our successive names the angled cutting edge of the weapon.  Given how the Bible refers to children being arrows in the quivers of their father this visual representation seems particularly apropos)…

Psalm 127:4-5 New International Version (NIV)

Like arrows in the hands of a warrior
    are children born in one’s youth.
Blessed is the man
    whose quiver is full of them.
They will not be put to shame
    when they contend with their opponents in court.

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.®Used by permission. All rights reserved worldwide.

https://www.biblegateway.com/passage/?search=Psalm+127:4-5&version=NIV

 

As you can see, Nathaniel has two grandfathers and two great, great grandfathers named “William Ellsworth”, though obviously with different surnames.  On the Curren side, the Ellsworth naming is unbroken while on the Stoddard side it is an every other generation practice…

When we were having children and during the course of giving them names we often would look to “baby books” on the meanings of names to help inform our decision.  In fact, prior to Nathaniel’s birth, we had actually “planned” on naming him “Brandon”.  As an aside I was almost named “Holly” and our daughter was almost named “Brianna” or “Patience Helanne”.  Anyway, Michael recalls that the hospital staff put “Brandon” on the bassinet label after Nathaniel’s birth, but before we had “officially” named him and filled out the required paperwork.  In a sadly ironic way we actually were reading baby names on the hospital discharge plastic bag (for carrying home the sitz bath paraphernalia, among other things) when we saw “Nathaniel” and its meaning “Gift of God”…and it fit and stuck…

Brandon, our second son, has a name meaning “beacon on a hill, a sword or a flame”.  His middle name, Emmanuel, means “God with us” and was also the middle name of my mother’s father, John Emmanuel Koski.

Josiah, Brandon’s twin brother, our third son has a name meaning “God will heal and protect”.  We did not specifically recall that meaning when we named the twins, though we tentatively agreed to call them B & J.  We made the final decision over the phone, while I was in the hospital and the twins were both in the NICU following a deliberate premature delivery at 33 1/2 weeks to “get the little guy out before he dies”–to quote the high risk neonatalogist/OB overseeing myself and the twins.  Michael was adamant that “we should call the little guy Josiah”.  Given the myriad medical and other challenges that ensued (and will likely fill Many Future Postings here) this name’s meaning was both providential and comforting.  Josiah carries my maiden name, Stoddard, as his middle name; so even though I am my parents’ only daughter I was still able to pass along the Stoddard name to the next generation.

Our daughter, and last child, is named Clarissa, which, I believe, means “clear, light, a babbling brook” so in a fashion, and more artistically and subtly naming her, to some degree, after my middle name, which follows loosely from my mother’s name’s meaning as well.  Clarissa’s middle name, Chantelle means “a stone or a song”.  Given my mother’s perpetual love for vocal music and lifelong pursuit of the same this name also obliquely honors her and her life.  The “Patience Helanne” possibility saw “Helanne” invented by me as a way to honor both of Clarissa’s grandmothers, Elaine & Anne.

My parents liked to link their initials together, WES & EEK to make WE SEEK.  This was reflective of their desire to seek the things of the Lord, a primary focus of their lives.

My paternal grandparents combined their names, Elzine & Vivian into El Viva…which was Latin, I believe, for “the life”.  They drew this “El Viva” into the cement pad they installed in the yard of their Northern Michigan Cottage (The Cottage) as the foundation for a river rock stone fireplace that were apparently being constructed near ubiquitously in their neighborhood in that era.  Several years ago my youngest brother, Michael, led the efforts to deconstruct the crumbling fireplace and re-purpose its stones into a glorious fire pit that now sees persistent use, unlike the former fireplace that was mostly a surface upon which to lay things.  The concrete pad with “El Viva” still survives and is sometimes used to support a picnic table in the summer.

Seeing “El Viva” when visiting The Cottage stirs warm memories and thoughts in my heart.  It is a tangible reminder of their love and vitality that continues to live on in the veins and hearts of their natural, and to some degree spiritual, descendants.  We still leave my grandfather’s name “E. M. Stoddard” on the rural mailbox label/sign even though he’s been dead nearly 3 decades.  There are times when Cottage conversations turn nostalgic and my father can speak of his father in the present tense, as if he were in fact actually still there.  In so many ways my grandpa’s essence so permeates The Cottage it can seem like he’s just been there…from the eternal perspective, that our lives are but a vapor, in a sense it is just as if he only just stepped out…

Back to names, and Finally wrapping up today’s posting…Curren means “hero”.  This is a meaning that may be frequently reinforced within our family.  I often call Michael “my hero” or tell my kids because they are “Currens” they are “heroes”.  This can be a reminder as to how to conduct themselves during times of intense stress, pressure, or conflict.

The meaning of names is significant.  There are cultures who keep names secret as a way to protect the perceived/presumed power of a person.  Names don’t have to either limit or define us, but they seem to, at least to the degree we may be aware of their “meaning”, influence us.  There is a bit of mystery here.  Is it a part of “self-fulfilling prophecy”, or do names impact how people treat us.  Would “Norma” have gone as far if she hadn’t changed to “Marilyn Monroe” or “Marian” has he not turned to “John Wayne”?  Hmm…

Here’s a couple of relevant biblical passages (copied from Biblegateway.com):

Whoever has ears, let them hear what the Spirit says to the churches. To the one who is victorious, I will give some of the hidden manna. I will also give that person a white stone with a new name written on it, known only to the one who receives it.
The one who is victorious I will make a pillar in the temple of my God. Never again will they leave it. I will write on them the name of my God and the name of the city of my God, the new Jerusalem, which is coming down out of heaven from my God; and I will also write on them my new name.
It seems that our “true name” is only one that can be bestowed by our Heavenly Father.  I’d like to think that my husband and I cooperated in God’s plan for our children’s lives in choosing names well suited to assist them in the unique and difficult journey of life.  My own name “persistent, will succeed” has at times given me that slight nudge to not give up and that tenacity has been a vital resource to endure and at times overcome some of the brutal realities life has seen fit to throw my way.  By God’s Grace and Favor this overcoming and persistence shall continue especially during these challenging & overwhelming times.
Obviously this is well more than enough for today, Val’s Day…a day for Love & Remembrances.  Thanks for reading and riding along a bit here.  God Bless YOU…may He grant you True Love…especially that which comes directly from Him.
Valerie