Page amended June 2017…
Valerie Curren is a Christian foremost. She is also a wife, mother, Licensed Professional Counselor, daughter, sister, aunt, friend, and seemingly tireless (medical, educational, therapeutic, interpersonal) Advocate for her complex special needs son, who has Autism Spectrum idiosyncrasies and many other challenging conditions. She’s an avid reader, enjoys movies, Netflix, family hangout times, the Northwoods of Michigan, laughter, deep “real” issues & conversations, and the many eclectic wanderings of her fertile mind. She has been writing a CarePages.com medically focused blog addressing the myriad needs of her special son as well as numerous tidbits about her family for several years now. This blog can be found here:
Four of the six Curren family members have been officially diagnosed with ADHD and the remaining two members carry many of these traits. Valerie has been present (usually alone) for all the surgeries faced by her children which now number 22, divided between her 3 sons. Her oldest son, Nathaniel, underwent 3 procedures to repair (twice) a complex displaced break of the forearm and later to remove hardware used in the repair to prevent potential future problems. Her second son, Brandon, had a skin graft to repair a severed tip of a finger and procedure to repair a birth defect. Brandon’s twin brother, Josiah, has been the very medically complex person of the family, and has undergone 17 surgeries & countless procedures & interventions over the years. He has been described by a couple of his providers as “one of the most complex, if not the most complex person I’ve ever seen–and that’s saying something since they only send me the complex kids” and “perhaps the most complicated kid in my practice” (by a doctor whose Entire Practice is dedicated to complex special needs children and their families! Clarissa, the youngest and only girl of the family, has thankfully never needed surgical intervention, although she did have a few years of speech therapy during early childhood.
The twins were born prematurely deliberately to save Josiah’s life. At two months of age J had Open Heart Surgery to repair a VSD (Ventricular Septal Defect) and had a subsequent Open Heart Surgery when he was 4 1/2 to remove an overgrowth of tissue beginning to block the blood flow through his malformed (Bi-Cuspid rather than the normal Tri-Cuspid) Aortic Valve. Further surgery on J’s heart pends until his aortic valve and/or aortic root requires repair/replacement…and unless medical science sufficiently advances this is anticipated to require another Open Heart procedure.
Josiah has has a series of surgeries on his ears to correct fluid build up, balance problems, and associated reversible hearing loss. He also required 3 stages of repair for a birth defect, 2 surgeries to correct hernias, a tonsillectomy, and most recently eye surgery to “correct” (we now have conflicting info as to how actually successful this surgery has been) congenital double vision. The Jazzman page referenced above grew out of the virtual simultaneous diagnosis of Brain Tumor and Liver Masses/Tumors. Josiah had the Brain Tumor, an Adenoma, removed through his nose (Transphenoidal Resection of a Pituitary Adenoma)so has (thankfully) no visible external scarring. The Liver was biopsied about a half year before the Brain Surgery as it was unclear at that time which situation was preeminent. This biopsy sampled several of the dozens of masses within his swiss-cheese-looking liver and at that time these lesions were declared “normal liver tissue”.
About two years after the Liver Biopsy those historical biopsy samples were re-evaluated/re-examined under newer liver protocols and the Currens were told that Josiah needed a whole organ Liver Transplant. This transplant situation put Valerie into a significant tailspin and required a lot of time, space, and ultimately the transplant surgery itself to lead to some degree of “resolution” of the internal turmoil she faced. Surgery was ultimately quite successful and has been followed by virtually no complications. However being Post-Transplant will require lifelong medical care…as will Josiah’s Congenital Heart issues…
There have been many other medical issues faced by Josiah primarily, but also to a smaller degree, other family members. Here’s a smattering of many of the issues faced by one or more of the Curren family members: Asthma, Depression, Anxiety, Obsessive Compulsive Disorder, Diabetes/Hypoglycemia, Vision Challenges, Sensory Processing Disorder, Executive Function Disorder, Auditory Processing Problems, Visual Processing Problems, unspecified Neurological impairments/issues, Skin Cancer, Colon Polyps, Eczema, Sleep Disorders (including CPAP usage), Positional Head Deformity (including using an Orthotic Helmet to help reshape the skull), RSV (requiring 2 hospitalizations during infancy), Growth Hormone Deficiency, Low Muscle Tone/Mild Cerebral Palsy, Femoral Antiversion, Presumed but as-yet Unidentified Genetic Syndrome, Gross & Fine Motor Weaknesses, & congenital birth defects in multiple systems amongst others that currently escape me…
The seemingly biggest and most impacting challenge on a day-in and day-out basis though would be Josiah’s Autism Spectrum issues. There has been debate as to whether he is “truly” autistic, as his presentation was more of a PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) or Atypical Autism pattern than one of classic autism, per se; though apparently now the term of art/choice seems to be Autism Spectrum to reflect the highly personalized presentation of symptoms and idiosyncrasies associated with this “condition”. Regardless of what the “actual” name for this aspect of Josiah’s personality/thinking process/behavior is, the family, and Josiah himself, has come to see Autism as being the overarching aspect or descriptor of the more complex and atypical patterns of learning, interacting, sensing, processing, and/or behaving that he exhibits.
Because of the magnitude and complexity of Josiah’s challenges his entrance into the Curren family caused a major shift in focus for his mother primarily. We were thrust completely unprepared into the arena of Special Needs. This started with Pregnancy interventions (including Celestone shots & Bed-Rest) while Valerie was pregnant with the twins, but definitely escalated following their birth. There was the NICU–NeoNatal Intensive Care Unit–(10 days for Brandon & 2 1/2 months for Josiah), Open Heart Surgery, re-hospitalization with a life threatening respiratory (RSV) infection (including an across Michigan ambulance ride for Josiah & Valerie), near emergency surgery on inguinal hernias during the post-op phase of heart surgery, home nurses, medication, Failure to Thrive, Developmental Assessment Clinics, Physical Therapy, Occupational Therapy, Speech Therapy, Sensory Integration Therapy, Music Therapy, Art Therapy, Psychological Therapy, more surgeries, Special Ed Pre-school (in our home &/or Josiah’s grandparents’ home due to medical travel issues and later in 3 different pre-school programs–one specifically designed for Autistic kids where the principal who toured us asked “why hasn’t he been here all along?”), regular pre-school for the twins together, Christian school (one month only for Josiah, but his siblings went for virtually K-8), then Special Education at the Elementary, Middle, & Senior High Schools.
In spite of myriad medical and therapeutic, interpersonal and behavioral challenges we have faced managing Josiah’s many needs over the years…it is no exaggeration to say that our greatest challenges and perhaps most brutal sorrows have really had their nucleus and genesis in our battles with Special Education, at least once we had to deal with this arena beyond the pre-school level. We have had many heartaches and frustrations and minimal, if any, real gains in this domain. These battles began in earnest in 2001, shortly after 9-11 and have continued in varying forms to the present day. In fact we are currently regrouping from an extremely frustrating gladiatorial contest in which we were wounded and bound before even being allowed to enter the arena…and whereby we were forced to face the “enemy” en masse without so much as a sling nor our five smooth stones…
This Special Ed battleground will certainly inspire numerous postings within the body of this blog as time goes on for the very existence of this blog is an outgrowth of Valerie’s coping process as she attempts to assess, re-group, plan, and execute another, hopefully more successful for Josiah (and others) approach regarding education and a potential redress of grievances…We’ll likely be keeping any interested parties posted regarding some of these developments here or at the Jazzman page.
On a separate front, Valerie grew up, and currently lives, in the Metropolitan Detroit region. She attended college (BS Bio-Medical Chemistry, Pre-Med) and grad schools (MA Christian Counseling & studies to obtain prerequisites for counseling licensure) while in Oklahoma. She is a Licensed Professional Counselor in the State of Michigan, though currently not practicing. Oklahoma is where she and her husband Michael met. He was born in Denver but later moved to Tulsa with his mother when his parents’ marriage ended. Michael attended college in Oklahoma (studies toward BS in Electrical Engineering Technology and Associates of Electronics Technology) and Michigan (Bachelor’s in Management and Organizational Development). They spent their early married life between Tulsa and Northern Michigan, where they bought their first home and their three sons were born. They later moved to Metro Detroit to be nearer to high caliber medical care for Josiah at the University of Michigan Medical Center and due to a job change. Their daughter, Clarissa, was born during the upheaval process of their move between Northern and Southeastern Michigan.
Valerie participated for a number of years on the Children’s Special Health Care Services Advisory Board as a Parent Representative. This Board advised the Michigan State Legislature on issues surrounding this last-resort insurance that covered a small percentage of Michigan’s children with qualifying diagnoses, like Josiah. She also has functioned as Josiah’s Representative Payee for his SSI case for virtually his whole life. She is now turning her focus to creating some type of “Transition Program” tailor-made to address Josiah’s specific issues and the limitations of the family (financially, locationally, participatorialy) since this arena, even though Legally MANDATED by IDEA (special education law) was given virtually no attention by the school system, which a major reason for the current & historical disputes in this arena.
In fact, Valerie has spent a significant portion of the last 10-15 years educating herself in Special Education Law and Advocacy in her efforts to attempt to secure a more “appropriate” education for Josiah. She was told by a Law Professor who oversaw a Disability Law Clinic at a regional university that she seemed to understand the Special Ed Law “better than 98% of the parents” he had interfaced with. He actually encouraged her to go to Law School once her then dispute with the local school district was finally resolved. In reality the issues that drove that more formal process nearly a decade ago continued to percolate and fester ever since and were to some degree related to the current issues of extreme dispute that were the subject of a recent “Due Process Hearing Request” in an attempt to protect and ensure Josiah’s access to appropriate education to prepare him for life beyond high school…Ironically, in her quite exhaustive review of Josiah’s Special Education file in preparation for the most recent Due Process Hearing Request she discovered that the paperwork generated during the First Special Ed Hearing situation (that resulted in a “settlement”) shows that the school system Violated the Terms of that Settlement Literally the Very Day They Signed the Agreement–apparently knowing that they were virtually untouchable and that they would/did suffer zero consequences. Talk about tilting at windmills…wow…
Valerie was active on the School Board for several years when their children attended a local Christian School as School Board Secretary and served on several committees (like Curriculum, Finance, and Personnel) giving her a broader exposure to educational issues at the local, smaller school level. Michael spent years involved in the lay ministry of their current local church carrying various roles of Elder, Head Elder, Trustee, Deacon, and Worship Director; while Valerie spent the last few years acting as their church’s Governing Board Secretary. She also worked in the church office as the Administrative Assistant, the first “official” job she’d had since parenthood, being primarily a stay-at-home mother. She began that office job only a few months after Josiah’s Liver Transplant and the demands of this work outside the home meant that she ended up sacrificing what time she had left to process & advocate for her son in the special ed domain. She’s still dealing with her own internal fallout for this decision and its ramifications. Did she sacrifice her son’s needs & her own sanity (to some degree) to care for the office needs of her small local church…and was that decision the “right” one…and what now, if anything, can be done to attempt to rectify the situation & address her son’s legitimate needs/rights that were unaddressed by the school system legally mandated to provide for these things.
Both Valerie & Michael participated in church music ministry in Northern Michigan (V vocals and M drums–self taught) and also acted as Youth Leaders/Pastors (?) before becoming parents. Michael continues in Church Music ministry currently playing Bass, again self taught, and working on the Sound Board, as needed. He is developing a “new” Worship Band with a couple of his fellow musicians from his Binding Faith days and will likely get to play roughly monthly at local churches and perhaps again for outreach ministries like Celebrate Recovery. He is also an occasional Speaker delivering a sermon at their church during pastoral absences or giving a message during the Homeless Shelter Ministry, Valerie usually providing counseling/prayer support during some events.
Michael also played his Bass in a local Christian Rock Band, Harken. Here’s their ReverbNation page:
His former band, Harken, recently acquired a new lead singer following the move out of state of the former singer (featured on the ReverbNation page). This new singer is learning all the band’s original material so that they can soon begin gigging again.
Michael’s former Christian rock band, Binding Faith, has a tribute page here at ReverbNation:
He was a little more involved in the songwriting for Binding Faith than for Harken thus far, though with his latest band, Lively Pelts (see below) he will likely become more involved collaboratively in their music development. They also are affording him to expand his musical repertoire, as they play several styles of music in addition to Christian Rock. In fact, in early June he debuted his first public performance of the Blues style of music. Our kids have been blessed to have had a number of unique experiences via the local Christian Rock scene because of their dad’s years of involvement in this fun & meaningful pursuit….
Well that’s a bit of flavor of who we are and where we’ve come from. At some point I hope to flesh out some of the details on some of the internal pages “planned” for this blog….but that will be as the spirit and the muse strike…
Thanks for stopping by and reading this bio. I hope and pray that you may be personally blessed and encouraged by anything you may read here.
Best Regards & May God Bless YOU!
June 2017 Update
Michael has joined a new Christian Rock Band, Lively Pelts. Here is their Reverb Nation page:
Our oldest son, Nathaniel, moved out of our home near the end of 2016 into his own home, which happens to be in our neighborhood, so we still get to see him sometimes. He got engaged to his girlfriend, Tara, at my parents’ Gaylord Cottage over Memorial Day weekend in 2016, and they were married recently in May of 2017! They had a lovely wedding and we are so blessed with this latest edition to the Curren Clan!
Fall of 2017 saw Josiah become involved in Special Olympics through a local disability organization. He has already competed in Basketball and Track & Field and is looking forward to Soccer and Floor Hockey seasons in the coming months. This pursuit is something he anticipates continuing in throughout his lifespan, well into his 60s (according to him), should he live so long.
We’ve had kids in at least one of two local colleges continuously since 2011. One of our kids got a full ride scholarship to Eastern Michigan University! This kid still struggles with settling on a major and finding clear focus and direction for their future (as do All of our kids). Two of our kids have attended the University of Michigan, Dearborn campus. One received a scholarship to assist in financing this education. One of our kids with ADHD has discovered some real academic challenges at college because of that condition and we are still working on ways to address their needs here. Three of our kids have been pretty involved at U of M Dearborn’s InterVarsity Christian Fellowship organization, with one of them flirting with some leadership responsibilities here. We’re thankful that they have chosen to involve Josiah as much as he is willing with this local Christian collegiate fellowship opportunity!
Josiah has been sharing his thoughts, prayers, and praises on his own CarePages.com blog. He also often writes his own version of Psalms, as he is inspired. Check out his very unique perspective here:
Three of our kids have found pretty steady employment. Josiah is hoping to get into the workforce to some degree. This process is complicated by the magnitude of his challenges and the necessity to keep potential earnings within the allowable range from an SSI standpoint, for making sure Josiah keeps his SSI (disability income) case intact, along with its associated Medicaid case is key to some peace of mind regarding his needs continuing to be cared for regardless of what might happen to the rest of us.
I’ve personally become recently “burdened” with attempting to get some degree of compliance with necessary lifestyle changes in relation to “managing” Type II Diabetes. At some later time this may lead to some more detailed blog postings. At least this gives me a little perspective on some of Josiah’s challenges in trying to adjust to new medical requirements…it’s taking way longer than I would like…
Again thanks for stopping by and sharing a bit of our family’s unique journey here at Special Connections!
Blessings to All,
Here are some of my favorite pictures (if I can ever get them to copy/paste here–ultimately this worked when getting things from online, aka family members’ Facebook pages or CarePages photos that I’d uploaded)–in no particular order: