Tag Archive | trusting the Lord

Thoughts on Faith Crisis

Wounded and Doubting: How to Respond to Your Child’s Crisis of Faith

“Watching your child doubt is painful, and it tests parental faith.  Our first inclination might be to panic, but the best option is to pray, wait, trust, and walk alongside our children.”

How timely the email inbox can be.  I’ve been “avoiding” wading through the myriad communications in my email inbox as this process can take strength that is not readily accessible (and the bulk of these missives are “impersonal” and therefore on no real timetable).  Lately what strength I can muster has in large part been dedicated to helping my special son, Josiah, wrestle with his own crisis of faith…and reading the article above has now inspired this writing…

It started some time back with a seemingly random conversation with Josiah’s Respite Care Worker that Josiah overheard.  This Worker is a Muslim that has claimed to have been raised by both Muslims and Christians…he said one of his grandmothers was a “Christian Evangelist”.  Anyway the Worker and I were discussing the changing of faith of his father and stepmother, in that he claimed that both were “raised as Christians” but later converted to Islam…I had questioned whether or not either of these relatives had truly been “Christian” at all if they could alter their viewpoint of Jesus so much that He would go (in their minds) from Lord & Savior to just a “good man” and a “prophet”…

Anyway, overhearing this conversation seemed to start a spiral in Josiah’s heart/mind that if his Worker’s relations could abandon Jesus he too could be at risk of loosing his Faith…

My husband and I have each spent hours in counseling and prayer with our son as we attempt (with the Lord’s help) to assist him in navigating these treacherous waters.  It’s truly wondrous to see the depths of despair that assail our son as he wrestles with his sorrow and shame at even the possibility of ever turning away from Our Lord.  His pure heart has been laid bare in conversation and prayer and his unveiled desire for a deeper rekindling of his zeal for the Lord is remarkable in someone so young! (or anyone, for that matter!)

So we’ve been encouraging him in Scripture memorization and meditation, prayer, worship, and in carrying out the edicts of scripture…like taking “into captivity every thought to the obedience of Christ” (from BibleGateway.com)

2 Corinthians 10:5 King James Version (KJV)

Now we continue to encourage Josiah to work on this process of “taking into captivity” his thoughts that seem to want to stray into the arena of his fears.  As a person on the Autism Spectrum with tendencies toward “perseveration” (getting stuck on a topic) and with a known history of Anxiety and Depression and even OCD this situation has seemed to have created a bit of a Perfect Storm which our son must learn to weather and still Trust God, not allowing his anxieties to overwhelm and overshadow his knowledge of Truth, nor his relationship with the Lord…

Although it is difficult to see how he struggles and the pain this brings him, it is also glorious to see the Kingdom Work being done in his heart.  It is a privilege as a Christian parent to be able to share in the spiritual journey with our children and to find how our own historical struggles and wounds have uniquely prepared us to minister to them during these times of upheaval in our loved one’s lives.  We truly believe that this “crisis of faith” is actually part of his spiritual “manhood training” whereby he learns how to go beyond the milk of the Word and how to feed himself spiritual meat.

We’re also trying to help him internalize how we live by faith and Not emotions…in fact, I don’t know of one place in scripture where the Lord instructs us to consult our feelings and based on them decide what truth/reality is!  We’re assisting our son to lay that firm foundation on the Rock that is Christ Jesus, that is based on Scriptural Truth, and which can provide a safe harbor in Any Storm, because it is never dependent upon our fleeting emotions aligning with it to validate it as immutable Truth.

So unlike the article above’s trajectory, we are Not dealing with someone who doubts their faith, but rather someone who is incredibly broken by even the possibility that at any time he could become so deceived that he would be tempted to turn his back on the Lover of his Soul.  Hearing his heart cry out in prayer, expressing his hunger and thirst for God, and the articulate way (completely different that his human interactions) he communicates with the Lord has been such a sorrowful joy for my own soul too.  In the Kingdom of God my son has No Disability!  Perhaps, in some aspect of God’s plan, He sent us a “broken” (in this world’s eyes) child that we could see how in the arms of a loving God there is no (spiritual) brokenness in him!  In fact, hearing him pour out his aching heart to our Heavenly Father really serves to highlight how “disabled” is my own spiritual fervor in comparison!

What if in God’s Kingdom we seemingly “normal” people are the ones who are truly disabled and our “challenging children” are sent to help us not only to grow in grace and strength in the Lord, but to set an example of how we should live with “childlike” faith?

Peace & Joy, in Our Lord Jesus Christ,

Valerie

And in my current CD mix, as I’m “polishing” this up comes John Elefante’s “Pass the Flame” song, which always speaks to me, especially about Josiah.  The lyrics below from

http://www.metrolyrics.com/pass-the-flame-lyrics-john-elefante.html

and hopefully another link below to the music…Enjoy!

JOHN ELEFANTE LYRICS

OVERVIEW / LYRICS (SEE ALL) / PHOTOS / VIDEOS / NEWS

Pass The Flame Lyrics

from Defying Gravity

John Elefante - lyrics

Three a.m. – a baby boy; a new life began
I held him in my arms and
knew one day he’d be a man
And soon I’d have to tell
him that this world is not our home
We must give our lives to Jesus;
we are not our own

But for now just let me hold you,
a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make him Yours to keep
And then I whispered in his ear
There is something you must hear

Chorus:
Any way the wind blows
Don’t you think that God knows
We must pass the flame
We must pass the flame
We are the light in a darkened world
We are the fire on the arrow
We must pass the flame
We must pass the flame

She was a portrait of innocence
I took her by the hand
For better or for worse we vowed
that with Jesus we’d stand
We would instill upon our children
that this world is not our home
We would tell them that our
treasure is the promise that we own

But for now just
let me hold you a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make them Yours to keep
So let me whisper in your ear
There is something you must hear

Chorus

And Lord, help us teach Your children well
And turn embers in to fire
Make Your love their soul desire

The doctors came into the room;
the news was not too good I said,
“Daddy, if I could take your place,
you know that I would.”
He said, “Son, please don’t worry
go and be there for your wife
You know we’ll be together in
an everlasting life.”

Then I said, “Dad, I want to hold
you a little while
Let me adore you while you sleep.”
Thank You, Lord, for such an angel
Take him home to keep
And then he whispered in my ear
There is something you must hear

Chorus

Chorus

Songwriters
DINO ELEFANTE, JOHN ELEFANTE, GEORGE MARINELLI JR, GEORGE MARINELLI

Published by
Lyrics © BMG RIGHTS MANAGEMENT US, LLC

Read more: John Elefante – Pass The Flame Lyrics | MetroLyrics

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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

Rarity & Comfort

Here’s a snippet from an article from Special Needs Parenting, original is at this link:
http://specialneedsparenting.net/not-as-rare-as-you-think-you-are/I heart someone who is rare 2016

“YOU ARE NOT AS RARE AS YOU THINK YOU ARE!

Raising a child with a chronic illness, disability or special need can often be a bone-achingly isolating existence.  The stares, exclusion, judgment, and hurtful comments can sometimes make caregivers like us feel like we are serving time in a penal colony, far from the comfortable normalcy of the average family. Without realizing it, well-meaning family and friends can push us further to the margins with their suggestions, pointers, and unwelcome recommendations.  (Thank GOD for places like Not Alone!)

Add to this isolation a rare diagnosis, and parents have an entirely different cluster of challenges.  In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.  For those caring for a child who has a diagnosis in this category, the stress only increases as…

  • Getting to that proper diagnosis can often be a huge struggle.
  • Cures are non-existent.
  • Treatments, if there are any, are extremely expensive.
  • Information on the condition can be difficult to find.
  • Practitioners specializing in the diagnosis are only available at major medical centers, if at all.
  • Schools are completely at a loss when it comes to comprehensive understanding of the diagnosis.
  • Pity or confusion from others seems to multiply exponentially when they learn a child has a rare disorder.

This cluster of added challenges can make us feel unenviably rare indeed.  We can buy into the lie that no one in the world understands what we are going through.  Nothing could be further from the truth!

YOU ARE NOT AS RARE AS YOU THINK YOU ARE!

The Old Testament prophet, Elijah, bought into a similar fallacy after he had confronted the prophets of Asherah and Baal.  In 1 Kings 19, Elijah flees for his life, whining to God, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.” (1 Kings 19:10, NIV, emphasis mine)  Later in the conversation, the Lord reveals to Elijah that he is certainly NOT the only prophet left.  He reassures Elijah and directs him how and where to unite with others who share his commitment to the Lord.

God has done nothing less amazing to refute the false, isolating beliefs of families in this day and age.”

Not As Rare As You Think You Are was first posted on February 17, 2016 at 12:00 am.
©2014 “Special Needs Parenting”.

Author Bio:
Barbara Dittrich
Executive Director at Snappin’ Ministries
Mother of 3 children, all of whom have a variety of diagnoses, Barbara is the foundress of Snappin’ Ministries (www.snappin.org) and currently serves as Executive Director. Besides being passionate about sharing the hope of Christ with parents, Barb is active in legislative advocacy, and serves as a partner and ambassador for rare disease.

I don’t actually know about the rarity of the diseases/diagnoses we’ve faced with our son.  When he had the brain tumor the type of tumor he had was rare for a male and for someone his age.  Many of his vascular atypicalities are extremely unique–does that equal rare?  Prior to the Liver Transplant the underlying liver condition, Congenital Absence of the Portal Vein, was a very rare condition.  If memory serves I looked this condition up at the hospital, accessing medical literature via computer not usually accessible to me seemed to show that this condition has only been written up a handful of times, I believe less than 20 times, over many years after having been first discovered during an autopsy in the 1700s.

When my son was an infant and still in the NICU I spent significant time accessing that hospital’s medical library looking for info on his then known conditions.  I couldn’t find material (granted I didn’t ask for assistance and it could be out there) that linked more than a couple of his conditions.

We’ve undergone numerous rounds of genetic testing, including “exome” testing where Josiah’s DNA was compared to immediate family members, in the search for the elusive, yet presumed, genetic syndrome he “has”…All syndromes suspected have been found to be negative.  At special needs events we’ve had conversations with others who have suggested the possible “condition” present, but subsequent testing has said No.  If he Does have a genetic syndrome, it is either so rare or such an atypical presentation of a more common condition that it seems unlikely to ever be identified, or apparently treated…

Whether or not my son’s conditions are “rare” or not…the sheer volume of conditions and the existence of so many issues overlapping and interweaving in his life makes it “seem” rare in totality.  I would Love to Hear from Anyone out there who has dealt with ADHD  AND Autism AND Congenital Heart AND Liver issues (& Transplant) AND Brain Tumor AND Learning Disabilities AND High Blood Pressure AND Sleep Disorders AND Neurological & Sensory Impairments AND Growth Hormone Deficiency AND Hernias AND RSV AND Ear Issues AND Eye Issues AND Depression AND Anxiety AND Obsessive Compulsive Disorder AND Asthma AND Prematurity AND Twinsanity AND IUGR AND you get the idea…

Here is a link to the blog from the group affiliated with the above quoted article, with apparently daily postings from a Christian perspective:
http://www.comfortinthemidstofchaos.com/

I even find the name of their blog comforting, for chaos is something we’ve come to live with, endure, and eventually embrace…it is a way of life for families dealing with Special Needs. I used to think the chaos was more a function of so many kids so close together and the energy & upheaval that accompanies that family composition. When one of my brothers started having a lot of kids I used that word “chaos” in describing family life implying that he might be facing that scenario too. It came across as offensive to him, perhaps his household wasn’t chaotic like ours was…or perhaps his wife kept the chaos enough under control that it didn’t intrude on his personal space the way our chaos intruded on my space…perhaps he didn’t like the nomenclature and found that offensive, or perhaps he had a tad bit of denial of their actual status.

Any way, I hope to partake of the offerings at the above blog on occasion. Being people of Christian faith, yet also facing the Fact of the Chaos that seems ubiquitous with Special Needs living and parenting is an important reality check. Just like an alcoholic will never approach AA nor get help for their alcoholism if they never admit/acknowledge that they Are an alcoholic, so, as a parent facing complex special needs scenarios (both present & historical) it is difficult to receive help for the “chaoticness” of life if one doesn’t first acknowledge that it exists.

Sometimes I have found the “advice” of people of faith to be frustrating in the extreme. Some seem to focus only on the God’s Blessing side of life, virtually supplying a ready-made guilt trip if you are experiencing more of an “in this world you will have tribulation” type of an existence. It’s not that God isn’t meeting your needs or supplying blessings and sustenance in the midst of the storm(s). However pretending that the hard road is really the easy road doesn’t offer much comfort to someone on a seemingly hard road pathway–a journey not necessarily of their choosing nor the result of sinful behavior or bad choices. When we, as believers, Must walk that difficult path (and of course the Lord is the One who supplies All that we need to endure and hopefully overcome) I for one do not receive much/any comfort from others who minimize or disregard the pain, hardship, and suffering that are constant companions for such a trek; in fact I do Plenty of my own minimizing (when Monday’s Doctor said something like “you have been through a lot” I looked at her funny because I really have no frame of reference about all of this and feel guilty for “whining” if I try to offload/explain some of where I “feel” like I am)…

Well, all that to say I have hopes to encounter a measure of comfort and support from the above blog. Perhaps it’s because I’ve been a lifelong reader, but sometimes there can be much gained from the written word of others who have also traveled a challenging path. Years ago I read a Reader’s Digest article about a man who survived a small plane crash in the frozen wilderness and hiked out to get help for the even more severely injured other survivor. This hiker had no appropriate clothing or supplies. He also had a broken ankle. His hardships and perseverance were a great inspiration to me. Having had a sprained ankle a few times and basically crying when a bed sheet touched it I cannot even imagine the level of pain he endured in his quest for survival…

Anyway, speaking from within the current emotional pain of the fallout of further disappointments and systemic “abuses” recently endured, I am hopeful to encounter testimonies via the above blog that will be an encouragement and inspiration.

We are not alone, regardless of what it may “feel” like. The Lord has promised “I will never leave or forsake you” and that is a promise worth clinging to! Especially during those seasons when “chaoticness” overwhelms…

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