Tag Archive | issues

Commenting on a Transplant Tale

I’m still coming to grips with a sea of emotions in relation to my son’s Liver Transplant (among many other medical, educational, and interpersonal issues surrounding his life and my intense involvement in caring for his myriad needs) so it is always with a bit of trepidation that I approach other’s stories about the Transplant Journey.  This arena represents a potential emotional hand grenade for me personally & it’s never certain what might cause the pin’s removal leading to potentially devastating internal destruction.

The article below was impacting enough that I just felt compelled to write a comment afterwards, which I wanted to document here and share with my readers and also give myself a known repository of this particular topic in case I want to return to this article again…like for inspiration to gear up for when we finally contact the “Gift of Life” organ registry to attempt a contact with the donor family to express our deepest gratitude.

Such a contact has thus far remained beyond my personal ability to approach except in the most theoretical terms.  It’s hard to know where to begin in expressing the deep gratitude for the life-giving sacrificial gift this other family has provided.  We spent so much time while waiting for the Transplant in prayer for the family and the donor, asking that the Lord would be involved in all their lives, that they would each have a saving knowledge of Him, that there would be such wonderful memories made and no regrets for things left unsaid or undone with the donor.  Contemplating the eventual loss of such a loved one was almost more than I could bear.  What do you say when the Liver Transplant doctor says that your son’s “ideal candidate would be a 12 year old gun shot victim”.  I was more overwhelmed by  the other family’s impending loss than I was by our own upheaval as we awaited this amazing and generous Gift of Life.

Complicating such contemplations is the nature of my son’s complex medical status.  Some staff on the Transplant Team mentioned that in some locales they wouldn’t even offer a transplant to someone as complex as my son (the implication being that his autism or other atypicalities, not necessarily medical in nature, may have lead to a form of disability discrimination against him).  How will this other family feel when they discover that their child’s Liver Recipient is disabled in myriad ways?  What if God has yet to have answered some of the prayers noted above and this family is in a spiritual desert and cannot grasp the value of my son’s life because of his disabilities?  What if learning about who has received their child’s liver they are even more devastated by who/what he is and this adds immeasurably to their grief, pain, and loss?  Should I spearhead the effort to contact them and generate conversations periodically within our family, or at Liver Transplant Clinic Visits (we have another bi-annual one next week), to help prepare us, or should I wait for God to so move on my son, husband, or other family members?  Should I be the one to make the contact or should my son (who has various communication challenges but is incredibly gifted in spiritual insight and compassion) attempt this solo?

Just writing some of these lingering questions down reminds me that this is a process that needs to be bathed in prayer.  I need to reach some place of peace and serenity so that regardless of the donor family’s experience/reception we will feel “persuaded” in our ultimate approach in contacting them.

Any of you reading this that know the Lord please lift us up in prayer as we continue to process and prepare to eventually make contact via Gift of Life and express our Thanksgiving for this family’s Gift of Life to our son!  We don’t want to be among the 9 lepers who didn’t return to thank the Lord for the healing…

Image result for 10 lepers

image from bing.com image search

Image result for luke 17:11-19

image from bing.com image search

image from bing.com image search original from blogspot.com

Please consider reading the original story of this group of Transplant Recipients meeting the mother of the Gift of Life donor…what testimonies!

Here is the link to the original article:

https://gma.yahoo.com/face-transplant-organ-recipients-meet-donors-mother-first-181313919.html

Face Transplant and Organ Recipients Meet Donor’s Mother for the First Time (ABC News)

Here are my comments left at the above article’s website:

This story is profoundly moving to me as the mother of a liver transplant recipient. My son was a teenager while going through the transplant process and as a strong Christian was prepared to possibly die if the surgery was unsuccessful. (Before his transplant operation he wanted to tell the surgical team “If I die during the surgery don’t be sad because I’m ready to go home and be with Jesus”–wow). As a young man on the Autism Spectrum he had a hard time understanding that for him to receive the needed whole liver a donor would have to die, so he initially thought he would be murdering someone to get their liver. We had to reassure him that it was ultimately God who would decide who lives and dies and it would all be in His hands…we were not causing the other family’s desperate scenario…

One way my son was comforted in being the recipient of the Gift of Life from someone whose life was cut short was that we agreed before his procedure that if he didn’t survive we would be sure to donate all of his usable organs and tissues so that others would also receive such life-sustaining gifts from him. In fact, while we were waiting for “his” liver we were contacted by the Liver Transplant Team to be prepared as a back-up recipient for another “perfect liver”, a seemingly unprecedented event. At that time another child was higher up on the Transplant List but was so ill that it was possible that they wouldn’t survive the procedure and my son who was to be “waiting on deck” would then get that other liver. This situation was just so unbearable for me personally, thinking that already one family was losing a child for my son to receive a liver was already overwhelming, and it would be incredibly devastating that TWO people would die so that my son would benefit. We called family together and beseeched the Lord in fervent prayer on behalf of this other child…and thankfully they (apparently) survived the surgery and were still doing well more than a year later when my son finally received his transplant. Being involved in a Transplant situation is deeply moving, challenging, and ultimately a lifelong journey of discovery.

Thank the Lord for those brave and generous families who choose to give the Gift of Life during their own season of heartbreaking loss and bereavement!

After checking back at the original article here is a reply to my comment that may have been written by someone who is professionally involved with transplants, and this is such an encouragement to me as it may be representative of other’s perspectives:

  • Avatar
  • these are the stories that make participating in an organ harvest so rewarding. One family’s loss can lead to so many benefits for other families, it is unfathomable. However, the pain, the heartache the loss is so palpable, during our surgical timeout the donor identified…the directed donations are identified as well as research donations. These are huge and incredible gifts

 

 

 

 

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

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

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

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

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

Autism: Different, Not Less:

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

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

the image above is from this pinterest page

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

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

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

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

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

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

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

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

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

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

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

Philippians 3:14King James Version (KJV)

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

King James Version (KJV)Public Domain

above scripture from BibleGateway.com

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

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

Blessings,

Valerie

Autism—It’s Different in Girls

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

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

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

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

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

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

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

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

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

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

Best Regards, Valerie Curren

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

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

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

http://theemergencesite.com/AutismSpectrumMenu.html

Image result for autism adhd

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