Tag Archive | WrightsLaw

Stella’s Place Comments & Tom Thompson’s Obituary

I just wanted to copy/paste some material that I posted at another blog in case any of you might be interested in some of these things…& it saves me writing it up again!

Blessings to All,

Valerie

From the below site (well worth the visit & extended stay within & about!):

General Discussion, Wednesday, July 12, 2017

Here’s my stuff, obviously:

Hi, I’m pretty new around here but I wanted to share a “good report” about my son. Some of you have visited his new blog, JosiahsFreakShow.wordpress.com at the urging of Menagerie at the Conservative Tree House.

We’ve had a busy couple of days (following an extended 4th of July stay in Northern Michigan) seeing a surgical pre-op clinic Monday & “today” (actually Tuesday, but it never “feels” like it’s a new day until I actually/eventually sleep!) at the Liver Transplant Clinic AND the Brain Tumor Clinic. That’s a lot to process, even for us.

Anyway, the upshot is that there is no apparent (re)growth of his Brain Tumor since it’s removal back in 2010…and for the first time he will be allowed to go for FOUR Years before another Brain MRI & return to the Pituitary Clinic!

He is also almost exactly 4 years post-Liver Transplant now & looks like he may be able to begin the weaning off of anti-rejection meds following a (relatively minor, though 18th overall) surgery planned for later this month! This is almost a year sooner than they’d previously stated protocols would allow such attempted medication weaning–perhaps a sign of how well he’s doing…

These are all huge praise reports from our standpoint…& my son is quite relieved since he had been “gearing up with the Lord” to prepare for the possibility of more “bad news” & medical challenges, especially in the Neurosurgery arena. We are so thankful for good reports.

I wrote up many details about these visits, & previously about many medical & special education challenges for/about Josiah, at this blog, if anyone is interested in that type of material…

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

There are also details about our ongoing & historical journey, especially as relates to managing Josiah’s needs, at my wordpress blog here

SpecialConnections.wordpress.com

Some people have been blessed and encouraged by our experiences & faith-affirming approaches to the complex & difficult medical & advocacy battles we’ve faced…so all those links are by way of an FYI, if they might be beneficial, inspiring, or encouraging to others.

God Bless You ALL…& God Bless America (& restore Her to founding principles & values!)

(I wanted to post a photo of Josiah here, but don’t know how to do that…so here is a link to the photo I’d wanted to share, fyi)
http://www.carepages.com/carepages/JournalingForTheJazzman/photos/5672780

Blessings,
Valerie Curren

  • PS I really only began the wordpress blog as a form of an outlet to cope with the massive abuse/betrayal of the special education system (not that I in any way believe in the Nanny State)…in attempting to assert, protect, and redress issues related to my special needs son’s “rights” “guaranteed & protected” in Special Education law! I was/am an isolated parent dealing with extremely complex issues over many years who took advocacy “training” from WrightsLaw.com to heart & attempted to put it into practice in defense of my son…anyway some perspective on that whole debacle can be gained at this early blog posting…& the inspirational article cited is also well worth the read for anyone who struggles in these arenas…

    https://specialconnections.wordpress.com/2016/02/18/commenting-on-only-the-rich-will-have-rights-article/

    Thanks for providing a place where we can share things on our minds & hearts!

 

Eventually I’d like to take a page out of Stella’s “book” & perhaps have some guest posts and post even more things of wider ranging interest…but one step at a time…

If you’ve stopped by here for any reason, or even just by accident, thanks for taking the time to read a bit about our situation, to pray for our needs, to share an encouraging word, or even just a passing kindly thought.  We hope you are doing well, but if you struggle (as we all do from time to time) we would be happy to pray with/for you and encourage you as best we can.

In Christ,

Valerie

PS here’s that picture that I’d wanted to post at Stella’s site, and the associated comments, from the above noted link…

56765_100_3671_display

Josiah undergoing pre-op procedures before the Brain Tumor Surgery Summer 2010

Posted Jul 14, 2012 8:07pm

JOSIAH . . . the bravest young man we know. We love you and are keeping you in our prayers.
Cousins Tom and Julie

 

As an aside, this above comment on Josiah’s picture is especially meaningful to me since Tom has recently died & Julie has been in a nursing home for a number of years & no longer actively follows along with Josiah’s needs…& I really miss her wonderful input & encouragement…

Here is cousin Tom’s Obituary…he is officially Hugh Orr Thompson, II but has always been known as “Tom” within the family to distinguish between himself, his father, his son, and most recently his grandson–Hugh IV…

Obituaries & Words of Condolence

Thompson, Hugh, Jr. Obituary
03/19/2017

Hugh Orr Thompson, Jr., of Troy, Michigan and Gaylord, Michigan, passed away Sunday, March 19, 2017. He was 76.

Hugh Thompson was born to Dr. Hugh and Bernice Thompson on November 16, 1940. At the age of 22 he married Julianne Weiskotten and the two spent 53 years together at the time of his passing.

Hugh was active in the Boy Scouts with his children and was also a proud member of the Shriners. In his spare time, he liked snowmobiling, boating, flying, fishing, and even water-skiing in his youth.

Hugh is survived by his wife, Julianne; children Hugh Thompson III (and his wife, Hanh) and Bill Thompson (and his wife, Carrie); and grandchildren Halle Thompson, and Hugh Thompson IV. He was preceded in death by his parents Dr. Hugh and Bernice Thompson, and sister Karen.

There will be two funeral services. The first will be held on Friday, April 7th at the Church of the Nazarene in Troy, Michigan at 2pm with visitation beginning at 1pm. The second will be held on Saturday, April 8th at Nelson Funeral Home in Gaylord, Michigan at 3pm with visitation beginning at 2pm.

In lieu of flowers, memorial contributions may be made to The Alzheimer’s Association, or the Humane Society.

 

Condolence Messages

From: Don Walworth
Northport, MI
Contact
31-Mar-17

You will be missed my friend! We spent many a summer together on Otsego Lake together. May peace be with you

From: Bill and Elaine Stoddard
DEARBORN, MI
Contact
29-Mar-17

Tom has been not only a cousin but best friend to Bill since early childhood. His wife, Julianne is likewise a most prescious friend and cousin. We pray for God’s comfort to all who will miss the earthly presence of this honorable man of good character and integrity. He is much loved, by many.

http://nelsonsfuneralhome.com/obituary-view.cfm?obituaries_id=935

The condolence messages from Don Walworth & my dad Bill Stoddard are from the surviving “Bunns” of “The Three Bunns”…a nickname this trio of mischievous young men gave themselves during all of the many high-jinx of their youth (I do not know the meaning, origin, or purpose of that name).  There are many wonderful stories about their Summers at Otsego Lake that often get revisited with the newer generations as the years go by…& I love to instigate the telling of such tales!

Image result for telling tales campfire

One bit of a family history tidbit, Tom & Julie met at my parents’ wedding and married about a year later.  My dad recently said that Julie told him that she fell in love with Tom at first sight & knew she would marry him even when she first met him.  Julie’s mother and my dad’s mother were very close friends, I believe they were either school teachers or involved in church activities with each other.  They always wanted their husbands to meet, but neither of the men were interested, being too far apart in interests & lifestyle.  Tom Weiskotten, Julie’s dad, was some type of minister (I believe) & my Grandpa, E. M. (Elzine Munger aka El, Al, or Lefty) Stoddard was a self-made outdoorsman who ran his own Sunoco gas station in Detroit–Stoddard’s Superior Service!  Anyway the wives eventually got their husbands to meet & the guys became fast friends.  Tom W. died while his daughter was quite young so when it was time for her to get married it was my Grandpa Stoddard who walked her down the aisle to give her away to his nephew!  We actually called Julie’s mom Aunt Julia because she was family (by love) even before she was family by marriage!

Nelson’s Funeral Home in Gaylord, MI has handled many of the deaths in our extended family over the years, including Tom’s parents, Hugh & Bernice Thompson, his sister, Karen Hansen, my grandparents, Elzine & Vivian (Bernice’s sister) Stoddard, my great-grandparents, Rowland & Florabelle Thompson (Bernice, Vivian, & Thurman’s parents), and my great uncle & his wife, Thurman & Mary Thompson.

Image result for autism super power

In fact at Uncle Thurman’s funeral many years ago Josiah was able to meet some of Karen’s grandkids that were also autistic.  Josiah used to point out Nelson’s for many years whenever we went to Gaylord & remark about Thurman’s funeral that had been there, one of the early indicators of some of his unusual memory & location skills (he’d met Thurman maybe once briefly but recalled events for many years without promptings or reminders, even when passing Nelson’s less than once in a year–it wouldn’t surprise me if he still could spell out the Thurman/Nelsons details on a subsequent Gaylord trip–such is part of the miracle & mystery of autism, at least Josiah style!)

Image result for autism super power

Image result for pine beach, otsego lake, gaylord, michigan

bing.com image for Pine Beach, Otsego Lake, Gaylord, MI

The above picture is pretty close to the sunset view from Tom & Julie’s cottage on Pine Beach, just around the Pointe from my parents’ Cottage on Otsego Lake…

So I need to actually get some sleep & may be getting visually “slap happy” but I couldn’t resist copy/pasting a couple of autism super power images that likely could fit better in other posts I’ve done, but I want to be able to find them again so they are finding a “temporary” home here now!  Blessings, Valerie

I see my brother Curtis doing Chris Farley-esque “air quotes” based on my writing style & am basically cracking my own self up!

Image result for chris farley air quotes meme

Image result for autism super power

the images in this post were found using the Bing.com search engine…

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.

See the source image

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/

See the source image

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

See the source image

Adding the below link on 7-16-19 I realized that our carepages blogs have ended due to the service closing.  So if anyone wants to really wade into the weeds here is where we are sharing some of our journey online:

I archived the CarePage about Josiah’s needs here:

JazzmanJournal.wordpress.com

Josiah & I archived his CarePage here (& he continues to add things):

JosiahTheSecretWeapon.wordpress.com

I continue sharing about Josiah’s journey (& the family’s to a lesser extent) here:

https://www.caringbridge.org/visit/josiahcurren

Josiah is on Facebook & Twitter; here is his twitter feed:

PPS  Here is a true tale from a bit of the other side of the equation, hopeful & healing!

https://wqth.wordpress.com/2019/02/03/make-your-house-a-sanctuary-this-spring/

See the source image

A few other posts I’ve done that touch on the theme of this post loosely:

https://specialconnections.wordpress.com/2018/08/18/complex-ptsd-personal-touchpoints/

https://specialconnections.wordpress.com/2018/09/09/special-needs-parenting-trauma-ptsd/

https://specialconnections.wordpress.com/2018/09/04/special-needs-parenting-some-ancillary-aspects-encouragements/

https://specialconnections.wordpress.com/2017/06/13/thoughts-on-i-cant-do-this-special-needs-life/

https://specialconnections.wordpress.com/2018/10/17/special-forces/

https://specialconnections.wordpress.com/2018/08/14/insights-on-spiritual-warfare/

Please let me know if anything I’ve shared blesses you.  God Bless!

See the source image