He is Making America Great Again! We are Blessed & Thankful…
So my son, Josiah, and I returned to the University of Michigan Hospital today because I’d rescheduled his MRI of the head (aka Brain Scan) from yesterday afternoon to this morning, so he could participate in a special needs social event last night. We rarely have back to back hospital runs so this was kind of “fun”…
- Up late, running late, getting to the hospital “on time” cause we left a cushion!
- No traffic “cops” at the parking structure entrance like yesterday (when a screaming motorist & screaming parking lot “enforcement” personnel made me think someone just might pull a weapon–it’s Detroit area, after-all–& for once Josiah decided to Not escalate an already tense situation!)
- Doing loop-de-loops in the parking structure looking for a space…and Josiah feels some dizziness coming on (he’d already complained how he got dizzy at his recent Liver MRI & was concerned about dizziness from the procedure)
- Offering to drop J off near the entrance we might use (depending on what level I actually get to park on) & he finally takes me up on the offer–so hoping he actually follows instructions & waits in the right place–praying all the way…
- making our way through the various “buildings” (interconnected) of the hospital complex to the appropriate elevators & descending to sub-basement B-2
- walking the halls to the Adult MRI department (his Liver MRI was in the Mott Pediatric part of the hospital the other day) with Josiah getting spooked (it looks older & less kid friendly here) and saying that it looks like we’re going to the morgue (where we’ve never been but maybe he has in video games or shows?)
- filling out the “abbreviated” pre-procedure forms (3 pages)–thankfully they don’t ask about All Organ Systems, like the pre-op paperwork, for that level of recall is really exhausting
- Josiah wants to fill out his own forms (which is great)–I finish page one & give him page 2 and he gets stumped right out of the gate when descriptions of prior heart surgeries/devices are needed–sigh–I want to support his independence, but I know these things better, can write in an adult hand (his printing is large & grade-schoolish), and he’s already said he doesn’t want talking so wouldn’t appreciate the amount of verbiage needed to “coach” him here…I complete p 2 & he refuses p 3…
- no problems in changing, getting a locker (I keep the key for him), nor getting an IV–I’m not allowed back with him (he’d requested me to accompany him at the Liver MRI) and he actually goes along with the staff without issue!
- I remind the technician that he got dizzy when they moved him in and out of the other MRI machine & she says she can accommodate him there…since he didn’t complain of dizziness afterward it appeared like things went OK!
- sitting in the waiting room working on a book (I finished), a sudoku puzzle, and a word search…then perusing a number of photo based magazines where I’m bombarded with guilt-trips of the leftist agenda ad nauseum–sigh…no napping…a TV blasts out of sight while trying to sleep & I recognize Chip & Joanna Gaine’s voices from the Fixer Upper TV show…but too tired to attempt to watch this
- he’s done & we depart without issues & decide to swing by the “interfaith” chapel that’s just outside the elevator on our return trip to the 2nd floor
- We are alone in the “chapel” so we search for any signs that Christianity is even one of the faiths that might be represented in that room…there’s no cross visible, but prominent Islamic paraphernalia, slightly reserved Judaism items, and eventually a “New Testament with Psalms” Josiah unearths under one of the seats
- Josiah reads a Psalm from the lectern (we’re in full view of some security camera–yikes, does it have audio?), I sing a version of the 23rd Psalm aloud. Josiah and I both pray aloud for many things/people “in Jesus’ name”. Josiah begins singing “How Great Thou Art”–a song that always reminds me of my father & the first church of my childhood–solo (he asks me to Not join in) when a swarthy looking young man enters & sits adjacent to the Islamic prayer rug; J voluntarily stops singing & we decide to leave to give the other person privacy
- Traversing 3 different buildings to get to the Family Resource Center, where we use the computers & partake of complementary snacks/drinks
- strike up a conversation with Cameron & his mom about Cameron’s medical needs (brain tumor found 4/30, two surgeries, stroke, etc)–he’s wearing some type of helmet to cover his missing skull…I offer to post his prayer needs on my CarePages medical blog & they agree…we give pointers about living at the hospital etc.
- J & I both work on both CarePages.com and on WordPress.com blog accounts and attend to some email business at adjacent computers
- I decide to use one of the consult rooms to call my husband (I don’t have a cell phone) & they are now locked, a new development since my last usage
- get a staff person to let me in and complimenting her on her new hairstyle leads to an in-depth discussion about her recent Cancer & Heart Attack scare. We share various stories about medical issues, hospital employment (in my former life), and dealing with overwhelming emotions. We go on a bit about Transplant issues, me from the family perspective & her from working as staff in an organ procurement organization. She tells of a family that she turned down as a transplant donor because they didn’t want any of their son’s organs going to any N-words–Wow!
- we’re interrupted by a volunteer & later an MSW co-worker so we never “finish” our conversation…are those discussions ever really done?
- Quick phone call with my husband, who’s still at work
- J & I wrap up computer work & head up to the 12th floor for Skyline Cafe, the Thursday evening complementary meal & music offering sponsored by Delta Airlines & managed by Bob (musician) & Byron (social worker)
- We assist two different families with in-patient kids on IVs in the elevator
- We enjoy nearly an hour of acoustic guitar & vocal music as we eat pizza, etc
- after the event wraps up we speak with Bob & his wife Tracy about my husband’s band, The Lively Pelts, possibly participating musically sometime–I’d cleared this planned discussion with my husband previously–(Bob says Skyline happens Every Thursday of the year, except Thanksgiving)…
- discover that Tracy & I met before as she’s actually the Pastor at the church kitty-corner from our own church–wow–small world (& I’d almost applied for a recent job opening there)…
- Josiah tells some tales from transplant & beyond & several eyes tear up…
- we finally head home during a rainstorm with just enough time to spare to take care of one errand before that business’ closing time; I get soaked to the skin…
- I send Bob the promised email about the Pelts…and we await to see if God might open yet another door in our lives…
As you can see, even a “simple” day at the hospital can get pretty involved…and exhausting. Josiah & I both did decently and had an overall good time, which was capped off by the blessing of Skyline Cafe, a pretty rare treat for us nowadays…
Well thanks for stopping by and sharing a bit of our experiences. Blessings, Valerie
PS Please consider keeping Cameron & his family in your prayers as they travel a new special needs pathway…I’ve written more about their situation here if you’d like more details:
Happy Father’s Day, Michael. I love you!!! Valerie
I’m so thankful for the heritage of faith! My own father has been an incredible example of godly fatherhood for my entire life. He has found the way to balance faith, fun, and fatherhood…and it’s been passed down to both his sons and his son-in-law, my husband, Michael. What a tremendous legacy…his children rise up and call him blessed!
My husband has experienced Father God as a literal father to himself, someone who grew up basically fatherless. Although his parents were married when he was born, their marriage dissolved during his early elementary years and his mom moved him nearly halfway across the country surrounding that divorce. He only saw his dad a couple more times before he died during my husband’s teen years. He later had a step-father, who being a strong Christian, lead both Michael and his mother to the Lord! This man has been gone now for nearly two decades, and was a thousand miles away during my husband’s own developing into a father years.
Michael is an amazing man of God, who has a near Abrahamic friendship style relationship with his Heavenly Father. He has overcome the odds of familial alcoholism and serial divorce and lives his life as a testament to the power of Christ to break the chains both within and about us. There are not enough words to convey the impact of seeing Michael persevere through the crucible years of Special Needs Parenting, and that is still the gift that still keeps on giving, though thankfully not with the same brutality as the early years! We love our special son, but he has challenged us in many ways–certainly beyond our own abilities to endure apart from God’s grace & strength…
My husband is such a blessing to me and to our four children…and also now to our new daughter-in-law. I really can’t wait to see where the Lord takes us on this wild ride that is marriage and family life in the (hopefully) many years to come.
Happy Father’s Day 2017
25 Years of Marriage
23 Years of Parenting
1 month of In-Lawing
Below is a copy/paste from my niece’s Facebook page. She is quoting a poem my brother Curtis wrote about our dad many years ago. [Correction per my parents, see Comments below, this is actually a poem that Ashley wrote for my brother Curtis on the occasion of his birthday earlier–my mistake…] These sentiments are so applicable to my husband, my father, my brothers, and presumably to my sons when they too are blessed with Fatherhood someday…having all had many examples of men doing Fatherhood God’s Way! Enjoy…
Thank you for the gifts you’ve given me. The gifts of laughter and story-telling and articulation and poetry. Thank you for teaching me math is my friend and for being a rock and a firm foundation to stand on. Thank you for lifting me out of the water when I go under and gasp for air. Thank you for always knowing how to catch me even if I flail in the air and come down the wrong way. Thank you for being a dad who knows how to be right but also knows how to be wrong. Thank you for loving Jesus and bringing generational freedoms to your children and your household. Thank you for all your prayers and healing. Thank you for stepping into soberness so that I could follow. Thank you for speaking life into others and being sometimes the only bright part of someone’s day. I love that your main goal with whoever you come across is to make them see the love of Jesus and also pee their pants. I love how God made you. And I love that He put us together. And since you are not on FB, I will tag your wife because I know you use her phone in equal amounts. And because I can’t help it, I am recycling your birthday poem because it’s all so true. You are one of my favorites. ♡♤▪¤
“What does it mean,”
“What does it mean?” you say
To have a dad who has fun
and knows how to play?
It means there’s games, and smiles,
and laughing galore
And tears rolling down cheeks
and more, more, more, more!
The more games there are,
the more creative our minds.
You see, dads who have fun
know how to seek, hide, and find!
They like to think out-of-the-box
and do the impossible.
Dads who have fun
are down right unstoppable!
What can’t we do
if we can climb the shelves at the store;
And throw cans of spaghetti sauce
at dinosaurs on the floor?
How about walking through forrests
and crossing tree logs,
To find the buried treasure of pirates
filled with chocolate coins and pogs?
When you have a dad who has fun,
nothing is boring!
So there’s no time whatsoever
for sleeps, yawns, or snorings!
Games abound by the dozen
and so does the fun!
Have you ever turned off the radio
and at the top of your voice, sung?
Have you ever crossed your legs
because you’re laughing so hard you might pee?
I don’t want to say it was me that did it,
but okay, it was me, it was me!
Dads are the best!
(But the fun ones are better.)
Your cheeks and your pants
just might get a tad wetter!
the power of fun!
Laughing is therapy,
I asked a doctor once.
When you laugh,
you gain confidence
which is the opposite of fear.
A dad who shows you to laugh,
shows you he cares.
My dad is funny
and boy, he sure is the man!
He’s my number one sitcom
and I’m his number one fan!
and in honor of the familial ADHD tendencies…
I recently read a provocative posting about the conversion of a well known atheistic Jew to Christianity…a criticism of the book bearing the testimony of this faith discovery written by a learned Rabbi, who periodically writes for PJMedia.com. Within the the lively and unfortunately contentious comments section was the below gem…worth further pondering, in my opinion…
I believe this is an historical symbol used by Jewish believers in Jesus…image is from:
This person’s analysis and perspective on the early genesis (excuse the pun!) of Christianity is well thought out and respectfully presented. I do not have direct personal knowledge of many of the “facts” presented here but I share this person’s writings so that further dialogue, research, and introspection could follow on from this.
As such, to briefly state my current perspective on this topic, I think the very best version of a faith heritage would (likely) be someone who was raised in the traditional Jewish faith and later on came to the “completed” knowledge of Jesus and their personal Lord. Savior, AND Messiah! I guess even better would be to be raised in a Messianic Jewish household replete with the beauty of the Historical Traditions of Judaism and the fullness of the knowledge of the completeness of the work of the Cross by our King of Kings and Lord of Lords. It is truly an extreme historical irony that the early leaders of “The Way”–which later became known as Christianity–argued amongst themselves as to whether or not one had to first become a Jew before becoming a Christian…as in being a Christian (in their minds) actually required someone to be a Jew first. Now the opposite distortion seems to be in play, in order to accept that Jesus is the (Jewish) Messiah you cannot be a Jew, for such a belief negates your very Jewishness–Wow!
In my personal history there is a loose degree of connection to this topic, at least from a theoretical perspective; my own mother was adopted as an infant and the desire to learn about that unknown heritage was (and continues to be) a key motivating factor in my initial interest in Genealogy (before this pastime’s unique additive tendencies took over!). It is still my hope that eventually my genealogical endeavors will unearth factual Jewish blood in my background (among many other as yet uncovered inherited enhancements of genetic/cultural/historical/racial/geographical etc facets)…even if I never am blessed with that overt cultural biological heritage. I am so thankful to have been “grafted” into the vine and to be a child of Abraham, by virtue of Faith, if not also by flesh…
I have on several occasions enjoyed teachings by Messianic Rabbis both on the radio and in person. The richness of the cultural heritage of the Jews is something many of us raised in the Gentile Christian faith cannot really come close to fathoming. I’ve even said on a number of occasions that it would be amazing for someone as a believer in Yeshua (Jesus) to be able to be fully immersed in some aspects of Jewish cultural tradition, like Hebrew school. Having attended a Seder (Passover) event hosted by Messianic Jews I found the experience incredibly faith enriching…especially as the host was unashamed to draw our attention to the clear parallels/foreshadowing of traditional Christian beliefs hidden within so many aspects of this treasured historical and traditional observance.
In an ideal world All believers in the One True God of Abraham, Isaac, & Jacob as well as Moses, David, Solomon, Job, and the Biblical Prophets would recognize the Way, the Truth, and the Life that is available for ALL in Our Lord and Savior Jesus Christ!
So enjoy the comment below…and feel free to check out the original article (at the link below) too…The comment was copied in its entirety with no editing on my part…and please if anyone chooses to comment here on this posting be considerate of others in how your phrase things since this is an obviously complex & controversial topic…
Hopefully I”ll be able to locate the lyrics and music to a very appropriate song…
Jew and Gentile, one in Messiah,
One in Yeshua, one in the olive tree.
Jew and Gentile, one in Messiah,
One in Yeshua’s love.
Help us Father, to love one another,
With humble hearts, Forgiving each other,
Heal our wounds, bind us together,
So the world might believe.
One in Yeshua’s love,
One in Yeshua’s love,
One in Yeshua’s love,
Sing it all together.
These lyrics are from this site (we have this song on a CD “The Road to Jerusalem”):
and this should lead to the music on youtube, hopefully…Enjoy!
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
Here is a convoluted cross posting (not sure if that’s the right term) from my CarePage about my special needs son. It contains the body of what I was attempting to send in reply to an article at the Pensive Aspie blog, but for some reason wasn’t posting…
This is so those thoughts aren’t just entirely lost to the ether…hopefully I can figure out what is stalling the comment posting at Pensive Aspie, but if not I can always refer her here…if it’s possible to discover another way to interact with her.
Trying to keep track of way too many threads in my mind!
[JournalingForTheJazzman care page post starts here]
I’m in the process of developing a Blog as an outlet and focus shift after the fallout from our recent special education/legal system battles. In the course of being more “engaged” in that particular WordPress blogging community I have been searching for writings by others that can be inspiring, informative, and edifying. To that end I shared (the bulk of, he was getting restless) a posting by a Christian woman who also has Asperger’s Syndrome. This is in hopes of eventually getting Josiah to expand his voice, and reach, online…and to give him a forum to expound on other topics of interest to him that don’t usually get into his JosiahTheOvercomer page.
Here’s a link to the article to which my reply below refers:
She has some great insights here from within Autism that can be of help to any of us who love, know, or interface with people on the Spectrum…Please consider reading the original posting.
Blessings to you all, and thank you so much for your ongoing prayers for our family. We really appreciate this loving support!
[Comment to Pensive Aspie article starts here, which was also incorporated into the JournalingForTheJazzman care page post]
Dear Pensive Sherri,
Thank you so much for sharing this detailed and insightful post. I just shared it with my 20 year old PDD-NOS (atypical autism) son as an example of a blog written by someone on the Spectrum. Even though he wasn’t prepared to partake of every word, like I was, it appeared to be inspiring and to crack the door just a bit for him in the concept of creating a blog where he can speak in his own voice.
We are also a Christian family and my son has had many challenges that go well beyond the Spectrum “aspect” of his persona. I’ve been writing a CarePage blog about many of his needs (primarily) for several years now. That labor was begun when he was diagnosed with a Brain Tumor and Liver Masses/Tumors nearly simultaneously. Thankfully we have gotten through Brain Surgery (Pituitary Adenoma resected/removed Transphenoidally/through the nose) and a Whole Liver Transplant…
Most recently we’ve been facing numerous uphill battles in relation to FAPE (Free Appropriate Public Education)…or in our case, the lack thereof! We are currently in the process of seeking Transition support since this aspect of his IDEA mandated education was completely disregarded by our local school district…and he has “graduated” even though he cannot even do 3rd grade math! His primary care physician has told me that “high functioning autistic kids” are the ones who really don’t get their needs met from the school system, especially in the area of Transition (preparation for post High School education, employment, & independent living). Did you run into challenges in that arena, if you don’t mind me asking?
I don’t know if your Spectrum issues meant the need for Special Education Services during your earlier education…but I would truly value your feedback (as a wife, mother, person on the Spectrum, medical professional, someone with a heart for educating parents of Autistic Spectrum kids) about some of the issues we face…so here’s an invite to the Care Page about my son:
and one for the page he writes (mostly praises of the Lord) & some personal sharing:
finally, here’s a link to my recently acquired and in development WordPress blog:
I would absolutely treasure any insights you might be willing to share as I continue my own journey of trying to better understand, advocate on behalf of, prepare, inspire, pray for, and ultimately release into to God’s infinite and personal care my very unique, special, complex, and blessed son.
Thank you for sharing so much of yourself and some of the inside workings of the Autistic Spectrum mind. May God continue to Bless YOU and your family as you go forth in truth, strength, and grounded on the Rock love. You have inspired me so much!
wife, mother, counselor, sojourner…
4 kids (3 w/ADHD–one of whom has autism)
PS I have found significant comfort in many of the postings here, Christian parenting & special needs:
That website could potentially benefit from an article from your extremely unique perspective!