Tag Archive | Specific Learning Disability

Thoughts on “I Can’t Do This Special Needs Life”

Image result for special needs life

from Bing.com image search for “special needs life”

It’s always with a bit of fear & trepidation that I ever decide to engage the special needs arena more directly than daily life requires, especially when it’s mandatory (like IEP time).  Well, this short article came into my inbox and some of her thoughts below really resonated…

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes.  I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.”

from: http://www.keyministry.org/specialneedsparenting/2017/6/9/i-cant-do-this-special-needs-life

The bolded part in the above quotation is what got me back typing away here.  Through a series of seemingly random events I studied and graduated University with a Pre-Med Degree (BS, Bio-Medical Chemistry).  I did take the MCAT (Medical College Admissions Test) and did marginally well but just never applied to Medical School.  At that time I was getting burned out on an extreme science emphasis like my basically Chemistry Major/Biology Minor Degree had demanded; I needed a break.  Being pretty eclectic in my interests & “motivations” (if one can even say I have the latter!) I was just not really interested in then pursuing medicine right out of my undergraduate program; I ended up pursing Christian Counseling instead…

The ironic thing is that I partially made this decision because I “wanted to have a life” and thought the extensive studies and training involved in Med School would mean many years before I would get much reprieve or enjoyment out of living.  Amazingly, before a decade had passed, I too, like the mom above, was facing the most challenging of all patients, my own extremely complex special needs child, and truly my life would never be my own again…

Image result for sick child

from a Bing.com image search for “sick child”

Frankly I don’t know how anyone copes with the challenges, upheavals, sorrows, rage, exhaustion, confusion, depression, isolation, and tediousness of it all without the Lord’s saving Grace & Peace!  These extensive trials have driven our family to the Foot of the Cross time & time again.  And even with His “Peace that passes understanding” there are many days when we just have to slog it out…& it ain’t pretty either!

Image result for comfort in suffering

from a Bing.com image search for “comfort in suffering”

I still honestly don’t know what to do with all the “stuff” that has been crammed down into my soul with minimal if any real “processing” time or resolution.  It is difficult for me to make sense of some of those special needs experiences without some outlet for said processing–which is one of the reasons for the existence of this blog at all.

Only considering my “special” son’s particular needs, here’s some of what we’ve faced:

  • Pregnancy problems/IUGR (Intra-Uterine Growth Retardation AKA small for gestational age)
  • Prematurity, Very Low Birth Weight, 2# 6 oz (qualified for SSI in the hospital)
  • Failure to Thrive
  • Congestive Heart Failure
  • Complex structural birth defects
  • 2 1/2 months in the NICU (Neo Natal Intensive Care Unit)
  • Ambulance ride to a different hospital for Open-Heart Surgery
  • Living apart from my husband for 3 months during heavy season of stress
  • Inability to directly breastfeed my son due to his weakness, so nearly 3 months of pumping breastmilk for him to be gavage fed via a tube in his nose, or alternatively to feed his twin when we were apart because I was in the hospital with his brother around the clock…
  • Open heart surgery at 2 1/2 months & ~4 pounds; the night beforehand being the only time our entire immediate family was in one room together, as in I was preparing myself/us for the possibility that our son would die & that pre-op visit would be all the time that we ever had together as an intact family…
  • Urinary Tract Infection delaying hospital discharge, I discovered this
  • Relatively short time at “home”; Life threatening respiratory infection (RSV) leading to an across state ambulance ride and re-hospitalization, and the admission X-Ray revealing an unexplained broken rib so “formality” inquiries; he had a second RSV hospitalization when about a year old
  • Breathing Machine (Nebulizer) with meds & chest percussions
  • Seemingly endless vomiting with practically every feeding and/or dosage of meds
  • Various Proprioceptive & Vestibular interventions, brushing, joint compression, etc (mostly done by me)
  • Problems with hernias requiring near emergency surgery during the post-op phase from Heart Surgery
  • Visiting Nurses
  • Medicaid
  • WIC
  • County Health Departments
  • Numerous Medical Specialists with sometimes conflicting advice
  • In Home Therapy visits (PT, OT, Speech)
  • In Home Teaching, in three different cities
  • Preventive Care Services, support for a family in near crisis
  • Being written up in our local paper because of the uniqueness of our situation
  • Authorized coverage for respite child care so my husband & I could get a reprieve, but an inability to use this service because we couldn’t find anyone capable of handling Josiah’s needs and our other two or three kids…
  • Major behavioral & emotional problems
  • Balance Problems & Hearing Loss needing Myringotomy Ear Tubes surgically placed numerous times to help correct
  • Autism Spectrum issues, but not diagnosed early enough nor classic enough to get real help from the school system
  • Sound Field System in School
  • Neuropsychological Testing numerous times, virtually all data was ignored by school “professionals”
  • Unspecified Neurological Impairments
  • Balance, Equilibrium, Processing, & Sensory Challenges
  • Unusual Therapies; Sensory Integration Therapy, Music Therapy, Art Therapy, Social Skills Group, etc.
  • Early-On Program
  • Developmental Assessment Clinics
  • Virtually no “typical” twin experiences, nothing like what “the books” say
  • Complex staged birth defect surgeries
  • Positional Head Deformity, requiring an orthotic helmet to reshape the skull
  • Moving our residence across the state to be closer to adequate medical care (husband’s job change & our near year separation, except for weekends, during the entire selling/moving process)
  • Second Open Heart Surgery at about 4 1/2 years with statements implying that another heart surgery would be likely within a decade (though a 3rd surgery in this domain still pends)
  • High Blood Pressure, Blood Pressure Monitoring Machine, spotty compliance
  • Numerous Medications over the years
  • Social isolation for our son in particular, but our family as well, due to the complex challenges & lack of awareness on other people’s parts
  • Years of car rides, mornings, announcements of plans changing, etc that resulted in ceaseless screaming, hitting, kicking, etc…=familial upheaval
  • Years of deliberate “button pushing” of all family members, being a deliberate atomic bomb within the family=massive stress
  • Lifelong Pediatric Cardiology care
  • Lifelong Pediatric Urology care
  • Massive battles with Special Education after having positive Special Ed Pre-School experiences
  • Only one month in “real school” with his twin brother
  • Having to “repeat” a year of Special Ed Pre-school due to educational negligence, incompetence, &/or indifference & my own weaknesses in entering the fray
  • Severe Learning Disability in Math, misinterpreted as global delay
  • Tutoring
  • Being told for years we needed Advocacy help, but rarely finding any available and/or affordable
  • Community Mental Health, home & center-based care
  • Insurance challenges in getting needed services covered/provided
  • Respite Care, both in home and center based
  • Chronic Bedwetting, well into the teen years
  • Multiple Sleep Disorders requiring CPAP usage
  • Congenital Double Vision, eventually “corrected” surgically
  • Student Aides/Para-Professional involvement only after major battles with Special Ed even though doctors insisted this was vital at the outset of regular schooling
  • Massive Educational & Disability Discrimination…any real recourse here???
  • Learning about free advocacy training and materials but when pursuing them discovering the programs were cut; same now in relation to job training issues
  • Having a Brain Tumor and Liver Masses discovered at virtually the same time
  • Getting Cancer evaluations
  • Human Growth Hormone deficiencies, but no real treatment because of other complicating issues
  • Being accused by school staff of inappropriate behavior that he didn’t do, and not allowing a parent to be present to assist him in processing the situation
  • Brain Tumor removal through the nasal passage, so no visible scarring!
  • Ultimately needing & getting a whole Liver Transplant
  • Lifelong Liver Transplant Clinic care
  • ADHD, Depression, Anxiety, OCD (Obsessive Compulsive Disorder)
  • Unexplained dizzy spells, EEGs don’t reveal reasons
  • “Hypoglycemia”
  • Emergency Room Runs for injuries & once for an environmental breathing issue that I thought meant my son would die in my arms before we reached the hospital
  • Pervert encounters in the park as a child and at school as an adolescent, with major emotional fallout
  • Spiritual battles that periodically resurface & blindside & overwhelm him
  • Continuing to help him navigate the world, including processing why even though he and his twin brother are a minute apart in birth times their life experiences are worlds apart
Image result for comfort in suffering

from a Bing.com image search for “comfort in suffering”

Well, my oldest son has mentioned on a number of occasions how I “never use my education”, since I’m not currently in the workforce.  It has honestly taken every aspect of what I’ve learned formally, inter-personally, spiritually, and experientially to navigate the extremely treacherous waters that Special Needs Parenting has led us through.  Some doctors have kindly indicated that I have a virtual medical degree by way of this personal parenting experience.  Whatever I have become, much of it is now attributable to being a Special Needs Mom.  It has become a burden, a badge of honor/courage, and ultimately a blessing.  In God’s Kingdom He brings Beauty for Ashes, Light from Darkness, and Hope beyond Despair!

Though I didn’t ask for this calling, as much as it lies within me, I try not to shirk the attendant responsibilities.  We’ve spoken as a family on these matters a number of times and we all agree we wouldn’t change things, even if we could.  As my eldest son has said, “Josiah is the heart of our family!”  So we are Challenged, Confused, Cracked Up, and Comforted by his uniqueness.  He still sees the Lord with “unveiled face”, being so pure of heart.  The rest of us might be relatively normal by this world’s standards, but Josiah stands tallest and purest in the Kingdom of God!  It is all of our privileges to walk along side of him in this crazy, painful, wonderful life…

Image result for beauty for ashes

Image from a Bing.com image search for “beauty for ashes”

 

 

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Textbook Freneticism, Part Deux

So my daughter’s Freshman year of college has concluded and it’s time to return the rented textbooks.  This is making me re-visit the textbook acquisition process, to some degree, by way of a bit of a “de-brief” to avoid some of the pitfalls of this year’s search scenario to assist in streamlining future endeavors…

The winter semester began with an exhaustive & exhausting search for the best possible prices in hopes of not needing to reinvent this wheel in the future and to be able to better advise my other college friends in their own book searches…

The final source of this semester’s purchases was a bit of an inadvertent find.  I had already run several searches for Individual books at the website when I noticed an ability to search for Multiple Books simultaneously!  Here’s what we found initially at DirectTextbook.com:

Lowest Combined Price (All Bookstores)

*Click the book’s price to go to the bookstore

New Used Ebook Rental
9780393340730 – The Lifespan of a Fact TextbookRush MarketTextbookRush Market + $4.58 +
9781285436500 – Writing Analytically KnetbooksKnetbooks + + + $23.41
9780872206335 – Five Dialogues : Euthyphro, Apology, Crito, Meno, Phaedo Half.comHalf.com + $2.20 + +
9780872206410 – God KnetbooksKnetbooks + + $13.94
9780205863792 – The DK Handbook : Researching, Desigining, Documenting, Proofreading, Arguing, Writing, Editing, Revising AlibrisAlibris $8.00 + + +
(1 new and 2 used and 2 rental) $51.01
Shipping and Handling: $10.47

Lowest Total (All Bookstores) $61.48

Applicable Coupons

http://www.directtextbook.com/multiprices/14243

I don’t remember if I actually clicked on the individual coupon links from the above table.  I may have done so to also compare those coupons to ones available from this helpful site:

https://www.retailmenot.com/coupons/books?c=8441883

By the way, I read about the RetailMeNot.com website from one of the many articles perused to enlighten this year’s textbook search process.  Those articles were found by searching for best or cheap and textbook in various search engines, I believe.  Some of those articles were what inspired the original “Textbook Freneticism” posting, hoping that My Post may assist others, and be a good reference for me/us again, when needed…

Based on our experiences with the Fall Semester, we still began looking at the college campus’ bookstore, Barnes & Noble.  We input my daughter’s class schedule at the campus B & N site to get a listing of required materials for each of her classes.  We discussed them to determine which ones she actually Needed.  I created an electronic document containing all of the info on her schedule, and the course requirements.  This helped to document the baseline data from which we would then work.  We discussed my daughter’s preferences for material style based on her first college semester (hard/soft-cover vs binder style vs electronic, etc.) including whether she would prefer to own an item.  Since my daughter has ADHD her learning style needs were also considered along with the knowledge that she was late in returning some rental books last semester and ended up being penalized financially here.  The formatting choice and B & N price then became our baseline with which to compare all the search results…

Armed with the pared down preferential list, and including the results in the electronic doc we returned to online searching.  This searching was facilitated by the fact that the Fall semester’s Barnes & Noble “low price guarantee” fiasco meant that I already had a substantial list of websites to review…I had hoped to analyze the veracity of the info available on some of the aggregating sites by confirming details at the source site, but I never was able to wade that  far into the weeds.  A relatively cursory view of the sites makes them appear to offer reasonably similar results, at least as far as pricing and vendors go.  Some include potential coupons and some calculate total cost with shipping.  I didn’t notice any overtly stating “free” returns though at least one site took into consideration the “buy back” (by them presumably) discount in their net pricing…

Several sites allowed for keeping multiple items within their system though I don’t believe any of the  others did the same type of overall low-price comparison like DirectTextbook.com did…So this DT site is still my planned Go-To site going forward.

SlugBooks.com shows several options in a table manner and I believe it can line up multiple books visually in its table/column format.  It also has several articles that discuss discount shopping for textbooks that can be helpful (a number of sites have articles, but that’s not the focus here).  Here’s a view of the results choices the columns/table includes:

List Price Amazon AbeBooks ValoreBooks Purchase Chegg ValoreBooks Rental Amazon Rental
You currently have no books on your list. Please search using the bar above!

 

BooksPrice.com keeps multiple searches on internal tabs within its webpage.  This allows for easy flipping between your choices.  It also allows you to choose among formats for textbooks and to exclude particular vendors to narrow the results available to some degree.  Here’s an example of the first three results from a recent search:

Store Name Condition Availability Term Price Shipping Total Price Go to Store
ebay
Exclude / Preferred
Used [+] Available $4.16 Free $ 4.16 Go to
ebay
Thriftbooks.com
Exclude / Preferred
Used [+] In Stock $3.79 $0.99 $ 4.78 Go to
Thriftbooks.com
Abebooks
Exclude / Preferred
Used Available $5.23 Free $ 5.23 Go to
Abebooks

 

CheapestTextbooks.com orders results by price; it also contains internal tabs, but these are for different format options on an individual book.  They do provide a column for coupons and deals and give sufficient info there to make informed choices.  You can  click directly on the choice to be taken to the vendor to complete your purchase, but this is a feature that most of the sites seem to have.  Here is an example of the page’s formatting showing a couple of results:

Used New Rent eBook Sell Back

Best Buying and Renting Options – Total includes shipping

Store  Condition Coupons & Deals  Price Shipping  Total
Barnes & Noble.com
(Marketplace)
Used $2.00
as of 1 second ago
$3.99
Amazon
(Marketplace)
Used $3.98
as of 1 second ago
$3.99

 

DealOz.com lays out many options in columns and highlights certain features in red to draw one’s attention to the best price within a format or other helpful info.  Here’s an example of what a search at this site would return:

Sort by

Price

Condition

Shipping

Coupons

Cash Back

Total

Store

10  Used
Marketplace
+$3.99

Standard: 4-14
Amazon Marketplace
 
Featured
10  New
Marketplace
+$3.99

Standard: 4-14
Amazon Marketplace
 
Featured
10  Used
Marketplace
+$2.64

Standard: 5-14

 

Unfortunately the DealOz.com copy/paste  above doesn’t show how well formatted the page is…check out the actual site to get a better idea of how this site may work for you…

 

BigWords.com calls itself the “uber-marketplace” and does have a wide ranging search capability.  It offers internal pop-up clickable links on the results to give extra helpful info for decision-making.  Here’s an example of their results:

  • TYPE
  • PRICE
  • S/H
  • BUYBACK/DEALS
  • TOTAL
  • Abebooks

    Details

    USED$5.84$2.64

    $0.58

    $7.90

  • Amazon Marketplace

    Details

    USED$3.98$3.99 $7.97

Like the copy/paste previously, this doesn’t accurately reflect the BigWords.com ease of usage…so please visit the site to see its format.

 

I was just visiting the DirectTextbook.com site and couldn’t easily find the Multiple Book Search function.  So please use this below site and change the ISBNs to include the books you want to search for!  It was apparently God’s mercy that I ever found this multiple book search at all!!!!

http://www.directtextbook.com/multiprices/14243

Use the box on the upper left of the page to input the desired books’ ISBNs and then click the “update results” link near the top of the page.  I really hope this works for you as well as it worked for us!  Blessings…

BookFinder4U.com also searches a large marketplace for many options.  It shows the country of origin and user’s ratings of various sellers to assist in your choices.   Another nice feature is that is shows the shipping times on the results page, which can aid in selections when time is of the essence.  Here’s an example of some of their results:

Store Name Book Type Price Shipping [?] Total [?] Availability [?] Tax Store Rating  
usa
<Marketplace>
Used
2.00
USD
3.89
4-14 days
Best Price
5.89
You save 98%
In Stock
usa
<Marketplace>
Used
2.00
USD
3.99
4-14 days
In Stock
usa
<Marketplace>
Used
3.15
USD
3.49
4-14 days
In Stock PA

 

AbeBooks.com was recommended in one of the articles that I read initially.  It also came up in many of the marketplace searches within aggregating websites and seems to have its own marketplace capability.  It has the distinction of also searching “rare books”.  I went there to verify pricing/terms when selecting to purchase from there based on a multi-search from DirectTextbook.com.  I believe the results lined up OK…

ValoreBooks.com was referenced in several of the aggregate search sites and seems to also do some aggregate searching itself.  It chunks the details in just a few columns so it’s not as easy to lose your place visually on the page compared to some sites with many columns, a bonus with attentional challenges in play…

Chegg.com also comes up frequently in aggregate searches.  It was the go-to textbook site for my currently-in-college son for a while (I think he prefers Amazon.com now with an Amazon Prime student membership giving free shipping) …I believe this is also the site that offered a free preview of a textbook which could really help when waiting on a shipment (details in my previous “Freneticism” posting).  I went here to check out prices mentioned on other sites.  It also came up as one of the top 3 least cost vendors when only wanting to purchase from one source in the DirectTextbook.com multisearch I ran…

Here is the free preview from Chegg, which appears to offer viewing, and perhaps testing of etext features…and I encountered no other vendor offering this service!

http://reader.chegg.com/reader/book.php?id=PR_9781305161726&cart-params=Trackid%3D29bcebde%26instacc_cart%3D1%26ii%3D

 

Textbooks.com is another searchable site by ISBN and it also showed up in some of the aggregate site searches…

Half.com was a highly recommended site by one of the articles I read on textbook searching online.  I went to this site because one of the books we wanted was cheapest there.  I set up the purchase but for some reason it was cancelled by the seller.  I had been leery of going through an eBay company, for no rational reason, so that order cancel reinforced my baseless distaste.  I ended up getting the book for twice the half.com cost from another source after running a secondary book search for items that weren’t known before classes started…which meant I ultimately had several items to data crunch in another multi-search at DT…

Bookbyte.com occasionally shows up in aggregate searches.  I believe it was also referenced in one of the articles I read.

BookScouter.com clearly lines up many sellers making it easy to see the price and condition gradients.  It also looks like it recruits books to buy so it may be a good source for getting some money back on unneeded books.

TextbookRentals.com may have been another site recommended by some of the articles that I read.  I went there to verify pricing from an aggregate site, I believe.  It shows clearly and easily the differences in prices and rental times and seems easy to skim through for details.  It has a slot to show buyback offers as well as purchase pricing all on one page for convenience.

ECampus.com was a source of a couple of our rentals, I believe, though we actually got the items through KNetBooks.com.  Perhaps ECampus operates under many names or has subsidiaries?  It seems to have some degree of a marketplace feature but many of the vendors were from one locale…It also has a clear “sell” capability.

BookFinder.com provides a lot of info in a relatively small space with relatively small print, which can be a bit overwhelming from an ADHD perspective.  It does make it pretty easy to compare details and appears to order items based on price.  Here’s an example of what you might see there:

New books: 1 – 25 of 28

 

TextSurf.com shows basically the same vendors as SlugBooks.com.  It is pretty easy to compare these choices it a glance and uses a descent amount of white space in its presentation which may be easier on the eyes and mind for those with attentional issues.  I didn’t do a deeper analysis to see if TextSurf & Slug prices were comparable…It clearly marks selling options on its search page.  It doesn’t obviously include shipping which impacts cost.  Here’s how results might look:

Buying Options
Amazon $3.98
Save $103.42!
AbeBooks $4.31
Save $103.09!
ValoreBooks $4.72
Save $102.68!
Booksrun N/A
Renting Options
Chegg $21.99
Save $85.41!
ValoreBooks N/A
Booksrun N/A
Digital Options
RedShelf $42.67
Ebook rental (180 days) Save $64.73!

 

BookFace.com shows it’s results alphabetically by vendor, at least while searching.  It also has an easy “sell your copy” feature that likely also searches the marketplace for offers…

AffordABook.com has a very easy on the eyes for someone with ADHD results page.  It appears to list just the one best priced item in a category and shows shipping charges but not coupons.  It may be a good starting search page for someone who doesn’t want to be overwhelmed with too much info but other sites offer more details, so may need consultation.  Here’s how the results might look:

Search Results:

Retailer
Price
Shipping
Final Price
Buy/Rent
$3.98
$3.99
$7.97
(lowest price!)
$4.72
$3.95
$8.67
$21.99
$21.99
$25.00
$3.99
$28.99

Well, this shows the INFO but Not the Appearance of that page…hmm

 

TextbookRush.com is another site from which we made a purchase, though I thinks the deal was found through TextbookDirect and verified at Rush.  The site also offers a “get Cash” button that presumably includes selling back textbooks owned, and based on one page it appears that there is free shipping on the books You sell to them…It appears to also do its own marketplace type searches and offers helpful details like book condition and shipping .

Both BarnesAndNoble.com and Amazon.com were necessary searches according to the B & N Campus bookstore “low price guarantee” where the on-campus store would match pricing from either online vendor, but not their marketplace options unless they were “fulfilled by” the actual store…I don’t believe either store ever offered the best price…though there was a .ca (Canada) stored that seemed to have a best price but we could not actually purchase from them to be shipped to our US address–at least as far as I could tell.

This is a link to the B & N Price Match…

https://bnc.pgtb.me/0X3s0B

I wanted to comment on the only rental we got that included the mailer (packaging & shipping label–all for free!) in the shipment of the textbook.  The return label goes to Campus Book Rentals, but looking that up online suggests using  TextbookUnderground.com.  We apparently rented items from both vendors but only CampusBookRentals.com provided the mailing packaging.  The item from TextbookUnderground offered free return shipping via a printed label, but you have to provide the packaging (we reused some items from book shipments to us)…

The CampusBookRentals.com site offers a “search all at once” option, but don’t know how that actually works out so we’ll need to check that out next semester…

This is about all I’ve got currently on this topic…I don’t have any saved searches on CBR &/or TextbookUnderground so cannot easily describe the results.  I’m considering a third installment on this topic to address the selling the books back option as we have a couple to possibly sell & using those ISBNs may allow a mock search on those other sites…and I may see from the original “Freneticism” posting if there were any other sites I used during the process but didn’t end up recapping here to potentially include in the concluding post.  Also, that possible 3rd posting (theoretical currently) may include an order of usage or preference shorthand to become my/our go-to approach going forward in this domain.

Hopefully someone besides myself or my family finds some useful info here.  I hope to Never need to dive so deeply into textbook searching in the future as this was a complex and confusing process.  The first semester’s searches were especially overwhelming in that some had so many choices (new, used rental, hard/soft/binder,electronic, international, older/cheaper editions, etc), each of which had their own price points, it became incredibly tedious to even attempt to find the best overall pricing.  That’s part of what made the DirectTextbook.com multisearch feature such a Literal Godsend!  Having specified desired formats with my daughter (like no instructor’s versions) and narrowing down the choices to only what was actually needed for her classes we could commence a comprehensive multi-search and get the results within minutes.

Being of both a thorough and penny-pinching nature, I still checked most of these items against the actual source website (not just clicking through) and also reviewed vendors’ coupons from several sources to verify the quality of the actual chosen deals.  These extra measures helped me to feel reasonably confidant that we had gotten near to the best deals we could possibly get on the searched items available at that time from a very active marketplace.

Well, best wishes and God’s Best Blessings to you as you endeavor to also be a good steward of the material resources and time bestowed upon you.  Hopefully I haven’t “squandered” my time, but rather heavily “invested” it in this pretty comprehensive searching process so as to facilitate our (and perhaps your) future textbook explorations, acquisitions, and “exportations”.  –Valerie

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