Tag Archive | complex

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

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Christianity & Judaism–“One in the Olive Tree!”

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:

http://www.israeltoday.co.il/NewsItem/tabid/178/nid/29231/Default.aspx

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…

https://pjmedia.com/faith/2016/09/21/andrew-klavans-great-good-thing/?singlepage=true

Rabbi Zarmi,

Respectfully, one ought not say that “Christianity is based upon the three synoptic gospels.” That is very much like saying that “Judaism is based upon Leviticus.”

Christianity is based upon the teaching given by Jesus to those “apostles” upon whom Jesus conferred authority, divine assistance, and an explicit mission, to:

1. spread his teaching; and,
2. welcome persons of every nation and tribe into his “kingdom”

To “The Twelve” (with a companion named Matthias replacing Judas Iscariot who betrayed him after the latter died), Jesus promised divine assistance, such that “what [they] bound on earth was bound in heaven, and what they loosed on earth was loosed in heaven.”

He also gave them a liturgical act to be performed as a kind of Temple service parallel to that of priests serving in the Temple. The early Jewish Christians called it the todah or Thanksgiving Offering; the later Greek Christians translated this as “Eucharist.” This act was, all at once, supposed to be Jesus’ reworking of the pascha and a todah and even the korbanot ofYom Kippur and Sukkot, remodeled into a single sacrifice in which the death of Jesus himself was to be endlessly re-encountered through the ages “in an unbloody way.”

In creating this liturgical act, Jesus washed the feet of Simon Peter and the others that they might “have a share in [him],” after the fashion of the Levites whose “share” is G_d. And Jesus commanded them to do this sacrifice “in remembrance” (Gk: anamnesis; Hb: azkarah/zikkaron). In this way Jesus intended to culminate all the sacrificial life of Israel in himself, and to make it the center of the life of the Messianic Kingdom.

Furthermore, although Jesus claimed that he came for “the lost sheep of Israel” (not, mind you, merely Judah; but all Israel), he then told his authorized teachers (the Twelve and the Seventy Two) that he had made them judges in his expanding “tribe of G_d” and royal stewards for his “kingdom of G_d” and told them: “Go into all the world making disciples of all the nations, teaching them whatever I have commanded you, and baptizing them” — the latter being his selected “adoption rite” for entering the covenant people of G_d, parallel to circumcision for the Jew.

Now, none of that involved writing anything down.

Christians call the body of teaching which Jesus gave to those whom he sent out (“apostles”) the “Apostolic Deposit of Faith.”

The 27 books which early Christians called “the memoirs of the apostles” and modern Christians call “the New Testament” are, for Christians, writings which bear witness to the life of Jesus and the initial giving of the Apostolic Deposit of Faith.

I apologize for the length of this (I’m almost done!).

I offer you this clarifying information, Rabbi Zarmi, because I think you and I have corresponded previously here in the comboxes on PJmedia, and I remember you as someone willing to make an effort to not mis-characterize things.

For Christians, Christianity is the Apostolic Deposit of Faith. When Christians divide amongst themselves and disagree on religious matters it is because one group is asking, “Is Doctrine XYZ really part of the deposit of faith?” and another is saying, “Yes” and then the two are disagreeing about who, if anyone, has authority to say that it is or isn’t.

Serious, “orthodox” Christians all hold that Paul of Tarsus and Matthew and Luke and John and James and Peter were allteaching exactly the same deposit, whether by spoken witness or in writing. But all their writings differ in flavor because they were written…
(a.) by different persons,
(b.) in different genres,
(c.) for different audiences,
(d.) to address different needs and topics.

Therefore, it would be an error to (for example) hold that John’s gospel was teaching a different thing from those of Matthew, Mark or Luke; or that Paul’s writings teach a different thing from the gospels; or that the letter of James represented some kind of contrary teaching to Paul.

And consequently one can’t really say Christianity is “based on” a subset of these books, or even all of them together. For the Christian, those books are “based on” the person of Jesus and the teaching he wanted transmitted.

I think the dialogue between Rabbi Jacob Neusner and the Catholic Josef Ratzinger who became Pope (now Pope Emeritus) Benedict XVI is the most instructive on this topic.

See: http://chiesa.espresso.repubbl…

Hopefully I”ll be able to locate the lyrics and music to a very appropriate song…

Jew and Gentile
by Joel Chernoff

Album: The Restoration of Israel
by Joel Chernoff


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”):

http://www.invubu.com/music/show/song/Joel-Chernoff/Jew-and-Gentile.html

and this should lead to the music on youtube, hopefully…Enjoy!

Special Needs & Church

I just read the post at the below site about the challenges one family faced surrounding church attendance…that seemed to be generated, in particular, by one church staff person being inflexible and unaccepting of their child’s unique quirkiness…

http://supportforspecialneeds.com/2016/02/10/when-church-special-needs-do-no-mix/  “…we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that …We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.”

I agree with the exhaustion statement above .  Families facing complex special needs scenarios can be overwhelmed and even burned out because of the day-in and day-out battles they face on multiple fronts.  Church should (theoretically) be a place where we can go and be accepted “warts and all” and where our children can be especially embraced in spite of, or even because of, their differences.

But, oftentimes church can be a battleground.  There are a couple of posts at SpecialNeedsParenting.net that outline a pretty ideal scenario of love and acceptance of a very unique autistic young man in a church.  Please see this story at these two links:  http://specialneedsparenting.net/autism-church/  http://specialneedsparenting.net/autism-church-its-a-good-thing-part-ii/

Our family’s experience has been a bit more uneven than this.  When our son with special needs was born we lived in Northern Michigan, about 3 1/2 hours North of the birth hospital.  At that time I was staying with my parents in Metro Detroit with our just 2 year old son after having seen a high risk pregnancy doctor and being told of my twin pregnancy “we’ve got to get the little guy out before he dies” on a Friday, and being scheduled for a premature delivery on the Monday following.  Both twins were needing to stay in the NICU before coming home.  The basically “normal” baby (Brandon) came “home” (to my parents’ home) after 10 days in the NICU, but Josiah remained there for about 2 months before being transferred to the University of Michigan Hospital for Open Heart surgery.

My husband and I had been quite involved in our Northern Michigan church before becoming parents.  We had been the youth leaders/pastors for a period of time and also both very active in the worship ministry.  When it became known that Josiah would be having heart surgery both pastors traveled South to visit with him (and me) in his birth hospital.  It was a fairly awkward visit as the senior pastor was visibly uncomfortable in the presence of this very small (about 4 pounds then, having been 2# 6oz at birth, a condition called IUGR–Intra-Uterine Growth Retardation, very small for gestational age) and sickly premature infant.  They did ask how they could help our family and offered to stay with us at U of M during Josiah’s upcoming heart surgery, but I did not feel “safe” in their presence so declined this “service”.  I suggested that they could have some families in the church either provide meals for my husband, or invite him over for a meal as he was living alone (in order to work) and coming downstate to be with his family each weekend.  This resulted in one dinner invitation for my husband during that extended time of extreme stress and isolation.

Years later we ended up discussing that early time and how uncomfortable we were with how the senior pastor, in particular, handled us and our situation.  There was something about things that never really sat right, though it was hard to pinpoint.  Our friends had also been attending our church during that time and were quite close with my husband in particular (he and our oldest son had both participated in their wedding).  They provided some needed perspective about how our “heart surgery baby” was being handled by our then pastor at that time.  According to them he would brag about the small sick baby from his congregation, kind of like a feather in his cap about how he/the church were doing so much to “meet our needs”.  Apart from that hospital visit (which was a significant drive and Not requested by us) and that one meal for my husband there was nothing done for us by our church…including during multiple surgeries and intensive home interventions from government program workers for about the next two years before we left the area.  I forgot, the Senior Pastor did visit me and the boys in our home at one point, I’m not sure when, and asked what I needed.  When I said that I could really use a friend he exclaimed (in seeming outrage) “I can’t get you friends!”, which wasn’t what I was actually saying.  Needless to say, talking to pastors about “issues” has never been very high on my priority list (and perhaps I’m too picky in this arena given my background in Christian Counseling)…

In the early days after the twins’ birth, when we were finally all back in our own home I heard a very moving story on the local Christian Radio Station.  There was a family that had given birth to a very medically fragile child and they had been surrounded by love and support from their natural and local church family.  This involvement rose to the level of round the clock shifts to provide extra assistance during the early weeks, and perhaps even months, of intensive neediness.  What was portrayed seemed so ideal and so far apart from our own experience that I was very saddened at that time by how unsupported we ended up feeling from our local church family (our natural family being hundreds of miles away and helping us with housing/babysitting during medically based visits).

Because of our son’s complex medical needs, which were all being treated and followed at U of M, a good 3 hours South of our then home, we began to explore the possibility of moving closer to this needed ongoing medical care.  Ultimately my husband went through a job change that allowed him to work downstate and live in my parents’ home for about a year, commuting to our home for the weekends, while I stayed North with our three sons so that we could sell our home ourselves (For Sale By Owner).  The boys and I would head South with their dad for any weeks where Josiah had medical appointments and return home the following weekend.  This situation was extremely stressful for all involved and for the most part we had no support from our local church.  I lived in extreme isolation during the weekdays, rarely leaving the house because of Josiah’s fragility and risk of infection, etc.  In fact I was shocked to find out that the woman I considered my closest friend from that church had been attending a weekly bible study a few houses from my own, but she had never stopped in to see me or the kids nor to check on why we attended church so sporadically, if at all.  That lack of attendance was due to the fact that Josiah contracted life-threatening RSV (Respiratory Synsichial Virus) and required lengthy hospitalizations for it twice in the first year of life–basically taking him out in public was risking his life.

When we finally accomplished moving the entire family downstate and got situated in our “new” home, we began searching for another church home.  As the twins were now toddlers (2), our oldest son 4, and our daughter an infant this was an extremely challenging process.  If we found a church that had sufficient nursery capacity they rarely, if ever, were able to handle the magnitude of Josiah’s behavioral or emotional needs for the duration of a worship service and either I or my husband would need to intervene with him, sometimes multiple times in one service (this was before we knew about “autism”, but even after such a diagnosis we had minimal autism treatment so it was more just an “ah ha” explanation for us about what was going on with him).  This really meant very sporadic church attendance overall as it was very difficult to “get anything” out of a service being so distracted by Josiah’s needs.  The magnitude of those needs was also a major reason why we sought the support and sustenance of a local church “family”, as a way to cope with the massive pressures of the special needs family’s life.

It was a number of years before we began attending our present church and we ultimately went there because it had a bit of a “comfortable old shoe” component to its ambiance for us.  During Clarissa’s infancy I had attended a MOPS (Mothers of Preschoolers) program at that particular church and felt that it had a pretty welcoming atmosphere.  Because of that positive MOPS experience, and because the church was pretty local and seemed relatively welcoming we eventually began attending more and more frequently.

Since our children were then mostly in their elementary years we were no longer battling the nursery situation.  Also, this church has a fairly limited “Sunday School” type programming, so we often just kept Josiah with us during the service in order to minimize some of the upheaval.  Josiah has always had a true worshiper’s heart for the Lord!  This means that either in church or during times of spiritual meaningfulness (family devotions and/or communion, etc.) he was more attentive and/or more behaviorally appropriate than he might otherwise typically have been.  That meant that at least sometimes he was appropriate to attend the kid’s programming, and having him included in some musical kids productions was a definite blessing.

Even though our current church home is relatively “special” friendly there are still glaring times of insensitivity that can be on display.  A couple years back our daughter was nearly moved to tears while at a youth event when she observed how her special brother was not at all appropriately included in a physical activity.  His processing challenges and  poor coordination meant that he was rather bowled over and disregarded during a sporting event.  Clarissa was very sad that the attending leaders were either unaware or unconcerned about how Josiah (and his sister) was being hurt by not being appropriately accommodated.  It would be great if either of them would have been assertive enough to speak up and seek help during such difficult experiences, but that is unlikely to happen.  That means that people in leadership need to develop increased observational skills and sensitivity and perhaps creativity in how they reach out to people and families that are “different” and who may need extra help, patience, or understanding…

Being able to reach out and embrace kids/adults with special needs and their families really should become a primary mission of virtually any local church.  The uniqueness of the needs represented would mean that staff and parishioners would need to be especially sensitive to where a given family was in multiple domains.  There could be great opportunities to reach out in service to such families who often face more than their “fair share” of crises and upheavals.  Having a ministry targeting special needs families could mean a much more vibrant style of community outreach and Christian witness.  The love and compassion, gentleness and patience, joy and peace, kindness and self-control that Should accompany the Christian life would be the ideal characteristics for people reaching out to special families to possess.  Wouldn’t it be wonderful if the Lord would lay such a burden on the hearts of so many in ministry?

Until such a time as that ideal scenario presents itself, those of us who know the Lord need to allow Him to move in and through us in developing eyes, ears, and hearts of compassion toward one another…and especially to people and families that are often broken and hurting.  And if you come from a special needs family it is almost certain that you bear burdens and wounds and need the love and tender mercy of the Lord poured out into your life.  The author referenced at the beginning of this post took a long hiatus from church and didn’t really raise her kids much in the faith.  Although she herself is attempting a return to church now, it is unclear what spiritual relationship her kids have–and those losses are at least partially attributable to an incredibly insensitive church leader who by her demeanor may have inflicted permanent damage on a vulnerable family…How Tragic!

May the Lord give His wisdom to His people that they/we as individuals and as local church bodies may open their/our eyes to the many needs around them/us represented by special needs families.  May they/we choose to see and to give of themselves/ourselves in time, prayer, emotional support, or tangible means of assistance and so reach out to so many of the vulnerable, lonely, hurting, and fragile within our communities.  Consider the Randy Stonehill song () below which beautifully portrays the need for each of us to be Christ’s hands and feet to a hurting world…Blessings to All, Valerie

RANDY STONEHILL
Who Will Save The Children Lyrics

Cry for all the innocent ones
Born into a world that’s lost its heart
For those who never learn to dream
Because their hope is crushed before it can start
And we shake our fists at the air
And say “If God is love, how can this be fair?”

But we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

We count our blessings one by one
Yet we have forgotten how to give
It seems that we don’t want to face
All the hungry and homeless who struggle to live
But heaven is watching tonight
Tugging at our hearts to do what’s right

And we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

As we observe then through our T.V. screens
They seem so distant and unreal
But they bleed like we bleed
And they feel what we feel

Oh, save the children
Save the children
Save the children

Now we decide that nothing can change
And throw up our hands in numb despair
And we lose a piece of our souls
By teaching ourselves just how not to care
But Christ would have gone to the cross
Just to save one child from being lost

And we are his hands, we are his voice
We are the ones who must make the choice
And it must be now
There’s no time to waste
it must be you
No one can take your place
Can’t you see that only we
Can save the children
Save the children
Save the children
Please, save the children
Will save the children?
Who will save the children?

Lyrics taken from:   http://www.elyrics.net/read/r/randy-stonehill-lyrics/who-will-save-the-children-lyrics.html

 

Being a (Special Needs) Mom

just momThe above image is copied from this article, well worth the read:

I Am “Just” A Special Needs Mom

I have basically been “just a mom” for a long time now…my youngest just turned 18 and my oldest hit 22  near the end of 2015.  However the even bigger adjustment than to life in mommyland came when our twins were born 20 years ago…and one of them had significant and complex special needs.  The disabilities and medical conditions and multifaceted needs really transformed my life from “just” being a “stay-at-home-mom” to a mom of 4 (eventually) and one with significant health and other needs.   I became a “Special Needs Mom” and we became a “Special Needs Family”.  In addition 2 of my other kids, youngest & oldest, and my husband have been “officially” diagnosed with ADHD,  while the other 2 family members have numerous ADHD traits, so our house is always hoppin’!

Over the years the magnitude of the tasks before me and the extreme isolation I’ve experienced (some of which is self-inflicted) have meant that I have become overwhelmed by responsibilities, complex decision-requiring scenarios, my need to “process” things in a safe and responsive space, historical hurts that have impeded my progress or even ability to seek support from others, the sheer volume of conditions impacting our son’s life (as in there doesn’t ever seem to be anyone out there to whom I can really relate), the craziness of the schedule of a 6 person family and attendant duties (sports, academic, therapeutic, & relational support, etc), and having to occasionally address my own needs to try to avoid or overcome burnout.  Being a parent, and a special needs parent in particular, has intruded upon (and sometimes overshadowed) my marriage and other relationships.  It can easily become an all-consuming vocation.

Now that all my kids are adults, in looking back on their childhood years I hope and pray that they can come to a place of forgiveness for me (just as I need to be able to forgive myself), for all the ways that I let them down in numerous arenas of what a mom is “supposed” to be and do.  I’ve thought of my experience in parenting Josiah, in particular, to being akin to the scriptural shepherd leaving the flock (the 99) to go looking for the one lost sheep.  So many times and ways Josiah has strayed from the family flock and has required me to go after him, to find a way to bring him home, and to help him learn how to interact with all the other sheep to some degree.  Where I feel guilty, in part, is for whenever my husband and other kids have basically been amongst the 99 whom I’ve yet again left “alone” to go pursue that (same) one lost sheep.

Here’s a scripture that my husband shared with me years ago, and which gives me comfort:

He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.®Used by permission. All rights reserved worldwide.

https://www.biblegateway.com/quicksearch/?quicksearch=young+gently&qs_version=NIV

The fact that God “gently leads” those with young means that he has patience and understanding for the plight of parents.  We parents are split beyond just addressing our own needs, we have to also care for the needs of our young, and the Lord understands this.  It’s sometimes hard for me to think of the gentleness of the Lord, for some examples of fatherhood lived out before me seem to stray more into arenas of harshness and criticism, so it’s important to take such scripture to heart and at face value, for me.

When we are in Christ’s Kingdom, part of His Flock, then we are those very lambs that He gathers “in his arms and carries…close to His heart”!  He deals with us in tenderness and mercy, love and compassion, gentleness and patience, carrying us when we cannot carry ourselves nor our own burdens.  This is especially true of those of the flock who also have young and those of us tasked with caring for another’s needs, like when our children are very young or when their disabilities and/or fragilities require our involvement more to the degree of  what is typical for a younger, needier, more vulnerable child than chronological age alone might indicate.

Thank you, Lord, that you remember that we are “dust” and that we need You to lead us Gently…especially when we are responsible for our young.  Thank You for placing this simple passage in your Word and giving your Holy Spirit to make it come alive in our lives.  Please continue to lead, guide, and direct my life (and that of my family and you dear readers who share this prayer) and to do so in gentleness, carrying each of us close to Your Heart!  In Jesus’ Precious Name, Amen…

Commenting on “Only the Rich will Have Rights” Article

I’ve recently decided to check out the blog, ComfortInTheMidstOfChaos.com in the hope that I will find writings that speak to me where I am currently.  This is a community of Christian Parents whose children have complex special needs.  If you’ve read anything here at Special Connections you may guess why that sounds appealing.

Because I’m basically still reeling from some very difficult, painful, unethical, and frankly illegal events surrounding my son’s education (or lack therof), I clicked on the “special education” tag at the above website.  The article below jumped out sufficiently for me to write to the author in the comments section.

http://www.comfortinthemidstofchaos.com/2015/01/are-you-serious-awards-volume-xl-only.html

Below are my comments as shared with the above blog post, though due to the character limit they were posted there in batches.

We have just experienced the fallout of this dilemma first hand. Our 20 year old autistic (among many other issues) son “graduated” last Spring with a “diploma” though he still cannot do 3rd grade math! At the IEP near the end of the school year I (again) raised the issue of Transition Services and provided several “age appropriate transition assessments” to show areas where he still needed significant help. By the way, the school has done Zero Transition goals or services over the years even though I have asked in writing for such Legally Mandated services to be provided. They once again refused, and also refused to reconvene the IEP to address outstanding issues and my son’s need for clarification from IEP Team Members.

The bottom line is that we ended up filing a Due Process Hearing Request near the end of 2015…and I had been working on the issues related to that filing leading up to the IEP and before filing, for about 8 months preceding it. We tried to find an attorney or legal advocate including returning to the University based “poverty law center” who had assisted us a decade ago when we had been compelled to file for Due Process, again as a last resort. The law center said no; our state’s Protection & Advocacy organization said our situation was too complex (after working with us over the phone and email for a month) so no; a state level Autism Organization did basically the same thing as P & A.

We are in a lower income situation and our son is on SSI, Medicaid, and Food Stamps so he personally, a legal adult Not under guardianship, is definitely low income. I went through our state’s Bar Association (phone & web) and sent emails to every attorney listed who had Special Education expertise and also did pro bono work…no takers. We contacted another university’s disability law clinic–no. I was in the process of trying Legal Aid (who seemed unlikely to have special education expertise but would at least be free)…

Anyway, a relative offered us a sum of money that could enable us to “hire” legal advocacy for the filing of motions, oral arguments, and conducting the hearing itself. We visited this attorney’s office and he basically told us it would cost us at least $20,000 to have a lawyer see us through the Hearing, which of course (even with help) we didn’t have.

In fact, in our state (Michigan) the school district attorneys are now habitually going after families and their lawyers to get attorney fees, claiming the filings were “frivolous” even when they are clearly not. They also apparently get $100,000 insurance money from the taxpayers whenever someone files Due Process so they can pretty much Always defeat the little guy (who already has the burden of proof and a major uphill battle). The lawyer examined the school district’s lawyers’ motion to dismiss (where they either denied or ignored every issue we raised) and seeing that they hadn’t already tried to hit us up for attorney fees said he would talk with them and get the case dismissed (like he was doing us a favor by Not allowing the Significant Issues we raised in the Due Process Hearing Request get a “fair” hearing). I thought we were there to hire him to represent our son, but he talked as if we decided to proceed Josiah would be on his own in court…

The financial component of what would likely fall on our head if we proceeded, our direct attorney costs and the likelihood of being “sued” to pay for the school’s attorneys, regardless of the legitimacy of our issues really scared most of the other family members at the meeting. My husband was afraid that if we proceeded we could lose our house (though not having $20,000 meant, apparently, not proceeding at all)!

So instead of helping us with our case “our” attorney (who at least lowered his fee) appeared to never read our actual hearing request (it was nearly 40 pages long after all), nor did he review some of the supporting documentation I sent him electronically to show “proof” of what was being contended, nor to offer us any advice or analysis on the “merits” of our case, or lack thereof. Needless to say I was, and basically still am, furious. I felt as if the 15 plus years of Wrightslaw and other advocacy training and self education I’ve attained was pointless. I could have rolled over and played dead at virtually every IEP meeting we’ve had and gotten virtually the same results!

The upshot was that our disabled son was pressured to sign a “with prejudice” dismissal of the case request so that the case would just go away…and we were all supposed to be grateful that at least the school wouldn’t try to make us pay for their lawyers! How is that protecting the rights of the disabled, especially the lower income disabled (& their families)?

We had and still have extremely serious and legitimate issues, many of which have been problematic for years, some going back to 2001 when the school disregarded autism and outside (hospital based) neuropsych testing showing my son’s IQ to be “low normal” and they decided he had an IQ 30-40 points lower than the outside testing showed…put him in a class for mentally/cognitively impaired students, didn’t address his autism, denied him access to general ed in any meaningful way until our prior hearing request (which finally got him a Para Pro, which had been a doctor’s written recommendation from at least 2000), refused to re-mediate his areas of learning disabilities because they preferred to use their significantly lower iQ during the “severe discrepancy” LD era, even though his math LD met that more stringent requirement even considering the IQ they claimed he had…and many other things.

The irony is that we would probably never have pursued Due Process this time if they had been willing to Finally address his Transition Needs. I had mistakenly thought that that area got short shrift when other heath crises (like a Brain Tumor and eventual Liver Transplant) took preeminence. Apparently it was the same as always, obvious needs that would be disregarded, denied, or dismissed…

I could go on at even greater length here, and I’m sorry for going into this so much, but it is still very fresh and raw. In fact, today was to be the day the Hearing was to have happened/started. At this point I’m trying to regroup to find another way to get my son’s significant needs addressed when a system tasked with caring for these issues was extremely derelict in its duties. Given that Michigan is usually quite generous, in that it provides Special Education through age 26 (unless one “graduates”) it is even more frustrating.

My son’s doctor has said that kids that have high-functioning autism are the one who aren’t getting their needs met, not in school and definitely not in the adult services industry. If you are high enough functioning to handle the academics then they apparently completely disregard the independent living skills side of the equation. If you can’t handle the academics then the “life skills” track means you never acquire anything like a high school education. If you examine the IDEA requirements for post-secondary transition you have to wonder where the “diploma” track kids will get those issues addressed if they are busy taking the course requirements for graduation…and graduating kids without high school skills and no transition services violates the letter & spirit of IDEA!

Here’s our bottom line, too weary over the years to step our issues up to the next level after the extreme exhaustion and years of dispute that accompanied our first Due Process request (that took like 2 years to resolve, when 60 days is “required”)…overwhelmed by Brain Tumor & Liver Transplant issues that exactly overlaid the years when Transition should have been addressed (and initially when we should have confirmed that the Settlement terms from the first Due Process request were followed–they weren’t entirely). Being lied to by school staff that you don’t get functional needs met when you’re on the diploma track and being too beaten down by the IEP process (always backed up to the end of the school year so there’s no maneuverability for “procedural safeguards”) to start the battle all over again when school starts. Being unable to find virtually Any Advocacy to assist us over the years so living with the “as good as it gets” aspect of the IEP that was, from my perspective, No Good At All (and Never Legally Compliant ANY Year). When finally filing Due Process again, as a last resort, being told that because you don’t have deep enough pockets to absorb attorney fees for your son AND the school you can’t/mustn’t proceed.

And here’s the real kicker, since our son is Not under guardianship, if you cannot find an attorney to represent him then HE MUST ACT AS HIS OWN ATTORNEY. So in order to vindicate our son’s rights he must be mightily violated by the system in order to proceed. Someone on the spectrum, with communication, attentional, and processing issues will be forced to act as his own trial attorney in a hearing. He doesn’t have near the breadth of understanding of special ed law, or even his own educational history, that his mother does, but she cannot speak on his behalf! The attorney insisted that the hearing experience would virtually destroy Josiah, being made to listen to people he cares about potentially lying and saying horrible things about him (even if they didn’t believe them but in order to protect their jobs). His twin and father were convinced to “quit”…Josiah and I, not quite so much…

We are praying about where to go from here, but it is an incredible heartache to me that we cannot even, apparently, have our legitimate issues heard nor obviously afford to find someone to proceed. Now it may be that even if we found someone free who could proceed we cannot carry on because of the “with prejudice” dismissal (which apparently means cannot be brought up again and is used to dismiss a case on the merits–which were never addressed in any venue, not even our alleged “legal representative”). Being told by the attorney that if we’d come to him a year ago he could have “kicked them in the…” but now it’s basically too late. “You can’t do anything to help your son…but I really hope you’ll become an advocate to help others…you know the special ed law better than the administrative law judge who would have decided your case”…what does a parent even say to news like that?

Thanks for letting me vent, and thanks for writing about the many issues families face. I only just found your blog after reading your recent article on Rare Diseases and Not Being Alone that you published through Special Needs Parenting. I am planning to read many of your postings in my process of moving forward from this devastating disappointment.

Blessings In Christ,

Valerie Curren

PS I recently started blogging at SpecialConnections@WordPress.com and would love to have you stop by! Best Regards!

Also, I’ve been writing a medically focused CarePage.com blog mostly emphasizing Josiah’s needs for several years now, trying to cope with Brain Tumor & Liver Transplant for a while here:

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

And my son Josiah is working on finding his own voice here:

http://www.carepages.com/carepages/JosiahTheOvercomer/

I have not yet, until this reply, written about so many of the details of what has transpired surrounding our Due Process Hearing Request and the horrible and entirely ineffective results from attempting to assert my son’s legal protections.  If you are reading this page our family would greatly appreciate your prayers on our behalf as we seek to find a way to move forward that addresses our son’s myriad needs, redresses existing grievances (if that is even possible now), and hopefully ultimately blazes a trail so other students and families won’t have to suffer the major setbacks that have been body blows to us all.

There is Always Hope…and the Lord is still Light & Life even when all about us is seemingly darkness.  May you too find Rest, Peace, Joy (even in the midst of sorrow), Light, Love, and Hope in Him!  Blessings, Valerie

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

 

 

 

Comments on Pensive Aspie blog post

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:
https://pensiveaspie.wordpress.com/2014/04/19/you-make-me-feel-disabled-yes-you

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!

In Christ,

Valerie

[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:
http://www.carepages.com/carepages/JournalingForTheJazzman
and one for the page he writes (mostly praises of the Lord) & some personal sharing:
http://www.carepages.com/carepages/JosiahTheOvercomer
finally, here’s a link to my recently acquired and in development WordPress blog:
https://specialconnections.wordpress.com/

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!

Blessings,

Valerie Curren
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:
http://specialneedsparenting.net
That website could potentially benefit from an article from your extremely unique perspective!