Tag Archive | Autism

Feelings

This a beautiful post that seems to encapsulate some aspects of the autism experience from within. I’m so thankful that some people will choose to open up & share their unique insights from their personal perspective. I hope to get my autistic son to read the original post some time & see if he actually relates to this description of emotional/sensory overload.

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Here’s what I shared with the author:

valeriecurren
Beautifully & eloquently stated. This helps me understand my autistic son just a little bit better. Thank you for sharing this!

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Please read the original post, I will revisit it too, which is why it’s posted to my blog, for it is precious & in her own words!  Blessings, Valerie

autismthoughts

I think I feel too much. That is what autism is most like for me. Autism is feeling everything acutely all the time. I literally feel everything. I feel every object in a room. I feel sounds and smells and tastes. I feel words. I feel emotions. I can’t say I feel differently than you because I don’t know exactly how you feel. I have never been you. But I can say that I feel everything physically. And it is exhausting…

I was telling a friend today that I think I love too much. Love for me is overwhelming. It makes my whole body tingle. Love is a burst of energy that penetrates every fiber of my being. It feels like it literally changes my DNA so that I am now connected to a person in a way that they are made a part of me. I love hugs because it…

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OK, I admit it…I wanted this on my blog so I could find it again…and to share it with my son, Josiah, who is just starting out with his own blogging voice–as someone who’s on the Autism Spectrum & a Passionate Outspoken Christian.  Check him out here:

JosiahsFreakShow.wordpress.com

 

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This is Josiah from a few years back…a fitting picture for his blog title, hmm?

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Josiah with Clarissa, Nathaniel, & his twin Brandon–what a bunch of hams!

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Josiah running Track for his High School, about 5 years ago…

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Josiah peeking out of his then bedroom window (he’s got half our basement now) during an air-soft battle with sibs & Dad a few years back…

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Josiah Skywalker battles his “lookalike”…kind of like Luke in that cave…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

20 Years Later…Red Wings Rocked The Joe

My husband just showed me a Facebook video (I’m Not on Facebook!) post of the amazing Detroit Red Wings vs Colorado Avalanche fight from March of 1997 at Detroit’s Joe Louis Arena.  What awesome hockey back in the day.  We still miss those Red Wings champions (and the ability to watch them on regular broadcast TV)…Here’s a version of that fight as posted on YouTube.com.  Enjoy!

Our oldest son just stopped by and mentioned that this fight gets posted to Facebook pretty regularly so apparently a lot of people enjoy reminiscing about that brawl…

We also found a great write up about this momentous event here, it’s worth the time:

http://www.freep.com/story/sports/nhl/red-wings/2017/03/23/red-wings-avalanche-fights/99495676/

I ended up reading the above Detroit Free Press article aloud to my husband and during the reading our son, Josiah, & his Respite Worker came home & started listening in too.  Ultimately the Freep recounting of events sparked an interesting conversation amongst the guys about Detroit Sports and some of the many changes (mostly not for the better) in the modern era.  It’s great to see my Autistic Spectrum son participate in a lively interaction with other guys in a domain so many love!

Josiah had found a documentary on Netflix about the Detroit Pistons in the Bad Boy era and some of the clips in that “flick” basically amazed our kids…and not just because of the pretty outrageous outfits!  Netflix can be such an eye opener when it allows glimpses into a past where masculinity was allowed freer & fuller expression in our society.  Sports have become “safer” now in many respects, at least perhaps physically…but certainly not “safe” in terms of the ability of people to communicate freely about their viewpoints without sometimes extreme consequences.

Some commentators that I enjoy reading &/or listening to refer to the “Arena of Ideas” in regards to social/political thought & commentary and how it used to be understood that it could be a knockdown, drag out, free for all.  Doing genealogical/historical research in old newspapers can be a real eye opener when you see how the Left/Right divide was clearly on display and openly advocated for by a particular “rag”; now virtually only the left side is on display, but presented as middle of the road…but I digress. Seeing that historical brawl in the hockey “arena” gives us a tangible representation of what a free-for-all of Ideas in the Arena could/should look like.  Have an opinion, take a stand, take on all comers, protect your teammates, defend your honor, don’t go down without swinging, don’t deliver nor tolerate the cheap shots, respect your opponents while doing your best to defeat them, never give up, never surrender (in Churchill’s voice, of course), when knocked down get back up again, stay in the game, go the distance…

There are several scriptures that speak to this process as well, at least for me:

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. Excerpt from BibleGateway.com

Of course, this presumes that you are doing things that the Lord would approve…

Proverbs 24:11 Easy-to-Read Version (ERV)

— 24 — 11 If you see someone on their way to death or in danger of being killed, you must do something to save them. 12 You cannot say, “It’s none of my business.” The Lord knows everything, and he knows why you do things. He watches you, and he will pay you back for what you do.

Easy-to-Read Version (ERV)Copyright © 2006 by Bible League International; Excerpt from BibleGateway.com

I believe this passage is one that supports the Right to Life position of protecting all innocent human life during the entire lifespan…

 

Ephesians 4:26 New International Version (NIV)

26 “In your anger do not sin”[a]: Do not let the sun go down while you are still angry,

Footnotes:

  1. Ephesians 4:26 Psalm 4:4 (see Septuagint)

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. Excerpt from BibleGateway.com

I reference this particular passage periodically with others in relation to the fact that anger in and of itself isn’t wrong…otherwise Christ himself, the only sinless human, would not have displayed it.  Where we get into trouble is in what we Do with our anger.  Having “Righteous Anger” is not an oxymoron!  However, we all need the Lord’s wisdom to act upon such anger in a manner that is pleasing to Him, and productive to the situation.

Ephesians 6:12 King James Version (KJV)

12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

King James Version (KJV)Public Domain

Excerpt from BibleGateway.com

This scriptural passage reminds us that the true battle is a spiritual one.  It is Always Light vs Darkness, Good vs Evil.  We, as believers, need to keep our eyes fixed on the Lord, follow His lead, His Will, and… 

James 4:6-8 New International Version (NIV)

But he gives us more grace. That is why Scripture says:

“God opposes the proud
    but shows favor to the humble.”[a]

Submit yourselves, then, to God. Resist the devil, and he will flee from you. Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded.

Footnotes:

  1. James 4:6 Prov. 3:34

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.  Excerpt from BibleGateway.com

Submission to the Lord is the key here.  We need to be surrendered to Him.  At that point those battles we face should be handled in obedience to His Will.  It means that we conduct ourselves in a manner that is pleasing to Him, even as we enter the fray.

Well, it wasn’t my intention to go off on that battle tangent, but I guess in my heart I’m some type of Warrior.  It ties into the many battles engaged in the Special Needs domains while attempting to champion my son’s rights & needs.  God equips us to do what we must, sometimes only giving us that fortitude once we are in that arena and there is no turning back.  I guess that Bloody Battle at the Joe was more of a meaningful metaphor than I’d realized when posting this message…hmm.

 

May the Lord Bless & Equip YOU for the battles you face as you seek His Face, surrender to His Will, and submit yourself to His guidance & presence in your life!

Your Fellow Warrior in the Kingdom,

Valerie

Here’s a final thought…be inspired by what the Lord can do in and through you…and be encouraged by the music & message here!

 

War in the Heavenlies

Uploaded on Aug 16, 2011

WORSHIP LEADER: RON KENOLY

ALBUM: JESUS IS ALIVE

HMD036

Lyrics:

Making war
In the heavenlies
Tearing down principalities
Standing firm
In Jesus’ victory
Making war
In the heavenlies
Casting down
Every high thing
That exalts
Itself against
The knowledge
Of Christ
(Repeat)

We do not
Bow our knee
To the prince
Of the air
For we know
The truth
Has set us free
And under our feet
He will shortly
Be crushed
And having done all
We’ll stand
In victory

(Repeat Chorus)

Our hearts
Are set apart
For the courts
Of the Lord
And we will not be
Bought or sold (Valerie ammended this line only slightly)
By His Spirit
In us
We will overcome
Pulling down
Every stronghold

(Repeat Chorus)

That exalts
Itself against
The knowledge
Of Christ
That exalts
Itself against
The knowledge
Of Christ!

 

  • License

    • Standard YouTube License
  • Music

    • “Making War In the Heavenlies” by Ron Kenoly

Both the video clip and the lyrics above are copied from YouTube.com

My special son, Josiah, will often blast the above song on his CD player and it reverberates throughout the house and our souls, encouraging us all to not give up, even in the midst of the fray…Josiah is an amazing warrior in the Kingdom of God!

Autism Outreach…touching lives

There is a moving story posted on the ukdailymail website here:

http://www.dailymail.co.uk/news/article-4446186/Mother-autistic-boy-moved-sweet-note-server-left.html

Please read the original article for extra details…It is such an encouragement to hear about others reaching out in kindness to a family during a time of struggle.  I have many memories from my Spectrum Son’s younger days where he had such challenges coping with sensory and/or emotional overload.  Had anyone ever done/said something similar to what was done for this family for us it would surely have become a treasured memory.  Thank you, Lord, for the “random acts of kindness” of strangers…for reaching into the midst of our struggles and lightening the load in unexpected and much appreciated ways!

Blessings to all,

Valerie

Image result for scripture encouragement

from a Google Image search for “scripture encouragement”

Below, the image is from the original article & tells much of the tale…

'Our server was gracious and sweet,' Heustess wrote in her post; she said her faith in humanity had been restored after the Cracker Barrel encounter

‘Our server was gracious and sweet,’ Heustess wrote in her post; she said her faith in humanity had been restored after the Cracker Barrel encounter

Read more: http://www.dailymail.co.uk/news/article-4446186/Mother-autistic-boy-moved-sweet-note-server-left.html#ixzz4fKb4S7sq
Follow us: @MailOnline on Twitter | DailyMail on Facebook

 

Commenting on a Transplant Tale

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

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

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

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

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

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

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image from bing.com image search

Image result for luke 17:11-19

image from bing.com image search

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

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

Here is the link to the original article:

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

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

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

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

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

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

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

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

 

 

 

 

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

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

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

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

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

Autism: Different, Not Less:

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

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

the image above is from this pinterest page

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

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

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

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

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

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

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

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

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

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

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

Philippians 3:14King James Version (KJV)

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

King James Version (KJV)Public Domain

above scripture from BibleGateway.com

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

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

Blessings,

Valerie

Autism—It’s Different in Girls

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

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

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

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

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

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

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

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

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

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

Best Regards, Valerie Curren

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

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

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

http://theemergencesite.com/AutismSpectrumMenu.html

Image result for autism adhd