Tag Archive | Christian Parenting

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

Image result for special needs life

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

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

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

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

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

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

Image result for sick child

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

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

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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…

Image result for beauty for ashes

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

 

 

Pondering Purpose…

Know your life purpose. Like everyone else God created, my purpose is to glorify God and enjoy Him forever. I live out that purpose within the boundaries and limitations God set in my life. Every dream and goal I had changed the day we got James’s autism diagnosis. No matter what I thought my calling was when I was 5, or 15, or 25—the calling that overshadows almost every other goal I had is being James’s mom. But this wasn’t a mistake. This didn’t surprise God. When He created me with a set of gifts and calling, He did so knowing I would be James’s mom. That means I can still achieve every purpose He has for me within the constraints of my daily life.”

This is from:

http://www.keyministry.org/specialneedsparenting/self-care-special-needs-parent

If I substitute “Josiah” for “James” this practically applies Verbatim to me…I’m going to personally come back here occasionally & return to this post to further ponder the impact…and the implications…Blessings, Valerie

 

image is from this site:

http://www.experienceproject.com/stories/Am-Christian/2640791

Thoughts on Faith Crisis

Wounded and Doubting: How to Respond to Your Child’s Crisis of Faith

“Watching your child doubt is painful, and it tests parental faith.  Our first inclination might be to panic, but the best option is to pray, wait, trust, and walk alongside our children.”

How timely the email inbox can be.  I’ve been “avoiding” wading through the myriad communications in my email inbox as this process can take strength that is not readily accessible (and the bulk of these missives are “impersonal” and therefore on no real timetable).  Lately what strength I can muster has in large part been dedicated to helping my special son, Josiah, wrestle with his own crisis of faith…and reading the article above has now inspired this writing…

It started some time back with a seemingly random conversation with Josiah’s Respite Care Worker that Josiah overheard.  This Worker is a Muslim that has claimed to have been raised by both Muslims and Christians…he said one of his grandmothers was a “Christian Evangelist”.  Anyway the Worker and I were discussing the changing of faith of his father and stepmother, in that he claimed that both were “raised as Christians” but later converted to Islam…I had questioned whether or not either of these relatives had truly been “Christian” at all if they could alter their viewpoint of Jesus so much that He would go (in their minds) from Lord & Savior to just a “good man” and a “prophet”…

Anyway, overhearing this conversation seemed to start a spiral in Josiah’s heart/mind that if his Worker’s relations could abandon Jesus he too could be at risk of loosing his Faith…

My husband and I have each spent hours in counseling and prayer with our son as we attempt (with the Lord’s help) to assist him in navigating these treacherous waters.  It’s truly wondrous to see the depths of despair that assail our son as he wrestles with his sorrow and shame at even the possibility of ever turning away from Our Lord.  His pure heart has been laid bare in conversation and prayer and his unveiled desire for a deeper rekindling of his zeal for the Lord is remarkable in someone so young! (or anyone, for that matter!)

So we’ve been encouraging him in Scripture memorization and meditation, prayer, worship, and in carrying out the edicts of scripture…like taking “into captivity every thought to the obedience of Christ” (from BibleGateway.com)

2 Corinthians 10:5 King James Version (KJV)

Now we continue to encourage Josiah to work on this process of “taking into captivity” his thoughts that seem to want to stray into the arena of his fears.  As a person on the Autism Spectrum with tendencies toward “perseveration” (getting stuck on a topic) and with a known history of Anxiety and Depression and even OCD this situation has seemed to have created a bit of a Perfect Storm which our son must learn to weather and still Trust God, not allowing his anxieties to overwhelm and overshadow his knowledge of Truth, nor his relationship with the Lord…

Although it is difficult to see how he struggles and the pain this brings him, it is also glorious to see the Kingdom Work being done in his heart.  It is a privilege as a Christian parent to be able to share in the spiritual journey with our children and to find how our own historical struggles and wounds have uniquely prepared us to minister to them during these times of upheaval in our loved one’s lives.  We truly believe that this “crisis of faith” is actually part of his spiritual “manhood training” whereby he learns how to go beyond the milk of the Word and how to feed himself spiritual meat.

We’re also trying to help him internalize how we live by faith and Not emotions…in fact, I don’t know of one place in scripture where the Lord instructs us to consult our feelings and based on them decide what truth/reality is!  We’re assisting our son to lay that firm foundation on the Rock that is Christ Jesus, that is based on Scriptural Truth, and which can provide a safe harbor in Any Storm, because it is never dependent upon our fleeting emotions aligning with it to validate it as immutable Truth.

So unlike the article above’s trajectory, we are Not dealing with someone who doubts their faith, but rather someone who is incredibly broken by even the possibility that at any time he could become so deceived that he would be tempted to turn his back on the Lover of his Soul.  Hearing his heart cry out in prayer, expressing his hunger and thirst for God, and the articulate way (completely different that his human interactions) he communicates with the Lord has been such a sorrowful joy for my own soul too.  In the Kingdom of God my son has No Disability!  Perhaps, in some aspect of God’s plan, He sent us a “broken” (in this world’s eyes) child that we could see how in the arms of a loving God there is no (spiritual) brokenness in him!  In fact, hearing him pour out his aching heart to our Heavenly Father really serves to highlight how “disabled” is my own spiritual fervor in comparison!

What if in God’s Kingdom we seemingly “normal” people are the ones who are truly disabled and our “challenging children” are sent to help us not only to grow in grace and strength in the Lord, but to set an example of how we should live with “childlike” faith?

Peace & Joy, in Our Lord Jesus Christ,

Valerie

And in my current CD mix, as I’m “polishing” this up comes John Elefante’s “Pass the Flame” song, which always speaks to me, especially about Josiah.  The lyrics below from

http://www.metrolyrics.com/pass-the-flame-lyrics-john-elefante.html

and hopefully another link below to the music…Enjoy!

JOHN ELEFANTE LYRICS

OVERVIEW / LYRICS (SEE ALL) / PHOTOS / VIDEOS / NEWS

Pass The Flame Lyrics

from Defying Gravity

John Elefante - lyrics

Three a.m. – a baby boy; a new life began
I held him in my arms and
knew one day he’d be a man
And soon I’d have to tell
him that this world is not our home
We must give our lives to Jesus;
we are not our own

But for now just let me hold you,
a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make him Yours to keep
And then I whispered in his ear
There is something you must hear

Chorus:
Any way the wind blows
Don’t you think that God knows
We must pass the flame
We must pass the flame
We are the light in a darkened world
We are the fire on the arrow
We must pass the flame
We must pass the flame

She was a portrait of innocence
I took her by the hand
For better or for worse we vowed
that with Jesus we’d stand
We would instill upon our children
that this world is not our home
We would tell them that our
treasure is the promise that we own

But for now just
let me hold you a little while
Let me adore you while you sleep
Thank You, Lord, for such an angel
Make them Yours to keep
So let me whisper in your ear
There is something you must hear

Chorus

And Lord, help us teach Your children well
And turn embers in to fire
Make Your love their soul desire

The doctors came into the room;
the news was not too good I said,
“Daddy, if I could take your place,
you know that I would.”
He said, “Son, please don’t worry
go and be there for your wife
You know we’ll be together in
an everlasting life.”

Then I said, “Dad, I want to hold
you a little while
Let me adore you while you sleep.”
Thank You, Lord, for such an angel
Take him home to keep
And then he whispered in my ear
There is something you must hear

Chorus

Chorus

Songwriters
DINO ELEFANTE, JOHN ELEFANTE, GEORGE MARINELLI JR, GEORGE MARINELLI

Published by
Lyrics © BMG RIGHTS MANAGEMENT US, LLC

Read more: John Elefante – Pass The Flame Lyrics | MetroLyrics