Thoughts on “I Can’t Do This 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…

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!

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

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