A Disability within Disabilities

From the age of 18 months my youngest son had severe Asthma and allergies.

Seemed to be allergic to everything that grew, died or floated in the hot Arizona Desert.  He was in and out of the pediatrician’s office so often, everyone in there knew the entire family by their first names.  His most severe respiratory episode happened at the age of 4.  He came home from Preschool and wanted to take his nap.  This never happened prior to having his snack and playing with his puppy.   He woke up early from his nap and walked into my office and it was obvious this was a bad attack.  So I loaded him and his brother up and we headed to the pediatrician’s office.  He was given several injections, a couple of breathing treatments, observed for a few hours and we were sent home to return the following morning.  Two hours later, it hit again – stronger this time, as his lips and nails were losing color on their way to blue.  We rushed him to the E.R. this time.  Again, the same process of injections, breathing treatments and observation for a few hours.  He recovered from the episode and life went back to normal.

Well, not actually back to normal, yes the lungs were working as normally as they could, but we noticed him squinting all the time.  We had him assessed and yes, he needed glasses.  As the year progressed, other concerns began to show related to cognitive functioning.  Then, his eye glasses prescription needed to be changed every 3-4 months; we could barely keep up with no vision insurance at the time.

Things that had been developmentally age-appropriate began reverting and skills he had learned were starting to be difficult for him.   We had heard of an Independent Evaluator who worked with brain injuries and visual learning disabilities to have our son evaluated.  His visual tracking and both numeric and alpha cognitive/deciphering were impaired.  We were able to initiate special education services for a Learning Disability while he was in the first grade.

Throughout the years, he would have emotional highs and lows, and when he reached Jr. High the mood swings could be off the charts.  We thought he was having difficulties in school because it was a new setting and the daily routine was so much more intense than his previous school.  Others would ask about a behavioral health issue; I would deny the possibility with my last breath.  I’d only personally experienced behavioral health issues once, in my brother who was extremely psychotic and off the charts narcissistic.  He was a career criminal, and the idea that my own son could be anything like his uncle, literally terrified me.  Luckily we all made it through Jr. High without any serious incidents.

At the age of 14, he had yet another biking accident (he was definitely prone to them).  This would make his 8th broken bone in his upper extremities, except this time he also had a concussion.  In the ER, they completed a CT scan.  They noticed “a lesion in the occipital region” and suggested we follow up with a neurosurgeon as soon as possible, with the caveat of “it’s not urgent”.  Hmmm, I’m confused, you said my son has a lesion on his brain, and you want him to see a neurosurgeon ASAP but it’s not urgent?

As a parent, this made no sense.  Of course, all that was going through my head was the ‘C’ word.  Just to make things more gut-wrenching, it took an additional 3 months for him to be seen at Barrows Neurological Institute in Phoenix.

After completing a series of CT, MRI and other imaging, we meet the neurosurgeon and the diagnosis of a stroke in the occipital region was confirmed.  The confusing part, or should I say the most confusing part, was that it wasn’t new.  It didn’t cause the bike accident nor did the accident cause the stroke.

Further consultation was completed with other neurologists and radiologists at Barrows, and the medical team was convinced that our son had a stroke at the time of the respiratory episode at the age of 4.  It was a surreal situation as we were getting bad news, but yet everyone including our son was having moments of clarity.  All these visual, learning disabilities, and cognitive anomalies could be traced back to that time, as the occipital region is the base for most of the brain’s visual functioning.

The following month after the news of a stroke, he started high school, and immediately found a program that seemed to encourage and fire him up to be proactive in many ways.  He joined the Marine Corps JROTC.  This provided him with structure, schedules, daily responsibilities, leadership training and ways to stand apart from everyone else positively.  He still had issues he had to deal with, and school continued to be difficult, but now – he didn’t mind going as he had to keep his grades up to stay in JROTC.  The structured leadership training was the unique key that motivated him.

In his senior year of high school, he decided to go into the Marine Corps.  He worked his heart out physically and studied night and day to bring his ASVAB scores up enough to enter the Corps.  He didn’t need our permission to enter as he was 18, nor unfortunately did he bring paperwork home for us to review before signing – so off he went two weeks after graduation.

Two weeks into boot, he had a “stroke like” event.  After 5 weeks at Balboa Naval Hospital and then the Marine Corps Separation Unit, he was discharged to home.  It was suggested that he follow up with the Neurosurgeon at Barrows, and to request OT, PT, Speech, Cognitive and Psychological Evaluations.  He started receiving all the above therapies and was diagnosed with Bipolar Disorder, along with scoring as severely narcissistic.  Talk about flash backs – scoring high on the narcissistic traits!!  I could accept a stroke, Asthma, and Learning Disabilities, but anything that he had in common with his Uncle – I was in complete – total denial.

He started on the medications for Bipolar which changed his personality to absolutely nothing, there was no sign of our child.  He continued with all therapies, but due to a change in insurance, he had to seek out a new Psychiatrist within the first year.  This new doctor was confused with the evaluation and diagnosis of Bipolar – she absolutely did not agree, and proceeded to wean him off all the medications.  She changed the diagnosis to ADHD and started him on a new course of medications.

He soon began to make improvements across the board, and was receiving counseling focusing on how to control the impulses related to the narcissism.   He was taking a positive pre-emptive control over his emotions, impulses, and behaviors resulting in forward movement to a new healthy independent life.  Three years after starting into this process with the new psychiatrist; seeing his progress and how he processed through it, she stated “I wish I had been there from the start, I think most of this is a result of the original stroke at the age of 4”.  We thought exactly, we all wished we had known.

Our son had been diagnosed with Asthma, Dyslexia, Visual Impairment, a Stroke then a second Stroke-Like event, Narcissism, Bipolar Disorder, and ADHD.  Were each of the individual diagnosis accurate; or did the stroke cause cognitive, visual, and behavioral changes?  The resulting injuries of a stroke can be similar to a Traumatic Brain Injury (TBI).  Damage to the brain may be evident right away, or it may slowly introduce its effects on the brain and body over time.  Where does my son fall; we are likely to never have a clue.  It is simply a disability within a disability.