When MS Isn't The Only Disability In the House
Last updated: October 2022
I've always considered myself incredibly blessed that while my own health is at best suspect, that of my 3 sons has been utterly robust. Aside from the occasional stomach flu or head cold (the hidden bonus for me is they briefly return to little cuddlers), an unusually enormous set of tonsils attached to a then-first grader (since removed), and your average football-related injury (usually best managed with some ice cream and NFL YouTube videos), for the most part I think I've had it made when it comes to addressing my kids' needs.
The role of 'parent' must go on
Any parent worth the title knows that our jobs don't just require a soothing hand, a positive word of encouragement, and a readily available trash can when the vomit comet descends on our households. Regardless of how well or how miserable MS makes us feel, the role of 'parent' must go on because it's our responsibility to ensure our kids aren't overlooked in the midst of our own daily struggles.
Lots of things get put aside
Naturally, the combination of chronic illness on top of all the other struggles inherent to raising small humans easily becomes a breeding ground for a unique aspect of parenting guilt. As a single mother, for me this was compounded by the fact that I had 3 young boys grieving the painful, ongoing absence of a father they'd adored, and specifically for my Oldest son, his anger and hurt manifested in extremely unpredictable emotional outbursts that became toxic to my household, and a sort of pre-adolescent depression that made getting him out of bed for school every morning a literal nightmare of epic proportions. Managing such emotional angst on my own, while trying to care for my other two sons, was an exhausting daily struggle. Lots of things got put aside: laundry, dishes, housework, hair appointments, even my own neurology appointments. But in light of being brutally honest, something else did as well--my other two younger, more cooperative children, who adored their older brother but were as bewildered as I was about how to keep his deep emotional pain from swallowing us all.
A lovingly-applied band-aid
My youngest son, always the most easy-going of my three, frequently retreated to the loving home of our wonderful next-door-neighbors. It probably speaks volumes about how chaotic our home was during those dark times that he found solace in the household of a family with no fewer than 9 children! In my relief that Youngest was somewhere I knew he was loved, I didn't pursue the daily ritual of after-school-reading as I had with his older brothers. A conference with his 1st-grade teacher clued me in on the fact he was struggling and another with his 2nd-grade teacher reiterated he could use some help, but I couldn't afford a tutor for him on my own and his father wouldn't help pay for one when I asked. Recently retired, my father made himself available on Wednesdays and we stepped up efforts to address Youngest's delay, but even though my dad and I are both avid readers, we aren't reading specialists--so in retrospect, despite all our good intentions, we were basically just putting a lovingly-applied band-aid on the problem.
A new home and new school district
As this season of my single parenting journey progressed, I found Oldest a phenomenal therapist and did my best to put good men of solid character in his life. He became significantly more settled when we found an ADD medication that worked, and once I stopped forcing him to engage in a relationship with his father, the healthy support of his counselor enabled him to adjust his expectations on the more realistic (albeit unfortunate) grounds of how things were vs. how he wanted them to be. Then, in the midst of the whirlwind that defined my adventures of solitary childrearing, I accidentally and unexpectedly fell in love with a former high school classmate, and our impending marriage meant moving to a new home and new school districts for my sons (more on these subjects in future posts!)
Thus I found myself summoned to in the principal's office of Youngest's new school in August, several weeks before school started--which I don't care how old you are, it turns out never to be a good feeling! With incredible kindness and compassion, the principal explained that based on Youngest's initial academic assessments, and information received from his previous school, she was asking me to consider holding him back from beginning 3rd grade because at best, his reading level was registering to "end of first grade"--nearly 2 whole academic years behind.
I was stunned
I was stunned. Although I knew he was delayed in terms of reading, I'd had no clue it was so far. Always ready to point the finger at myself to ensure I accept my personal responsibility for all circumstances, my thoughts immediately went to self-recrimination for the multitude of ways I believed I had failed Youngest academically because I had been so focused on the battle to save the emotional health of Oldest. Tears came to my eyes as I briefly explained to this kind educator the incredible tumultuous path my boys and I had navigated the past four years--from the unbelievable stress of hiding from them my exhausting fight against their father's accusations in family court of a multitude of allegations from mismanagement of their medical funds to my fitness for medical custody--even as he chose not to visit them or follow court orders outlining their financial care; to the ongoing concerns that my newfound happiness and remarriage would upset the constant yet delicate improvements in their emotional wellbeing because I would be taking them out of the neighborhood and private school system they loved; to my isolating yet boundless determination to care for these sweet boys as best I could without assistance from their father while trying to not ignore my body's constant screams for attention... for rest... for peace.
The principal's incredible compassion
The principal was incredible--she listened to my brief explanation about Youngest's lifelong immersion in a chaotic household, starting from my diagnosis when he was a 3 months old. And when I was done, she said with incredible compassion: "I can't even imagine the choices you've been forced to make in the last few years between caring for your children and caring for yourself! I want you to stop beating yourself up for the problems you've been forced to address, because Mom, you've done a great job. Now it's time you and he got the help he needs, so we're going to hit the ground running to shower him with assistance. That little boy is so lucky to have you for a mother, and anyway--we all think he's just the sweetest little guy in the world!"
Facing an important decision
Those words and her gentle reassurance have been a lifeline in the moments when I'm feeling unbelievable guilt that I didn't--or couldn't--address Youngest's reading delays before now, and the fact I completely missed how serious the issue was. That day, bathed in the affirming glow of her understanding, I was able face the very real beginning to my most recent motherhood experience--having a child who very likely has dyslexia (all tests still ongoing), and trying to make a decision about his education that would impact him for the rest of his life.
Ultimately, for a variety of reasons, I decided not to hold him back--and luckily, so far, it seems to have been the right call. The principal placed him in a 3rd grade classroom with an experienced male teacher who holds Youngest to a high standard of excellence while somehow managing never to leave my sweet little man discouraged. Although he's still lagging far behind his peers, I've been told he is hard-working, incredibly cooperative, and showing improvement--though it's far too early to tell how much progress is realistic this year.
My ability to juggle all my responsibilities
I have a nephew with autism, so I'm well aware reading or comprehension issues aren't the catastrophic disabilities many parents must manage--so for that, I count my blessings. But I am also keenly aware that my own limitations as a result of MS, which manifest in challenges with cognition, stamina, pain and memory, greatly impacted my ability to juggle all the responsibilities that fell on my shoulders post-divorce--which in turn likely affected my child's development and how/when he received services to address his own hurdles.
The lesson for me
The lesson for me in this, as with many experiences I've had as a mother, is to try exercising the same compassion for myself that others have blessed me with extending. Although I would never dream of holding others to similar standards, I am notoriously hard on myself when I fall short of what I believe is attainable for my circumstances. In retrospect, I'm glad I had the presence of mind to choose as I did--for nearly a year between 2016 and 2017, addressing my oldest son's emotional health desperately required my full resources, and I believe the fact I have an incredibly well-adjusted, (mostly) happy teenage boy who devotes his energy to annihilating my food budget rather than engaging in scary outbursts of rage stems from the fact I didn't wait to get him the help he needed.
And I will not rest until I can say the same for his younger brothers, regardless of (dis)ability--theirs or mine.
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