Between back-to-school commercials, first-day-of-school posts, and college-move-in-day pictures, this time of year always has me reminiscing about my days as a student. Although I am no longer shopping for notebooks and binders and figuring out if any of my friends are in my classes, the memories of these experiences have earned a permanent spot in my mind.
In recent days, pictures of parents’ children starting a new chapter of their lives have inundated my social media feeds. To go along with these pictures were captions of excitement and fear for their loved ones embarking on their new journeys. Like most of my peers and their parents, my mother, father, and I held the same fears and concerns when I transitioned to new schools. Would I find my classes OK? Would the workload be too challenging for me? Would I make new friends?
Living with SMA, however, posed additional concerns and hurdles to jump.
When it comes down to it, living with a chronic illness means living with special circumstances. There’s a fine line between wanting to be treated as “normal” as possible and understanding that your unique needs require unique accommodations. In school, that balance was always met, but only when my parents advocated for it.
If there’s one thing that the school system taught my family, it’s the importance of advocating for yourself and your loved ones. From the moment I started kindergarten to the day my brother switched the tassel to the other side of my college cap, advocacy played a key role in my success as a student.
During my early elementary school days, the school system wanted to put me in special education classes because that’s where they felt my physical needs would be best met. My parents fought back with the utmost respect but held their ground because they knew that wasn’t the best fit for their baby girl. In high school, inaccessibility due to building reconstruction became a central concern for all four years. In college, illness, heavy workloads, and extra time to dictate exams to my note takers were our highest hurdles to jump. Again, persistent advocacy paved the way for solutions.
As you can see, advocacy became the trend for those 18 years I spent in school. But what exactly does it mean to advocate for yourself or your loved ones? What does it entail? Advocacy is not a one-size-fits-all kind of deal. There is no right or wrong way to go about it because everyone is different, and everyone’s needs are different.
As a seasoned veteran of the school system, my advice would be the following: Understand what you (or your children) are capable of, discover your unique needs, and understand the physical limitations that SMA has reared its ugly head to affect. Capitalize on your strengths, and set that as your standard when it comes time for advocating so that you never undermine your abilities and take the easy way out. Hold a firm ground, but always respect the other party. There are times and places for heated arguments, but I’ve found the most effective way to get your needs met is to kill them with kindness first.
And last, but not least, never stop fighting for what you believe in because, just like everyone else in the classroom, you deserve to earn the best education possible.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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