As with many things in life, if you knew how challenging your journey would be to take you to your final destination, you may never opt to take the first step. This has truth in your career — would you ever jump into your dream profession if you knew the struggles you would go through to reach your goal? This has truth in your relationships — would your friendships, working relationships and even marriage look different if you knew early on the ways they would be tested? And it definitely rings true in the parenting arena … especially when you are parenting a child with special needs.
Our family’s journey through autism is often frustrating, disappointing and expensive, quite frankly, especially in regards to “treatments.” While there is no cure for autism, managing the confusing behaviors and side effects that accompany an autism diagnosis leaves a parent wading through uncharted territory and an overabundance of opinions.
All autistics aren’t created equal.
With each new treatment or potential “cure” that comes to light, parents are forced to weigh the risks versus rewards when trying it. Often times, new programs and treatments lump all of our children’s symptoms and behaviors together into a one-size-fits-all approach. For some, these new opportunities may provide new hope and improvement in areas that may leave families ecstatic! For others, however, they may not adjust behavior or symptoms in any positive way.
For my family, we have had our fair share of unrealistic promises for successful results and dramatic changes not met. The toll it takes on a family to start and stop so many new “medical breakthroughs” due to lack of effect has been both emotionally and financially devastating. But as a parent with a nonverbal autistic son, I know firsthand the sense of urgency to find a treatment that will help your child realize their fullest potential and live an independent life. It’s something I’m constantly searching for, and something that I now realize is not a well-paved path that I can take.
To be a better autism warrior mom, I’ve come to learn, requires you to try everything with an open mind.
My philosophy has always been that as long as the treatments inflicted no pain or harm to Skyler, I am on board for trying those that had plenty of medical evidence to demonstrate a benefit. This philosophy has been tested after years of false hope the potential treatments have provided, only for our family to not see the positive benefits from them. But, even after countless therapies, medical interventions and treatments over the past 15 years, I constantly remind myself that I am a warrior fighting for my son. And I will never give up.
Tomorrow presents another opportunity to try again.
I remind myself regularly that the best way to make it from the valley to the mountain isn’t to set my eyes toward the mountain’s peak, but rather to focus on my individual steps. It will take a multitude of individual steps to get to my destination, but each step I take is one step forward.
Your life may present continuous letdowns following your failed attempts, much like I have experienced here recently as I try to help my son maintain a daily routine amidst the current global pandemic. My journey is proof, however, that while you may feel a moment of disappointment when a career goal isn’t achieved, a friendship hits some turmoil, or a treatment option doesn’t help your child, tomorrow is a new day. The sun will rise, yet again, and you will have the chance to make another step in your life’s journey up the mountain to reach the peak.
Albert Einstein said it best: “Learn from yesterday. Live for today. Hope for tomorrow.”
