Brian will celebrate his 15th birthday this weekend, another milestone in the life of our son who both inspires and scares us at the same time! The reasons for this inspiration are many: the medical/neurological challenges that Brian has bravely (and continues to) overcome, his persistence in communication, (despite his inability to speak), and his overall resilience to take each day as it comes, no questions asked- I can learn so much from Brian in this regard, though I will always ask a ton of questions! 😊
The scary part primarily has to do with trust, specifically, trusting others and ourselves, as we navigate the often complicated, (but never boring), thing called Life With Brian. One of the most valuable lessons that I have learned over the last 15 years is that special needs parenting is not for perfectionists. Any notions of what I perceived this experience would be like when Brian was first born, and up until today, has been thrown out the window. “Progress, Not Perfection” has slowly taken root and has become my mantra, particularly when my own sensibilities are challenged, (which is most days). In the long run, it’s a better way for me to live so that I can retain my sanity, but getting to this place of acceptance has taken years of heartache, mistakes, and self-forgiveness.
It’s not easy to trust….Let’s face it, our worlds were turned upside down when we first heard the despairing news that our children were diagnosed with a disability. In our case, it was when Brian was first born, and then again with the autism diagnosis at 30 months old. Everyone of us has a story- we can pinpoint THAT specific moment when we learned that the life we had hoped for our child was not to be…It is something we will always remember and it has changed us forever… Nevertheless, we have learned over time to accept and adapt as special needs parenting requires us to. We take cues from our children and our level of happiness is exactly proportional to theirs. We advocate feverishly and do our very best to provide a good life for them. We give our kids every conceivable life experience, as best as our personal circumstances allow us to, for their mental, social, educational, and physical well-being. We hope that these opportunities will improve outcomes in all domains, and in the process, rely on a lot of people to help our kids achieve these goals.
We have to learn to trust those who take care of our children, not only for our kids optimal development, but more importantly, so that our children can practice some level of independence away from us. Easier said then done for sure, but it’s absolutely imperative! Their vulnerability automatically suggests that we should protect them, and of course we need to do that, but preferably not inside a vacuum. We must give our children their own wings to fly for the sake of their own independence, whatever that will mean for them, despite how that makes us feel.
Gulp- that is so hard to do!! I have concluded that I will never have this part mastered, in fact, I often “fake it, until I make it”, something like being an actor on a grand stage. I don’t like feeling anxious or not in control. I do worry every time Brian tries a new activity outside of the home- is he going to like it? How about transitional/behavioral issues? How about the folks working with him, will they really understand what to do and implement what I have suggested? Most of Brian’s social and educational experiences have been positive, but not all, despite the copious amount of ” Brian details”. We try to mitigate the frequency of these negative situations ever happening with our best efforts, but life is not perfect, nor are people and circumstances. This is when learning to let go of what you can’t control comes in VERY handy. Life is filled with joy, but also disappointments and sadness, something that our special kids will also need help in learning to cope with.
When I look back on Brian’s life so far, there have been countless examples of situations where Jim and I had absolutely no other choice than to trust that somehow, we would get through whatever the challenge was. I’m sure you can relate! This often requires taking the time that we needed to trust those who would take care of our son during those challenges, most still ongoing, taking little baby steps… From the school bus at 4 years old, then day camp, to overnight camp. And yes, I was the crazy Mom who followed the bus to school the first week Brian was on it! I also asked the overnight Camp director the first year if I could pick Brian up daily at 5pm, lol! It is these very same experiences that have given us the courage over time to face the inevitable challenges of the present and hopefully the future- and that includes our children’s independence, an important issue that will remain long after we parents are gone. Which is why it is so important for our kids to practice these independent skills in any shape or form right now, especially away from us, in order to set the stage for later on..
If Brian had the words, I have a feeling he would say: ” stop worrying so much” and “I wish I didn’t have to do chores”, lol! His facial expressions and heavy sighs at times speak volumes to me, especially since the onset of puberty, what a teen! Much to my chagrin, my baby is growing up, (Brian proudly displays his photo ID from Motor Vehicles in the picture below) and so must I, for our mutual independence clearly depends on it- it’s the best gift I can ever hope to give my son.
Until we meet again, thanks for reading! 😊