“It will never rain roses: when we want to have more roses we must plant more trees.”– George Eliot
T received a pair of skates for Christmas from my Aunt. We took him for his first skate yesterday. As expected with first timers, he struggled. After two slow laps, he was fed up. Our 4 year old gets frustrated very easily and he announced loudly that he was done. He was edging towards a tantrum, so we stepped out and let him chill outside the rink.
I have a love-hate relationship with the term “special needs”, because it often puts a label and restriction on what people, including myself, expect of our children and how we respond to their struggles.
It is true that having a prognosis of at-risk FASD has allowed us to access immensely helpful early intervention services for T. And disclosing his prognosis to the school has allowed him to be placed in a specialized kindergarten program where he is receiving more focused supports to maximize his academic success.
But we‘ve also experienced people who’ve lowered their expectations when we are forthcoming about T’s challenges. In the latter half of his preschool year, our son often spent part of his day in the “office” sitting with the administrator, because he was being disruptive in the class.
We were not always forthcoming about T’s prognosis. In the early days, we kept quiet, because we worried people would write him off and not try as hard for him. But we now feel differently and think that awareness raising and advocacy are far more effective in combatting labels about an invisible disability than trying to conceal them.
I will say this loudly and repeatedly: T is smart, curious, caring, funny as hell, and tenacious. But he struggles a lot with hyperactivity, focus, impulse control, and self regulation. These qualities create challenging situations for himself and for those whom he interacts with, including classmates, educators, family, and us, his parents.
But how we respond to and how we teach him to respond to his struggles are important.
We read a lot about other parents’ experiences with their FASD-affected children. We’re thankful for their wisdom. In some cases, we’re thankful to not have encountered similar situations and we pray we never have to face some situations we’ve read about. We remind ourselves that while some challenges are often common, every child’s trajectory will differ based on their circumstances.
I struggled with the term “special needs,” especially in the first year, but I feel that my hubby and I have since reclaimed it for ourselves and more importantly for T as a badge that can be empowering & motivating.
And here are principles we try hard to focus on – some days are easier than others to do so:
- We all have challenges. T just happens to have a few exceptional ones – resulting from actions he himself did not make.
- We won’t let T be restricted or defined by his challenges – or use them as an excuse. We will help T develop the skills and resiliency he’ll need to work through challenges, big or small.
- T can, does and will learn. It just often takes more effort, a different approach, and a lot of patience and repetition – and often times, some aggravation and frustration too!
- Focus on a growth mindset. Teach T it’s important to try and effort is just as important as the outcome.
- Celebrate the victories and focus on the positives and the strengths. There are many. They just often get drowned out.
When T came into our life at 14 months old, he wasn’t fully walking yet. It was fun watching him go from cruising to full on walking, going up and down stairs and then running.
I thought about these early days as I watched him walk around outside the rink excitedly. He had no problem walking with skates on, so it’s only a matter of time till he’s comfortable on ice. And when he builds his confidence, his enjoyment will surely come too.