I recently started reading Peter Pan with T at bedtime, his very first chapter book.
It is a modified version of JM Barrie’s classic adventure, with large text and a large illustration page on every page – to help a new chapter book reader make their way more easily through it.
We read one chapter per night. T mostly pays attention. I enjoy spending five to 10 minutes reading while he rests his head on my shoulder.
We’ve finished six of the 16 chapters. Each chapter ends of a cliffhanger, which I love, as it builds anticipation for the next evening.
For those unaware of this classic story, Peter Pan is about a boy who never grows up and tells the adventure that ensues when Peter brings three children to his home, Neverland.
As a parent of a child with a prognosis of at-risk FASD, the last five years have been an emotional rollercoaster of experiencing and learning as much as we can about FASD and what the challenges that may await T in the future.
One common characteristic that individuals with FASD may have is dysmaturity, which is when one’s chronological age does not match their developmental stage.
It was five years ago this month when we had our first meeting Surrey Place, an amazing organization that has provided our family with incredible life-enhancing supports.
When we first received T’s prognosis, one of the things that haunted me was when they advised that we will start to see the gaps widen between T and his other peers as he gets older.
Every special needs parent goes through stages of grief and for me, those words were ones that I really struggled with for a long time.
Thankfully, I’ve come to terms with that potential future for T and have chosen to channel those fears to doing the best we can to support T and to advocate for and to provide T with the early intervention supports to give him the best headstart in life possible.
I can’t predict the future and I refuse to let my fears stop me from enjoying our wonderful little boy and his fleeting childhood.
So with regards to this issue of dysmaturity, we are at a wait and see holding pattern. In many ways, T is doing great and we’re working on the areas that need support. We don’t know what the future holds and we will support and love T no matter what.
I want to clarify that dysmaturity and “Peter Pan” syndrome are two different concepts altogether – but the latter made me think about the former.
In the case of Peter Pan, I think about how the summer has just flown by. Soon, T will be starting Grade 1. Where the hell has time flown?!
I think about how temporary childhood is and how he now has two grown up teeth, with three more growing in now.
I often think about how I want to hang onto his innocence and to never lose that.
Because Peter Pan, as problematic as aspects of the story are, has one thing right: We lose things as we let go of our childhood.
The biggest loss is one’s child-like wonder for the world, the sense of infinite possibilities, and the curiosity (and time and capacity) for adventure.
I love being a grown up – but there are so many aspects of it that I can tell my younger self, if I am able to, are overrated.
We can’t fight the tide of time, including with T, but we can cultivate a mentality of keeping our inner child alive within us.
That’s why it’s so important for us to take T on adventures in nature, to be silly, and as a special needs parent, to just let go about the worries from time to time.
T has only one childhood and we want it to be one that he can look back on fondly – and hope that happy memories get him through challenges he may encounter in adolescence and adulthood.
School starts in 2.5 weeks. I feel a mixture of excitement and hope intertwined with sadness and anxiety.
I’m doing my best to park those thoughts aside. There is still a lot we want to do and to enjoy before we say goodbye to summer.