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.
A beautiful post Ab. You have a loving way of capturing the genuine relationship (both strengths and struggles) you share with T. His foundation is clearly strong and this is , I believe, what weathers one through life’s challenges. 💗💗
Thanks LaDonna for the kind encouragement. I do hope he has a strong foundation! Some days you feel so sure and some you wonder. 🤣 But you can only take it one day at a time! 😊 Take good care and hope you are well.
💗💗
So true my friend. Blessed are the children for they will enter the Kingdom of God. Children have this pure innocence that even God himself wants adult to follow. They also have this simple joys that no adult expensive things can ever replace. I love the story of Peter Pan. The disney cartoon version was my favorite. Childhood is closest window to what Heaven looks and feels like. Adulthood took that away. Though some days we get luck to experience that window again through our child’s eyes and world. Take care. Thanks for the beautiful post.
Thank you. I agree that children are intentionally created this way by God. 😊 Your comment about childhood being a window into Heaven is so true. Never thought of it that way before.
We are watching the Disney Peter Pan cartoon once we finish this book. 8 more chapters/evenings to go. 😊
Happy weekend my friend. Family adventures and beautiful stories awaits.
What a wonderful first chapter book Ab! T will always remember it and having cuddle time with his head on your shoulder, you will always remember it too!
I hope so! These are the memories I hope he remembers and cherishes when he’s a grown up one day!
Very thoughtful post! I can relate to this feeling as well. When we go somewhere and Declan reaches out to peers to play he is usually playing with someone that is much younger than him. Boys his age are off playing baseball or any child his age is playing a game like sharks and minnows. Games he can’t keep up with mentally or physically. He still likes to play pretend with the younger kids. He has only recently started noticing this discrepancy. Not that he is changing who he plays with but hesitates to talk to kids his own age. I don’t mind and enjoy the playtime he has with younger kids. I just don’t want him to mind either and just have fun being himself.
Thanks Robyn. I think you’ve so nicely captured my feelings about this. I will love T no matter what and when he eventually becomes an adult, none of this will likely/hopefully matter. It’s just navigating it as a child/teen that is often tricky. It makes me pause at times to think about the time when he will notice or he will mind and that part makes me sad. But one day at a time. Can’t predict what’s to come so just enjoying the present in the meanwhile. 😊
I can’t believe summer is almost done either. Where does the time go? I have ten nieces and nephews between both sides of our family and it’s crazy how they look so different every time I see them. It’s funny how kids are usually so brave and bold. I wonder where we lose some of that when growing up. There are definitely things about being a grown-up that are overrated!!
P.S. Your pictures are beautiful. I love the colour of the sky and T walking through the tall grass.
Thank you, Linda. Sounds like you have a big family! 😊Kids grow up so quickly. I was looking at pictures of T from just last summer and there’s a difference. And agreed about losing that fearlessness. It’s both a good and bad thing, I guess?
And thanks for the nice comment about the pictures. The long grass is immediately in front of my in-law’s back deck at their cottage. It was a beautiful sunset and we let T roam around a little bit one night before bedtime. 😊
I sure do and I don’t think it’s done growing yet. K and I both have three siblings each.
The view from your in-laws cottage is gorgeous! Great timing and thinking to take some pictures of T roaming while the sun was setting.
Wise Words!
Thank you, Vickie!
T is so very lucky to have you as his parents. It is clear you would do anything for him.
It’s lovely to hear that you are introducing classic stories to him, I’ve been reading to Willow every night since she was a baby and we both still love it. X
Thanks Juliette! We certainly would as I know you would for Willow.
Bedtime stories are one of my fave traditions with T. It’s come a long way since the ABC board books! 😊
The journey of your family inspires me and makes me feel as though we’ve met. I don’t connect on such a level too often even with those I have met. I appreciate you sharing because for me it is a learning experience in many aspects. By the way, I love the Maya Angelou quote!
Thank you for the kind words and for following along in the journey. And similarly, I am glad to have discovered your blog and follow along your family’s very fascinating and compelling history and life.
I love that Maya Angelou quote too. Such a wise and strong woman!