Any parent of a child with FASD will tell you that “calm” is like a mythical unicorn.
A few weeks ago, a Saturday morning in the playground started off well enough.
Then a little girl with her grandmother came over to the slide and T didn’t want to share it.
I reminded T the slide is for everyone. Irritated, T said, “Do you want me to go home and get something sharp?”
The look on the grandmother’s face was priceless.
The situation escalated as he piled sand atop the bottom of the slide and I told him to stop.
Huge meltdown. I had to carry him home screaming.
Finding the calm in the chaos is a journey of trial and error.
There is no one standard formula, because every child and parent-child dynamic are different.
What I continue to struggle with is that even the best laid plans that align with routines and anticipate triggers can still go belly up.
The pandemic years have had truly hard moments. Some days felt like I was at the breaking point.
Somehow, we made it through each storm, whether it directly or indirectly involved T.
The calm after each storm provides moments for reflection of lessons learned and relearned.
Brain Not Behaviour
I try to remember “brain not behaviour” and that T struggles with emotional regulation, impulsivity and hyperactivity.
It’s hard to practice this during a storm – like when he sprayed bug spray in my mouth during our camping trip and refused to take responsibility.
I was livid. In hindsight, I know his brain just can’t help touching every object that catches his eye.
Self Care Is Vital
I believe in carving out time for myself, no matter how limited, to exercise, cook, read, blog, sleep – and other things that nourish my spirit.
I don’t believe in suffering in silence and believe in seeking out help. This includes connecting with FASD professionals, finding online communities and continuing to get counseling.
The pandemic reinforced the importance of setting boundaries to protect my family’s wellbeing.
Create Joyful Experiences
As one of T’s teachers diplomatically put it, there’s never a dull moment with T.
The truth is, as frustrating as this kid can be, we love him to pieces and our positive moments outweigh the challenging ones.
We create regular plans – big or small, local or away from home – to create anticipation and memories that lift us through the harder moments.
Celebrate the Victories
When I’m in the trenches with T, like frequent battles to do his school work, it feels soul sucking and at the worst of times, soul crushing.
These moments make the wins that we do experience so incredibly satisfying – and we go all out with celebrating them.
It’s not just for us as his parents but it is important for T to know, think and feel that he is very capable – and will get to where he needs to.
Be Kind to Yourself
The wonderful thing about kids like T is that every day is a new day.
But while T can quickly move on, the emotional debris left behind from his stormy moments takes longer to process as an adult.
You feel it all – anger, frustration, anxiety, stress, regret, guilt, doubt, defeat, sleeplessness, exhaustion. I remind myself to feel these emotions, because the alternative is to turn my heart into unfeeling ice.
Then I try my best to move on and, as T teaches us, tomorrow is a new day to try again.
Enjoy the Calm
When we got home from the park that Saturday morning, T was still crying and disregulated.
I left him with the hubby and went to the home office for quiet time.
I felt livid, embarrassed and frustrated as to why these moments still happen.
Those feelings soon turned into guilt, self doubt and regret as I wondered how I could’ve handled the situation differently.
An hour or so later, I heard a knock on the door and when I opened it, I found a group of T’s favourite “pets” on the floor.
He didn’t need to say sorry for me to know how he was feeling.
I looked for him in his room, gave him a quiet hug and we lied down on his bed and enjoyed the calm silence for the next few minutes.
I think you have wonderful perspective Ab and I’m glad you are here and sharing in such a genuine way. 💗
Thank you, LaDonna! It is so nice to hear from you and I hope you and your family are enjoying your summer!
I hope you are as well 💗💗
Reading this made me think of moments in the past when I judged misbehaved or unruly kids. I wish I had known better. Every family has its own dynamics, and it’s always better to try to understand instead of judge. We need to remind others and ourselves to be kind. I think I would’ve cried if I saw that moment when you opened your home office door and found T’s favorite “pets”, and hugged him in his room. That’s pure love.
Thanks Bama. I think we’re all brought up and socialized to look at behaviour as either black or white and good or bad. I definitely had those same beliefs. Life is a good teacher and looking back at some of the people I knew growing up, I am looking at it with fresh eyes. Ditto some of the unruly behaviour I see now in public. In that sense, T has been a real great teacher.
That moment with the pets at the door definitely was a sweet one. 😊 I’m very thankful we have more of these moments than the harder ones!
This is beautiful, you are such a wonderful parent.😊
Thank you, Gary. 😊
Getting a bit of bug spray in the mouth is the worst. I can’t imagine what a full on spray in the mouth would have been like. Yikes. It’s hard to always stay calm and collected during the storms. I continue to be impressed with your mindset and ability to look at the bigger picture. You deserve a medal in patience and being able to have a good sense of humour throughout it all. I couldn’t agree more about these lessons, especially the one about being kind to yourself. These are things many of us should do more of, regardless of our situation.
Thanks Linda. It was very disgusting. I tasted it for 2 days after despite all the rinsing and gurgling. 😆
I was pretty livid from the incident. But as T reminds us every day, none of his behaviours are malicious and it really is a symptom of how his brain works.
Must always maintain a sense of humour through it for sure or lose your sanity. 😂
For sure. And hey, it makes for a really funny story afterwards too!
As another commenter said, this is a beautiful post. Reading it brought a tear or two to my eyes. I think … “How would I handle such a situation?”, and I come up with no answers … truth is, I don’t know. But I do know that I admire you so much for your handling of this and other situations … you are doing such a great job in this uncharted territory! And as a grandmother who has often taken her granddaughter to the park to play, I can only imagine what went through that grandmother’s mind! Anyway … you guys are great and you have my sincere admiration. T is one lucky lad and someday he will realize just how lucky.
Thank you, Jill. That is very kind of you to say. It is uncharted territory for us for sure. We’re very lucky to have others who’ve paved and are paving the way whose lessons and experience we can draw from. It is very hard for sure on some days but most days are positive, fun and very fulfilling. Empathetic people, such X yourself, make a difference too!
My youngest son, who died in 2019, was severely brain-damaged, etiology unknown. Every day brought new challenges. Long story and I won’t bore you with the details, but … suffice it to say that I look at you and your husband, how you guys are coping, and I have nothing but respect for you both. Hugs to you all!
I’m very sorry about your son. 😔 And I appreciate the kind words. There are challenges for sure but in the bigger picture, we are very blessed. And that’s what I try to focus on. 😊
And that, my friend, is what tells me that you will succeed, for you’re focused on what will be, what can be, not letting the daily battles keep you down.
I would never dare to judge anyone’s diagnosis or pain as less than someone else’s & I’m not sure if I’ve mentioned this before, but I have 4 close friends all who are raising autistic children. One of them has twin boys, and I share your post with them. I can’t wait to share this one because you mentioned two main things I try to convey.
Celebrating the victories & Self care. I know that FASD is not autism & I used to feel it wasn’t my place to try comforting my friends because I couldn’t directly relate to what they are going through. Ab, you’ve helped me in learning how to be supportive of them & I thank you dearly for sharing so openly.
Thank you, Tammy. It’s nice that you share the post with the family and I hope they are helpful as other people’s writings have been for me.
You are right that autism and FASD are different diagnosis but there are many similar qualities – and I’ve read that some individuals are often misdiagnosed or in some cases, receive both diagnosis.
Either way, there are many similar approaches to maintaining one’s wellbeing through the chaos. Self care, celebrating victories and seeing the large picture all play a key part for sure. 😊
I applaud you for knowing it is important for you to have you time. I feel like some parents think needing alone time is a sign of weakness. Um…no. it is a sign of strength. To know we need to recharge is a sign of strength. I understand how you felt, how you questioned your actions. I do that with my kiddos constantly. In the end though? As T showed you, kids love unconditionally. As we do also.
Thank you, Rebecca. I know you’d have a unique perspective as someone with lived experience and as someone who is a parent too.
The time to one self is to important to get through the day-to-day of parenting a child… especially a child with FASD. I guess my personal time very closely! 😊
Thank goodness for kids and their uncondidtional love.
What a beautiful and vulnerable post. You have so many great pointers in here. I try to shut my mouth before I’ll say something hurtful but wow, that’s a hard practice! And I hear you about the guilt, self doubt and regret. But when I screw up, I figure my kids will be relieved to know I’m not perfect. 🙂 And that working it out and apologizing is part of relationships of all types. Thank goodness for that!
Wonderful post, Ab!
Thank you, Wynne. It is very hard to practice theory when you, too, are feeling disregulated or overwhelmed. We are, not perfect, and simply humans too. 😊 It does get easier, I think, and thankfully we all learn from the previous incidents – I hope. 🙏
Happy Monday!
I hope you can get the support that will allow you to continue the way that you do. I am sure that this blog is in addition to a helpful tool to others, also an outlet for you, and I was thinking that you really have the ingredient for a book. You have a way of outlining the issue, then walking the reader through it, and always offering something hopeful and positive at the end. It’s inspirational, and can help others, but also yourself. Have a great day!
Thank you! We are very fortunate and lucky to have a lot of community supports. It has also, knock on wood, gotten easier as T gets older. I have no doubt the teen years will be very challenging, but just taking it a day at a time. 🙂
That’s very nice of you to mention the book. A few others have suggested it too. I’m happy with my relatively anonymous blog, cuz it’s an outlet at this point. I do feel a book will be T’s story to tell one day – maybe with me, who knows. I also have like zero energy to even think of one. 😂😆
Have a nice Monday and week ahead and thanks for the encouraging comments!