Good for the Soul: Recalibrating as a Special Needs Caregiver

Posted byAbPosted inADHD, adoption, FASD, gratitude, growth mindset, Parenting, Positive Parenting, Resiliency, travel, wellbeingTags:, , ,

I’m scaling back my life so that I have more capacity to support my son.

With T’s upcoming start in middle school, I used my recent mid-year review at work to reflect deeply on my commitments.

I made hard decisions to let go of several things:

  • I stepped off two extra curricular work committees that I’ve been a longtime member of. I love those groups but I also recently took on an additional portfolio and team.
  • I stepped off my volunteer role on Surrey Place’s Family Advisory Council.
  • Our family freed up our Sundays after T decided he was no longer interested in his weekly soccer activities.

I like to keep busy and contribute through extra curricular activities.

But special needs caregiving demands a lot – and this past year was particularly draining.

The decision to simplify my life boiled down to one truth: I want to give my best possible self to T during his critical middle school years ahead.

So I have to leave time in my life for stillness after disregulation, clear-headed reflection, and soul-soothing self care.

“It’s good for the soul
To let down your hair and breathe in the air
Good for the soul
‘Cause up to the sky, a thousand birds fly
Good for the soul
The ones that you love will keep you above
Good for the soul
So just dance in the rain, no need to explain.”

We’re taking it super easy this summer, which is so uncharacteristic of me.

I usually pack T’s days with learning activities, fearing the summer learning slide.

But I have faith in T’s brightness – it’s the other stuff we need to work on. And we will, after summer.

So instead, we’re taking a fuck it approach – and only have two goals for T: be nighttime potty trained (✅) and learn to tie laces (🤞🏻).

While the summer has not been without its disregulated and challenging moments, it’s been generally fun and relaxing!

My head is clearer at the end of the day and I’m able to give more of my best self to T.

This is the momentum I want to build on as T starts middle school in, *gulp*, three weeks – and the daily pressures, such as homework and interactions with peers, return with intensity.

We got back on Friday from a wonderful 11-day visit to T’s grandparents in New Brunswick.

These annual August visits to my in-laws’ cottage are rejuvenating and T loved his time with family, especially his cousin, A.

The days flew by – walks on the beach, picking up buckets of dead crabs that washed up on shore after an evening storm and burying them in the sand, sunset bike rides to the canteen for ice cream, dipping our feet into the refreshing bay.

We slept so well at night, thanks to the salt water air, and slept in late every morning.

I am thankful for the time to recalibrate for the exciting and challenging fall ahead.

As a special needs caregiver, you’re never fully ready. But with my recent streamlining, I’m as ready as I ever will be.

Good for the Soul is one of the standout songs from Madonna’s amazing new album, Confessions 2.

47 thoughts on “Good for the Soul: Recalibrating as a Special Needs Caregiver”

    1. Thank you! Suburbia has its charms and I’m also thankful for the plentiful green space to support my family’s wellbeing. 😊 And I’m very fortunate to love both my home and work life – the key is to streamline both so I can make the most of my time and energy for our son. 🙏

      Like

      Reply

    1. Thanks Betsy. I think I did too and let’s see how it all plays out this fall. 😊🙏

      PS. I made an Amazon purchase today for a gift card to thank my cat sitter while we were away. Which means I was finally allowed to post a review for your book. Hopefully it shows up soon! 😊

      Liked by 1 person

      Reply

  3. It’s great that you were able to recognize that you needed to scale back to spend more time with your family rather than trying to do everything and just burning out. It’s actually something I’ve been thinking about a lot lately. These moments with our kids are so precious. And having downtime is so good for our health. Hard to believe school is right around the corner! Wonderful to hear that you guys had a blast in NB. Enjoy the remaining days of summer with T!

    Liked by 1 person

    Reply

    1. Thanks Linda. Our kids are only kids once and these childhood years are so priceless! 😊🙏

      I’m so thankful we have an extra week of summer break this year. But it certainly just flew by. Fingers crossed for good camping weather next weekend.

      Hope you had a good trip in Gaspe and look forward to hearing all about it in a few days at lunch!

      Like

      Reply

  4. I am so happy to have found your work and your world. I’m the mom to a special needs son (now 28). It has been quite the ride but every single day is precious because of his existence. Thank you for this beautiful piece! So nice to meet you….

    Kiki

    Liked by 1 person

    Reply

    1. Thanks Kiki. It’s very nice to meet you! 😊 The joy of the WordPress community is finding people with similar life experiences – and in your case, a delightful Freshly Pressed post today. 😊

      Liked by 1 person

      Reply

  5. Ab, this post came at such a good time for me – I am working so hard on ending the busy busy and focusing more on the important things. It has been a struggle for me – My dad is moving to our house for a month starting the end of next week – I think that will be a big HALT! to my running around. 😂 Also, Jess has had some swallowing issues – which just shows that no matter where your child (adult) lives – her own home in my case – we are still caregivers and need to focus on that – and spend your energy there – thanks, ab 💖

    Liked by 1 person

    Reply

    1. Hi Vickie, I’m sorry to hear about Jess. I hope that she’s ok! Ditto your Dad, I hope he is ok. I know it’s stressful living with parents, now that you’re an adult, but I hope you find the month to be a positive bonding time with minimal stress! 😊🙏 Good luck and sending you lots of strength!

      Liked by 1 person

      Reply

    1. I appreciate the candor and vulnerability Gary. Hindsight is 20/20 and you also have additional challenges, so be gentle with yourself, including your past self, too! 😊

      Like

      Reply

  9. ab, this is such a sweet post. you’re a loving parent, and you know your son so well. in a family, it’s important to adjust as needed, when one member needs more support, the others do what needs to be done to make that happen. it’s not a sacrifice, just what had to be done at the time, the priorities shift.

    on another note, i love the beautiful pictures, and in that second picture, with T lining up the rocks in the sand, i’m reminded of the artist, andy goldsworthy. if you don’t know him, look him up and share the photos of his art with T if you think he’d like them. andy is an artist who works in nature to create art, photographs it, and leaves it behind to go back to nature.

    Liked by 1 person

    Reply

    1. Thanks Beth as always for your kind and encouraging words along the way! 😊

      I think one of the epiphanies for me to make this change is that I sometimes don’t respond to T’s challenging moments in the calmest and most patient way – and it’s because there are too many other things fighting for my attention and energy. So I’m more than thankful I can make these priority shifts. 🙏

      I’ll have to look up Andy Goldsworthy’s work and share them with T. One of T’s strengths is his amazing creativity and imagination – and the crab burial definitely displays those qualities!

      Liked by 1 person

      Reply

      1. yes, isn’t it interesting how suddenly something makes perfect sense and you know exactly what to to? your time now will make such a difference later, as well as in the immediate future. ‘front loading’ support and learning now to navigate the world, is so much easier than trying to work to intervene to undo challenging situations later. you won’t regret your choice and you’ll all benefit from it later in ways you don’t imagine yet. yes, andy g, is a Scottish artist, still alive, and one of my favorites, who i think he’d love.

        Liked by 1 person

      2. Thanks Beth. Appreciate the guidance and yes “front loading” especially for family is something I know I will never regret. Here’s to a more balanced fall ahead! 🙏

        Liked by 1 person

  10. “I want to give my best possible self to T during his critical middle school years ahead.” Ab, you are such an incredible father. It really is so important to take inventory and recalibrate every so often. I think you’re doing the right thing by giving yourself some breathing room, so you can be more readily available to support T through his middle school transition. I’m sure everything will go well!

    Regarding shoe-tying, I refused to tie my shoes the way I was taught because the loop would point toward and rub again my ankle 😅, so my parents invited me to experiment with other ways of tying my shoe. I did my own weird thing and still tie my shoes the “wrong” way, but that focus and experimentation had me committed to the task. That is to say, knowing T well you may be able to brainstorm a way to get him invested and hyper-focused on the task of learning to tie his shoes. Also, love love love seeing the check-mark next to nighttime potty trained. Go T!!

    Liked by 1 person

    Reply

    1. Thanks Erin, I always appreciate your encouragement and support from afar. 😊

      I am quite nervous about how the new school will unfold but I’m as ready as I’ll ever be, so let’s bring it on! 🙏

      T can be quite methodological in his approach – he’s currently working intently on fixing his marble run when he should be in bed. So I hear ya on helping him experiment and find way with laces. I know he’ll figure it out!

      Liked by 1 person

      Reply

    1. Thanks Brian. 😊 I agree that hopefully my capacity will free up again as T gets older. But for now, I’ll need more focus and streamlined – and hopefully more clarity and focus too! 🙏

      Liked by 1 person

      Reply

  12. Love this line:
    …”leave time in my life for stillness after disregulation, clear-headed reflection, and soul-soothing self care…”
    Yes, Yes, Yes! Take stock and take charge!
    Even better to read your encouraging post while listening to a Madonna tune that’s new to me. “Good for the Soul”…a perfect accompaniment, Ab. Thank you! 💝💝💝

    Liked by 1 person

    Reply

    1. Thanks Vicki. I knew you’d get it. So important to take time to take stock and to then take charge. 😊

      If I could rename this blog Life with T and M, I so would. 🤣

      Liked by 1 person

      Reply

      1. Ohhh! Yes, you could! Or you could just include a healthy dose of M, here and there! Loved the song…such a great chorus. A perfect anthem for your message! A collab with M! ❤️😉❤️
        Much love! ❤️😉❤️

        Liked by 1 person

  13. I applaud your plans Ab and how you are modeling good choices for the entire family. It’s too easy to get caught up in the ideal that parents should or can do it all. Who made that rule anyway?? 🙂

    Liked by 1 person

    Reply

    1. Thanks Deb. 😊 You said it best, there seems to be this perceived hustle culture for parents, probably fueled by social media. I don’t agree with that ideal. Because the person who suffers is the child. 🙏

      Liked by 1 person

      Reply

  14. Good for you Ab! I couldn’t help smiling as I read because I’ve gotten to know you . After reading your posts and reflecting on many of them after, I seem to have so many questions in my head. Well curiosity is more accurate,lol. Great parents often sacrifice for their children, so I’m not surprised by the changes. T is certainly blessed to have you!

    Liked by 1 person

    Reply

    1. Thanks Tammy. 😊 I don’t really view it as a sacrifice but more about how to focus my limited time and energy on T. I know it’s something people never regret looking back – spending time with family. 🙏

      I hope you’re doing well!

      Liked by 1 person

      Reply

      1. I knew “sacrifice” wasn’t the word to use which is why I rarely comment on the blog. As well as I was able to express my self for years before, my memory and cognitive abilities make even having a conversation daec to face a struggle. Always nice hearing from you.

        Liked by 1 person

      2. Thanks Tammy. I hope you didn’t interpret my clarification as harsh. 😊 I always appreciate you taking the time to comment!

        Like

    1. Thanks Ganga. 😊 The salt water air is great. My mom, before T came into our lives, joined us for a visit one year to my in laws and also slept very well. Something very curing and healing about the water!

      Liked by 1 person

      Reply

  16. Wise choices, Ab. It took retirement to admit that I had become a workaholic. That’s tough when you’re also trying to be a good spouse, father, son, brother, employee, and slip in the occasional community service project. When we get pulled in too many directions, many of those relationships start to suffer. My life has been back in balance for a long time now, and I always think about that whenever life gets hectic.

    How is the new Madonna album?

    Liked by 1 person

    Reply

    1. Thanks Pete. 😊 I’m very fortunate that I love what I do for work. But similar to you, it also meant taking on a lot of extra curricular activities that takes away from the time, energy and focus I have for T. I’m thankful for the recent reflection to streamline and to be more in balance (love that term, thanks!). 🙏

      The new M album is great and it’s her 68th birthday today so it’ll be on full blast over here! 🤣

      Liked by 1 person

      Reply

    1. Thanks Arlene. 😊 I wouldn’t really view it as sacrifice but more about being realistic about my capacity and focusing my limited time and energy on what’s most important.

      Good morning to you too! 😊

      Liked by 1 person

      Reply

Leave a Reply