It’s Ok To Not Be Ok: Grief, Acceptance & Self Care for the Special Needs Parent

“Learn from yesterday, live for today, look to tomorrow, rest this afternoon.”

– Charles Schulz

After the first two weeks that T arrived into our home at 15 months old, I told my hubby, “This is a piece of cake.” By the third week, I told my hubby I wanted to give him back.

Parenting, as I’ve since been greatly humbled to learn, is a lifelong marathon, not a sprint. My hubby and I never expected it to be easy, but we never planned for the mental, emotional and physical challenges of raising a child with special needs.

I was halfway through my 30-week adoption leave when we received T’s prognosis of at-risk FASD. The news hit us very hard and it impacted me on a heavy emotional level in the beginning.

I read up as much as I could about FASD. On the positive side, I became super informed very quickly. On the bad side, I started to obsess about every detail. T had a big meltdown… oh no, he’s going to end up in prison like many FASD kids do. T hit a child in the park… oh no, he’s never going to make friends, because FASD kids have difficulty making and maintaining friendships.

My mind played these endless games and I had a hard time containing or escaping my thoughts, worries, anxieties and fears.

They say that when you receive a prognosis – or diagnosis – you go through stages of denial, grief, and eventually acceptance.

I remember a few afternoons during my leave when I’d prepare dinner and T would be playing in the living room and I‘d randomly burst into tears. I felt so helpless for our sweet, beautiful little boy.

It’s enlightening to look back at our four-year and counting journey and to chart my hubby and my through those cycles. I’d say we were lucky to get through the denial stage quickly, because of what we knew about T’s history and we tend to be pragmatic in nature.

The grief I felt in the first year was very hard. I started to look for positive success stories and found very little through online videos and groups. Then on these groups, I’d read about the hardships these children encounter in life, as they enter adolescence and adults, and that it never really goes away. And that part was so hard to process.

And then, we’d have a regular check in with our developmental pediatrician and T would do so well at these check ins. So we’d be injected with renewed hope. And then something shitty would happen to bring us crashing back down.

The lowest emotional low I’ve experienced so far was dealing with T being booted out of the Montessori last year and then his specialized kindergarten program being cancelled a few months later. I truly felt like the world was against our little boy and that his future was cemented towards a dark and futile path. But somehow my hubby and I got through it.

I don’t remember exactly when or what allowed us to move from grief to acceptance, but it was around the time I went back to work. It felt a heaviness had lifted. We stopped talking about the “what if” and started talking and acting in terms of “what now” when shit, big or small, happened. Although T has yet to receive a formal diagnosis, we know we are facing – and he is facing – a lifetime of challenges. It’s not a matter of if, it’s a matter of what.

It’s this acceptance that allows us to persevere each day to be focused, driven, positive and optimistic in dealing with whatever is thrown our way. Most days are good; others, not so much. And when hard things come our way, we eventually get through them and that’s what I remind myself of when I’m having a trying moment.

I wish I had a magic formula to offer other parents going through their grief cycle and who are struggling with day to day challenges. One thing that has helped me move forward in a positive way is to acknowledge that it’s ok to not be ok and to realize the hard truth that I am of zero value and no help to T if I also don’t take care of myself.

Self care is so important. Here are a few strategies that have been helpful for me.

  • Talking and writing about things. Thank you for listening and for reading along, whoever and wherever you are!
  • Work life balance and compartmentalizing. When I’m at work, I am laser focused on my work. When I’m at home, my focus is T and I rarely do work on evenings and weekends. This is one of the biggest philosophical changes I’ve made for T.
  • I say “No”. No to invitations for volunteer or extra-curricular activities. No often times to special events. And yes to more unstructured and free time on evenings and weekends.
  • I take “mental health” days off once a quarter as alone time to recharge. And because T loves to torture me, he usually gets sick during these exact moments!!!
  • I tune out noise. I don’t look at parenting articles or listen to unsolicited parenting advice or feedback from people who think they know better. Sorry, I don’t have time!
  • I ask for help. My hubby and I are so blessed to have many amazing services for T. Surrey Place offers family counseling services and I gladly added myself to the waitlist. For the past 2 years, I’ve had super helpful monthly chats with a fantastic child psychologist. She helps me articulate my thoughts – positive and not – and helps me focus on pragmatic and positive ways forward.
  • I exercise. I go during my lunch break to the gym next to my work. Gotta love endorphin rushes!
  • I laugh and try to have a perspective about things. Yes, we have challenges. But in our case – and I know it’s not the same for other parents in similar situations – they really are 20% of the big picture. They just seem to suck all the attention, focus and energy away from the good 80%!
  • I celebrate the victories. Practicing gratitude helps a lot. When I’m able to take a moment to itemize the incremental gains and successes from the past 24 hours, it really puts into perspective that the hard and annoying stuff are not that bad in the grand scheme.
  • My hubby and I are part of an online support group. This group provides a great way to connect with other families and help us feel less alone when we see others going through similar experiences.
  • It really helps to pay it forward. Just as others have paved the way for my hubby, T and I, we want to do our part to raise awareness and to advocate. Part of that includes helping reduce stigma about special needs and to normalize the experiences that these families go through, whether it’s denial, grief, or just trying to get through the day-to-day grind.

My hubby and I are fortunate and blessed. T continues to make many positive gains. Hard stuff don’t feel less painful but they feel easier to process and to recover from – and I hope it stays that way! We do our best to focus on that. But we are also better now at cutting ourselves some slack when things go awry. At the end of the day, it’s ok to not be ok and acknowledging that is part of the process of finding your way through it.

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