FASD: Reflections from a Caregiver

by Laurie Doneen

Every once in awhile I like to share different perspectives of this journey. A caregiver on one of the groups I’m in shared some reflections on her journey that was very powerful. She gave permission for it to be shared.

I’ve been thinking a lot about how my life has changed since I agreed to become my gal’s Mom and hope you will indulge me in a rather long winded reflection on my journey.

Parenting our kids is hard, there is no doubt about that… and I am in awe of every Mama and Papa Bear who is raising a child/teen/adult who has been impacted by FASD. To those of you raising more than one child who has FASD, I truly don’t know how you do it!!

What I have found in my journey with my daughter is that I’ve had to make a paradigm shift in the way that I parent. I’ve had to throw out everything I ever learned from my parents/family about raising children. I can’t rely on the skills I gained raising my neurotypical sons… and it wasn’t easy to realize I didn’t know how to parent my daughter. Those learned skills are ingrained in my being and they still show up, despite knowing what I know.

My daughter has an organic brain injury that will not change. It can’t be cured, there is no fix and she did not choose this. She did nothing to deserve this and she has to live with it every moment of every day. Combined with the trauma she endured as a little one, she has and continues to fight to be happy, loved and find her purpose in a world that doesn’t get her. I cannot begin to imagine how difficult it is for her, but I do know how difficult it is for me as her parent.

At the age of 22, does she want her Mom’s help 24/7 each and every day? Heck no!

Does she need my help? Absolutely!!

She just wants to be normal, like other 22 year olds who are learning how to make it in this world filled with judgement, opinions and risk. She doesn’t like how her brain works. She is filled with remorse after a meltdown. She hates that she needs to be reassured over and over again that her boyfriend will not leave her in the dust like so many others have. She knows the family she has now won’t leave her but her brain lives in fight or flight mode. Her brain is stuck in survival and the gear shift that helps normal people move out of that mode is broken.

Does she frustrate me? You bet she does!

Does she appear to be selfish and behave like she cares about no one but herself? Absolutely!

Does she understand in the moment what she is doing? Not a chance.

Reminding myself that she has an irreversible brain injury and that she isn’t choosing her behaviours (even though it looks like she is) is key to getting through my day. Taking it back to brain helps me to meet her where she is, and it’s certainly not 22 even though she desperately wants it to be.

I’ve learned I need to be open to what she is telling me, in whatever form that takes. She is using whatever resources she has to communicate her needs and her toolbox is much smaller than mine. I’ve learned to think outside of the box, finding solutions that work for her. They may not make sense to the world out there who seem to be watching and judging my every move, and that’s okay, because I know they work for her.

If I feel the judgement that comes from those watching, I can’t begin to imagine what it is like for her to constantly hear how she has to be better, she has to make better choices, grow up, stop acting like a child, pick a lane… the list goes on. If I can be her safe harbour, I’m doing my job as her parent right. But that means I take the brunt of her frustration, those nasty words that she doesn’t mean but has to get out. It means I give her the space to let those frustrations out and I don’t take it personally (easier said than done…). It means that I don’t judge her for having a tough day or making a poor choice. It means that I see her clearly for who she is… a loving, funny, generous, exasperating, frustrating, stubborn human being who has fought more demons in her life than any child should have to. It means I take one day, one hour, one moment at a time.

It means I forgive myself when I screw up (and I do) but I also let go of needing to forgive her. There is nothing to forgive, she did nothing to cause her brain injury… she is doing the best that she can in that moment (even though it doesn’t look like that). That doesn’t mean she gets away with everything, I continue to search for ways to help her understand the harm her choices cause for herself and others. I work with her to help her learn (repeating the same message over and over and over again, in the hopes that eventually it will settle in her brain where she can retrieve it), I let those natural consequences help to teach her and I educate our family, friends and anyone who works with her.

It’s exhausting work and I do it for one reason and only one reason – she deserves it. She deserves to know she is not a bad human being, that her life has value and most of all that she is loved, unconditionally

Being her parent is not easy, let’s face it, it’s hell on so many levels, but it is the most important job I’ve ever had.

I’ve known Laurie virtually for a few years now. Her daughter and my daughter are similar in many ways – but also different. I’ve always appreciated the support she gives to others and her openness at sharing their journey in a way that offers some perspective, empathy and hope to others.

We know when we are in the middle of it, it is so hard to see beyond that moment. And we can get caught up in our own emotions and expectations. But when we aren’t in those moments it is the time to reflect and regroup and come up with a plan on how to move forward. Supporting a young adult can be challenging because so many want to be out on their own like their peers. And for those that just aren’t ready we walk a fine balance between providing support and honouring them as individuals.

If you want to contact Laurie, you can reach her at: lauriedoneen@shaw.ca

If you’d like to read a couple blog posts that touch on this subject, check out:

The maiden speaks about Growing Up With FASD

Reflections on some early learning: 7 things I just learned about FASD

Reflections five years later: FASD: What I’ve Learned So Far

A big part of our journey FASD: Grief and Loss for Caregivers

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