Sharing A Child’s FASD Diagnosis with Them

How do you share difficult life changing news with a young child?

That’s a question I’ve been thinking a lot about since we received T’s FASD diagnosis in January.

The hubby and I shared the info with the school right away as it would better inform the way they supported T.

We’ve held off on sharing the info with T as it’s been a year of unexpected events and we didn’t want to add this on top of everything.

We’ve decided we will share his diagnosis this summer, as it is a less pressure time.

We also have three weeks off – can’t wait! – to spend with the hubby’s family and T’s favourite cousin, which can provide positive emotional cushion.

We believe that honesty is key.

From lived experiences shared by individuals with FASD that I’ve come across, they speak about how knowing their diagnosis helped made the world make sense to them.

This testimonial below by advocate Reinier DeSmit, who received his diagnosis late in life, moved me deeply when I watched it a year ago.

I consider our family very blessed to have received this diagnosis early on in T’s life. I feel deep in my heart this will benefit T, despite the hurt, confusion and anger it may also cause.

We will take a strengths-based approach.

From resources I’ve seen – see the links at the end of this post – it’s important to take a strengths-based approach.

We will highlight T’s many gifts: He’s a bright, caring, funny, strong, determined kid among many other positive qualities.

We will discuss that because of his diagnosis, he will need supports – such as why he’s had a CYW.

Where possible, we will use age appropriate tools, such as books and online games (see a great example below).

We will be upfront that we don’t know all the answers but reassure him – and ourselves – that we’ll figure it out together.

Knowing T, we will need to do this over time. We only get his attention for a short while, so we will need to do this in bite-size age-appropriate pieces.

Best case scenario, there is instant adoption and a positive reaction. Worst case scenario, anger, hurt, confusion and resentment. And of course, everything in between.

Regardless of the outcome, we will do our best to support him with patience and empathy.

We know this will be a difficult conversation(s), but it will be one of the most important milestones in our parenting journey with T.

Community Resources

Here are some great resources shared by our FASD service coordinator on how to take a strengths-based approach in sharing and helping a young child understand an FASD diagnosis.

Do you have a recommended resource to add to the list above? Please e-mail me at mylovablepest@gmail.com.

24 thoughts on “Sharing A Child’s FASD Diagnosis with Them

  1. I am in awe of your willingness to share such a difficult diagnosis with T at a relatively early age. I wasn’t informed of the outcome of my psych assessments until I was eleven and, at the time, was read the full report and expected to digest it rather than given the info in an age-appropriate manner. I am also in awe of the fact that you and the school are cooperating so well, because my parents and the school were always fighting (because the school saw my additional needs and my parents didn’t). Good luck this coming summer. I am sure you’ll all get through this one way or another.

    Liked by 1 person

    1. Thank you, Astrid. That is very nice of you to say. We are very blessed to have many who came before us who paved a path for us with their lessons and experience.

      I can see the fight between parents and school. We are lucky to have a collegial relationship so far but I know it may not always be this way. 🙏🤞🏻

      Take good care.

      Liked by 1 person

    1. Thank you! I hope so. It’s gonna be a bumpy ride, especially as he hits his teen years. But all we can do is to go focus on the strengths and to not poke our eyes out in the process. 😊💕

      Liked by 1 person

  2. I like to think that honesty is the best policy as well. T may not fully understand the implications, but at the very least, he should know that it’s nothing to be ashamed about and it creates the opportunity to ask questions and have a discussion. Best of luck, although I don’t think you need it since it sounds like you’re pretty prepared and have given this a lot of thought!

    Liked by 1 person

    1. Thanks Linda. We’re as prepared as we can be. 😊 It will hopefully be as good of a summer as possible regardless of the reaction. Hard to believe there are only 7 more weeks of school left!

      Liked by 1 person

  3. I can’t imagine everything that has gone through your mind to prepare for this difficult but necessary conversation (and its follow ups). I commend you for all the research you’ve done. This shows that not only are you loving, but also very responsible. I really hope for the best for T!

    Liked by 1 person

    1. Thank you Bama. Lots to think about for sure but we are as prepared as we can be. It will be an interesting and fun summer regardless, I hope. 😊

      Liked by 1 person

    1. Thank you, Gary. That’s very kind. You are an inspiration to myself and many others as well. It’s wonderful that we can all support, inform and inspire each other! 🙏💕

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  4. “We believe that honesty is key.” That statement in and of itself is so powerful. Your approach along with how you face it every day as a difference not a source of shame, says so much about you and the amazing work you are doing as a parent. Bravo, Ab, Bravo!

    Liked by 1 person

      1. I’ll be sending great thoughts to add my hope that it is as well. But as you indicated, there’s an immediate reaction and an underlying acceptance that is more pervasive. I know you will support that acceptance and reality with lots of love and positivity!

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  5. An excellent plan for telling T – Again, your insight continues to inspire – and you are helping so many families – There are many famous accomplished people with FASD perhaps that could be helpful – I did a quick google and found that American Politician Bernie Sanders has FASD – not that he would impress T but I am sure there are others who would!

    Liked by 1 person

    1. Thanks Vickie for the encouraging words always. I did not know that about Bernie Sanders. How amazing! And you’re right, the lived experience and testimonials of others can help inspire and motivate.

      PS. It looks like you’ve been busy on a book tour. Enjoy and congrats!

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  6. You amaze me. Your approach is spot on, I think. Each scenario is unique, and in your family, telling him this summer seems perfect. There are a few Podcasters I am blessed to call friends who have raised children with FASDs i can out you in touch with if you want. It seems you have an incredible support system already though, and kudos for telling the school early on. Love your posts! Keep em coming!

    Liked by 1 person

    1. Thank you, Rebecca. I really appreciate that, especially since I know you view this from both the perspective of lived experience and as a parent!

      We’ve been lucky to have been connected to a community through our service coordinator that I have yet to reach out to. It’s a community hotline staffed by parents. I just have not had time to reach out yet (we need more than 24 hours in a day). I appreciate your offer to connect and will let you know if there’s a need. I just don’t want to waste your or anyones time at this point.

      I listen to Jeff Noble’s podcast – in case you’re referring to that one – as well as am part of the Social Media groups (that’s how I discovered your blog).

      Thanks again and enjoy the rest of your day!

      Like

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