Sharing Our Son’s FASD Diagnosis with Him

There are crucial conversations in life that stick out vividly long after they’ve happened.

Coming out when I was 14; telling my parents I was moving out; our wedding vows; the adoption worker telling us we were matched with T.

Over the Christmas break, I had two more: one that was planned and another that was unexpected.

A few days before New Years, I drove to my mom’s to deliver the news my sister had suddenly passed away that morning.

That was one of the hardest things I’ve ever had to do.

In comparison, sharing T’s diagnosis of fetal alcohol spectrum disorder (FASD) two afternoons before seemed like a walk in the park.

The anticipation was daunting.

We had wanted to tell him in the summer vacation before the new school year started but we decided to keep summer light.

We were then going to tell him in the fall, but my sister’s cancer took a turn for the worse and she moved in with us.

We decided Christmas break was going to be it – no more delays.

My sister was admitted to the hospital on Christmas Day, so it created some privacy in our home to share the news with T two days later.

It was the late afternoon, after a very relaxed day at home of play, play and more play.

I was resting in our room, when the hubby came in to lie down too – and not soon after, T came in and sandwiched himself right between us.

So much for my nap, I thought.

Then without a heads up to me, the hubby just went right into it.

He asked T if he knew what alcohol was. And T said he did not.

He briefly explained what it was and said that his mom had drank while he was in her tummy.

Then he asked T if he remembered being taken to Surrey Place a year ago to meet with the doctor (psychologist) to play games and answer questions.

T said he did and the hubby explained it was a series of tests that helped us learn that T had FASD.

I then said that a lot of people and kids have FASD – and it’s what happens when the baby’s brain is exposed to alcohol while they’re in the tummy.

We said that for him, FASD means he is hyperactive and has a hard time sitting still.

As I said this, he was squirming and doing his “fish worm dance” on the bed.

I explained that it also means he has a hard time with controlling his impulses.

As I said this, he was kicking me gently on my leg.

I also said that he has big emotions and FASD means that he has a hard time controlling those big emotions at times.

Lastly, I said FASD also means he has a hard time focusing at times – like doing his work in the noisy and busy classroom.

Funnily, he then went down to get a banana as I was in the middle of explaining this.

We told T that FASD is very common and that lots of people have it.

He then asked if we had it.

After we said no, he then asked if his cousin A has it and if that’s why she jumps around uncontrollably (stims) sometimes.

We explained that she has autism and that while it is different from FASD, there are a lot of similar things to think about.

He asked if that’s why he digs his hands and we said, yes, it’s probably related to him stimming, in the same way his cousin jumps around.

We told him FASD is nothing to be embarrassed about and he immediately responded that he’s not embarrassed.

I love how he said that so quickly and with such conviction.

We told him he has so many strengths – he’s bright, caring, funny, curious – and that these strengths will help him overcome the challenging parts of FASD.

We said that FASD is what makes him him and we are so lucky to be a family.

We ended off by saying that it’s a lot of info we just shared with him and that we will unpack it together because we’re a team and that he can ask us questions or share his thoughts anytime he wants.

To be honest, it was not quite how I imagined it going. I had it so planned and scripted it my head and this just felt so spontaneous and sloppy.

On the one hand, I kinda wished the hubby gave me a heads up he was going to launch into it.

On the other hand, it felt so cathartic to finally get it out there.

There is so much to unpack over the next few weeks, months and years for T and with T – but the seed has been planted.

I genuinely believe this will benefit him in the long run and help him understand his day to day and his interactions with the world.

During the latter half of our conversation, he came to give us both a big hug and told us he loved us.

When I asked for another hug, he told me to go away because “your breath stinks!”

Yup, T is T and we wouldn’t have him any other way.

26 thoughts on “Sharing Our Son’s FASD Diagnosis with Him

  1. I can’t imagine how hard it can be to explain such hard things to a child. You and your hubby seem like a very responsible and calm parents, despite all the challenges. How do you manage to keep the patience, what helps you with this?

    1. Thanks Maja. It’s nice to hear that we seem like calm and responsible. 😆 I can assure you we lost our patience on a regular basis. Raising a child with FASD – or any disability – is very hard. I think what keeps us grounded, motivated and yes, responsible, is our love for our child. He drives us nuts on a daily basis, but we love him and we recognize that many of the exhibited behaviours are beyond his control and due to his disability. We also try to practice kindness with ourselves when we or he does not present his best version forward in a situation. It’s not easy but it’s worth every hardship. And we also focus on the many positive moments of fun, joy and laughter.

      1. Thank you for all the details Ab 🙂 I believe you that is hard, yet very rewarding at the end of the day. I wish all the best to the three of you.

    1. Thank you. We are thankful it worked out the way that it did. The questions are great and tell us he’s getting what we’re saying. 🙏🤞🏻

  2. Good for you and the hubby for telling T about his FASD diagnosis. There’s never a perfect time to have these types of conversations. It’s funny that no matter how much we prep or prepare, sometimes the conversation goes much differently than we expected. It seems like T took the initial news well and even asked a question about it, which shows that he is processing.

    1. Thanks Linda. You’re so right, we can prepare all we want and things just happen and we just gotta roll with the punches. So glad we’ve had the conversation and he’ll lead the way with where it goes next. 😊

    1. Thank you! T loves animals and the outdoors and it is my wish that when he gets older we can travel and explore your part of the world! 😊 A safari is high on the bucket list!

  3. Ooof I know this has been weighing on you a lot based on your other posts. I’m glad the talk finally happened and had such good outcomes! I truly believe that is because it’s a reflection of your amazing parenting.

    1. Thanks so much Caitlyn. We’re very happy we had the talk and we’ll let him lead the way when he’s ready to keep talking about it. 🙏 Hope you are doing ok and better!

  4. Oh I can imagine the anticipation, all the things in your head in preparation for the time to tell T about his diagnosis. Then, boom! Your husband suddenly talked about it without giving you a heads up. 😅 But it must have been a relief how well things went, with T doing the worm dance et al. I love how he said he’s not embarrassed. I guess this is a result of both your and your husband’s love and support for him. I’m so happy for the three of you!

    1. Thanks Bama. We had talked about how we would do it during the break but the timing still did catch me off guard. But I’m so glad he did it, because it was good to have it just out there. The “work dance” is just him squirming and not being able to sit still. 😆 We are happy for us three too. 😊 As they always they, the truth sets us free.

  5. Those candid talks can be tough, I can only imagine the build up of anxiety. Sounds like by the three of you finally discussing it, was at least a bit of a weight lifted.

    1. Thank you! The anxiety buildup for sure is not fun and it’s often worse and harder in your head than it ends up being. A weight lifted is a great way to describe it! 😊

  6. I am in tears. Tears of happiness. You guys have such conviction and such strength in your parenting journey with T. Telling him is the eight thing in my opinion. He can now like you say figure himself out. My diagnosis has made all the difference in becoming so much more introspective! I hope to see you in the meeting next week. So excited to connect. Have a wonderful weekend! Tell hubby and T I say hi!!! And love Ts glasses! The colors are awesome!

    1. Thank you, Rebecca. We are so happy we had this important milestone conversation with T.

      We have lots of wonderful resources, like those from CANFASD and the kids book you suggested (we have our own copy now) that we’ll share with him over the next while. We’ll let him lead the conversations when he’s ready.

      And yes, I’m looking so forward to meeting you at the group call next week! 😊 We are a large and awesome group and out of respect to the others on the group, I won’t talk too much. But I’m there listening with great attention. It’s so great you get to be our guest! 😊

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