After 5.5 years, we’ve answered a longstanding question about our son’s life and then uncovered more questions.
When T was 18 months old, he received a prognosis of at-risk Fetal Alcohol Spectrum Disorder (FASD).
It’s been quite the journey since as the hubby, T and I experienced the highs and lows of life with a little understood invisible disability.
We continue to be blessed with amazing supports, including school and community services that have enhanced T’s life.
His developmental pediatrician had advised to wait until T was older to be formally diagnosed.
Last November, over five years after receiving T’s prognosis, our family began the process to have T formally assessed.
The Assessment Process
In early November, the hubby and I had a virtual in-take appointment with the organization that had supported our family since T’s prognosis.
Among those present were the psychologist who‘d complete T’s psych assessment and T’s developmental pediatrician who’d complete his medical assessment.
We had an open conversation about T’s strengths and areas of concern.
Three half day in-person appointments took place – full day if you include the drive! – over November and December and one virtual consult in January to complete T’s psych assessment.
The team asked us and T’s teacher to complete several lengthy questionnaires. T’s teacher was also interviewed.
It was important for the hubby and I to be honest during this process.
While it was hard to see the answers T’s teacher provided – including how she assessed T’s relationship with peers and how she was concerned T didn’t look happy at school – we appreciated her honesty.
Receiving the Diagnosis
In late January, the hubby and I reconvened with the assessment team to review their findings.
The team assessed 10 brain domains affected by FASD, which include cognition, memory, academic achievement and adaptive skills.
To meet the criteria of FASD, a minimum of three impairments must be identified.
The assessment identified T had significant impairments in executive functioning, attention and focus, and emotional regulation.
With these three impairments, and knowing T’s pre-natal alcohol exposure, the team concluded that T met the criteria for FASD.
Processing The News
The assessment team asked the hubby and I about what we thought and felt.
I got one word out and burst into tears. The rush of emotions was unexpected.
The hubby and I went into the meeting hoping for a diagnosis. To be frank, we would’ve been disappointed if there was no FASD diagnosis.
So on one hand, the diagnosis validated our home and school experiences from the last few years.
On the other hand, I felt deep sadness, because FASD is not an outlook anymore. This is reality – even though we’ve always known deep down.
My sadness was not about having a child with a disability. It was being reminded the journey ahead will be hard for our sweet boy.
A few weeks later, I am at peace with the diagnosis. The hubby and I agree this is ultimately a great and freeing thing for T.
Looking Ahead
The diagnosis does not change our unconditional love for T. It strengthens our desire to help him live his best life.
Having a diagnosis will open doors to continued supports in school and the community.
It provides a tool to advocate for T’s behalf and to educate others to understand his challenges from the context of a brain disability rather than behaviour.
The diagnosis will help us advocate for the appropriate interventions that address T’s challenges and help reduce the risk of potential secondary issues, such as mental health problems, disrupted school experience, drug and alcohol problems, and trouble with the law.
The hubby and I are still digesting the detailed assessment report.
The team provided many wonderful recommendations – for home and school life. We intend to action on as many of them as we can.
We shared a modified report with the school – with T’s lengthier personal history removed. We feel that being open demonstrates our genuine intention to work collaboratively with them to identify the best solutions for T.
It is very helpful that one of the recommendations from the report was that T will require significant supports in school.
I have so many questions in my head.
One key question is how and when do we share his diagnosis with T – in a way that empowers him rather than crushes him.
It feels overwhelming to think about it.
But as life with T reminds us on a daily basis, we can only take it a day at a time.
And so, the journey continues…
You have a difficult road ahead, but because your love for your child is so deep and unconditional, every small victory will be very rewarding. You are such amazing parents and your family deserves many small victories along the way.
Thank you for the kind comment. 😊 It will be difficult for sure but I know there will also be so many fun moments and adventures and growth along the way and that is what we will look forward to. 🙏 Thanks again and have a nice weekend!
Thanks, you too!
That sounds like quite the lengthy assessment process, but it’s good to be thorough and to know for certainty. I imagine it was tough to process in the moment as you’re feeling a rush of emotions. Glad to hear that you’ve made peace with it and have a path moving forward. T is so lucky to have you and the hubby in his corner, and you and the hubby are so lucky to have T in your lives.
Thank you, Linda. It was very thorough for sure but I’m glad they did it that way. If we had done it through the school board, I’m not sure it would’ve been as comprehensive. The data is so good to have because we can identify more specific interventions and supports. So it’s been a good thing! 😊 Happy weekend!
I’m newer to your blog but what I seem time and time again in your posts is so much conscientiousness in parenting and the unconditional love for your son. I’m happy for your family that you got the diagnosis so that things can move forward in the right direction. I can’t imagine how difficult this and will continue to be. But from my point of view, I see a wonderful parent who is willing to do everything they need, difficult or not, for their son and I hope you give yourself credit for that. You got this! T couldn’t be in better hands.
Thank you for sharing this thoughtful comment! 😊 We are hopeful things are moving along in the right direction and while I do spend time focusing on challenges in my writing, there are so many positives to celebrate. And for that, I am so grateful. 🙏 Thanks again and take care.
When we finally received Jessica’s correct diagnosis at age 20, it was also a relief and a WOW! But, nothing changes, Jess is still Jess – we were always treating her needs, not her diagnosis – and the silver lining is the people I have met with similar DX. I love the ending of your essay. Yes, the journey continues – even when your kiddos are in their 30s!!! T is lucky to have you and your hubby as dads and amazing advocates!
Thank you, Vickie! 😊 And for sure, we imagine this will be a lifelong journey that has only just begun a new chapter.
I’m glad the blogging world has connected us. Your and Jess’ journey and your thoughtful comments have been much appreciated! 🙏
I am so relieved you got the confirmation of what you already knew in a sense. It is good to know that T is now diagnosed with a legitimate brain condition and hopefully his issues won’t be looked upon as behavioral.
As for when and how to tell him about his diagnosis, this is a really good question. I don’t have FASD but am autistic and I wasn’t diagnosed until age 20, so in that sense my experience is different. However, I did have many psych evals from age four or five on. My parents started sharing psychological reports with me at around age 10 or 11 and by that time, they shared them with me without much explanation. I didn’t like that.
In any case, I agree with the commenters who said that I hope that, when T grows up, he’ll realize that his diagnosis didn’t change the unconditional love you and your husband have for him.
Thanks Astrid. I really appreciate you sharing your personal perspective and lived experience.
I particularly appreciate hearing from you about what you didn’t like about your parents approach. I think the explanation piece will be so important and must be done in a sensitive and age appropriate way.
Our FASD worker shared a resource with us on how to share the diagnosis. It’s a bit of a dense read but will be digging through that soon as well.
So many questions but thankfully we have some time before we need to tell T. 🙏 Thanks again for your very thoughtful comment. 😊
I’m saving this post after reading it more than once today & still not able to process my emotions. If it’s OK, I’d like to communicate w/you by email soon, once I take care of some personal matters I’ve been dealing with. Much love to you & your family!
Thank you, Tammy! I’m happy to communicate by email. 🙂 You can contact me at mylovablepest@gmail.com. Good luck with your personal matters!
I hope T will understand, sooner or later, that you and your husband have nothing for him but love, and love is the most precious thing parents can give to their child. So when he grows up and the time has come for him to face the world, he knows that his parents’ love has helped him got that far.
Thank you for your words of encouragement, Harinda! 😊 I am hopeful things will be as ok as they can be. 🙏
By the way, you can call me Bama. It’s a long story, but that’s what everyone calls me. 🙂
Ok, thank you for clarifying, Bama! 😊
No worries! 🙂
Reading your post, the journey you and your Hubby with T from then to now is truly a a testament of light, Hope and kindness in a world hungry for love, understanding, patience. This struck me as a Parent, “One key question is how and when do we share his diagnosis with T – in a way that empowers him rather than crushes him.” Powerful and inspiring. Thanks Ab. You are truly amazing.
Thank you for your continued words of encouragement. They always help a lot! 🙏 And yes, figuring out how to answer that key question will be on my mind for the next while but I know we will find our way to the destination.
Happy Thursday! 😊
Wow, I love you last line, “And so the journey continues.” And I have so many questions — like if it’s 3 out of 10 areas that were identified, does that mean he’ll have a more straightforward journey than if more were? Or is which area that is identified that is key to the road ahead? But I’m sure that the whole arena is so complex that even my questions show how uneducated about FASD I am.
But what seems so understandable is your emotion at the diagnosis. You’ve been walking a tight rope towards this and finally hit solid ground. And yet sometimes not having things defined means we don’t have to deal with them. I love your attitude of collaboration and openness. And the enduring love you have for T. Amazing and inspirational. Please know that I am behind you all the way on this journey – sending my best, even as an “in the cloud” blogging friend.
Thank you, Wynne! 😊Your thoughtful blogging support is always appreciated.
FASD is a spectrum, so every individual has different symptoms depending on the impairment.
The three impairments identified for T are no surprise to us. It was basically our life the last 5.5 years. He was assessed as comparable to his peers in his other domains and who knows how that will change in the years to come.
The good news is that he has many strengths that we can build on and we also have clarity on his areas of need so we can advocate for appropriate supports in those areas.
It is complex and while I know more about it now than in 2016, it’s still a big learning curve. One day at a time! 😊🙏