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.
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…