“I believe, I believe, I believe in you.”– Kylie Minogue
When we first received T’s prognosis of at-risk FASD, one of the things I obsessed over was how many blocks he could stack, because it was a question asked during his assessment. We practiced every day as if his life depended on creating a tower with a minimum of three blocks. In hindsight, it was so silly to worry about this, but when you’re processing hard news in real time, like your child’s potential outlook, emotions often overcome logic.
But the great thing about getting T’s prognosis was that it connected us with early intervention services that were – and continue to be – so valuable for his development. Much like the blocks T learned to stack, I think of a child’s development like stacking building blocks. You try to create a solid foundation and then stack new skills, knowledge and experiences on top.
But for kids with special needs, obstacles get in the way that are comparable to the child having missing or broken stacking blocks, a damaged or deficient foundation to stack on, or the child requiring additional temporary or permanent scaffolding to support their building.
One of the most valuable lessons we’ve learned in our parenting journey is that early intervention is incredibly important in a child’s development.
Research from The Center on the Developing Child at Harvard University has shown that the brain and the foundation for a child’s learning, behaviour and health are most flexible and malleable during the first three years of life and they form the foundation upon which cognitive and language skills develop. High quality early intervention supports can alter and influence a child’s trajectory and improve their outcome. The early years are crucial and intervention is less effective in adolescence.
Here’s an overview of early intervention supports T received and how they made an impact:
Speech and Language Therapy
The American Speech-Language-Hearing Association defines speech-language pathology as work that includes the prevention, assessment, diagnosis and treatment of speech, language, social communication, cognition-communication and swallowing disorders in children and adults.
Immediately after we received T’s prognosis, we were connected with speech and language therapy services from Surrey Place. A speech pathologist worked with my hubby and I to develop the skills and knowledge to work with T to develop, encourage and grow his speech and language skills. They also recommended additional resources – such as books, toys, or online resources – to supplement our learning and a set of tools, such as The Hanen Centre’s It Takes Two to Talk program.
T received a review assessment every few months from the speech pathologist to monitor his progress and to then provide recommendations to continue his growth.
Some of my favourite memories on our parenting journey include taking T to Surrey Place on Friday afternoons when he did an eight-week intensive intervention block. They had a huge indoor playground and because it was a Friday afternoon, we had the playground to ourselves. The speech pathologist used the space as an incentive for T to finish his “work.” Those were such fun times.
T is a chatterbox these days. Although we are currently dealing with some challenges around a potty mouth – picked up from older kids on the school bus – we are so thankful for the progress he’s made, largely thanks to the early intervention support.
The Canadian Association of Occupational Therapists defines occupational therapy as a type of health care that helps to solve problems that interfere with a person’s ability to do everyday things like self-care (e.g. getting dressed, eating), being productive participants at school or in the community, or leisure activities (e.g. sports, social activities).
We’ve been pretty fortunate that T’s gross motor (e.g. walking, running) and fine motor skills (e.g. feeding himself) have been developing well and that needs in this area are minimal. Thus, OT services we’ve received have been infrequent – and include check ins at home or school.
Children, especially those with special needs, are visual learners. This was one of the best lessons my hubby and I were taught by our supports. They created and provided tools for us that have included visual aids for self help skills that have included washing hands and getting dressed.
Through OT services, we learned that T seeks proprioceptive inputs, such as chewing objects, running around, walking on tiptoes (which he continues to do), and throwing himself onto the ground, as a way of self soothing and calming himself in an over stimulating environment. This insight has helped us provide recommendations to his school and daycare – to varying degrees of efficacy – on how to respond to his behaviours.
Healthline describes behavioural therapy as an umbrella term of types of therapy that seek to identify and help change potentially self-destructive or unhealthy behaviours. It functions on the idea that all behaviors are learned and that unhealthy behaviours can be changed and focuses on treating and changing current problems.
Of all the things that my hubby and I have read about FASD, it is the behavioural challenges that give us the most pause. In worst case scenarios, we’ve read about adolescent children having run ins with the justice system or whom manifest secondary challenges, such as mental health issues. We anticipate that behaviour – or responses by others to how they perceive T’s behaviours – will be one of the biggest challenges T will face in life.
So when we learned Surrey Place had behavioural therapy services, we inquired about them, even though we knew the wait list to access services often spanned years.
After two years, we were taken off the waitlist and received a behavioural assessment. The timing was perfect, because we were having some challenges around compliance, defiant behaviour, and hair-raising tantrums and meltdowns. The behavioural therapist was incredible and provided pragmatic recommendations on how to deal with our pressing concerns around T’s behaviour.
The behavioural therapist has also pointed us towards fantastic positive parenting resources, including registering us for a three-part positive parenting course – for free! – which I found incredibly helpful and eye-opening.
We were put on a further waitlist for another year and have just started ongoing behavioural therapy consultations with Surrey Place – and she’s also observed T in his school and daycare environments and have provided some great suggestions.
This is still a new and ongoing process for our family and one we have ongoing struggles with. But we are seeing positive results and are hopeful we are curbing T’s trajectory towards the right direction.
T started junior kindergarten last Fall and we are still learning about the different types of educational supports and programs available in the public school system. And the lessons learned and challenges faced will be shared on a separate post.
In T’s preschool/daycare days, we placed him in a Montessori environment, starting with the toddler program. We learned early on about Community Living Toronto, an organization that provides Special Needs Resource Consultants to work one-on-one with children in a daycare environment on a regular basis. We requested and received these services, on the basis that T needed supports around speech and language. We had not disclosed his prognosis with the Montessori – but did with the resource consultant – in the beginning.
T worked with two resource consultants in the Montessori and they were both so wonderful. They visited him once every two weeks, observed him, gave us detailed reports and provided recommendations to T’s teachers and to us to address issues such as turn taking/sharing, sitting still, and potty training. We were very diligent about following them, as they made a difference.
Two of our favourite resources in T’s toolkit came through our resource consultants: a book called “Even Firefighters Go to the Potty” to help encourage and motivate him to use the potty and a game called “Don’t Break the Ice” to help teach him about turn taking in a fun play-based way.
How to Find Supports
Prior to adopting T, the only thing I associated the word “intervention” with was the television show about substance addiction. The past three and a half years have been an eye-opening, humbling and rewarding journey for my hubby and I to learn, in a hands-on way, about early intervention.
We have the following individuals and organizations below to thank for educating us and connecting us with the supports that have made a hugely positive impact on T’s trajectory.
For parents and caregivers starting on their special needs journey, these are the individuals you want to speak to. There are no stupid questions. Take advantage of every service that they provide:
Our family doctor connected us to Surrey Place based on what we knew about T’s medical history – prenatal exposure to alcohol and drugs. Through Surrey Place, we also receive support from a developmental pediatrician who specializes in children with special needs. Both have been wonderful pools of knowledge and conduits to additional resources for T.
The Montessori School’s administrator let us know about Community Living Toronto when we disclosed that T was receiving speech and language services from Surrey Place. When we were starting to plan for T’s transition into public school for kindergarten, we were forthcoming about his prognosis and a principal helped connect us with a specialized kindergarten intervention program. We are now working with T’s principal to advocate for educational supports as he transitions into senior kindergarten. In short, principals and teachers – in general – can be great allies to connect your child with the educational supports they need to thrive in the classroom.
I am fortunate to receive health benefits through my employer – and I realize this is a privilege and not a reality for everyone – and was able to get a few private speech therapy sessions covered before we were referred to Surrey Place. Other types of services that employment benefits plan may cover include wellness programs, such as family counselling, that may be of great help for parents and caregivers in their special needs journey.
My hubby and I are a part of a few private online groups. While we are mostly lurkers rather than active posters, it has been so helpful to be immersed in an environment with people who are facing the same challenges as you. You feel less alone, helpless, and crazy and in many cases, it’s been helpful to read about other people’s shared experiences and to then know about other types of services and supports to advocate for on T’s behalf.
It’s a Big Team Effort!
If it’s one thing that my hubby and I have learned about parenting, it’s that it is one big team effort.
We have so many incredible individuals on “Team T” – family, friends, school and daycare staff, medical professionals, social services staff – who are working hard and rooting for him to succeed.
Thanks to early intervention supports, T has made tremendous gains. I remember during our Age 3 check in with the developmental pediatrician at Surrey Place, T was on top form. Among the many tasks he was asked to complete was to stack blocks. I watched with anticipation to see how high he could stack his tower. 12 blocks high! Everyone in the room, including the speech pathologist and family psychologist, cheered him on.
I realize that T will need to learn a lot more than just stacking blocks to thrive in life and that there will always be a new curve ball waiting around the corner for T. But knowing that we live in a community that has such amazing services for the most vulnerable members of our society makes me feel optimistic, confident and less apprehensive about what lies ahead.