What Does my Family Need? The Truth from the Trenches!
By an Adopt4Life Community Parent
As I sit here today, reflecting on our journey with our daughter, now age 11, I am sad, and I am frustrated. We received her diagnosis of FASD when she was 5 ½. We left Toronto with the diagnosis and nothing else. Nothing! Well, we did leave with our sweet, funny, outgoing, notice-everything-in-the-world-around-her little girl who loves to sing, craft, make messes, dance, and help the less fortunate. Keeping our focus on that is what has brought us through some of our most challenging days.
Thankfully, I am an advocating type of Mother with a wonderful husband who supports all my energy but also knows when to pull me back gently.
I could go on and on and write about our daily struggles, the joys and the frustrations of living with a child with FASD, but that is not what my heart is wanting to share today. We are very strengths-based amidst our challenges, and have truly recognized that WE as her parents needed to change how we interact, respond, care for her, and adjust her world to help her find success. No one can do that for us. No doctor, no therapist, no meds, no program—nothing will work unless we truly step back and do the work ourselves in our daily lives.
Today as I reflect on our daily lives, I could go on and on with resources, things that have worked, things that have not worked, days that have been awful, days that have been amazing! But we can all find strengths-based resources with a simple Google search… so I will leave that for now!
Today, as I sit and write, I am going to express my feelings as a PARENT of a child with FASD in Ontario and as a PARENT (who for the past 6 years) has attended EVERY possible FASD awareness meeting, round table, community gathering for FASD with “officials” who are wanting to make a change in Ontario. There have been times I have walked away feeling hopeful, excited at change that may happen, only to be disappointed that families living on the front lines are seeing very little support from “officials” working in the field of FASD. I know there is a lot of behind the scenes government advocating, writing letters, attending meetings and for that of course we are grateful. BUT how is that impacting families? We are still faced with ZERO community-based resources from local agencies, families are still be turned away from agencies because they don’t “deal with FASD”, schools are not understanding FASD and families are struggling - struggling hard in the trenches.
As a parent, I have the passion for FASD, I have ideas of what families need, I would LOVE to plan events, run another FASD walk for our community, but my energy is depleted. I am just trying to get through each day with our daughter and my energy is spent on supporting her in these early years so that we can have success with her as she grows. I have families reaching out to me for help and supports. I am happy to do this and LOVE connecting, sharing stories and finding ways to not feel alone on this journey. But why are they not finding that same care, compassion and support from agencies? What is wrong with the systems in place?
I look around now and see that we have many communities with local groups that have professionals on their boards, people being hired for FASD work in our communities, government-supported groups, etc. But truly what is all that work doing for those living on the front lines of every day? Families would LOVE to see a walk being organized and planned for them… to celebrate them and give them a day of fun, friendship, and hope. Yet, the only way that would happen is if parents (who are exhausted) step up, look for sponsors, funding, donations, etc. I know parents would be willing to step up and help, but to take on these sorts of things completely is too much.
Where do we go from here? With September being FASD Awareness month, I am sad. To be honest, I don’t want to participate, I don’t want to push anymore… not this year. And that is super sad. This is the first year that FASD Awareness Day has been made official by the Government of Ontario. Our agencies and people working for FASD, should have been on this and helping families celebrate!
We just want what the ASD community has. So to the government, workers, agencies, put an F on that and do the same for us. FASD deserves all the love, attention, advocating, care, and concern that other groups get. Parents need the help and support to move forward as a community and to find success for their kids and youth.
So that is the truth from the trenches… and where I am at on this journey with advocating. This is a tough journey… really only understood by those living it day in and day out. I hope that maybe, just maybe by next September, we will see communities and agencies planning events for families and really helping families celebrate how AMAZING they are!
