What follows is part of a presentation my daughter and I made to an FASD Caregiver Group; she spoke about Life with FASD and below is my presentation on being an advocate.
When I started this journey of being a mom to a child with FASD all I knew was what caused it. I knew nothing about what it looked like or how to parent a child with it. Let alone that I was going to have to not only be a parent, but a case manager, and an advocate. It was a struggle. I was a shy introvert. But one of the reasons the adoption worker chose me over the other two prospective parents, was the creativity and tenacity I had. Which is what is needed to support someone with FASD.
When the adoption worker met with me, she suggested that I read some books on FASD. There were no support groups. There were a couple online groups but they were very negative and although they were always willing to offer help, I found the negative posts too overwhelming so I stopped following them. There were no programs specific for FASD – there still isn’t many, but that’s changing. And there certainly wasn’t an FASD Key Worker. You are lucky because you have one. Alot of what I went through I may not have had to, if there would have been better understanding and support.
But even though you have a worker, she can’t do it all for you … and I hope that by sharing a little of my journey I can inspire you on how, and why it’s important to be an advocate.
There are two ways I’ve been an advocate. I’ve advocated for services for my daughter and I’ve advocated for the broader FASD community. I’ll share a little of the first, but times have changed, and you may not need to advocate for the same things I did, so mostly I will focus on the second.
First, I want to say how very proud of my daughter I am. We have had our struggles, still do, but she has become, and is still evolving, into an amazing spirit. Sure, I’ve made mistakes, and I wish I could go back and do things differently, but I did the best with what I knew and had at the time. I’m still learning. But I hope tonight sharing my story you will learn a little more and be inspired to do more.
In order to become an advocate you first need to do a few things.
1. Throw out everything you think about parenting.
These kids are not typical. And you cannot parent typically. Period. The sooner you realize that, the better. I was lucky in some ways, because I did not have any other children to compare the experience to, but I did have my values and understanding from my own upbringing about what I thought parenting should be.
Take a breath, acknowledge that grief, and all the emotions it brings, but then move forward. The what-ifs, or if-onlys have no place in parenting these children.
3. Focus on the child you have.
Don’t take anything they say or do personal. This is a brain based disability. Hard to do, but so important. Don’t let your values get in the way. Accommodate their disability but don’t focus on the negative – find and play on their strengths.
4. If you’ve met one person with FASD, you’ve met one person with FASD.
As much as they are the same, they are all unique and individual. Learn everything you can. Read books, watch videos, go to workshops. There are so many offered on-line now. There are free ones and there are paid ones. Sometimes you need a combination of both. Find the facts. Tell stories to help you get services, but base those stories on facts.
5. You are the expert on your child.
Don’t ever let anyone tell you different. I had a principal tell me, my daughter just needed to sit in the hall to think about what she has done, when she was disruptive. The next year I transferred her out of the school as I knew that principal was not ready to provide appropriate accommodations and support.
6. Remove toxic people from your life.
Friends, family or professionals.
In my own journey, I will never forget my sister in law got upset once when my daughter first got an email address and she sent her an email and signed it with “get back to me as soon as you can.” My sister in law did not take too kindly to being told what to do. I’m like, seriously? This is an excited little girl. My brother was upset that my mom moved in with me to help me, taking her further away from his boys. But he never came to visit. And he never understood my daughter. Never invited her to visit. A friend, who was adopted, even questioned my parenting style. Thought I was too restrictive. Didn’t give her enough freedom. And I can’t tell you how many professionals we stopped going to when they wanted to try “talk therapy”. Or said, “all kids do that”.
7. Find a tribe.
A support group. Reach out and accept help. Use these groups to find support and share success.
8. Never go to meetings alone.
Not only for moral support, but it also makes the others more accountable and your support person can take notes. Don’t go in with guns ablaze… pick a few examples of what you want to address and offer suggestions. If you don’t get any help, go up the chain of command. Put and get everything in writing whenever possible.
9. Be creative. Think outside the box.
In parenting but also in life and finding services. There may not be services specific for FASD but what else is out there that could work for FASD?
10. Get respite. You need it.
This is an intense and emotional journey. But find time to recharge.
I never gave up. I wanted to. But if I hit a dead end, I went down another road. Even if it was only a dirt path I went down to see where it would lead me.
I left full time employment to focus on my daughter.
We were involved with many agencies and services over the years and even participated in studies and therapy training sessions with Dan Hughes and Sheila Burns. Use every opportunity to learn and find help.
I never let anyone tell me they knew better – even one professional that I greatly admired and helped me immensely during a very difficult time – when she told me I should make my daughter go to school – I said, no I will not make her go to a place where she is unsupported and unaccommodated. I pulled her out of school four different times until they made adjustments.
We’ve had some really great supports over the years, and some really awful. But I focussed on what was good for her and for our family. I’ve made mistakes. I see really creative things families are doing now that I would have loved to have tried. Like I say, every situation is different, but don’t let anyone ever make you feel like a bad parent. Be open to trying things but don’t feel like you have to do anything you don’t want to do – do what you feel is best.
I’m still learning. I now have to learn how to support an adult with FASD. This is new territory for me, and I’m still facing the same struggles I did when she was younger – non existent services. I am having to do this while working full time. I had to go back to work once she turned 18, so now my time is restricted and I’m not going to lie, it is difficult to once again be all things.
But I continue my advocacy efforts on a larger scale because if we don’t all speak up about FASD, we are not going to get any supports or those supports are going to be years and years and years away.
So how can you be an Advocate for FASD:
1. First and foremost:
When talking about FASD:
Never, ever, blame and shame birth moms. We don’t really know their stories – even if we think we do. Just like no one knows your story. We need to address the issues that lead to children being born with FASD. Including 50% of pregnancies are unplanned. Some women have addiction issues, are involved in domestic violence – this summer I was at a workshop where a birth mom, who herself has FASD, said her husband would kick her in the stomach if she didn’t drink with him, and unfortunately, some doctors still say one or two drinks are okay. But blame and shame creates stigma which does nothing to help women or our cause.
2. Look for opportunities to share your story.
You don’t need to inundate your friends or relatives or FB feed with FASD… but a few well placed conversations or posts here and there will bring attention and awareness. I find that most posts I make about FASD do not get that many reactions, but I find opportunities to get the message out, like when I drove across Canada a couple years ago – I tied it into an awareness campaign.
I did however get quite a few reactions to my post about making our presentation to the FASD Caregiver Group.
3. Make comments on news stories or posts.
Recently an article appeared on FB about a woman who said she planned on drinking during her pregnancy – the backlash was swift – and while it isn’t necessary to get all riled up, and feel so overwhelmed that nothing we do or say will make a difference, enough people commented on that the post that it was taken down.
4. Do you know about Sandy’s Law?
The requirement for any establishment (in the province of Ontario, Canada) selling alcohol to display signs warning of the risks of drinking when pregnant. If you are in a place and see one isn’t posted, approach the manager and ask if they are aware. Don’t go posting your own signs or being confrontational. If the manager doesn’t seem to care, you can report them to the AGCO.
5. Join or support initiatives like Red Shoes Rock.
This grassroots group is an opportunity to share our collective voices to spread awareness. It can be as simple as sharing a FB profile frame, wearing red shoes, bracelets or t-shirts to organizing or participating in FASD events.
This year I wanted to organize something locally but I had a lot going on in my personal life. So we met up with some other advocates in Ottawa and joined their red shoe walk
6. Ask your local council to declare September 9 as FASDay.
Make a presentation. Tie your presentation to how many people in your community have FASD and what that means for services.
One thing I didn’t do, but wanted to, was ask my local library to carry books on FASD and make a display. You can also offer to speak to your school council or school assemblies or suggest a speaker if you are not comfortable.
7. Look for opportunities to piggy back other events.
A friend of mine booked a table at a community health event. She approached her local union who gave a donation so she could create some flyers. I organized a Mocktail campaign at a place I worked last year. This year I heard about a woman who organizes a float in her town’s Santa Clause parade.
8. Write letters to the Editor, your MPP and MP.
If you need help getting a specific support, call them or ask for a in person meeting. Focus on how things can be better, what you need for things to get better. Don’t focus on the diagnosis so much and everything wrong – but what is needed to bring about change. Make concrete suggestions.
If your local politicians are not supportive, during the next election campaign ask a question at an all candidates meeting. My daughter and I did this during the last Provincial election. It was a forum to get some facts out, put a face to FASD and ask candidates what they will do. Most don’t know what it is, but asking the question gets the awareness out there. We went in wearing our FASD shirts, red shoes, holding signs and brought some awareness that FASD is in our community.
When we found out Prime Minister Justin Trudeau was going to be in the area, my daughter wrote him a note, and managed to get around his security detail to present it to him.
Anything to remind those in charge that we are out here.
9. A ripple creates a wave.
Sometimes I have more time than other times. In 2017, I created 99 Days to FASDay for the Red Shoes Rock campaign – a series of 99 infographics about FASD. It consumed way more of my time than I thought it would, but it provided information in snippets that people could easily understand and share.
In 2018 it was translated into six different languages and shared in those countries!
They say imitation is the sincerest form of flattery – and I’ve seen organizations doing similar series now.
I know that while you are in the trenches of parenting, it may seem like it is impossible to do anything but parent. Don’t think you have to do a lot to make a difference. Do what you can. Do what you are comfortable doing.
I heard that if it takes 1 out of 100 parents of a child with autism to show up, it takes 1 in 200 for FASD. This is very involved parenting but the autism group didn’t get where they are by sitting back and expecting the government and schools and organizations and professionals to just start providing service and support. They mobilized.
And while some say we need a really high profile person to get FASD out there, I don’t believe that. We need to start in our families and neighbourhoods and circles and move out from there. A wave doesn’t start off powerful. It builds and gathers strength. A ripple in the water creates movement. But movement is what we need.
In 1999, Bonnie Buxton a mom of a daughter with FASD thought what if on one day we paused and reflected on nine months of alcohol free pregnancy. That was the start of FASDay.
Five years ago, Jodee Kulp (a mom to a daughter with FASD, both authors and advocates) noticed the red shoes R.J. Formanek (an adult with FASD) was wearing and asked him about them. Red Shoes Rock was born to tie into FASDay. I joined the movement the first year just sharing information on my FB page, the next year I used my journey across Canada to reach a larger audience and the next year created the 99 Days to FASDay which went around the world this year.
So each small step creates a ripple effect.
FASD is the most common developmental disability, but the least understood, least supported, and grossly underfunded. We are competing with the alcohol industry which provides great profits in taxes to governments but we can’t let that deter us.
We currently have a government that isn’t supportive of vulnerable populations. But remember the old shampoo ad …. you tell two friends, I’ll tell two friends, they tell two friends and so on and so on…..
So I challenge each of you to think about one thing you can do to not only advocate for your child, but for the larger community.
Because we need to start letting the politicians know we are out here. If you use the 4% prevalence rate used by CanFASD that means there are over 500,000 with FASD in Ontario. Add to that, the parents, caregivers and professionals who support them and we are a force that should be able to make change. But we have to come out of the trenches and do what we can to move FASD forward.