This post is currently being updated and revised. (August 2021)
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.
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.
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.
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.
Friends, family or professionals.
A support group. Reach out and accept help. Use these groups to find support and share success.
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.
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.
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.
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
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.
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.
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.