That is the dilemma in my head lately after reading a post from someone about why we should not share our children’s struggles in this age of social media without their permission. I understand the premise, however can a young child, especially one with a developmental disability, offer consent? Another post I read awhile back from someone else said they’d never share anything they didn’t want their child to read – however isn’t that putting our values onto our children? We may be open to sharing much more about ourselves than our children.
Without sharing personal stories however, will we see change? Will those in positions of power to make legislative changes truly understand if we don’t share our struggles? Will teachers, neighbours, family members or other people who work or interact with our children truly understand if we do not disclose the real and raw struggles we face each and every day?
One answer is to only share those stories when there are privacy laws and disclosures which must be signed. Or in personal one to one conversations that are not recorded but leave a lasting impression in someone’s mind and heart. However, is it possible to gain large-scale attention and change on matters without telling personal stories?
I don’t know the answer and it’s something I’ve been struggling with since reading that post. Have I shared too much about my daughter’s life? About our lives? I do a review of my blog posts occasionally and I have deleted some that probably were too personal or edited a few to remove details that in hindsight I question whether I should have shared. But now I’m wondering if I should stop sharing and change the focus to “just the facts.”
Facts, science, evidence. These are all things that lead to convictions and decisions and change. But even facts, science and evidence can contain mistakes. And we have facts, science and evidence for fetal alcohol spectrum disorder. We’ve known for twenty years or more that no amount of alcohol is considered safe during pregnancy.
Yet health care practitioners continue to provide false and misleading information. Society continues to shame and blame women who have had alcohol during a pregnancy – despite the fact we know the majority of pregnancies are unplanned and many women stop drinking alcohol once they know they are pregnant. For others, it’s an addiction issue that needs to be addressed. Governments continue to ignore funding FASD appropriately even though it has the highest prevelence of any developmental disability and it is the leading cause of developmental disabilities. The answers are not simple. They are as complex as the individuals with FASD.
If we have facts, science and evidence, why are sexually active male and female couples of child bearing age, who drink alcohol, still not taking precautions? Why are some doctors not taking the safest course and letting their patients know about the risks of drinking alcohol during pregnancy? Why are political leaders supporting the alcohol industry and turning their backs on the damage it causes? Why are our political leaders refusing to create alcohol strategies, including prevention and awareness campaigns? Why is access to diagnostic centres not provided? Why are there not creative funding options provided to support addiction recovery, to support individuals with FASD throughout their lifespan, to fund programs that will prevent secondary disabilities? Yes, all these programs cost money. But when not addressed, there are more reactive costs for health care, justice and education. Families are finding themselves in crisis continually because facts, science and evidence are being ignored.
When facts, science and evidence is not enough, that is when the stories are important. When people with FASD speak out about their experience and what they need, that is when people will start to take notice. But is that fair to ask people to speak out about personal struggles? I started this blog to share our life in the hope that it would resonate with others – to know that they were not alone – to provide information to help educate anyone who read this blog. But now I wonder if I’ve shared too much? And I wonder if I will scrutinize future posts to make sure they do not reveal anything personal. Will that water down the struggle? Will it even make a difference because my voice is only one voice of millions and my blog doesn’t reach thousands – so is it even making a difference in the world of FASD?
I’m sure I will continue to share in some form or another. In fact my next post will be sharing about my daughter who spoke up at a recent local all candidates meeting for our upcoming provincial election. She provided her permission to share her picture so I will do that. However, I do believe it is the glimpses into our lives that touch people the most.
So let me share something that happened yesterday – without revealing the specific details of what led to it, there is a real struggle right now in teaching my daughter about money. It has been a struggle for eleven years. It is a struggle because of her disability.
You will remember in one of my last posts I reported we were trying her with her own bank account – to give her practice in managing her money. Well it didn’t work and she has spent more than she had. Lesson learned she isn’t ready. But what breaks my heart more than the continuing challenge with money (and what it could lead to if not addressed or accommodated appropriately), is what she said when she realized she had spent more that she had.
She turned to me, with her voice breaking, and said,
“Now I can’t go out and buy more socks. I need more socks, and now I can’t buy any.”
I had to turn away to wipe the tears from my eyes.
This is a perfect example of life with my daughter. And what life with FASD is like. There are deeper meanings behind this situation, but what is more emotional for me is the pure innocence behind her statement versus the reality of the struggle her disability presents on a daily basis when even if it is acknowledged, supports aren’t available. And it is those stories that support the facts, science and evidence that we need to share in order to put a human face on Fetal Alcohol Spectrum Disorder.
With the annual Red Shoes Rock Campaign about to commence for the fifth year, the theme this year is “Start the Conversation.” So what are your thoughts about how much or how little, if at all, we should share.