International FASD Awareness Day
September 9th is International FASD Awareness Day. Seeing how many families experience heartbreaking struggles on a daily basis, we wanted to share this incredibly powerful story from a parent of a child with FASD. Wonderland is proud to be making a difference for families living this painful reality and spreading the word about this 100% preventable disability.
“Today is International FASD Awareness Day.
Don’t beat yourself up if you didn’t know that. I’ve been living it every day for over 9 years and really just found out a few years ago that it was even a thing.
My daughter is deeply affected by prenatal exposure to alcohol. It doesn’t matter if I gave birth to her or not. Many people want reassurance that I didn’t cause this before they offer support or sympathy. By now, how she got here is not important. How she moves forward is all we think about.
She is falling apart. Mentally, academically, socially. Her peers have left her behind. Her only friend is 6. She will be 10 next month. We are trying school again after several years of homeschooling. But, despite my relentless advocating, our school district placed her in a grade 5/6 class when she is still learning grade 2 skills. She has hated every second of it and she’s only managed 3 days. I am pretty sure I am going to have to give up my job if she stays in school. They’ve asked me to come support her every day as they don’t have enough people.
She has nine (NINE!!!) formally diagnosed conditions. Her chances of being a relatively healthy, independent adult, living above the poverty line in Canada, are slim. She needs an external brain to help her almost minute to minute. Her chances of dropping out of school, being homeless, entering the foster system, breaking the law, becoming a street worker or going to prison? Much higher. Her chances of struggling with substance use? I can’t even say it out loud… Nothing stops a school meeting like telling them your goal for your daughter is not to become a drug addict. But that’s the truth we live.
And me? The Mom? I am falling apart too. I have raised all the flags, fought all the fights, written all the letters, made all the calls, beat down all the doors, and I still think we are going to fail. I spend nearly all her waking time with her. She hits, she swears, she lies, she steals, she runs away.
And yet? I love her so fiercely it takes my breath away. My fears about her future make my chest ache and my throat close. She works so hard, tries over and over, loves fiercely (if in waves) and is crushed by the weight of her burden. She feels so badly that she acts this way. Then does it again and feels worse…
And the burden is hers to bear. We get so little help. No annual funding for early interventions, no sports teams sponsoring camps, no special needs social worker, no special visits with Santa in a quieter environment. No cute tattoo symbol, no celebrity shout-outs, no nothing. She is going to slip through the cracks.
The latest estimates indicate that 5% of Canadian children are affected by FASD, double that of ASD. Our school district doesn’t have a single dollar pegged to FASD training and coordination. Our City doesn’t include FASD kids in their special programming (in fact, they often partner with the Canucks Autism Network and completely exclude FASD kids).
How can you help? Share this post. Spread the word. Ask the organizations you are affiliated with how they are including youth with FASD in their plans and programs. And if you see a kid that appears too stubborn, too angry, too aloof or too wound up to be very nice, just show them a little grace. They could be just like my daughter… drowning in alcohol she never drank.”
– Bonnie McBride