I read on Facebook recently, that FASD awareness only exists because adoptive moms are willing to tell their kids stories. That because WE weren’t the ones with the alcohol problem, we are happy to share about it openly.
It really made me think.
Would I be so willing to share if I were the one to drink throughout my pregnancy? Is it easier to go before my child and advocate publicly, because I didn’t “cause” this? I really wanted to think there was no truth in that.
However, one day I was talking to a healthcare professional and asked if I should give my sons diagnosis when speaking to his providers. She looked at me for a few seconds and said, “Absolutely. It’s not fair for him if you don’t. He deserves for you to advocate for him.”
Last night, one of my daughters had a volleyball party in a small room at Larry’s Pizza. It was loud. It was overwhelming. And it didn’t take long for Henry to become a level 10. Unfortunately, when he throws a fit, he decides to bite himself. Hard. There’s nothing I can do to stop it, so we just have to wait it out and pull his arms away (enter throwing ranch, pizza, paci, etc).
However, last night was the first time this behavior embarrassed me. Typically, we are only with close friends and honestly, my kids have to be off the chain crazy to embarrass me in front of them. Our “fake front” was shattered a long time ago, and there is no preconceived notion of “normal” any longer. But, the people last night aren’t around me often. I felt like I still had a shot with them. Until the biting began. That will really throw normal out the window every time. People just don’t know what to do when a child bites themself. And who can blame them….
I actually felt myself tearing up and then realized how ridiculous I was acting. If my approval of others is tied to a 22 month old, I am in trouble. I might as well stay home, homeschool, drop out of church, only do delivery groceries, stitch fix for the entire family, etc.
That made me think about what the Facebook post said. That we are only raising awareness because we aren’t the cause. I’ve decided that person was just grossly uneducated. No, of course last night I didn’t stand on the table yelling, “nothing to see here….he has brain damage adversely caused by drinking a lot while pregnant.”
What I did do, was manage the situation and leave as soon as possible. The same as any parent would do with a hot tempered 2 year old.
But, that has nothing to do with raising awareness. You know why? Because there are times women just need to be told what could happen. Because the stigma of coming forward and saying, “I can’t stop drinking and just got pregnant”…..needs to stop. Because when children are born with FASD, it does no good then to blame the moms. It’s too late. But, wouldn’t it be worth it to have supports in place?
We all have a story. Some stories are more colorful and detailed than others, but we still have one. And they are indeed our own personal story to tell. It’s why very few people know details of Annalise and Grace’s birth family and adoption. Because it’s their story to tell. However, Annalise has craniosynostosis and everyone involved in her care at school knows it. Why? Because if she falls off the monkey bars, it’s a bigger deal than if Addison or Grace falls.
Same with Henry. Few people know the details surrounding his adoption, but people who care for him need to know he has FAS. Why? Shouldn’t that be private? Maybe so. Maybe that’s what you would do as his mother. But for me…..not giving him the supports he needs, would be like expecting a child in a wheelchair to climb the stairs.
At the end of the day, it all comes back to this. There is no perfect answer. We live in an imperfect world. Just remember, advocating for your children is quite different than broadcasting their story for all to hear. Or, using their private moments for your personal gain. But, don’t compare a medical diagnosis to a private story. Just because it makes you uncomfortable.