In the 32nd of our series, our mom of three kids--Emily, Grant, and Lynn--finally has some hope after she connects with an FASD key worker.
I can’t believe it - she actually understands us. Why did I wait so long to contact her?
Over the past few years, Lynn’s pediatrician and several other professionals have suggested I contact the FASD key worker, but I never bothered. I thought it would be just another one of those services that were supposed to be for families with FASD kids, but in reality, the staff have no idea what it’s like to live with a child with FASD. The pediatrician would suggest it, and I’d say, “Oh yeah, I’ll contact her.” All the while thinking, “If I have to tell my story to one more person who looks at me as if I’m an idiot, I’m going to lose it right then and there!”
Many of the “professionals” who have been recommended to us are not very helpful. How many times do I have to sit there talking about my kid’s history, the food issues, and list off all the things we’ve tried that haven’t worked, only to feel like I’m the worst parent in the world, and there must be something wrong with me, because I can’t handle this wonderful young girl. Then the “professional” comes up with ideas like a sticker reward chart, or constant positive reinforcement for every single thing she does all day, everyday.
For cryin’ out loud, this kid has FASD, she doesn’t care about rewards! Goal setting doesn’t work with her. There is absolutely nothing that will motivate her to change her behavior. She can’t handle too much positive reinforcement because for the first three years of her life she was neglected and, after almost eight years in our home, she still doesn’t know what to do with happy feelings.
Anyway, I finally called the FASD key worker because I didn’t know what else to do, and nothing is changing. Nothing is getting better, or easier.
Angie showed up at our house and as we sat down to talk, I started to feel hopeful that maybe, just maybe, this time will be better.
Angie sat there listening to my husband and I talk about how challenging it is for us. We talked about the hyper-vigilance needed, day in and day out, to keep our kid safe. We talked about how she gives everyone the right answers, and everyone else thinks she understands, but she really doesn’t. We talked about how she doesn’t learn from her mistakes, or how she can’t recall something she did yesterday. Angie kept nodding her head and asked questions that didn’t imply that we’re idiots. And instead of passing judgement on us, she empathized with us. She kept saying how much we’ve done for our daughter, and she talked about all the things we've tried, and how we haven’t given up, and gave us credit for how tough it is, and asked us what she could do to help us. No one else ever asked us that.
Of course, we didn’t really know what we needed or wanted, so then we felt kind of stupid that we hadn’t actually thought about it. But she had some great suggestions - some we had already tried, and some we talked about possibly trying, such as charts with photos of things Lynn’s supposed to do for her morning routine. And Angie even laughed when we told the story of Lynn ripping up the last charts we tried to use and clogging the toilet with them. Angie also told us about a support group that meets regularly during the day, that is facilitated by another FASD key worker, and it’s only for parents and caregivers of FASD kids. Then we started discussing school issues. Angie is coming to the IEP meeting with us next week! She will actually be there speaking up for us and what our daughter needs.
Lynn will be transitioning to middle school next year, and we have huge concerns about how she will manage in the “less than structured” environment. Angie is suggesting that we start doing the transitioning now, and she’s set up an IEP meeting with the middle school. I didn’t know we could do that already. I thought we had to wait until next September.
I was overwhelmed by the end of our meeting. Angie gets it - she really gets it. I actually feel hopeful that we’re not in this alone.