Something has been bothering me for the past while. As much as I have tried to forget about it… I can’t. It’s eating me up inside.
It’s that look you get from someone when they find out your child has FASD (Fetal Alcohol Spectrum Disorder). I never meant to have this happen to my child. I never meant to hurt him. I didn’t want his brain to have permanent damage. But it happened… and I can’t change it. I love him and I always will. He deserves the best I can give him and it has been a struggle with many ups and downs, but still, I am thankful for each day.
The day Lego was diagnosed, I was considering just telling everyone that he was autistic. I didn’t want to admit this mistake… this damage that I had inadvertently caused my child . But over the next couple of weeks I started considering this thought. I couldn’t lie to people and say he was autistic because he wasn’t. He has FASD and that will never change. No matter how much I will it away, it will always be there. Over this period of time while I was entertaining this idea, I hadn’t noticed a change in myself, but when I did, it was like I hit a wall.
About 2 weeks after the diagnosis, I decided that I couldn’t say he was autistic. That was just wrong to say. I thought to myself that I could either sit in a corner, cry my eyes out and shut out the world completely, or I could pick myself up, dust myself off and do something about it. So that’s what I had decided to do. I felt this had happened to me for a reason and I was meant to do something with this. I just wasn’t sure what that would be yet. Tech and I talked it over and he agreed that maybe I should do something but what that was he wasn’t sure. I told him I would figure that out. The next person I told was my mom and she cried. She was so happy that I had come to this decision because she didn’t want me to feel like I had anything to hide.
Just after I decided this, I started this blog, as a way to release some of my thoughts, feelings and to let others know anything new I am learning on this journey. Please remember that because this is so new to me, and my family, I haven’t fully figured everything out yet. I’m still learning about FASD and how it affects my son and how it affects others. It is like the autism spectrum as where no two people are exactly the same.
Just recently I went to my youngest son’s (Monkey) IPP meeting for transitioning to kindergarten. It was while in that meeting that I really encountered that look for the first time. There was myself, Monkey’s aid – Mrs. Wonderful, his Preschool teacher, the Kindergarten teacher that he would have next year – Ms. English, a speech specialist and our area’s PUF coordinator.
The look came from his preschool teacher when the PUF coordinator asked if Monkey was still going to be tested for FASD next year. Now, I am sure I told the preschool teacher that Lego was diagnosed with FASD, because it was even mentioned in the last IPP meeting for Monkey that he would be tested when he turns 6, because Lego and Monkey are very similar in a lot of ways (this is all for precautionary reasons). The Preschool teacher has been at every IPP meeting this past year so she knew it was in the IPP. That’s when the preschool teacher looked at everyone else but me and said “FAS?! Isn’t that Fetal Alcohol?” and everyone went silent and waited for me to say something. She gave me the look of horror that made me feel absolutely horrible and in my own mind all I could think was “She hates me and is disgusted because she can’t understand why I could have done something so horrible to my child, when it is preventable.” And she just kept staring at me. I finally found the words somehow to say “Yes it is.” And then I couldn’t hold back the tears anymore and I completely broke down. The other team members were very understanding to the situation and not once did I feel judged by them. I felt supported, so I took a few minutes for me to regain my composure again so I told her ” You need to understand that he has FASD, and that there were so many factors in our situation, that they really couldn’t say that it was completely due to alcohol. Between the abuse I suffered when I first became pregnant, the alcohol I consumed before I knew I was pregnant, the stress of my relationship breakdown, the medications they had to give me to keep me from having a nervous breakdown, a tooth infection and extraction when I had 6 weeks left to go in my pregnancy, and Lego being born blue with the cord wrapped around his neck all played some small role in this.” When I finished I broke down again but quickly regained my composure. The teacher looked at me and apologized and said “At least you’re was doing something to benefit your kids now and that obviously I never meant to hurt him.”I know she tried to make it better, but the damage was done. I was so hurt and angry that someone that works in the school system can judge me just like that and then try to apologize and make it better. I rally had nothing left to say after that. We wrapped up the meeting just shortly after and walked out to my vehicle where I sat for 20 minutes and cried like a baby. I felt so humiliated and I felt like I had failed my child. What gave her the right to judge me like that when she had no idea what had happened at that point in my life. I was angry. And that’s when I decided that people really needed to change their understanding of FASD.
So please, when someone tells you that their child has FASD, please don’t judge them. Don’t give them ‘That Look’ . You don’t know their story. Maybe the child’s parent is the birth parent. You have no idea the guilt they carry every day – I know I do. Maybe the child is a foster child or adopted. Foster parents and adopted parents get ‘That Look’ too. And it still hurts just as much. Ask about their story, and if they are willing to talk about it, you might learn something new. If they are not willing to talk about it, don’t push them. Just tell them that you’re there if they ever feel like talking. Parents of Kids with FASD just want their children to be accepted and understood just like everyone else.