Have you ever just sat and held your little one with FASD after a major episode and just sobbed? Have you ever just laid by their bedside after it was all said and done and cried out to God to help you do this better? Well I just did…again.
I have just spent the last 30 minutes crying my eyes out because I continue to see the challenges of this disability. I mean, I know it, I’ve seen it in others, but I am in the trenches more and more every day. It’s like my baby has snapped and things are getting worse. Here I am learning more about brain-based disability so that I can help others understand it, and advocate for children with this disability. Here I am being the “teacher” on what to do when this happens, and yet in the moment, when this is happening in my own real life, I get triggered too.
Why? Why can’t I just recognize it in the moment of daily life and just roll with it? Why am I finding myself battling behaviors when my baby becomes so fixated on something and can’t let it go? Why is it always something so irrational or the moment my baby needs me to be there for her, the ugliness in ME comes out?
A few moments ago, as we were getting ready for bed, my little one was in her fourth meltdown of the day. Fourth. Already tired from the previous three meltdowns, I didn’t have much left in me to accommodate what I thought was her “irrational” behavior. I just wanted her in her pajamas and ready for bed. But she couldn’t.
After a period of back and forth “yes and no” about it, she’s screaming and pulling off her pajamas. She didn’t want to wear them. I decided to offer to hold her. I was just trying to connect with her in some loving way as she continued to cry out her needs. I tried to see what the problem was. I tired to understand, but I couldn’t. I was focusing on me and what I wanted. I wanted her in her pajamas because it was time for bed.
As I sat there holding her, I looked into her eyes and I saw something that broke me. I can’t explain it, but I saw a look in her eyes like she seemed to be trying to figure it out too. And she couldn’t. She couldn’t stop the fight inside her. It was at that moment that I realized how much this has taken over her. Then I realized…I’m a jerk. I blew it. Now it was time to try and mend the brokenness she felt, if that was possible.
I let her lay there, in my arms, until SHE was ready. I put on some children worship songs to help quiet the room. As I held her and listened to her cry out, I tried to validate how she felt. I tried to understand. I calmly talked with her, apologized to her, loved on her and told her how precious she is and how much I love her. After an hour or so, she finally calmed and was ready to only put on her shirt part of her pajamas. Although I wanted her to have all her pajamas on, at this moment, I had to resist what I wanted. I put on her shirt and let her lay on her bed, covered and now calm.
Then I knelt by her bed and cried. I cried and cried because I felt horrible. I hate what this does to my baby. I hate how I don’t always see it coming and I react in a traditional parental role instead of being prepared to help her navigate through it. When things like this happen, I feel like the most horrible parent in the world. It rips me apart to my core when I don’t respond the way I feel like I should. And I cried out to God to help me in all of this.
For all of you moms and dads out there trying to navigate this non-understood behavioral disability, you are not alone. There are so many of us in the trenches with you. I feel your heart. I feel your pain, and I feel your frustration. This is not easy. It’s a tough road to travel. One day at a time, right? I will continue to try to learn and adjust what I thought is the “right” way to parent my child, to what is the best accommodation for HER at that moment.
She talks you through how to be proactive for the holiday season and avoid overwhelm for your kids. Learn more here!