A few months ago, we agreed to participate in a documentary/testimonial video for the FASCETS Neurobehavioral model. Well, the filming crew will be coming our way on Sunday and I've been beating myself over the head while asking, "What were you thinking??!!" While it is true that FASCETS and the Neurobehavioral model has completely transformed our lives, perhaps this week was not the best time to have the film crew here to see how our life has turned up all roses with our newfound methods.
The past few weeks have been riddled with anxiety for our Tornado as they have been leading up to this huge week full of transition and change. Tiva started Kindergarten. For five days a week, seven hours a day, she goes to her new school and tries to focus amidst the 23 other students in her busy classroom. This huge change started on Monday and to say our little Tornado has been a tad dysregulated leading up to this week, would be a vast understatement. We also added a new higher level ballet class this week and she has not been going to her regular daycare. Plus, I put extra pressure on myself too, by having a few evening meetings and promising to post a fast fact about FASD every day this month in recognition of FASD Awareness Month. I, however failed with that as I've missed the last 2 days. In all honesty though, our Tornado has handled it all remarkably well. I think we owe this to the accommodations we have made as a result of our education in the FASCETS Neurobehavioral model. Attempting this week before we knew what we have learned, would have proved disastrous and would be filled with extreme hyperactivity, tantrums and rages. Instead, there have been many moments of peace and success and extra time in her sensory play room. With so many things threatening to unravel her world in utter chaos, she has been resilient, mostly calm and overall settled and that feels good. But, here's the thing... she hasn't "gotten better". She still has significant unchanging brain damage, and though her language skills have gotten better which has helped, (but sometimes means when she gets dysregulated, she starts spewing out "potty words" in complete sentences, like "You're a poop head!"), her brain is still the same. She still has trouble controlling her emotions and impulses. She still needs us to recognize when she is getting overwhelmed and step in to intervene. She needs us to roll her out like dough when her body is craving deep pressure, or allow her to spin and crash safely when she needs proprioceptive input. She needs us to recognize when her blood sugar is crashing and get her a snack, because she still doesn't recognize when she's hungry. She needs us to redirect her, to keep her safe from her dangerous impulses. She needs us to be "on" all the time. It can be exhausting. It IS exhausting. Especially when there are extra transitions or stimuli which can be triggers. We have learned to manage and accommodate for her though, and because of that, she is "better." So here we are, laying in bed and making a plan for a quick major house cleaning tomorrow before the film crew arrives. Tiva takes up a lot of time and energy and as a result, the house work often gets neglected. I guess this makes us "binge cleaners".
Tiva's "Brubba", Austin stopped by tonight and sensing my stress, he said, "Mom, they aren't filming the whole house. It's not like a reality tv show. They don't do those on good people." Ha! Thanks Austin, (I think.)
Living with a child affected by Fetal Alcohol Spectrum Disorder can a tough balancing act. She usually requires one on one in the evenings, so unfortunately after one of us fixes dinner and feeds the farm, there really isn't much time for anything else. Tonight we were blessed by our daycare provider. She took Tiva for a sleepover at her house. She will keep her for a good portion of the day tomorrow, so Lance and I can clean a bit.
As caregivers and parents, we need support too. Fortunately, Lance and I have built a great support team of family, friends and FASD advocates from around the globe. Our daycare provider has been amazing and because of her, we get respite in the form of one date night every single week. It's a blessing and necessity when parenting kids with complex needs. Whoops... mid-post, I fell asleep with my phone in my hand. Did I mention we've been exhausted?
I'm going to wrap this up and get busy, but I want to leave you with this. This is real life. Tomorrow for the filming, my house will be real. It will be somewhere between "there seems to have been a struggle", to "their 'Tornado' must not be too difficult." I am trying to be okay with this, because no matter how hard I've tried to not care, I still care what people think. I want my house to look like it came out of a magazine. It won't. I want my child to look like she is fixed. She isn't. I want people to think our life isn't chaotic at times and that we have it all together. It really is and we really don't. I want my face to look like I don't have dark circles and bags under my eyes. Hopefully with the help of makeup, it will. The point is, we do still struggle at times. It's life and its real. I wish everything could look as beautiful on the outside as my fingernails do, but they are fake, and life is real. Life gets messy and I guess that's okay.
Our faith and our love keep us afloat. And forgiveness. We fail often, but we also forgive quickly and are forgiven time and time again. I've gotta get busy, so we will chat again soon. Keep it real, my friends, (well, mostly).