If you’ve perused the website or listened to the podcast, you’re probably aware that the Fringy Bit is facilitated by my husband and I. We’ve got 3 fabulous kids, all of whom are a bit fringy. As we embark on this project, I feel the need to be very clear about a few things.
First, lets keep our community compassionate. We intend to share REAL stories throughout this project, and REAL stories don’t always have happy, sweet endings. Things aren’t always tied up in pretty little “I wouldn’t change my child for the life of me” kinds of bows. But, families with these messy, transparent lives are no less loving. So, there really isn’t a need to question whether or not any of us love our children. And there isn’t a need to give unsolicited advice about ways we can all more fully accept the beauty in each child. Of course we see our children as beautiful, most of the time. But reality also means that there are times when we would change them to make it just a little bit easier. And that’s okay. It’s human. It doesn’t mean we love our children any less. But, we all will feel more supported when we can be fully transparent with ALL parts of our lives. So, please, lets respond with compassion and keep the criticism and shaming somewhere else. Compassion. Always Compassion.
Second, there’s a very real and very personal reason that I want there to be more space for the nitty, gritty pain and tumult of being families on the fringes. During the first year, and any of the difficult times, I often had to stop reading and stop being supported by many of the special needs type of online and in person groups. The Pollyanna endings made me want to hurl and made me feel like I was the only mother in the world that actually struggled to raise my fringy kids. Even stories that started out seeming like they’d be real would always wrap up with some sort of positive slant, and there are days when I don’t feel that way. There are days when that positive slant actually ends up minimizing my own experiences and feelings. And even though my head knows that I’m not the only one, all the positive twists actually made my heart feel like I’m the only mother that’s ever wished for a different child or different circumstances or something different because I just didn’t feel like I could move forward one more step. Just once I wanted to read or hear that there are days that suck. End of story.
Third, I also was desperate to read stories that were really and truly focused on the parent’s perspective, or the family’s perspective. Yes, of course, I want my kids to be happy and I want to help them on their journey as best I can. But, I’m human and have my own needs, too. And every parenting story I would read would be so focused on simply helping the child. Part of me felt guilty that there are times when I can’t really care about how my child is doing because I am empty and need my own refueling. I wanted to find strategies to care for me in the midst of the chaos, and not because that’s what would be best for my child, but because that’s what would be best for me.
In truth, we need to be prioritizing our own self-care first. Next comes the health and wellness of our primary relationship (the adult couple, if one is present in the family). And finally, the children’s needs must be attended to third. Does this mean that I don’t get up in the middle of the night if my child throws up because I need sleep and I need to take care of myself first? No, of course not. It means that I have to be well and balanced before I can be in a well and balanced relationship. And my primary relationship needs to be well and balanced before we can truly provide for our children’s needs. We need to prioritize our own care, and the stats back me up on this.
Somewhere between 80-90% of all marriages with a special needs child ends in divorce. This is significantly higher than the national average.
40-70% of family caregivers show clinically significant symptoms of depression.
Mothers of children with autism experience more stress, depression, and poorer health than is typical of mothers in general.
The level of chronic stress in moms of children with autism has been equated to the level of stress experienced by combat soldiers. According to Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who studied stress levels and parenting children with autism, “On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother” (seen on disabilityscoop.com)
We need to change this. The Fringy Bit wants to help change this. We aim to be more parent and family focused than child focused. Yes, we will provide information about the differences in gifted and higher needs kids, but not just under the auspice that you want to learn everything to help your child. No, we want to be here to help you. To see you. So much of the world revolves around the child with higher needs that siblings and parents get relegated to being “the family member of THAT kid.” Your experience deserves to be seen, heard, and supported, too. We want to provide that information and support so that life can be made just a little bit easier for your whole family. And, even if it doesn’t get a little easier, at least you’ll know that you aren’t alone.