This blog post was originally published on the Equinoz Family Consulting blog page. You can read the original article here.
Please let me say right off the bat that I have great appreciation and respect for all Dads – especially Dads that are reading this! If you’re a Dad and the lead in your household where ASD is concerned, consider this written expressly for you. In my experience, Moms are generally at the helm where ASD matters are concerned. For this reason, my writing is directed to Moms. I encourage all Dads to be as involved as possible. I work with some unbelievable Dads (and you know who you are). Their involvement is game-changing, and their willingness to dig in is nothing short of stellar. Autism Dads rock.
As a struggling Mom, I stared down autism years ago. Funny though, I remember it like it was yesterday. I refer to that period as the “dark days.” When my son was diagnosed, my daughter was days away from her first birthday. Maybe you can relate to how I felt. Misunderstood. Alone. Overwhelmed. Sad. Guilty. Angry. Alone. Exasperated. Terrified. Frustrated. Did I mention guilty?
I needed answers. So, I got busy. I sought out resources from local agencies, started a support group, took courses, attended lectures, went to trade shows and read books, spent hours on the phone with other Moms trying to help – and be helped. “I am resourceful,” I said to myself. “I can fix this… of course I can.” So much for positive affirmations, at that time, anyhow. Inside, I felt so powerless, so incompetent. And so it went.
A year later, nothing had changed, and I still couldn’t connect with my son. Sure, if I let him control everything, he was happy; but to me, that wasn’t what I signed up for. I wanted a relationship with him. I didn’t know how to manage his frustration, or stop his tears – let alone mine. As for me, I was at the bottom of the heap. That’s where Moms are supposed to be, right? Wrong. I came dangerously close to breaking down. I suffered from terrible anxiety. I doubted myself. Where was that “mother’s intuition” I was supposed to use? Parenting in the way I thought I was supposed to, just didn’t work. Nothing was how it was supposed to be. Nothing. Can you relate to any of this?
Then one day, I took my son to a wonderful alternative practitioner, seeking help. She was optimistic. “But first,” she said, “I have to treat you.” “You’ve got to be kidding me,” I replied. This is about my child, isn’t it? As I gazed at her, a deer in the headlights, she explained that my son and I had a connection that was beyond physical. If I was incapacitated and unwell mentally, she said, it would have a negative impact on him. On top of that, I couldn’t care for either of my children if I was hanging on by a thread. I agreed to proceed with her help, but begrudgingly. Surely, any attention directed toward me was ridiculously selfish, downright wrong, and a poor use of our resources. I had “been told” if you’ll pardon the expression. I began to see that I was indeed the lynchpin of my family. If I spun out, everything would unravel. That was a turning point for me.
I now appreciate why she insisted on tending to me first. As ASD Moms, we have tremendous responsibility on our shoulders. We autism Moms can’t give what we don’t have! We need help, just like our kids do. Furthermore, when we get support, and when we feel more competent as parents and individuals, our children can thrive.
Once I was a little stronger, I took what felt like a gargantuan leap of faith. I realized that as a Mom, I had to take back my power. I had to learn how to manage the tough stuff myself, and not wait for a magic pill to “fix” my child. He’d be in my life forever. If I waited until the time was right for me to take action… well, I began to realize that there would never be a “right time.” I had to learn to parent in a way that wasn’t intuitive, ready or not. I worked with a coach (specifically an RDI Consultant). I was terrified of failing. What if I couldn’t do it? What if she thought I was a terrible Mom? The list went on. I was my own worst enemy. But I was more terrified of what might happen to me, my son and my family if I didn’t take action.
I discovered with huge relief and great pride, that with a trusted guide supporting me, I could take small, manageable steps in the right directly. Baby steps. One foot in front of the other, I slowly dug myself out. I began to feel more competent… I learned to find little pockets of time for myself. I became strong again! I learned how to sidestep meltdowns… to help him self-regulate and problem solve. I was able to connect with him in a way that had never before been possible. It wasn’t without bumps, but I couldn’t have done it without a path to follow.
Maybe I can save you some heartache. Maybe I can support you to do what I did. I’ve been guiding families along this path for 10 years now. It’s a formula that works.
- Your wellbeing matters just as much as your kids’ – maybe even more. Your mental and physical health is essential. If you don’t have have strength and stamina, the ship will go down. End of story.
- You must change the way you view autism. It is no longer a life sentence. You have the power to affect real, lasting and positive shifts – through your actions, and how you interact with your child.
- You must address your stress. I have since learned cutting-edge techniques that I use every day now (and you can learn them too).
My other lightbulb realizations: If I was mentally flailing around like a crazy-woman, how could I expect anything to improve? I had to learn how my own engine ran. I had to manage my own emotions before I could understand or do anything about my son’s!
- No matter how much “knowledge” I amassed, I still had to learn to parent my child – every day. Good days, bad days, snow days, bad hair days and holidays – he was my son, and I had to feel competent. I owed it to him to learn how to bring out his gifts, and help myself shine in the process.
- I learned that investing in support was worth it. I had to make some hard decisions. I could no longer let my fear of failure control my fate. There was simply too much at stake.
- There will never going to be a “good time” to take action. The “right time” will not show up on a silver platter.
We have to create the space for things that really matter.
The parent of a child diagnosed with Asperger’s at 5, Sue has experienced the heartache and frustration that you likely know yourself. She has worked with families affected with ASD since 2002, after founding the first ASD support group in the Kawarthas. Since that time she has spent countless hours helping families in crisis, and in need of educational support and advocacy. She has held volunteer positions at the Kawartha Pine Ridge District School Board’s ASD Team, and Special Education Advisory Committee. In 2006, Sue began training with Psychologists Dr.‘s Gutstein and Sheely at the Connection Center in Houston TX, to become a Certified Relationship Development Intervention (RDI®)Consultant. She has successfully re-certified every year since.