I hosted an Ask Me Anything session... with myself... ..Only because it was planned on a spur-of-the-moment type of whim with no time to make the effort of sourcing authentic questions from my readers, like yourself. This is far from an exercise in vanity, but I can say that I'm happy to be here for a first Ask Me Anything session. As an autism parent, lifestyle enthusiast, and advocate for parental wellbeing, my aim is to answer these questions that I have selected for myself about parenting, self-care, autism advocacy, and more. And these responses are all in the flavor of myself, Cheniece--only. I'm not placing myself to be a representative figure of any group. Like I like to say: When you've met *one* autism parent, ...you've met ONE autism parent.
So, without further ado, let's get to these hopefully insightful responses of mine!
What inspired you to start The Cheniece Circular, and how has your journey as an autism parent influenced its direction?
I remember the initial period after noticing concerns and then receiving my first child's diagnosis of autism. I never felt more alone and dejected. I was in a strange, surreal space, and there was nobody else there with me in any direction that I looked. I screamed at God all of the time, especially while driving. I was grieving, and I resented how there was nowhere for me to hold space for my grief in order to process it and recover. No one could comprehend what was happening inside of me. I had no resources or pillars of strength. I started The Cheniece Circular to fill a gap for other parents who don't have anywhere else to hold space for their own roller coaster of emotional experiences. Whenever I update my publication, I see myself as being something that someone in the world needs, that they can't get from anywhere else. I try to touch on as many aspects of this lifestyle that I can in order to show up for as many people as possible, because I know where they are coming from and where they're headed.
Can you share some of the most challenging moments you've faced as an autism parent, and how did you overcome them?
I'm not ready to talk about that truthfully... But I'll say something. Watching my baby have procedures and tests performed that he doesn't understand, and seeing him fight against it but not being able to simply save him from the treatment, because he needs it. Seeing my children get so frustrated when they can't communicate their needs to me and watching them have a big emotion and wail. It hurts my actual heart. I'll have to fully answer this question at another time when I feel more put together, resilient, and brave.
How do you prioritize self-care while balancing the demands of parenting, work, and personal life?
My kids come first in all cases. But I also realize that they need my care (and their Dad's, my husband) more than any other person in their lives. So in that regard, I never neglect to consider how I can better preserve and nourish myself as a person so that I can remain the parent that I need to be for them. It's a huge fear of mine that my kids come to live under another guardianship, no matter who that person may be--no matter how great of a person they are. They're simply not me and can never replace me. So I find the motivation to take measures to ensure that this doesn't happen. I get honest with my husband Curt behind closed doors. I tell him when I'm exhausted. I ask him to let me have a break, and he provides this because he knows firsthand what I have on my shoulders. I ask for help and I receive it. I know my human limitations, and I'm not too proud to lean on my support network during the times when I need to check in with myself and take some more care of myself.
What advice would you give to other autism parents who may be struggling with feelings of isolation or overwhelm?
You're not alone, so stop making yourself alone. Get out of that space as best as you can. Community is a lifeline. Find one online or in person and immerse yourself in it. Leverage its benefits. You are your child's biggest advocate and cheerleader; that's your duty now. And you can't fail at it. Also, you can't pour from an empty cup. Who else will be able to replace you in the same capacity if you can't show up as the parent you need to be? No one; so take care of yourself. You've always got more left to do for your child(ren). And you will be surprised at what all you are able to accomplish once you see this through.
How do you navigate advocating for your child's needs within the healthcare and education systems?
The keyboard is mightier than the sword. And I get prepared for a power session of making phone calls. I have made complaints up to the pinnacle of the chain of command so efficiently that they have led to entire clinics' policies being amended to protect my children's patient rights and referrals being fast-tracked on my behalf. I get to know everyone by name and their role. I ask follow-up questions and for clarification. And I never, NEVER settle for "Well, that's just autism for you..." No, no. I insist on receiving thoughtful answers, and I will wait for you or someone else to provide me with one. And I perform research all of the time.
Can you share some of the most rewarding moments you've experienced as an autism parent?
Yes! When one of Caleb's school therapists showed me a video she had recorded on her cell phone of him pedaling on a modified tricycle at school, I beamed with pride. He was doing so great, and all by himself too. I was actually quite impressed. Also when I coached him into saying "Again" when he wanted more tickles from me... I was so proud and pleased in that moment. And I also remember Caleb actually interacting with a small group of neurotypical children in a little game of Tag in the clinic Waiting Room. He was actually playing with them intentionally by giggling and getting them to run after him cooperatively back and forth. And the other kids were engaged and enjoyed his game! I recorded a video because I wanted to recall the experience of being so full of hope and joy.
What are some common misconceptions about autism parenting, and how do you address them?
I gently inform people of the facts when they get it wrong--SOMETIMES. Other times, I leave them none-the-wiser because their ignorance isn't an attack on me or my family. But when I do interject and correct people, I give them loads of grace. I'm well aware that these are not things that are readily taught to us all. Some people assume that my children can't hear them just because they're non-verbal, and then they proceed to talk about my kids as if they're not present in the same room with us. That happens a lot actually. And people love for their first reaction to hearing the news about my children's diagnosis to be one of expressing pity for me. I know that they mean well, but it can feel like a slap in the face. I'm not sorry about being the mother of these two awesome kids; what are you sorry about? There's nothing wrong with my children being autistic. My kids are very much whole people, and I thank God that they are so, so happy.
How do you foster a sense of acceptance and inclusivity for your child within your family and community?
Education. Education is big. I make it a village goal for our whole extended family to be well-informed and active participants in my children's lives. Anytime I find a new article with applicable findings or come across a great new resource, I forward it along to the family. I keep them all in the loop about the kids' updates, reports, milestones, etc. It's such a good feeling when a relative approaches me and actively seeks to know more about my children for themselves. They remind me all of the time to alert them of any news from the doctors and therapists that I receive about my two toddlers, so that they can remain updated and current on all things. When I learn something, The Village learns it as well.
Can you share some strategies for managing meltdowns or sensory sensitivities in public settings?
My advice is to immediately give in to your child's desire, if it's reasonable for your location and time. When you're in public, you're limited with how to respond to gain control. Do whatever it takes within reason to pacify your child. Next, I would gently try redirection to a more appropriate situation in a step-by-step process, taking care to complete one action before beginning the next. Then, you'll want to tend to your child's immediate needs in a triage type fashion: Are they hungry? Are they hurt? What's the priority at the moment? Go in order of priority to tend to those needs. Ignore any onlookers, and try to avoid feeling resentment for your child while they experience a big emotion.
What resources or support networks have been most valuable to you on your autism parenting journey?
My firstborn had a wonderful, wonderful behavioral psychologist, Dr. S. All I can say is that my son is a completely different kid now thanks to his expert guidance and extra warm care and concern. I was able to learn so much about how to be the parent my kids need for me to be in such a non-judgmental, nurturing, and encouraging environment. Dr. S. is definitely in the correct career field. He even put the local special needs pre-school in his Will since he has no children (yet). I can honestly say that this doctor is a God-send. And I won't tell anyone that you told us to our faces that WE are your favorite patient and family at the clinic, Dr. S.!
The First 100 Days publication is a big help, too. I included it in the Resource Library. It literally guides you day-by-day on what to do in the days after you receive your child's ASD diagnosis.
End.
Thank you all for joining me for this fantastic first Ask Me Anything session. I hope that the questions I selected were insightful, and I hope my answers provided value and support. Remember, I'm always here, so feel free to reach out at anytime. Let's all continue this conversation and support each other on our parenting journey. Until next time, take care and stay well.
Thanks for being so raw and honest about this and answering these questions so well. And support is going to make a huge difference. I am hoping that now there is a lot more awareness there is more support which was something critical I missed out on at the time.