I rarely do things alone. I’ve never lived alone. Before motherhood, I rarely visited stores alone. In college, I preferred to study as part of a group. Even professionally, what I love most about middle school counseling is that there are two of us working together. So it would stand to reason that once the diagnosis finally sunk it, I would look to connect with others.
We contemplated about sharing Jacob’s story on social media last fall. We didn’t want people to worry. We knew that some of our non-traditional approaches could possibly be met with opinions and criticism. We didn’t want to offend those closest to us if we didn’t take up a suggestion they felt would help Jacob. But I couldn’t imagine a genuine and honest social media presence that didn’t include the diagnosis.
I knew we couldn’t have it both ways. You can’t keep this to yourself, and then expect support from those around you. We had to decide: carry the stress of Autism alone, or have the courage to be vulnerable with those around us. Vulnerability won.
We shared the diagnosis on November 29, 2018. You can read about how we shared HERE. Before we put it out for the world to see, those closest to us already knew.
For the most part, the overwhelming response was supportive and positive. People sent us texts. Others commented on the Facebook post to share their sympathies, their prayers. Friends wanted to connect us to other friends who walk similar journeys or who could understand the weight we carry everyday. We felt the love. We read every single post and message.
And while the support around us and the support online has been great, it’s the support between Juan and I that really matters. At the end of the day, I have full faith and confidence that my husband is as invested in this journey as I am. We go to doctor’s appointments together. We send each other research articles or mention social media posts that caught our attention. No doubt about it, we’re a team.
When Jacob starts crying before the alarm clocks go off at 5:30 a.m., 99% of the time Juan gets up to soothe our baby boy. Juan also has taken on most of the responsibility related to ordering the supplements and giving the supplements to Jacob. He has a system, and I dare not interfere.
Juan is the fundamentals, whereas I am the fun. I scour Pinterest for activities and games for us to play and do as a family. Want to work on fine-motor skills? I’ve got a Pinterest Board for that. Not currently enrolled in ABA therapy? No worries, let me see how we can improvise at home. I sign us up for the sensory-friendly movie outings or play dates. I find the gluten-free, dairy-free recipes to cook or restaurants to try. When I sense one of us on the brink of collapse, I call the baby sitter.
Another vital component to our support system is my amazing mother-in-law. She’s finished raising her kids, but shows up almost everyday to help us raise ours. From helping out with breakfast and school lunches to cooking dinner and picking up the home, she offers a helping hand in any way she can.
And if you’ve read any of my previous blog posts, you already know our friend Kristen is basically our AU-guru. She is the person that Juan will consult with because this momma on a mission has basically done enough research to write a book. Juan calls her for practical questions; I call her to plan dinner dates or just to check-in. When she and her husband jetted off on a much-needed and well-deserved trip to Mexico, we offered to drive to McKinney to give their son his methyl B-12 injection shots. Why? Because that’s what a support system does, and they’d do the same for us.
Earlier this week a local mom shared some raw and brutally honest feelings about her journey raising a child with Autism on a group page I follow.
“I wish I could commit him to a facility … I’m tired of not having peace … these last three years have been pure hell.”
People’s comments ranged from helpful to hurtful. While some people criticized the mother for her post, the overwhelming majority wanted to lend a hand. Over and over people commented: “You sound overwhelmed. Do you have someone you could reach out to for support?” Her answer: “No.”
Her post generated 150 comments. Mothers of children with Autism thanked her for her vulnerability. They offered to keep the child for a weekend. They connected her to different respite services so she could get a break. They shared their frustrations and feelings of hopelessness also. They offered to bring her coffee or food. They invited her to playdates and support group meetings. The AU mommas showed up in a big way.
My heart broke for the mom who wrote the original post. Life with no support system sounds like a lonely way to live. I have no idea what will come as a result of her post. I wonder if her feelings about the situation changed when she experienced the outpouring of support. I hope so. My biggest hope is that she realized her support team was already there, she just had to ask.
But support isn’t a one-way street, at least not in my mind. The reality is that while this is the challenge we face right now, we are mindful of the fact that we have many friends also facing challenges of their own. We give support and in return we receive support.
We have found support by connecting to these groups on Facebook:
Recovering Kids: Biomedical Healing – This is not a group specific to Autism. Instead, it is a world-wide group of moms, dads and caregivers who use biomedical approaches to treat various diagnoses.
Ausome Moms – This is a local group for moms of children who have Autism. There is a page dedicated to dads (Ausome Dads), but it is not very active.
Complex Kids – Not specific to just Autism, this page also dedicates itself to biomedical approaches regarding different diagnoses.
Autism Mamas DFW – Another local group of mothers from the Dallas area who share resources regarding therapies, school district services and experiences.
Autism Speaks Dallas/Ft. Worth – The local chapter of the national non-profit organization that focuses on advocacy and support.
Whatever your challenge may be, may you surround yourself with people who will help carry the burden. Find your people, your tribe. Social connectedness is critical to our mental and emotional well-being. Whether it’s family, friends, online groups or communities committed to the same cause, a support system can make all the difference in your world. Not sure where to start? Google it. Ask Alexa. Search on Facebook. It’s out there, I promise.
Signed with love, Kat.