Of all the emotions you go through with one or multiple diagnosis of autism, the one that hit me the hardest was isolation. Living in a typical world with very non-typical children. I felt like the only one struggling which just reinforced my already judgmental mindset of “what are you complaining about, all parents are tired!”.
I knew that my people were out there but it just wasn’t happening in therapy waiting rooms or at school pick up. So, one evening (after some vino) I looked at Facebook and thought I wonder what’s out there? I found autism moms groups in Kentucky, Georgia, New Jersey, anywhere but here so I pounced and created Autism Moms of Seattle!
At first it was just me and a few friends. That was 4 years ago. The group has grown to 1847 moms and an average of about 300 posts per week. We have a sister group in San Francisco and splinter groups for kids with challenging behaviors and teens & adults. I also run an Autism Moms of Non-Verbal Kids group which is worldwide. I try to make sure everyone is an autism mom and they get their own welcome into the group with no pressure to introduce yourself if you’re not ready. We have ground rules such as no politics, religion, “cures” or business posting but our main mantra is to show love and support to all.
Having a group on social media has been a great format as it allows people to join and sit on the sidelines and watch. Not everyone wants to be front and present especially when emotions are so raw. Moderating a group this size does come with its challenges though. We have almost 2000 moms who are all at a different stage of their journey with completely different children. This sometimes results in heightened emotions however I have four wonderful moderators who help me keep the group running smoothly.
I had no idea the group would ever grow to the size it has and it just keeps on growing! There truly is strength in numbers and over the years I’ve watched moms with a new diagnosis grow and become veterans to help other moms. I’ve seen moms with a diagnosis that day come into the group feeling lost and alone and watched our group come to the rescue to hold her up. I’ve seen moms struggling to find that dentist that understands autism or get advice on autism-friendly places to take their children. I’ve seen friendships form that maybe wouldn’t have happened outside the group and children with autism find their first true friends.
The most rewarding part of the group is seeing on a daily basis that there is true strength in community. Coming together to laugh, vent and cry helps us all remember that we are NOT alone and that someone in the group will understand what we are going through.
Here are some quotes from members of Autism Moms:
Autism Moms of Seattle means that I have not one (biological) sister but over a thousand. We agree, disagree, cry together, laugh together, vent, send countless hugs and hearts, and share resources and ideas.
-Kathy
Love, support and zero judgment. It is nice to have families that can relate to this crazy journey we are on.
-Laura
It has helped me access resources that I wouldn’t have otherwise known about.
-Christie
In Autism Moms – we have found a family of people who get us, get our kids and are there to support us through our challenges – and NONE of that would have happened without Nikki. I go to bed every day thankful for Autism Moms and the people there – they are my rocks upon which to wash my sorrows so I can great my son every morning with a smile so he does not see my fears. Without the community Nikki started – my world would be a bleak lonely place.
-Jazi
Thanks to all the parents who submitted amazing quotes about Autism Moms of Seattle Facebook group. We appreciate your words and have listed them in the comments section for all to enjoy!
Thanks to all the parents who submitted amazing quotes about Autism Moms of Seattle Facebook group. We appreciate your words and have listed them in the comments section for all to enjoy!
“This has been the one place where moms can come and be free to share the good and bad in a space free of judgment. Because of the candidness of some amazing mothers, others have felt less alone. The beauty of Autism Moms of Seattle has been in the “raw” truth that runs through this group, the unending support regardless of how big or small a challenge may be, the creation of a space where people can share what they may not feel comfortable sharing in the “real world”. Moms are welcome with open arms – no child is looked at as “not autistic enough” which has been a struggle for some in the past – where moms did not fit in because their child had language or did not have extreme behaviors. The breakout of sub groups has been an additional great space for more directed conversations (nonverbal, challenging behaviors, and teens/young adults) that are specific to those areas but still this main hub remains. It seems odd to have a group that feels so close, like extended family, despite being almost 2000 members strong”
-Melanie
The Autism Moms of Seattle Facebook group has provided a safe space for me to be REAL about my ASD kiddos, a place to celebrate the small victories and the taxing challenges of living in our own little world of autism. It is a wonderful place to seek answers and resources for when we’re feeling stuck, are overwhelmed or need help. It helps me feel useful in being there for others who are also reaching out for support in this very isolating, complex, deeply beautiful life that for us, revolves around autism.
-Megan
The love and support in this group is so great I often consider moving to Seattle. I had lost a group I belonged to that related to me on having multiples, so dealing with my autistic twins became lonely because I had no one who could relate, no one who understood even a sliver , but I found my niche.
-Kherris
Autism moms group means that there’s finally a place where I my bad jokes about parenting an autistic kiddo actually get laughs instead of blank stares.
-Kaylee
Autism Mom’s of Seattle allows me to look back at my “autism mom” mistakes/choices with a more compassionate perspective, to seek advice from a resourceful and experienced community, and to look ahead with hope.
-Katie
What Autism Moms of Seattle Facebook group has meant to me–as a single mother…I am not alone in this journey.
-Martha
This group provides hope, camaraderie, resource, compassion, and support for moms raising children with autism. A place to be yourself and rest knowing these fellow moms just “get it”. I marvel at my fellow mama’s resiliency, humor, and grace.
-Katrina
A place where I can share secret feelings that I dare not show or even write in a journal that might someday be found by the child who provokes them.
– Jackie
Having a child on the spectrum for me means my mother’s instinct misses the mark more than I care to admit. Coming to my fellow moms and hearing what their experiences are with their children helps me gain insight into my child’s behavior and what it might mean for what he needs. Having someone who knows because they’ve been there, not because they read a chapter about autism in college once, makes an enormous difference. I’m grateful to have the wisdom of my “autism elders” whenever I need them.
– Cora
I am not the only one struggling to keep it together.
-Paula
A place where I could turn to when I was navigating the scary world of a new diagnosis and a world full of acronyms, therapies and strategies. I have been able to ask any question and have never been made to feel silly or stupid for asking. This group has been so helpful for my personal sanity and I’ve made many new in person friends of other mom’s with similar life experience as me. Thank you Nikki for starting this group!
– Jennifer
To know there are others who get it and can help!
– Alison
It has been a place to post and instantly have people respond with caring words who get exactly what you are going through. It’s also been a wealth of information and advice that you would never find on your own.
– Ramona
I found Autism Moms of Seattle right around the time my son was diagnosed with ASD and having a place where my experience was truly understood changed everything for me. Before then I really had no one who “got it” and it was a lonely parenting journey. AMS gave me an instant tribe, where I finally felt supported and accepted and able to speak openly about the challenges we were experiencing without feeling like some outlier. Being an active member of this group is one of the best things I do for my mental health. It makes it possible for me to be strong for my son even when I am surrounded by judgment because I know there are so many loving moms on this group who really understand and that I am not alone in this. This journey would not be the same without these special moms in my life!
– Madeleine
Nikki is a rock star! She found a way to connect families in ways that unite us in our common humanity rather than divide us in our differences. We are individually and collectively better because of this united front. Stay strong and mindful, mamas and know we’re in this together!
Does your group extend to Tacoma and Olympia? Or are there separate groups for those locations?
Thank you for your comment! Yes, this group is WA wide!