By Jenilee Goodwin
The Journey
When I look back over the years, I can clearly see the imprint of neurodiversity all over our family. I can see the difficulties and challenges that we faced, not knowing the cause or the reason. I can see all the funny moments, the goofy habits, the collections and noises. The behaviors, the fidgets, the accommodations, the anxieties and the complexities of many points on the spectrum were there but I didn’t have a name for what I was seeing or experiencing.
There was a moment that I remember so specifically. I was looking down at my middle daughter. She was 18 months old, playing on the floor with a large, 24 piece puzzle. Her tiny hands moved each piece, over and over, turning them until the pieces fit together. How does an 18 month old put together a puzzle like that?
She was also the toddler who broke almost every toy we had. She broke them to examine them and then put them back together. She pulled the VHS tapes out of the cabinet daily only to re-organize and replace them. She was afraid of bubble gum popping and anything dressed in a costume. She was smart and curious, quiet and anxious. She played perfectly alone and would only sleep with a crib full of blankets, pillows and stuffed animals.
As a young mom, I remember commenting to the pediatrician that I wondered if she had autism.
The pediatrician gave an absolute no, she couldn’t possibly be autistic.
My older daughter has always loved trains and outer space and dinosaurs. She loves bugs, putting together small things, playing long games, and expressing herself through theater.
My youngest daughter couldn’t wear shoes that felt funny or a dress that made noise or pajamas that had the slightest discomfort. She had a right way to do everything and the ability to see things that most people don’t notice.
My girls have hundreds of stuffed animals and they know their names by heart. My middle daughter keeps track of them in families and knows from the farthest back, which ones go together.
I had three girls with deep interests, quirky behaviors and plenty of sensitivities to noise, foods, fabrics, and textures. Girls who tire easily yet want to do lots of things. Girls who collect legos and rocks and tiny, shiny objects only to lose interest and start collecting something else.
During homeschooling, one daughter hid under the kitchen table with blankets so that learning could happen in a “cave.” One daughter bounced on a yoga ball so that she could do math. One daughter had to hang upside down on the couch so that she could listen to me read history for the day. If anything was off, out of schedule or not exactly right… school was not happening.
As my girls grew older, I noticed black and white thinking, low EQ, self-referencing, rigidness and executive function challenges. I saw how they masked and worked to do all the things around them but then came home to hit the proverbial wall in complete exhaustion, with empty social batteries and a tendency to get lost in their own worlds.
Yet, anyone that I spoke with about these behaviors and traits told me that my girls had good eye contact and they communicated well for their age. It couldn’t possibly be autism.
I, on the other hand, knew that it could be autism. I was reading, learning and understanding more about girls on the spectrum. My girls were also reading and learning and expressing that they might be on the spectrum. The experts we’d seen up to that point didn’t seem to be listening.
Slowly, through a lot of perseverance and appointments, the girls received confirmation of slow processing, sensory issues, ADHD and high IQs. With that information, we entered the world of IEPs, giftedness and accommodations.
Yet, I was still told that autism was not a part of the picture. They have challenges, but definitely not autism spectrum disorder. Once again, I was told that my girls speak too well, look people in the eyes and are too expressive to be autistic. They do well in school, have friends, manage responsibilities and don’t “look” autistic.
As my girls grew older, we began traveling and working in global missions. This meant learning languages, attending schools in other countries, culture shock and lots of new places for our family. Anxiety went up, challenges went up, and stress skyrocketed.
We had a perfect storm of unknown neurodiversity, sensory challenges, stress and an incredible amount of daily change.
We discovered spatial awareness issues, lack of feeling hungry, focus challenges, moments of muteness, blank stares, and demand avoidance.
The Diagnosis
After a long journey through more testing, school meetings, counseling, teacher concerns, homeschool challenges, anxieties, shutdowns, meltdowns, and more meltdowns, we made our way into the office of another educational psychologist who asked the right questions, took us through the full diagnosis process and helped bring about answers.
My girls were graduating high school before we had the right label, the right information, and the right confirmation of their experiences.
For the girls, the diagnosis was freeing and helpful. It gave them permission to express their feelings and realities with autism vocabulary. The diagnosis provided accommodations in college and work that they would not have had without a diagnosis. Knowing about ASD gave them confidence and belonging.
For me, it was worth the entire journey to get to that moment of diagnosis, confirmation and clarity.
I watched my daughter, the toddler working out a giant puzzle, now an adult working out bigger life puzzles with new information.
I saw my girls equipped with understanding, knowledge, vocabulary and terms to express themselves, advocate for themselves and step into adulthood with the assurance that their brains just worked a little differently than some of the brains around them.
They now knew that their brains were ok, they just needed a little more help, coaching, life skills and understanding. They had to work hard while giving themselves grace for the challenges.
The Understanding and Acceptance
All the learning, researching, reading, listening, and advocating was reaping the reward of peace and acceptance of a long-known yet newly-diagnosed disorder.
The in-depth journey of diagnosis can be a challenge for a lot of families and finding the right resources and care can be daunting. Getting to a diagnosis often requires a lot of advocating, persevering and discussing. Then, you have the actual parenting and guiding through the different stages of growth.
For many, it can also mean the realization and recognition of neurodivergence in one or both parents which then highlights the further complications of marriage struggles, miscommunication, acceptance, and reframing a lot of misunderstood history. Problems that have been there now have a name, a reason. For couples who are just finding out they are a neurodivergent couple, it can be a rocky season.
The Equipping
Autism creates layers upon layers of things to unfold and accept. In our story, the unfolding of experiences and acceptance of new realities was greatly helped by books, counselors, podcasts, coaches and therapists.
I realized that with every new stage, every new age, every new season, I needed new skills and understanding and help. It was invaluable to have other moms to talk to about autism and it’s impact on our family.
Each season of the growing up years requires different skill sets in parenting. Each child, youth and young adult on the spectrum has different needs and requires new levels of support during the many transitions in their lives. They have different shutdown points and accommodation needs. Parents need encouragement and creativity within their own family dynamic to go through each of these seasons with their children.
If this journey sounds familiar, if you’re wondering if autism is in your family’s story, if you wonder what your role is as a mom in the journey of neurodiversity in your family, it could be helpful to have other moms to talk to.
Are you finding yourself wondering how to parent, equip, help your kids as they transition to adulthood? Are you worried about learning everything and knowing how to help?
Just like our kids need special support, moms of kids on the spectrum have needs for connection, ideas, help and understanding on the journey.
This fall, I’m offering a “Moms of Kids on the Spectrum” coaching group for support, encouragement, learning and sharing stories. We’ll have guided discussions on topics related to parenting our kids on the spectrum. This group is for moms of kids 13 years old or older with specific discussion geared towards helping our kids move from childhood into adulthood.
If you’re interested in the details of this group, email jenileerachelcoaching@gmail.com or leave a comment on this post. Let’s go through the journey together.
Author Bio: Jenilee is a certified professional life coach, a certified autism coach and an ordained minister. With over 20 years in career ministry, she brings her own lived experience, problem solving skills, compassionate support and creativity into each coaching session. She'll ask the hard questions while listening, guiding and coaching clients in their unique life situation. With many in her immediate family on the autism spectrum, Jenilee has a special place in her heart for moms of kids on the spectrum and for wives going through the difficulties of spectrum marriage. Even more specifically, a passion for women who are also in full time ministry or missions. There are very few places to share the full story. In coaching with Jenilee, you can share every single page of the story. For fun, Jenilee loves reading, writing, coffee, going for walks, and watching history documentaries. You can connect with Jenilee daily on Instagram @jenileerachel or through her website, jenileerachel.com
Thank you Jenilee for sharing your story. I am so glad to have a coach like you to refer my clients to.