Hi, I’m so glad you found this book series!
I’m Natashia, mother to a son on the Autism Spectrum and a daughter who is Neurotypical. This book series is designed for children with communication challenges, but will benefit all young kids who are at the beginning of their speech development. By incorporating multiple language modalities and senses, a child develops new pathways in the brain. This book series incorporates touch, sight, sound, visual word recognition, sign language, and is a precursor to a communication device for nonverbal children. As a mother to a nonverbal child, I understand the challenges of picture exchange systems, and the difficulty in convincing a child to use a communication device that is unattractive, and is also very expensive! This book series bridges that gap! Check out our videos showing how to use the books in the most effective manner, with communication and shared attention as the goal. I hope the I Want to Tell You book series enhances your child’s communication, and enhances your relationship!
Here is my story
Because Kenny’s story is a maze of medical events woven into sensory needs and communication barriers, I think telling my story as his mother and advocate has a different viewpoint. Yes, I was there at every appointment, packing snacks and tricks in the diaper bag, timing the drives of the back to back appointments appropriately, and using babywearing as a way to comfort him and so he could feel our bond amidst the invasive poking and prodding. But our emotions and long lasting impressions on our minds and hearts were, and are, different.
There’s something that changes when a woman becomes a mother. This new person didn’t exist when she was a babysitter or an aunt. The hardwiring of her brain changes. All of a sudden a fierce instinct, an almost animalistic response, takes over. This precious tiny life is mine to protect, and it is my new mission to provide an environment that causes this human to thrive. And when you discover this little human is made different from the rest, you discover even more from within.
I feel guilty for doubting that Kenny would ever walk, step on a curb unassisted, and even now, I struggle with doubt that Kenny will ever have a verbal conversation. After he proved me wrong with his gross motor skills, I began to understand the phrase “assume competence.” And what an opportunity to honor a child, or anyone, when you go into a relationship acknowledging their ability to grow. And what a learning lesson as a caregiver.
During my pregnancy with Kenny, I did everything right- ate an organic paleo diet, exercised as I had for years, took the best cod liver oil and vitamins, made collagen smoothies, read natural and attachment parenting books, I did it all. And at 21 weeks pregnant, we were told our son had a heart defect. I wanted to hide from the world. And at 9 weeks postpartum, I was turning a children’s hospital room into our apartment. I listened to my gut when I decided it was time to take him in, and listening to my gut has always proved right. I’ve learned two very important life lessons from Kenny- the first being to always listen to my instincts, and the second being that I’m not in control. I did everything right, and yet, here we are. I remember thinking I know parents who have not done their best for their children, and yet their children are hitting every milestone on time- they eat, they sleep, they play!
Once Kenny’s heart was repaired and healed, things didn’t get back on the typical path. I just kept learning over and over- set him up for success, and revel in the joy of those successes- no matter how “small” they were. Because in reality, they weren’t small.
It’s amazing when you realize that walking, talking, feeding oneself, coloring, jumping, the ability to take turns- these are all learned skills. These are big deals! I watch my daughter gain skill after skill with ease, and it is mind boggling! To have an appreciation for the human’s ability to grow feels like such a gift. Because I’ve journeyed with Kenny through his physical and neurological obstacles, my appreciation for the gift of growth is immense. I’ve also learned a volume of patience that never would have existed. I’m a different person because of Kenny. He has changed me forever. And we’re only five years in.
I often talk with one of Kenny’s beloved interventionists, and caregivers new to the diagnosis, about seeing Kenny’s personality versus seeing the autism. You cannot blame autism for a stubborn child who won’t follow instructions. Being able to see “won’t” from “can’t” is a lesson I will learn over and over until my children are grown and independent. My kids are stubborn. I’m stubborn. If I don’t want to do something, I’m probably not going to do it. And while autism does create intense interests, and it does put up obstacles, that doesn’t mean your child isn’t understanding what you’re saying. And defining where a meltdown differs from a typical child fit is important. A child throwing a tantrum provides the caregiver with the opportunity to teach and set boundaries. A child having a meltdown is dysregulated and filled with anxiety. There is no learning taking place. The child needs love. So many times my heart has ached for Kenny, searching for something to give him peace. When we were at the peak of his aggression and anxiety, I knew this child had terror in his eyes- he was not being naughty. His eyes were saying everything his mouth couldn’t . To this day he often grabs my face in his two tiny hands and looks me straight in the eyes, and we just stay in that moment, both of our hearts being filled. I really try to let him be the first to look away.
Kenny is easy to fall in love with. He loves women of all shapes, colors and ages. And the ladies love him right back! But as we face the transition to elementary school, I fear that a teacher or aid isn’t going to give him the genuine engagement and effort it takes to see his soul. After all, it’s an education system, not a family.
Everyone on Kenny’s team has been hand selected. And if someone did not come to love Kenny, then I parted ways with them. I want my children to be seen and heard for their personalities. My children are not statistics.
I often wonder what we look like from the outside. Granted I can’t give the time to that thought because I’m too busy juggling the many hats of being a mom to a neurotypical child and an autistic child, but on occasion I do look from the outside and wonder. I think I wonder because I intentionally set Kenny up with his communication device in public settings- the grocery store, children’s museum, playground, etc. I set it up not only for him to communicate in a functional setting, but also to educate others. It’s an alert to other families that while my boy “looks normal” there’s very clearly something going on here. It also presents an opportunity for those caregivers to educate their children. There are special needs people everywhere, and if we can give them support, it’s mutually beneficial. And in such a narcissistic culture, it’s our children who need to learn this more than anyone.
I don’t know if my musings are painting any sort of picture of what it’s like to be the mother of an autistic little boy, but I’m okay with that. I think more than anything I want to drive home the importance of kindness.
Treating all people with kindness and honoring them for their unique abilities brings vivid color to your own world. I see so much angst in social media mom groups, in autistic adults vs. “autism moms” with warrior mentality, in ABA (Applied Behavioral Analysis) criticism, in whether to let your child stim or not stim (self-stimulators behavior, the repetition of a movements or sounds to calm oneself). How about if we celebrate growth and individuality, and at the same time, nurture and cultivate kindness and respect? And model it too.
I fear for both my children as they step foot into the education system, into a culture of bullying, in a world of competition, that they are going to be shoved into a predetermined mold. But every day that I change my own attitude is a victory for their future. I lose my patience when my kids are still awake at 10 pm just like every other parent, but it’s my job to start fresh the next day and actively set my mind on kindness and growth. It’s also important that I recharge my own batteries. My husband, my dear fun loving, hardworking husband, is so wonderful about pushing me to do things for myself. Would you believe he arranged for me to go to Hawaii on vacation while he stayed home with the kids? Now there’s one special guy. I read recently how if you lose the captain, the ship goes down. I also firmly believe in the power of being a team. My husband and I are partners in raising these children, and we must play for the same team.
I love my family fiercely. I want to set the kids up with the right tools for successful, productive lives. And for Kenny and kids on the spectrum, that means teaching them the power of communication. I hope that my own learning curve with my son becomes a tool for other families. These kids need a voice. They need to feel the power of choosing their own snack, choosing whether they want to go to the zoo or playground, choosing if they want more or if they want to be all done. They deserve the same power of healthy protest as neurotypical children. It is my hope and dream that this communication book series is a stepping stone for these kids to begin their path of independence. I’ve experienced firsthand the lack of tools that honor these unique brains. I hope that these books serve them. I hope that as I continue to journey with Kenny that I can engineer more tools that help these children flourish, not change them into being “normal,” but tools that honor them and enhance them. We need these kids to grow. Chances are, it’s their different perspectives that are going to make the neurotypical world better.
It’s such a gift to me that I might be able to help others. It’s such a gift that I can see Kenny and hear his words, without him speaking them. I truly appreciate the opportunity to touch families lives.