‘What if I can’t help people learn Kit’s song? Do I know his song? Does he?’ Then it dawned on me. I’m not the composer of his masterpiece. He is.’: Mom to son with autism says ‘his world is beautiful’

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“I remember the exact moment it came to my attention my little boy was special. It wasn’t when we figured out he had a speech delay or an early developmental delay, and it wasn’t even when he was diagnosed with autism. It was a moment the day after I had him. While still in the hospital, I laid him down in the little ‘crib on wheels,’ as I called it. It looks like a rectangular fish aquarium where they can see you and you can always see them. I took a moment to lay him in the aquarium ‘crib on wheels’ to take a little nap after I had gotten him settled, or try to while he was asleep.

I closed my eyes for a brief moment and felt a presence like someone else was in the room other than him and me. I opened my eyes frantically and they immediately met his. There he was just staring at me through the plastic baby aquarium, big brown eyes bright and bushy-tailed and beautiful plump red cheeks, pretty as a picture. He was just as quiet and contempt, simply gazing at me like he’d been waiting the whole 9 months inside my belly for this one moment, examining every minor detail of my face from forehead to chin, not missing a blemish.

Courtesy of Jenae Briggs

You see, Kit saved us. Kit is not our first baby, but the first baby we were able to take home. He was our angel sent to us from heaven by his big sister in heaven. He’s our rainbow baby and our saving grace.

I also remember the exact moment I knew Kit was different than most. I was on maternity leave with Kit’s little sister. There are only 21 months between the two, so in a lot of ways, I felt as if I had twins. Kit was 21 months old when my husband and I brought my youngest little girl home. Every time she would cry, he would cry. It has changed some over the years but they pretty much still get upset together. It’s just easier to manage now we are semi-seasoned parents.

Courtesy of Jenae Briggs

I remember standing in the kitchen in our old house, washing bottles to prepare them for the next meal for our little girl, and there was Kit jumping up and down flapping his arms, as he did a lot when he got excited. It was as if he was a little chick just hatching out of his egg and trying to learn to fly. I would later learn this is called ‘hand flapping’ and one of the many signs of autism. There was another clue that sits heavy in my mind, a memory now. Still on maternity leave with my little girl, all four of us were together, snuggled in our little house at the time. My husband had gone back to work and I was doing house duties. As I was doing laundry, I came to my new pink nursery for our little girl to put her clothes away. When I entered, I glanced at the floor and then knelt down in astonishment, mouth wide open. There were seven perfectly lined hair bows in a crisp line across the floor.

Courtesy of Jenae Briggs

At this point, I had done lots of research on the signs to look for in children with autism and this one marker, along with some others, Kit had not met yet; lining things up. As a parent new to any type of disability world, you look for any sign of hope they don’t meet the description exactly, as if there is still a glimmer of a chance. But standing now in the nursery looking down at the bows, my assumptions appeared to be written with a line as clear as an arrow, right on the floor. Even though I had done some extensive research on autism at this point, I still was naïve to the amazing yet dynamic world it really was. Almost like fear of the unknown.

Looking back now, I know there were lots of signs before these moments, subtle but still moments. However, Kit was the first baby I ever brought home and I didn’t know any different because I had no comparisons. Even if I did, every child is special in their own way. Boy or girl, oldest or youngest, autism or a-typical. All of them are different and unique in their own way.

Courtesy of Jenae Briggs

Kit was diagnosed with autism at 2 and a half years old. There’s something both validating and surreal when you hear something about your child you already know and maybe have known for some time. It’s validating because it’s what you have felt and hearing someone confirm that for you is a relief. Then there is the surreal part. Even though you knew the diagnoses in your heart and soul, actually hearing a developmental specialist diagnose your child is a hard pill to swallow and may feel unreal. I remember someone very wise once said to me, ‘Your biggest challenge will be him allowing you to enter his world. Once you’ve gotten that far, your next biggest challenge will be bringing him out of his world and showing him yours.’ I personally feel like this is something you do on a daily basis with children on the spectrum. Their world is beautiful. I imagine it to be the most magical place, where time stands still and there is nothing but beauty in the world.

Courtesy of Jenae Briggs

I see that world through him sometimes when he is outside. The way he watches the trees sway back and forth, how their leaves brushing up against one another sing music to his soul. How he looks around them to see different angles of the sunlight coming into his eyes, it is magical. I see that world when he laughs. His laugh is the most joyous laugh if you’re in range of hearing it, you smile too and your heart grows a little. So in all honesty, I am not sure our world we live in on a daily basis can compare, but the intermingling of the two is what I strive for.

There is a large part of our life that feels like a blur at times since Kit’s diagnosis. The frantic kind. The kind where you educate yourself again and again, over and over. Your time is filled with therapies, evaluations, paperwork, advocating, groups, research, more education, meetings, appointments, equipment, ideas… as I say often, this is a rabbit hole that never ends. Ever. Then there is a whole additional portion to this and it’s actually learning to parent and be supportive of your child.

Courtesy of Jenae Briggs

There are a lot of things that are very real and raw in the autism world, but let me tell you something that is unreal. It is unreal to me how in tune he is with nature. How he finds beauty in such small details we often overlook. It’s unreal how someone with minimal verbal communication can so clearly communicate in other ways and teach you love needs no words. It’s unreal to me how he has helped my husband and I become not only better parents but people. How we celebrate every little triumph and how he has taught us being present in that exact moment and enjoying it together is all he ever needs. How his favorite place, big or small, is when all four of us are together in one room. It’s unreal how I see his eyes solve a problem set in front of him instantly, and then trying to find a way to show you, he knew the answer before you.

Courtesy of Jenae Briggs

Kit is 5 now and while we know we have a long road ahead of us, it is one we will ride down together. Good, bad, or indifferent, we will figure it out one way or another. That is not to say that every day is easy, because let’s be real, life with children can be extremely challenging. Even if the child isn’t challenging, the world in which you know they’ll grow up in is. Then you throw multiple diagnoses on top of all of that and it becomes really difficult. It’s important to know and remember if you have met one child with autism, you’ve met one child with autism.

Courtesy of Jenae Briggs

Like atypical kids, each one is different and remarkable in their own way. Kids do not come with little instruction manuals that allow parents to know how to raise them or what to do. As a mother, I often worry about certain things that keep me up at night, like all mothers I am sure. My worries for Kit are small to some but substantially large to me. I often worry he won’t have a friend. Someone that loves him for how amazingly smart he is and how pure of a heart he has, a person that can see the fire in his eyes that burns for adventure and craves knowledge.

I often wish I had a magic ball that would show me where he will be in his life in 10 or 15 years and if I am doing my best to help him succeed in life. I wonder if he will be able to have a job; not only a job but one that fulfills his mind and allows his soul to feel at peace he is doing something he loves and not just something that brings him in money to live. I often wonder what his life will be like when his father and I have passed on. I worry parents to atypical children won’t take the time to explain autism to their kids and how children with autism are not tainted; they’re just a little different than them. How can parents have the time to educate their kids on autism with how much we have going on in the world right now? I worry people will not be kind to him and try to get to know him to understand the beautiful parts we know and see.

Courtesy of Jenae Briggs

Then I take some breaths and realize these things aren’t a guarantee for anyone. He has a friend and always will—his sister, one of the best things we ever did for him and her. Right now at 3 years old and him 5 years old, she thinks he hung the moon. My hope is throughout their lives, this will continue, even if we skip it during the teenage years where I am sure there will be lots of arguing. I’ll have faith knowing I did everything I could to educate the world on how we as a society need children and adults who think outside of the box. We need their creativity, their way of thinking, their way of showing us there is diversity and different forms and ways of delivering emotion. Sometimes I imagine him to be an angel sent to us on earth to make sure we as humanity still have a soul.

Courtesy of Jenae Briggs

I wrote this passage for Kit on his Instagram, which I use as a platform to educate the world on autism. I call it The Magical World of Kit. It is my perspective, along with lots of resources, and our story thus far for parents, children, adults, everyone really in regard to our pathway through the life of autism. I named it after a book we often like to read called ‘Giraffes Can’t Dance’ by Andreae Guy Parker-Rees. I don’t know if the author knew it at the time, but this story describes autism and their abilities extremely well. I hope you enjoy it as much as I did writing it and thank you for reading our growing story.

‘Sometimes when you’re different, you just need a different song.’ (Giraffes Can’t Dance) This book is one of my little guy’s favorites. He sits down on his green car carpet, legs folded into one another, and listens to every single word. It’s as if the sound of my voice reading the words off of every page makes sense with his soul.

Courtesy of Jenae Briggs

Tonight, while reading to both kids something came over me. ‘What if I can’t help people to learn Kit’s song? Do I know his song? Does he?’ I went through various thoughts in my head about maybe I wasn’t pushing his song hard enough. The song I thought was his. Maybe I’m not doing him justice. Maybe I need to educate myself more and more. Maybe I should push more, advocate more, ask more questions, draw more lines, and demand more answers/results. Therapies. Strict schedules. Enroll him in more extracurriculars. Eat more healthy foods. Try NEW therapies. The list continues to go on and on… This is a rabbit hole that never ends. Ever. Then it dawned on me… no parent chooses their kids’ song. Kids aren’t like a jukebox where you can selectively pick out the song of your liking for them. No matter how strict you are to create it for them, it’s theirs and it comes with time. A lot of grace and time. Ultimately they choose. The melody, beat, rhythm… they create it all on their own. Every child has one— autism or not.

At the end of the book, it reads, ‘We all can dance, when we find the music that we love.’ I’ve decided as long as we can find the music our children love, we must be doing something right. Their own beat to their own drum. I am not the composer of his masterpiece. He is. Hopefully, though, I can help him create it, his way. Their song is something that takes time to develop and understand. I think they add additional parts during certain milestones of their life, much like adults. I find comfort in knowing whatever song he chooses… I’ll be there to dance to it. Oh, and by the way, I’m still creating my own.”

Courtesy of Jenae Briggs

This story was submitted to Love What Matters by Jenae Briggs from Prince George, Virginia. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘Of course he doesn’t, he’s absolutely fine!’ Everyone laughed it off. My little boy wasn’t going to talk, EVER.’: Mom to son with autism urges ‘acceptance starts in the home’

‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty

‘They whispered to each other. ‘How can that be?’ My heart sank. ‘He doesn’t seem THAT different. It must be a mistake.’: Mom surprised by son’s autism diagnosis, ‘We just chalked it up to ‘every kid is different and learns at their own pace.’

‘My husband took the diagnosis as an insult. ’What is your problem?’ He began to cry, ‘I just don’t want anyone to hurt him.’: Parents to son with autism say ‘he is meant to be exactly who he is’

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