My Little Fire. My Greatest Teacher.
Before my son was born he visited me in a dream. I saw that we would live together, perhaps for many years to come. I saw us sharing a special bond, one I do not yet fully understand. He told me his name would be Kaiden. Not the Gaelic spelling you might expect with the last name Sheridan, but instead his name is Arabic, meaning “little fire.” I had no idea when he gave me his name just how true this would be.
He came into this world too soon, too eager to be among us. I will never forget the day. I went to work in Boston and although there were signs he was close, I ignored them thinking, “It can’t be, he’s not due for another month." But my “little fire” knew better, he was ready to make his grand entrance into this world. He was born on April 15, 2008, a month before his official due date.
By all accounts he seemed healthy until he failed the hearing test at the hospital. The staff told us he might be deaf, but they couldn’t be sure. We would need to have more testing done. My husband and I thought to ourselves, “This can’t be. There must be some mistake.” We would clap our hands repeatedly over his beautiful face and watch for a reaction. We prayed the hospital was wrong.
Like many new parents, we took the slowest, safest route home from the hospital. I remember thinking how beautiful the world had become in the short time I had spent in the hospital. The forsythia, in it’s golden glory, had bloomed and the crocuses had found their way to the surface. The promise of new life and new beginnings was all around us.
After months of anticipation we had an appointment with an audiologist who was able to confirm that Kaiden could indeed hear. He was not deaf. It was a miracle. He was going to be fine.
Days, weeks, and eventually years went by. At 3-years-old Kaiden started pre-school. We were so excited for him to begin this new adventure.
Within weeks of starting pre-school our high hopes seemed to come tumbling down. I remember the day I received a call from the program director and she said, “He just doesn’t listen. We tell him one thing and he does another. We think he has significant cognitive delays. He just doesn’t understand.”
My heart sank. I couldn’t believe that someone would tell me over the phone that she thought my son had “significant cognitive delays."
At first, I fought her opinion of my son. I couldn’t see it. I didn’t want to see it.
We met with the school director and she told us our son would often hide in a corner chewing on a sock in his mouth. I was so disturbed because I had never seen this behavior and couldn’t believe it to be true. “She must be exaggerating,” I told myself.
I thought, “Well, maybe, if we try a different school, different teachers, he’ll be fine. It’s not that bad. He has a hard time with structure. So what if he still has trouble toileting. So what if he’s a little different.”
Desperate, my husband and I enrolled him in a Montessori school. We thought a different approach more tailored to the students learning style might be perfect for our son. Within weeks we were called into the headmaster’s office. Again, we were told, he needed help that they unfortunately couldn’t provide. That Kaiden would not be able to continue at the school. They recommended we seek testing for our son at the age of three for sensory processing disorders.
We did not understand. We hoped he would somehow squeak by and would find a home at his new school. This would not be the case. They told us stories of him cowering behind plants in the hallways, needing sensory breaks, and simply being overwhelmed. He showed impulsive, anti-social behaviors, spinning on the floor, throwing his shoes and spitting at others. He struggled with toileting when his peers seemed to be moving forward. He wasn’t a “bad” child but required far more support and supervision then they were able to provide.
Desperate for answers we sought professional help and were lucky enough to receive care and a diagnosis from Children’s Hospital in Boston. My sweet baby boy was diagnosed with Autism Spectrum Disorder. I cried tears in the doctor’s office, partially relieved that I wasn’t crazy, that there was indeed some reason for his behaviors and struggles to date. And now, I had a diagnosis, an important step to give him access to proper care and treatment that would give him the brightest future possible.
I remember going home and waiting for my son to go to school the next day. I had a moment of quiet to myself and I cried heart-wrenching sobs of pain and sadness. I grieved the loss of my “perfect” son. He no longer existed. The son I once knew was gone. A new life, a new chapter, had just begun.
From that day forward I became a warrior. I never liked confrontation but from then on I had one purpose, and that was to advocate for my son. I would fight for him and whatever he needed. I became his champion. My days became filled with doctor appointments, research studies, occupational therapy, speech therapy, behavioral therapy, cognitive therapy, toileting specialists, and social groups. You name it, if the doctor said he needed it, we have done it.
God blessed us with a second child three years later. This beautiful child has also been diagnosed with Autism Spectrum Disorder. I joke that I was never good with “patience” and I must admit I still struggle with “patience.” But dear God, if there is anything I must be learning it must have a little something to do with “patience” and how I see my children and the world. You think it’s difficult loading kids into the car, add in an extra dose of “special needs” and well, you’ll see a spoonful of “patience” goes a long way.
My idea of “perfect” was thrown out the window. My whole life I struggled with trying to be perfect. With trying to fit the mold. With trying to be the best I could be at every single thing I did.
Then one day I woke up from this dream of “perfection” and realized being “perfect” and finding "success" is nothing more than showing up and doing your best on any given day, no matter what others think.
My journey with my “little fire” has taught me the power of "fire." He has taught me to fight against inequality and abuse. He has taught me to bite my tongue, if in the long run, honey will get him what he needs. He has sadly taught me that “unkindness” is absolutely real. Sometimes, some of the greatest violators of truth and integrity are those who look the other way, when they are indeed the very ones with the power to make a difference, if only they would have the courage to speak up.
I will never forget the day Kaiden came home from first-grade with a black eye and when I asked the teacher what happened she told me it was nothing more than “dirt.” Of course I asked Kaiden as well, “Who did this to you? How did this happen?” but he wasn’t able to communicate this information on his own behalf. It was in that painful moment, combined with many other painful experiences, that I knew no matter how hard we fought, Kaiden would never be safe in this school.
We were lucky. Within months of making our decision to move, we were blessed to sell our home and transition to a new town. We were able to start over. But this new life came with great sacrifice. We had to start over financially and both my husband and I found new jobs in the process.
In some ways I struggled with the move. I wondered if I had failed by leaving. I prayed to God for guidance and heard, “You are not alone. You have not failed. You have won. You have the freedom to move. You have the education and the resources to speak up. So many others in the same boat, or perhaps even worse than you, do not have the same opportunities you have. They don’t get to ‘start over’. They don’t get a second chance. You are blessed.”
It wasn’t the path I dreamed of for my family. I prayed for guidance every day. Please God, “Show me the way. Show may a way out. Show me a safe and secure future for my son where he will get what he needs. It doesn’t have to be the best, but I need to know he is safe and he has a fair chance for the best life he is capable of. That’s all I want.”
It turns out, those are indeed big hopes and dreams, especially when you have a child with special needs. I don’t care anymore when I get nasty looks at the supermarket by disapproving parents or others who simply have no idea what it is to raise a child who is “different.”
I will never forget the comforting words of Kaiden’s teacher at the Montessori school. She told me, “All children have special needs, at one point or another. It’s our job to help them overcome these challenges when they present however we can.”
These words have rung true for me for many years. We all have challenges that we face at one point or another in our lives. It’s up to us how we handle these challenges. I am grateful for the grace of God, and an invisible guiding force that has helped us navigate these changes in our lives. It may not always have been the obvious path, but a helping hand or stepping stone has always appeared just when we needed it most.
Kaiden is now 10-years-old and I met with his fourth-grade teacher briefly today for our parent-teacher-conference. I’m happy to report that Kaiden, overall, is doing great. He gets all the support he needs across the board from a special education teacher to occupational therapy to social pragmatics and more. But today, Kaiden’s teacher did something wildly unexpected and amazing. He shared his personal thoughts on Kaiden’s progress and they were much more powerful than I could have ever imagined.
He said, “Your son doesn’t think like other children. In fact he thinks so differently, in a good way. He has a private lunch group once a week to work on social skills and making friends. What's so great is that Kaiden isn’t afraid to invite the ‘pretty girl’ or the ‘popular boy’; your son doesn’t care. He invites them all. He doesn’t see them as better than him. Your son has a kind heart. He is kind to everyone, and I see that. He is gentle and caring and tries to be nice to everyone. He also sees things in ways others do not, and this is special.”
I was moved to tears by the words of Kaiden’s teacher. It wasn’t that we had a special relationship over the year. It was simply for the first time, in what seems like a long time, someone took the time to see the beauty within our “perfect” son.
He saw Kaiden’s beautiful heart. And well, he gave me hope. He gave me hope that others might see the beauty within my son as well. That others might see his potential. That even though he is quirky and different, perhaps there is a level of caring and compassion that is Kaiden's gift to share in this world.
I go to sleep every night and I often wake up in the middle of the night for hours wondering what will become of my son? How will I take care of him? Where will he live? Will he be self-sufficient? Will he ever find love?
God knows who Kaiden will become. I can always count on Kaiden to say “black” when I say “white.” To see the world differently than the average person, to see a different possibility. And I can always count on my “little fire” to have love and compassion for others even when “normal” kids and adults do not always show that same kindness to him.
Kaiden hasn’t been invited to a single birthday party in over a year. He doesn't get invited for play-dates. And yet, he is happy. He wakes up smiling every morning. He cuddles with his younger brother every night when they go to bed. He loves his fish named "Guiness" and his hound dog we call "The Brookster."
Every morning I'm greeted by both my boys, giving me snuggles before we start our day. And when I ask them, "What are three things you are grateful for?" They will often say, "My family," in addition to things like ice cream, Atari, and Grandpa. The truth is, I feel the same way.
Kaiden dreams of being a professional football player even though I try to prompt him to have a backup plan. He dreams of going to college even though I tell him it doesn't matter where you go as long as you find something you enjoy doing and can pay your bills.
I have to remind myself that God has a way of taking care of things. That the obvious path isn't always the best path. And that no matter who we are or what challenges we face, we all have special gifts to contribute.
It turns out The Rolling Stones did know a little something about life when they said, "You don't always get what you want, but you get what you need." Isn't this the truth? Turns out God knew exactly what our family needed, even when we didn't.
I thank God every day for my beautiful family. My crazy hound dog that never stops barking, even as I write this, and for blessings I didn't know I needed, but I would never change.
With love my sweet, Kaiden. You will always be my “little fire.” Thank you for all you teach and inspire. Thank you for your spark, your enthusiasm, but most of all the kindness you shine so brightly in our world. I love you.