No parent can ever forget that moment when they learned that
their child had autism.
Today, I’d like to share my story with you.
Since the day she came home from the hospital back in December of 1997, my daughter Lana had the typical autism traits; though I didn’t know it at the time. When she wasn’t feeding or sleeping, she cried and cried and cried. My family and friends suggested to me that she had colic, which seems to be the “go to” answer when your newborn cries all the time. But my intuition told me that this was not the case for Lana; though I admit I had no idea what the true answer was.
I tried any and all ideas to help calm her from her distress, including running the vacuum after hearing that the hum is supposed to work some kind of magic for calming babies. My “magic” came in a puff of smoke and burnt motor smell wafting through the house with a baby still crying (Yes, I killed a vacuum cleaner). The only cure for the crying was holding Lana in my arms and sitting with her in a rocking chair. Many, many hours during her first year we rocked in that chair with me praying and wishing for her next nap time so I could finally have a break from her. My goal became just getting through her waking hours, so I could put her back in her crib.
Her crying lessened in stages. When she began crawling, the crying began to lighten up. The same happened when she began walking. As she began to gain her own independence, her mood gradually began to turn away from the constant crankiness to more happiness.
But, there were other things that became unsettling. Lana did not respond to my voice or her name being called like many babies do. I could talk to her and she seemed to look through me as if I wasn’t there. She rarely made eye contact when being spoken or read to, and if she did, it was by total accident.
Her inability to communicate encouraged many meltdowns for her and me. There was absolutely no way to know what her problem was or what her needs were when that meltdown ensued. All I could do was tolerate the screaming and literally wait for the storm to pass. Sometimes these meltdowns lasted only five minutes, but that was unusual. Most of them lasted anywhere from 30 minutes to an hour. Feeling overwhelmed and broken, there were many times where I laid like a lump on the floor sobbing with stress, having a meltdown of my own.
Lana also lacked in the speech department. She didn’t imitate sounds or talking, and honestly to this day, I don’t know what her first word really was. She seemed to speak in her own language. The only way she could communicate was to point to what she wanted or needed.
When Lana was around 18 months old, my mom was the first person who mentioned
to me that something might not be “right” with her and that maybe her hearing
should be checked. I knew that her hearing was spot-on, though, because
if she was in her bedroom and the Teletubbies theme music was playing in the
living room, she’d cruise through the house to get to the TV and watch her
favorite show. But I acknowledged by mother’s concern and took her for a
hearing test. And surprise, surprise … her hearing was perfect.
When she was in her early twos, she was examined by a neurologist. I received a three-page review of her testing and in the final paragraph the word “autism” appeared. Autism? I had never even heard of it before. I immediately got online to see what I could learn. As I became more familiar about autism, I realized that nearly every single trait applied to Lana.
It may seem like an opposite reaction, but I felt relief. I finally had a direction to go. There was no more mystery behind her. Though nothing had really changed, no problem had been fixed, and nothing was easier, just knowing what I was dealing with brought me a little bit of comfort.
My now ex-husband, on the other hand, had a very difficult time accepting the news. He couldn’t believe that something like this could happen to him. “What did I do to deserve this?” were his thoughts. “How could this happen to me?” His attitude left me feeling very frustrated … this was OUR child and all he could do was think of himself and his embarrassment of having a “less than perfect” child.
His denial last for many years, which ultimately left me feeling very “alone on an island.” I felt that the weight of raising an autistic daughter was mine and mine alone to shoulder. And I was okay with that.
Over the years, Lana has progressed and has become a very happy teenager;
though socially she is still around three to four years old. She has not
outgrown her meltdowns, but they are much rarer these days and often seem to
coincide with her PMS. She is gaining more and more independence with
each passing day. She can now cook her favorite French fries in the oven
and knows how to use oven mitts to take them out, which is a huge
accomplishment. Because of her light touch, she still needs assistance
with things like washing her hair and bathing, which we are always working on.
Though she is independent in our home, will she ever be truly independent? That’s a question I don’t have an answer for. She is my daughter and I love her dearly, more than I could ever express in words. I know that it is my mission in life to help her grow and, more importantly, be happy and enjoy her life. I admire the way that she can experience life with no regrets, no judgment, and not caring about what others think. She is totally in her own element and is free. And with tears in my eyes as I type this paragraph, I feel very privileged just to know her and experience the world through her eyes.
Since the day she came home from the hospital back in December of 1997, my daughter Lana had the typical autism traits; though I didn’t know it at the time. When she wasn’t feeding or sleeping, she cried and cried and cried. My family and friends suggested to me that she had colic, which seems to be the “go to” answer when your newborn cries all the time. But my intuition told me that this was not the case for Lana; though I admit I had no idea what the true answer was.
I tried any and all ideas to help calm her from her distress, including running the vacuum after hearing that the hum is supposed to work some kind of magic for calming babies. My “magic” came in a puff of smoke and burnt motor smell wafting through the house with a baby still crying (Yes, I killed a vacuum cleaner). The only cure for the crying was holding Lana in my arms and sitting with her in a rocking chair. Many, many hours during her first year we rocked in that chair with me praying and wishing for her next nap time so I could finally have a break from her. My goal became just getting through her waking hours, so I could put her back in her crib.
Her crying lessened in stages. When she began crawling, the crying began to lighten up. The same happened when she began walking. As she began to gain her own independence, her mood gradually began to turn away from the constant crankiness to more happiness.
But, there were other things that became unsettling. Lana did not respond to my voice or her name being called like many babies do. I could talk to her and she seemed to look through me as if I wasn’t there. She rarely made eye contact when being spoken or read to, and if she did, it was by total accident.
Her inability to communicate encouraged many meltdowns for her and me. There was absolutely no way to know what her problem was or what her needs were when that meltdown ensued. All I could do was tolerate the screaming and literally wait for the storm to pass. Sometimes these meltdowns lasted only five minutes, but that was unusual. Most of them lasted anywhere from 30 minutes to an hour. Feeling overwhelmed and broken, there were many times where I laid like a lump on the floor sobbing with stress, having a meltdown of my own.
Lana also lacked in the speech department. She didn’t imitate sounds or talking, and honestly to this day, I don’t know what her first word really was. She seemed to speak in her own language. The only way she could communicate was to point to what she wanted or needed.
When she was in her early twos, she was examined by a neurologist. I received a three-page review of her testing and in the final paragraph the word “autism” appeared. Autism? I had never even heard of it before. I immediately got online to see what I could learn. As I became more familiar about autism, I realized that nearly every single trait applied to Lana.
It may seem like an opposite reaction, but I felt relief. I finally had a direction to go. There was no more mystery behind her. Though nothing had really changed, no problem had been fixed, and nothing was easier, just knowing what I was dealing with brought me a little bit of comfort.
My now ex-husband, on the other hand, had a very difficult time accepting the news. He couldn’t believe that something like this could happen to him. “What did I do to deserve this?” were his thoughts. “How could this happen to me?” His attitude left me feeling very frustrated … this was OUR child and all he could do was think of himself and his embarrassment of having a “less than perfect” child.
His denial last for many years, which ultimately left me feeling very “alone on an island.” I felt that the weight of raising an autistic daughter was mine and mine alone to shoulder. And I was okay with that.
Over the years, Lana has progressed and has become a very happy teenager;
though socially she is still around three to four years old. She has not
outgrown her meltdowns, but they are much rarer these days and often seem to
coincide with her PMS. She is gaining more and more independence with
each passing day. She can now cook her favorite French fries in the oven
and knows how to use oven mitts to take them out, which is a huge
accomplishment. Because of her light touch, she still needs assistance
with things like washing her hair and bathing, which we are always working on. Though she is independent in our home, will she ever be truly independent? That’s a question I don’t have an answer for. She is my daughter and I love her dearly, more than I could ever express in words. I know that it is my mission in life to help her grow and, more importantly, be happy and enjoy her life. I admire the way that she can experience life with no regrets, no judgment, and not caring about what others think. She is totally in her own element and is free. And with tears in my eyes as I type this paragraph, I feel very privileged just to know her and experience the world through her eyes.
By Kristen Lee Curtis
