My Journey with Autism
By Crystal Frost, Chair, Oklahoma Walk Now for Autism
Editor's note: The opinions expressed herein are those of the author exclusively.
By Crystal Frost, Chair, Oklahoma Walk Now for Autism
Editor's note: The opinions expressed herein are those of the author exclusively.
My name is Crystal Frost and I am a mother of three kids, Mason, 13, Madison, 11 and Spencer, 3 ½. My youngest son, Spencer, was diagnosed with autism on March 31, 2006. As many know, hearing those words was devastating.
My journey so far with autism has been hard, but overall has been somewhat positive.
When Spencer was born he almost immediately starting having problems with his ears. By the time he was 9 months old; he had already had 3 ear infections and never slept. He would sleep maybe two hours and then be up for 2 days. This was my first time to have an infant as Mason and Madison are my stepchildren. (I married their father when they were two and four.) So when Spencer was going through all of these things I had nothing with which to compare it. My husband of course had some knowledge of babies and knew something was not right. We went for another year with no sleep and even more ear infections. This eventually took a toll on my marriage and when Spencer was just over a year old, Eric and I split up.
Spencer continued to have many different signs of autism, but I was still unaware of what autism was. Eric's mother was the first to bring up that Spencer did not look at anyone in the face. As a first-time mother of an infant, I did not know this was not typical. The summer went on and Spencer began to act out, hitting his head on the floor, flapping his hands, and Eric and I decided that as parents it was time to do something more. We knew something was wrong and we knew that we owed it not only to Spencer, but to our other children, to work out our differences and become a family again.
Spencer was a long awaited baby. We underwent fertility treatments to have him and after 3 long years, he finally arrived. When he did, Eric, Mason, Madison and I were so happy and blessed that he was joining our family. So when Eric and I got back together to make the family whole again, it was a happy time for us all. The most amazing part of my story is that Mason and Madison are the best brother and sister that Spencer could ever have. They are so supportive of Spencer and they never complain if we have to leave early from a fun event due to Spencer's melt downs; they only help. The love that those two show Spencer is priceless. They help him on a daily basis and what a blessing they have been to my husband, Spencer and me.
In the middle of Spencer's six month evaluation we discovered Autism Speaks. My mother-in-law saw Suzanne Wright on The View and called and told me to turn it on. I watched the show and right after went to the Autism Speaks website. It was amazing; it had resources, signs for us to look for, and much more information that was so helpful to my family. I soon after stumbled upon the link to the Walk Now for Autism program and saw that there currently wasn't one set up yet in Oklahoma. So, I contacted Autism Speaks they sent me the information on how to start a walk. “What a job!” I thought at first, but then there was something in me pushing me to do this. So as a family we began our journey with the walk. It took us 11 months to plan and in that planning we met some of the most amazing people who were not only willing to help with the walk, but help us in our personal walk with autism. Our family members, friends, co-workers and neighbors, all became the force behind our passion. One year to the day that Spencer was diagnosed we had our first walk in Oklahoma and it was a great success.
My journey with autism so far as been a roller coaster, some good days, some bad days, some really bad days and then more good days. I think that my journey so far with Spencer, autism and all of those affected by autism that I have come to know, has been an eye opener in my life. Of course I wish that Spencer did not have autism, but the fact is that he does, so I could either choose to be angry and bitter, which for about 8 months of my life I was, or I could choose to love those that love me and embrace this thing called autism and do something about it. So that is what I have done. My journey so far has taught me to be stronger, wiser, more compassionate, and more understanding of others and myself. It also has provided me with a community of lifelong friends and advocates who hold our hands when we need them to, listen when we need them to, and fight for us when we need them to. Autism is a journey that hurts and is hard, but to know that I have people in my corner from all over the world really makes a difference to me.
My journey so far with autism has been hard, but overall has been somewhat positive.
When Spencer was born he almost immediately starting having problems with his ears. By the time he was 9 months old; he had already had 3 ear infections and never slept. He would sleep maybe two hours and then be up for 2 days. This was my first time to have an infant as Mason and Madison are my stepchildren. (I married their father when they were two and four.) So when Spencer was going through all of these things I had nothing with which to compare it. My husband of course had some knowledge of babies and knew something was not right. We went for another year with no sleep and even more ear infections. This eventually took a toll on my marriage and when Spencer was just over a year old, Eric and I split up.
Spencer continued to have many different signs of autism, but I was still unaware of what autism was. Eric's mother was the first to bring up that Spencer did not look at anyone in the face. As a first-time mother of an infant, I did not know this was not typical. The summer went on and Spencer began to act out, hitting his head on the floor, flapping his hands, and Eric and I decided that as parents it was time to do something more. We knew something was wrong and we knew that we owed it not only to Spencer, but to our other children, to work out our differences and become a family again.
Spencer was a long awaited baby. We underwent fertility treatments to have him and after 3 long years, he finally arrived. When he did, Eric, Mason, Madison and I were so happy and blessed that he was joining our family. So when Eric and I got back together to make the family whole again, it was a happy time for us all. The most amazing part of my story is that Mason and Madison are the best brother and sister that Spencer could ever have. They are so supportive of Spencer and they never complain if we have to leave early from a fun event due to Spencer's melt downs; they only help. The love that those two show Spencer is priceless. They help him on a daily basis and what a blessing they have been to my husband, Spencer and me.
In the middle of Spencer's six month evaluation we discovered Autism Speaks. My mother-in-law saw Suzanne Wright on The View and called and told me to turn it on. I watched the show and right after went to the Autism Speaks website. It was amazing; it had resources, signs for us to look for, and much more information that was so helpful to my family. I soon after stumbled upon the link to the Walk Now for Autism program and saw that there currently wasn't one set up yet in Oklahoma. So, I contacted Autism Speaks they sent me the information on how to start a walk. “What a job!” I thought at first, but then there was something in me pushing me to do this. So as a family we began our journey with the walk. It took us 11 months to plan and in that planning we met some of the most amazing people who were not only willing to help with the walk, but help us in our personal walk with autism. Our family members, friends, co-workers and neighbors, all became the force behind our passion. One year to the day that Spencer was diagnosed we had our first walk in Oklahoma and it was a great success.
My journey with autism so far as been a roller coaster, some good days, some bad days, some really bad days and then more good days. I think that my journey so far with Spencer, autism and all of those affected by autism that I have come to know, has been an eye opener in my life. Of course I wish that Spencer did not have autism, but the fact is that he does, so I could either choose to be angry and bitter, which for about 8 months of my life I was, or I could choose to love those that love me and embrace this thing called autism and do something about it. So that is what I have done. My journey so far has taught me to be stronger, wiser, more compassionate, and more understanding of others and myself. It also has provided me with a community of lifelong friends and advocates who hold our hands when we need them to, listen when we need them to, and fight for us when we need them to. Autism is a journey that hurts and is hard, but to know that I have people in my corner from all over the world really makes a difference to me.
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