When Abigail was still a tiny baby and then a toddler, we could hide her delays and eventually her autism. Those close to us knew that she had major delays and autism but the general public did not or so we thought. One day when I had to take Abigail to urgent care for yet another ear infection, I was called out on my deceptions.
Abigail was about three years old. She obviously had huge delays. She only ate pureed foods, was not potty-trained, did not communicate in any form, was completely non-verbal, and had major tantrums for no apparent reason. Still, I thought the general public could not tell that it was autism that did this to her.
As the nurse took her vitals, the nurse looked at me and said, "She has autism, doesn't she?" I said, "Yes". But in my mind I was wondering how in the world she was able to diagnose this in my child. The nurse says, "My friend has a son with autism and he has that same look in his eyes". I know the look she is describing.
The look is a blankness. The eyes have a lack of focus to them. The eyes look over you, not at you. There is not a stare, but a glance. It is a sense of I am here in this room with you, but not present in what you are doing. I knew the look all too well. I had been living with the look for almost all of her three years of life.
I remember coming home and being mad and sad and a feeling of being caught in a lie. I came home and told my husband, "Can you believe she knew Abigail had autism just from looking at her for a couple of minutes?" My husband looked at me like I was crazy and said, "She does have autism, so what is the problem?"
It was my problem because I did not want others to judge her abilities because she had autism. I did not want others to give me the sympathy look when they saw us together. I did not want the general public to be able to know she was not the "typical" child. I wanted to protect her from any strange looks, rude comments, basically anything or anyone that could possibly hurt her an any way.
As she has gotten older, I realize I can not do that. There are going to be comments, stares, and criticism. I now am able to tell others she has autism before the stares and comments come. I am not embarrassed or ashamed of that label. I, like all parents with kids with autism, wish she did not have that label but it is our truth. We can not hide from the truth or pretend the truth does not exist. I state very clearly, happily, and proudly...My daughter has autism. She is an amazing little girl who constantly surprises me with her abilities.
For those of you who do not know much about autism, I urge you to research it. We are out there in your communities and our children are in your schools. We only want acceptance and understanding from you. We want the same things you want for your children. We want happiness, friendship, love, and support for our children. We don't want you to feel sorry for us, just be there for us.
My daughter has made me grow in so many ways. She taught me that her diagnosis and label was not the definition of her life. She has made me stronger, wiser, and a lot more patient. She has made me fight harder for what she deserves and to stop and smell the roses. I wish this self revelation on all parents but especially all of the moms and dads with special needs children.
Tuesday, June 21, 2011
Thursday, June 9, 2011
Old Memories
Yesterday, I stumbled upon some old videotapes from Abigail's first two years. I had stuck them away in the closet because I could not watch them anymore. I could not see the baby who I had such high hopes for turn into the toddler who has severe autism. I could not watch these because everytime I watched them, I was reminded of her disability. A look in the eyes, a lack of speech and attention, the repetitive play, and the outbursts all just shout autism to me. So I stuck the tapes away and wondered if I ever would be able to view these again.
I guess yesterday I felt strong enough to view them. I started with Abigail's birth. What a gift I was given almost five years ago. I really did not know what I was doing with her or where our future together would lead us. She was just my precious little girl who I loved more than any other thing in my life ever. I wanted the best for her. I would do anything to make her life as good as it could possibly be. I loved holding her, rocking her, singing to her. I just was so in love with this little creature and the moment she came into my life, I felt a completeness that I had never had before. So many memories on that first tape. A time in our lives that was really peaceful. No delays, diagnosis, or therapies to deal with. It was just us....our family of three.
The next set of tapes revolved around her first birthday. She had some serious delays by this time. She did have a couple words and was babbling. She had full fledged sensory issues that were pretty evident as she was forced to touch tissue paper and cake. I did not realize it then how severe her behaviors were. I guess I was in denial because looking back at the tape now, it is clear to see. Sometimes, life is too hard to face and a little denial for a little while helps you deal with each new day. This tape was full of that same blank look in her eyes as we see today. It was full of a little baby that did not want to be surrounded by people. She wanted to be alone. I wish I could have seen her with my eyes wide open then. She had clear cut signs of autism. Looking back, I think we probably did see it but couldn't or didn't want to admit it.
Our next round of tapes were taken shortly before our daughter Audrey was born. Abigail was around 15 months old. She was playing a game of basketball with daddy while I filmed. After one basket, she came over to me and said, "I did it". It was the last phrase she would say. There have been no consistent words since. She went silent shortly after this video was shot. No babbling, no sounds at all. I remember being devastated that she lost words. I remember the anxiety and worry as every month went by without any words. As I sat watching this video, I wondered, "Is this the last time I will hear her talk?" I would literally do anything to hear that sweet voice say any word. She was not only talking in this video but also playing a game with us. She wanted us involved in her play. I miss that. Once in a while, she will let us into her world. But it is few and far between. I miss my little girl that babbled, called for daddy, and let me play with her. I can only hope now that eventually she will return.
The last video took place around the time Abigail turned two. One look at her and anyone could tell the autism was taking over. She was silent. She sat in a corner looking at a book backwards and rocked. She did not play appropriately and wanted to be left alone. She would throw major tantrums. Not the typical two year tantrums either. She would meltdown without warning and it could last up to four hours. She did not want to be around her sister Audrey who was then about 5 months old. She would stare at the TV for hours without attempting to let you into her world. It was a very hard time. She had been diagnosed a few months earlier and it was a dark time in my life. I was trying to figure out how and if I would be able to parent a special needs child while still giving her baby sister the life she deserved.
Looking back at these tapes, I see the love I have for that child in my eyes, in good times and bad. I see how much I really enjoyed being home with Abigail for that first year before the signs of autism appeared. I see how hard her behaviors were two to three years ago and how far she has come. I see how far I have come. Being able to watch these tapes is a huge step for me. I have accepted Abigail in every way. My first born has taught me a lot about myself and how to parent my other children. I love this little girl with all my heart, always have and always will. Thank you Abigail for letting me come along for the ride.
I guess yesterday I felt strong enough to view them. I started with Abigail's birth. What a gift I was given almost five years ago. I really did not know what I was doing with her or where our future together would lead us. She was just my precious little girl who I loved more than any other thing in my life ever. I wanted the best for her. I would do anything to make her life as good as it could possibly be. I loved holding her, rocking her, singing to her. I just was so in love with this little creature and the moment she came into my life, I felt a completeness that I had never had before. So many memories on that first tape. A time in our lives that was really peaceful. No delays, diagnosis, or therapies to deal with. It was just us....our family of three.
The next set of tapes revolved around her first birthday. She had some serious delays by this time. She did have a couple words and was babbling. She had full fledged sensory issues that were pretty evident as she was forced to touch tissue paper and cake. I did not realize it then how severe her behaviors were. I guess I was in denial because looking back at the tape now, it is clear to see. Sometimes, life is too hard to face and a little denial for a little while helps you deal with each new day. This tape was full of that same blank look in her eyes as we see today. It was full of a little baby that did not want to be surrounded by people. She wanted to be alone. I wish I could have seen her with my eyes wide open then. She had clear cut signs of autism. Looking back, I think we probably did see it but couldn't or didn't want to admit it.
Our next round of tapes were taken shortly before our daughter Audrey was born. Abigail was around 15 months old. She was playing a game of basketball with daddy while I filmed. After one basket, she came over to me and said, "I did it". It was the last phrase she would say. There have been no consistent words since. She went silent shortly after this video was shot. No babbling, no sounds at all. I remember being devastated that she lost words. I remember the anxiety and worry as every month went by without any words. As I sat watching this video, I wondered, "Is this the last time I will hear her talk?" I would literally do anything to hear that sweet voice say any word. She was not only talking in this video but also playing a game with us. She wanted us involved in her play. I miss that. Once in a while, she will let us into her world. But it is few and far between. I miss my little girl that babbled, called for daddy, and let me play with her. I can only hope now that eventually she will return.
The last video took place around the time Abigail turned two. One look at her and anyone could tell the autism was taking over. She was silent. She sat in a corner looking at a book backwards and rocked. She did not play appropriately and wanted to be left alone. She would throw major tantrums. Not the typical two year tantrums either. She would meltdown without warning and it could last up to four hours. She did not want to be around her sister Audrey who was then about 5 months old. She would stare at the TV for hours without attempting to let you into her world. It was a very hard time. She had been diagnosed a few months earlier and it was a dark time in my life. I was trying to figure out how and if I would be able to parent a special needs child while still giving her baby sister the life she deserved.
Looking back at these tapes, I see the love I have for that child in my eyes, in good times and bad. I see how much I really enjoyed being home with Abigail for that first year before the signs of autism appeared. I see how hard her behaviors were two to three years ago and how far she has come. I see how far I have come. Being able to watch these tapes is a huge step for me. I have accepted Abigail in every way. My first born has taught me a lot about myself and how to parent my other children. I love this little girl with all my heart, always have and always will. Thank you Abigail for letting me come along for the ride.
Monday, June 6, 2011
Another Year Bites the Dust
Curly just finished up her second year of pre-k. One more year and she will be off to kindergarten. Obviously, I know it will not be the kindergarten class I once envisioned for her but nonetheless a big girl, kindergarten class. On the last day of pre-k, I looked around at Curly's home away from home, and saw how much all of the kids have grown. They are all more independent, more well behaved, and a whole lot happier in their own skins. I am amazed how much smarter they all were after this one year of school. Abigail's fantastic teacher gave us a disc with pictures on it of the kids throughout the year. I saw a curly headed little girl who was still very much a baby turn into a young girl who really came into her own in a short nine month period.
Abigail came into this school year in a bad way. She had developed a biting issue over the summer and also developed quite difficult mood swings. She would meltdown all day, every day. She was and is nonverbal and did not know how to tell us what was bothering her. Imagine what it would be like if you were upset and needed help, but had no way of telling anyone what was wrong? She was just so frustrated. It was heartbreaking to see my baby withdraw further from us and to see her become someone that we did not even know.
A typical day in our house started with a happy, smiling curly. At any moment, she would start to scream, throw things, pinch herself, pull her hair, throw herself on the floor or bed and cry and scream until she could not catch her breath and at times, throw up. This happened, some days, five to eight times a day. Sometimes, we might only have one or two meltdowns. Her meltdowns could last anywhere from 10 minutes to four hours. The meltdowns controlled our lives. It controlled every aspect of our home life. We, as parents, were exhausted, confused, and heartbroken for Curly and our other children.
With the help of therapists, teachers, psychologists, and finally developmental pediatricians, we found some answers. We were told that we were not alone. A lot of children with more severe autism, have these mood swings. The professionals guided us to get her the help she needed. Controversial or not, we chose medicine to help with the mood swings. If you don't believe in children taking medicine, all I can say is this. You were not in my home. You did not see how this was affecting every member of my family. You can not judge our decisions until you are placed in this situation.
Much to our delight, Abigail responded well to medication. She had no side effects and her moods stabilized. The meltdowns went from an everyday thing to a couple times a week thing. Now the mood swings are a couple times a month. Our other children are not scared of Abigail any more. Abigail has improved at school. She is happier and back to the smiling little girl that we have always loved.
Towards the end of the school year, she started to have more focus with her task work and she participated in circle time more. She returned to the happy toddler we thought had left us back in the fall. She had enough focus to improve her joint attention and became a lot more social with my husband and I and her sisters. We feel like we have Abigail back. She looks at us, smiles at us. She comes to us when she needs something. She will play alongside her sisters. She kisses and hugs us. She lets us get close to her and become a part of her world.
We are delighted with her progress. She still has good days and bad days. I believe she probably always will. The good days so outnumber the bad ones these days. Our girl is happy and healthy (for the most part), and that is all I could ever really hope for.
The next school year will be here before we know it. This next year will be about her next transition. She will be ready to go on and by then hopefully, her daddy and I will be too.
Abigail came into this school year in a bad way. She had developed a biting issue over the summer and also developed quite difficult mood swings. She would meltdown all day, every day. She was and is nonverbal and did not know how to tell us what was bothering her. Imagine what it would be like if you were upset and needed help, but had no way of telling anyone what was wrong? She was just so frustrated. It was heartbreaking to see my baby withdraw further from us and to see her become someone that we did not even know.
A typical day in our house started with a happy, smiling curly. At any moment, she would start to scream, throw things, pinch herself, pull her hair, throw herself on the floor or bed and cry and scream until she could not catch her breath and at times, throw up. This happened, some days, five to eight times a day. Sometimes, we might only have one or two meltdowns. Her meltdowns could last anywhere from 10 minutes to four hours. The meltdowns controlled our lives. It controlled every aspect of our home life. We, as parents, were exhausted, confused, and heartbroken for Curly and our other children.
With the help of therapists, teachers, psychologists, and finally developmental pediatricians, we found some answers. We were told that we were not alone. A lot of children with more severe autism, have these mood swings. The professionals guided us to get her the help she needed. Controversial or not, we chose medicine to help with the mood swings. If you don't believe in children taking medicine, all I can say is this. You were not in my home. You did not see how this was affecting every member of my family. You can not judge our decisions until you are placed in this situation.
Much to our delight, Abigail responded well to medication. She had no side effects and her moods stabilized. The meltdowns went from an everyday thing to a couple times a week thing. Now the mood swings are a couple times a month. Our other children are not scared of Abigail any more. Abigail has improved at school. She is happier and back to the smiling little girl that we have always loved.
Towards the end of the school year, she started to have more focus with her task work and she participated in circle time more. She returned to the happy toddler we thought had left us back in the fall. She had enough focus to improve her joint attention and became a lot more social with my husband and I and her sisters. We feel like we have Abigail back. She looks at us, smiles at us. She comes to us when she needs something. She will play alongside her sisters. She kisses and hugs us. She lets us get close to her and become a part of her world.
We are delighted with her progress. She still has good days and bad days. I believe she probably always will. The good days so outnumber the bad ones these days. Our girl is happy and healthy (for the most part), and that is all I could ever really hope for.
The next school year will be here before we know it. This next year will be about her next transition. She will be ready to go on and by then hopefully, her daddy and I will be too.
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