April is autism awareness month. So in honor of that, and to help spread more awareness of this disability, all of my blogs this month will be related to autism and Ashley. Unless you too have a child with autism, you have no idea how this can impact a child, and thus a family’s life. Autism is a devastating disability that is becoming increasingly more common every year. I’m not going to bother to define autism because if you are reading this blog, you are probably already aware of the definition. If you have stumbled upon this blog by accident, and would like to learn more facts about autism, you can visit my website for more information –
http://www.createdinhisimage.net/. I’m going to focus on the emotions of and the realities of autism, as it has impacted my family. There are so many things people just don’t understand. For the most part, I try to keep this blog very positive. But for you to be truly aware of autism, I have to be honest and real. A lot of autism is unpleasant, stressful, and heartbreaking. I love my daughter, Ashley, more than life itself. She is beautiful, smart, and funny, but she will never reach her true potential, and most things in this life are out of her reach because she is so severely affected by autism. That doesn’t mean we have stopped trying, working, or hoping that is just reality, as it stands today. Ashley works hard every day to just get through the day. She was an amazing, delightful, happy baby, but today she suffers greatly as a result of autism. For today, here are just some basic facts about what autism has done to Ashley and our family.
Ashley cannot speak. She uses a computerized device to get her wants and needs across to those around her. We hope that one day she will speak on her own, or will become more proficient with her device, but as of now at age 12, she cannot converse with us.
Ashley bites herself and bangs her head. She has a callous on one hand from the continuous biting. The other one is permanently swollen from her banging her head against it. This behavior has improved over the years. She used to make her head and hand bloody through the continuous self-injury.
Ashley has no friends or social encounters. She does not get invited to people’s homes or kid’s parties. Hailey’s friends consider Ashley their friend too, but it is out of kindness, not true friendship.
A lot of times our family does not get invited to things because people are uncomfortable around Ashley. Sometimes we choose to stay home from social events because it is too hard or uncomfortable to go with Ashley.
Ashley sometimes wanders away because she doesn’t understand that she can’t. We live in a constant state of – Where is Ashley? We have to know exactly where she is at all times. We rarely go more than a few minutes without seeing her, or going to see what she is doing.
Ashley can be very destructive and make huge messes because she just doesn’t understand what is wrong with what she is doing. As a result, all of our food cabinets and refrigerators are locked. If someone leaves them unlocked, she may pour out containers of food or drink, or attempt to get something and make a huge mess. I cannot even begin to describe the messes she has made, that could be a blog all on its own.
Ashley still needs assistance in almost all areas of her life- dressing, bathing, cleaning up things. She is, for the most part, independent in toileting and eating.
Ashley does not sleep well, and she never has. She typically only sleeps 3-5 hours a night. The last few weeks, she has been going to sleep between 9 and midnight, and getting up between 1 A.M. and 4 A.M. Evidently, she is not tired, but Jason and I are exhausted, permanently.
These are just a few details about Ashley and our family, and how autism has changed life for us. What I'm not supposed to say because it is considered wrong, complaining, or politically incorrect is - Autism is a terrible thing that I wouldn't wish on any child or parent. It is really hard and painful for everyone involved. Don’t get me wrong – I love my life and my children, but we have made many adjustments and sacrifices. Every now and then I think about what are lives might be like without autism. We would not have to worry and protect so much. We would all get to sleep. We could do more things as a family, instead of taking turns taking care of Ashley. And most of all, Ashley would have a chance to live a life like other children and not be suffering. It would make a lot of things different and easier, but it would not make us love her any more than we do today.
Like us on Facebook
Originally posted April 2012
April is autism awareness month. So in honor of that, and to help spread more awareness of this disability, all of my blogs this month will be related to autism and Ashley. Unless you too have a child with autism, you have no idea how this can impact a child, and thus a family’s life. Autism is a devastating disability that is becoming increasingly more common every year. I’m not going to bother to define autism because if you are reading this blog, you are probably already aware of the definition. If you have stumbled upon this blog by accident, and would like to learn more facts about autism, you can visit my website for more information – http://www.createdinhisimage.net/. I’m going to focus on the emotions of and the realities of autism, as it has impacted my family. There are so many things people just don’t understand. For the most part, I try to keep this blog very positive. But for you to be truly aware of autism, I have to be honest and real. A lot of autism is unpleasant, stressful, and heartbreaking. I love my daughter, Ashley, more than life itself. She is beautiful, smart, and funny, but she will never reach her true potential, and most things in this life are out of her reach because she is so severely affected by autism. That doesn’t mean we have stopped trying, working, or hoping that is just reality, as it stands today. Ashley works hard every day to just get through the day. She was an amazing, delightful, happy baby, but today she suffers greatly as a result of autism. For today, here are just some basic facts about what autism has done to Ashley and our family.
Ashley cannot speak. She uses a computerized device to get her wants and needs across to those around her. We hope that one day she will speak on her own, or will become more proficient with her device, but as of now at age 12, she cannot converse with us.
Ashley bites herself and bangs her head. She has a callous on one hand from the continuous biting. The other one is permanently swollen from her banging her head against it. This behavior has improved over the years. She used to make her head and hand bloody through the continuous self-injury.
Ashley has no friends or social encounters. She does not get invited to people’s homes or kid’s parties. Hailey’s friends consider Ashley their friend too, but it is out of kindness, not true friendship.
A lot of times our family does not get invited to things because people are uncomfortable around Ashley. Sometimes we choose to stay home from social events because it is too hard or uncomfortable to go with Ashley.
Ashley sometimes wanders away because she doesn’t understand that she can’t. We live in a constant state of – Where is Ashley? We have to know exactly where she is at all times. We rarely go more than a few minutes without seeing her, or going to see what she is doing.
Ashley can be very destructive and make huge messes because she just doesn’t understand what is wrong with what she is doing. As a result, all of our food cabinets and refrigerators are locked. If someone leaves them unlocked, she may pour out containers of food or drink, or attempt to get something and make a huge mess. I cannot even begin to describe the messes she has made, that could be a blog all on its own.
Ashley still needs assistance in almost all areas of her life- dressing, bathing, cleaning up things. She is, for the most part, independent in toileting and eating.
Ashley does not sleep well, and she never has. She typically only sleeps 3-5 hours a night. The last few weeks, she has been going to sleep between 9 and midnight, and getting up between 1 A.M. and 4 A.M. Evidently, she is not tired, but Jason and I are exhausted, permanently.
These are just a few details about Ashley and our family, and how autism has changed life for us. What I'm not supposed to say because it is considered wrong, complaining, or politically incorrect is - Autism is a terrible thing that I wouldn't wish on any child or parent. It is really hard and painful for everyone involved. Don’t get me wrong – I love my life and my children, but we have made many adjustments and sacrifices. Every now and then I think about what are lives might be like without autism. We would not have to worry and protect so much. We would all get to sleep. We could do more things as a family, instead of taking turns taking care of Ashley. And most of all, Ashley would have a chance to live a life like other children and not be suffering. It would make a lot of things different and easier, but it would not make us love her any more than we do today.
Like us on Facebook
No comments:
Post a Comment