My daughter has two beautiful, smart sisters. They are young and wiser than I ever imagined. Audrey is now 2 1/2 years old and picks up on everything. Allie is 16 months old and is my loving child. Thankfully, they are both "typically developing" which is a fancy term for normal. But who decides what is normal, anyway? I used to think they were both too young to understand why Abigail acted the way she does and most certainly too young to know what autism is. Boy was I wrong.
Last summer, when Audrey was just two, she stunned me. She would take a bath with Abigail and try to wash Abigail's face. She would try to wash Abigail's hair. She would grab diapers for Abigail when she was wet or dirty. She would try to feed Abigail at the table. One day, I asked Audrey, "Why are you helping Abigail?" She said, " I help Bail (what she calls Abigail). "Bail can't." She then looked at Abigail with such love and empathy.
Audrey made me so proud that day for loving her sister and recognizing that she needs extra help. She also broke my heart that day. I do not want Audrey or Allie to feel like they have to protect Abigail or do things for her. I want them to have a normal childhood. But can they really when their older sister has autism?
It is my hope that Audrey and Allie love their sister unconditionally and understand that deep inside that little girl's mind and body, she loves them too. If they grow up with this love for Abigail and a respect for Abigail, I have done my job.
Friday, January 28, 2011
Sunday, January 23, 2011
What is Autism?
Two and a half years ago, my life changed forever. I had a 20 month old little girl named Abigail. In an hour visit from a psychologist, my dreams for her changed forever. She had autism. I had dreamt of playing dolls with her, having tea parties, seeing her grow up to go to a prom, and go away to college. I wondered what she would be like as an adult when she no longer needed us and became her own person.
On this day, the dreaded diagnosis day, I felt like all my hopes and dreams for her were shattered. My idea of "normal" was changed. Our life would forever be changed. The unknowns about her future would start to eat away at me. I had to spend the next few months dealing with the guilt I felt for her having autism. I spent the first few months blaming myself.
" What did I do to make her this way?" One day I realized, I had to change, I had to quit blaming myself, I had to move on in order to help her succeed and to keep my own sanity.
Two and half years later, I feel like autism is this big cloud over my head that sucks me up at times and devours my hope and happiness. Don't get me wrong. There are really great moments like when my then 2 year old finally drank from her sippy cup on her own or when our then 3 year old daughter used a spoon to feed herself some yogurt. But there are really bad moments too. Moments that you see your child stuck in herself trying desperatly to break free from her autism. Moments when you see rage in her eyes because she has no words or ability to express how distressed she is at that moment. Our house is full of moments of normalcy when nothing seems to be different between our home and any other house with children. We also have moments when all you have to do is look our oldest in the eye and you know we are completly different than the average american family.
Autism is beyond difficult. Every second of our day revolves around that diagnosis. Our now 4 year old Abigail is nonverbal with severe autism. She is yet to be potty-trained. She spends many a night up all night bouncing. She relies on us for almost everything. She can not totally feed herself, she can not wash herself, or tell us when she is sick or hurt. Even with all the things that autism has taken away from Abigail, my husband and I, and her sisters, life with curly (as we call her) is outstanding. There are constant struggles but I can not imagine my life without her in it.
Thank you, Curly, for letting me be your mother, for making me a better mother to you and your sisters. Thank you for letting me be your voice, your advocate, and your companion. My life was forever changed by you but life is so much sweeter because of you.
On this day, the dreaded diagnosis day, I felt like all my hopes and dreams for her were shattered. My idea of "normal" was changed. Our life would forever be changed. The unknowns about her future would start to eat away at me. I had to spend the next few months dealing with the guilt I felt for her having autism. I spent the first few months blaming myself.
" What did I do to make her this way?" One day I realized, I had to change, I had to quit blaming myself, I had to move on in order to help her succeed and to keep my own sanity.
Two and half years later, I feel like autism is this big cloud over my head that sucks me up at times and devours my hope and happiness. Don't get me wrong. There are really great moments like when my then 2 year old finally drank from her sippy cup on her own or when our then 3 year old daughter used a spoon to feed herself some yogurt. But there are really bad moments too. Moments that you see your child stuck in herself trying desperatly to break free from her autism. Moments when you see rage in her eyes because she has no words or ability to express how distressed she is at that moment. Our house is full of moments of normalcy when nothing seems to be different between our home and any other house with children. We also have moments when all you have to do is look our oldest in the eye and you know we are completly different than the average american family.
Autism is beyond difficult. Every second of our day revolves around that diagnosis. Our now 4 year old Abigail is nonverbal with severe autism. She is yet to be potty-trained. She spends many a night up all night bouncing. She relies on us for almost everything. She can not totally feed herself, she can not wash herself, or tell us when she is sick or hurt. Even with all the things that autism has taken away from Abigail, my husband and I, and her sisters, life with curly (as we call her) is outstanding. There are constant struggles but I can not imagine my life without her in it.
Thank you, Curly, for letting me be your mother, for making me a better mother to you and your sisters. Thank you for letting me be your voice, your advocate, and your companion. My life was forever changed by you but life is so much sweeter because of you.
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