April is Autism Awareness month
We've been on this autism journey for over 7 years now. Each year World Autism Awareness Day (April 2nd) has been a little different for me. Some years I was excited to share with others about autism, other years I didn't really want to talk about it, some years I wished it wasn't part of our lives. You name it, I've probably felt it. As EK gets older there are some parts of autism that get easier. Our family "normal" is pretty different from other families. Not necessarily a bad thing, it's just harder for our family to partake in some things that are easy for other family...lots of preparation (food, extra clothing, diapers), worrying about EK's safety or how she'll react, etc. Sometimes it's just easier to stay at home where everything is safe and routine. (I am trying to try new things though and having Kendall helping last summer was GREAT! I didn't feel so overwhelmed!) Some things are getting harder since she's getting bigger and stronger. If she doesn't want to go up the stairs, it's hard to carry her up there. I try really hard to keep counters clear b/c she likes to throw things at times.
Anyway, what does autism look like for our family? I don't know that I really celebrate her autism b/c while I love my daughter and would do anything for her, autism has taken away her ability to communicate, interact typically with others, and other self-help skills. She is severe on the autism spectrum. She requires us to do everything for her, from self-care to keeping out of danger. Overall she has a sweet personality and the BEST smile. She loves to be tickled and played with, even if she shows affection by hitting and pulling hair. If she's upset, I know something is wrong.
We've tried many things over the years to help our girl, not because we don't love the way she is, but because we want her to live life to the fullest. She's been gluten, dairy and egg free for 7 years now. While it was difficult at first, it's not a big deal now. (I also had Andrew free of those foods for his first 3 years of life and will do the same with Eliza.) We always have her on a good vitamin, probiotic, digestive enzyme. We change up other supplements based on testing a couple times a year. While it hasn't really helped her make progress, I do believe it helps her body function better and therefore helps her feel better. We did ABA therapy for a few years, occupational therapy (fine motor and sensory), physical therapy and speech therapy. We just started speech therapy up again and have a great therapist. She helped us get an eye gaze communication device called a TOBII. I'm praying it'll help EK gain more independence as she learns to use it to make choices and communicate.
EK may have autism but it's not what defines her. She is our daughter who we love tremendously. Different, not less.
Anyway, what does autism look like for our family? I don't know that I really celebrate her autism b/c while I love my daughter and would do anything for her, autism has taken away her ability to communicate, interact typically with others, and other self-help skills. She is severe on the autism spectrum. She requires us to do everything for her, from self-care to keeping out of danger. Overall she has a sweet personality and the BEST smile. She loves to be tickled and played with, even if she shows affection by hitting and pulling hair. If she's upset, I know something is wrong.
We've tried many things over the years to help our girl, not because we don't love the way she is, but because we want her to live life to the fullest. She's been gluten, dairy and egg free for 7 years now. While it was difficult at first, it's not a big deal now. (I also had Andrew free of those foods for his first 3 years of life and will do the same with Eliza.) We always have her on a good vitamin, probiotic, digestive enzyme. We change up other supplements based on testing a couple times a year. While it hasn't really helped her make progress, I do believe it helps her body function better and therefore helps her feel better. We did ABA therapy for a few years, occupational therapy (fine motor and sensory), physical therapy and speech therapy. We just started speech therapy up again and have a great therapist. She helped us get an eye gaze communication device called a TOBII. I'm praying it'll help EK gain more independence as she learns to use it to make choices and communicate.
EK may have autism but it's not what defines her. She is our daughter who we love tremendously. Different, not less.
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