“WIPE!” Its 4 a.m. in the morning and our daughter kicks the door to our bedroom open and yells that one word at us. There Dayna stood in the hallway of the condo we vacation in, no pants on and covered in her own poop. It was all over her hands and legs, she had gone to the bathroom by herself and this was the result. From sleep to a well-oiled machine in seconds, Deb and I are up. One is getting the bath ready and removing Dayna’s clothes. The other getting new clothes ready, placing the dirty clothes in the wash and starting to clean the bathroom. We’ve been here before, more times than we can remember. Forty minutes later Dayna is back in her room playing on her iPad, Deb and I are back to bed. Everything is clean and back under control but I can’t sleep. My head is still spinning, at 14 years old my daughter still needs help in the bathroom, still grabs poop with her own hands. She has severe autism and situations like this are starting to weigh on me more and more. I worry about what is still to come and what will become of her. Over the past few months it’s all I can think about. I’m tired, I’m feeling bad for myself, and I pick up my iPhone and post about my worries on Facebook. The next day I see the support in the comments from my Facebook friends and family and make a decision. Instead of venting on Facebook, I would blog about life and challenges with an autistic child. That is how this all started.
Some of you that are reading this are very aware of Dayna and her autism, others may not have even known we had an autistic child. Dayna was diagnosed with autism at two years old. For the past 12 years we have lived with the struggles, torments and triumphs that exist with a special needs child. I don’t want this to be a blog where I am complaining about how things are, rather I want to give you a view into one family’s day to day life along with the challenges and frustrations that we come across. The list of subjects I already have in mind can hopefully keep this an active site for a long time. Finances, siblings, travel, finding an appropriate doctor and toileting to name a few. Those are some of the common issues people talk about. Then there are the things that aren’t as evident to the outside world. How do you know what a child wants if they can’t communicate? Even worse, what if they are sick but can’t tell you what is wrong? Out of frustration Dayna once took a bottle of nasal spray and held it to her forehead, it was her way of letting us know she had a headache. Here’s another one near and dear to me….autistic children don’t ‘look autistic’. Dayna is a beautiful 14 year old girl, who also happens to have already developed. If you didn’t know us or the situation, how do you think it would look when her father is adjusting her boobs in her bathing suit at the beach because they are about to fall out? Or when this grown girl sits down in the middle of the sand and starts flinging it everywhere. You would think with the prevalence of autism people would be more understanding, but the glares still exist. These are the things I want to write about.
I hope that I will be able to give you a glimpse into our life, and I want to be as honest and as open as possible. This blog site is not meant to gain your pity, but to hopefully educate you through one family’s daily life with autism. How often I post is still to be determined, but when I do I will put the link on Facebook. If I fall behind or haven’t posted in a while, feel free to call me out publicly on Facebook as well!