There could be many words that fit this description. But for my family the “A” word for today is Autism. Harrison and I decided that we would see how long we could go without saying the word autism in one day. After two hours we knew it wasn’t going to work. He said we would be millionaires for sure if we put a $1.00 in a jar every time we said the word autism. And I think he is correct.
I just want one day where we don’t think, eat and breathe autism. It is not because I am ashamed or embarrassed by Sydney and autism. I would like one day where I am not on the phone with a doctor, not creating a social story, not creating a different schedule because of a change in plans, not witnessing a meltdown, and the list goes on.
There are many days that I feel like I have to prioritize what I battle each day. Will my focus be on her social skills, sensory issues, or reading or her writing? Oh yeah I forgot about Harrison and his needs. Honestly, I feel overwhelmed all of the time because I am constantly reading, researching bringing Sydney into our world. I don’t know what it is like to sit down and relax. I am always on the go. Because silence in my house is not golden. I am reading over her IEP and going over her updates making sure that everything is being followed as stated in her IEP. My full-time job is a priority that I take seriously, can’t forget about that. I am working with Harrison on his assignments and googling how to do the math. Because I know that is an area that is a weakness for him. But where do I fit into the list? See as a mom sometimes we don’t. That’s called sacrifice. I have learned to carve out time for myself. Sometimes I want to do things with friends and other times I just need to be alone and out of the house.
I look for ways to find autism friendly events that don’t happen after 6:00 pm so we can attend. I I must stop coordinating four appointments in one day at the hospital so that I don’t have to miss more than one day from work. Oh, but the guilt of missing work stresses me. I have learned that four appointments in one day is brutal for Sydney and for me as well.
I want one day where I don’t have to list her medications or tell you how long her seizure lasted, and tell you what medication she is allergic to. I don’t want to say the “A” word today. Just 24 hours not to be normal because I am really not sure what normal is. I want one day to know what it is like to sleep for 8 hours straight and feel refreshed when I wake up. I want one day to go to church and actually listen to the sermon without making sure her headphones are okay and I have the personal hotspot for the wi-fi working. I want to actually stay for the entire service and not be on the edge of my seat.
I want one day to not have to explain autism, and echolalia and tell people that we don’t say the “R” word anymore either. These things may seem like nonsense to you. But it would be an escape for me. Just one day is all I need, then I will be back on track. Stronger than ever. The “A” word won’t kill. You see I won’t let it. I won’t let if keep me depressed, having a pity party, secluding myself from family and friends. The “A” word won’t stop me from living each day of my life and enjoying my two beautiful blessings from God. The”A” word is allowing me to walk by faith and not by sight. It forces me to trust God more than I have ever had to trust Him before. The “A” word is not a punishment.
The “A” word is a blessing. Would I have met so many new friends if it weren’t for autism? Probably not. I guess saying the “A” word everyday isn’t so bad after all.