So, this weekend, I went home to help my mom with taking care of Sammy. Sammy's hospital bed is in the living room right now and my mom sleeps on the couch next to him. I volunteered to sleep on the couch for Friday and Saturday night so she would have the chance to sleep in her bed, for at least 2 night of the 4-6 week recovery. Sammy is doing really well with his recovery, however, about 2 times a day, he gets VERY upset. He cries with tears and audibly. i know it must sound weird that I'm explaining how he's crying, but the boy hasn't cried since he was little. It is SO SAD. He puckers his lips, gets all red, and balls his eyes out. When this happens, you have to drop everything to help him. The whole time he wants you to rub his head so there is obviously some pain or discomfort going on there. You can tell it must be pretty painful, because he bends our fingers backwards and scratches us in the attempt to pull us closer. I want to just die when he starts crying -- I hate seeing anyone unhappy, but Sammy being sad is the most devastating thing ever.
Sammy is getting better with standing and walking around, although he is still pretty wobbly and dizzy. He sits at the table to eat and was even able to go out with us to dinner this weekend! Although, there was a melt down. He did great the entire dinner and then became upset and starting pulling on my mom and me and biting his hands. First my mom tried to take him for a little walk while I finished dinner, but he just got more upset. It eventually ended up with me sitting with him in the car while my mom finished her dinner.
What's going on in his head? What does he understand? We "assume" he understands and try to explain to him that the pain is only temporary and everything will be fine. But what if he's thinking -- "what the hell?!?! I was up a week ago doing whatever I wanted and now I'm stuck in bed all day!?" I mean, if I didn't understand that and I woke up like this, I'd be pretty depressed. Can you imagine if you went to bed tonight after exercising, getting your own food, being able to walk around the house, bending over to pick something you dropped... and then tomorrow, you woke up and were stiff, sore, and couldn't get up from your bed without someone guiding you? Then, I wonder, is that what he's crying for?
I cannot even imagine what its like for him or my mom. I adore my mom for all of her efforts and dedication she has put towards Sammy and his recovery. She spends her entire day catering to him, giving him medicine, not sleeping, listening to the same songs over and over, watching the same episodes of Spongebob, making sure he gets enough to eat, checking to make sure he doesn't have accidents, bathing him, etc. I don't know how she's doing it and is still sane.
I was only home for two days and all I was able to give my mom was a night of relief and help her bathe him. Which was another whole different experience. He's getting big so giving him a bath is already tough, but when he doesn't want to move, is protective of his head, and we are trying to keep him comfortable and get him clean. We had to undress him, slowly take him up the stairs, guide him into the tub, and then awkwardly move his teenage body around in the tight tub in order to try and get him completely clean. His incision looks great though and is completely exposed now, no more bandages!
Thank you to everyone who has brought food, volunteered their time, and been there for us. It means SO MUCH!!! But, a special thank you to Collin Messics -- Sammy is in love with the lizard you brought him and it seems to really comfort him when he's having melt downs. Love you!
Autism from a sibling's point of view...
My name is Paige and I am 26 years old. I graduated from Towson University with a Psychology Bachelors Degree and from Johns Hopkins with a Post-Bacc Certificate in Education of Autism and other Pervasive Disorders at . I recently left my job at Kennedy Krieger Institute and began my Master's Degree in Applied Behavior Analysis at University of South Florida. My younger brother, Sammy, is 20 and has Autism. He is non-vocal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.