Navigating through life with a child who is intellectually disabled
Sunday, April 29, 2012
My Week with Mary
I am more than a little late with this post. My intention was to write about the week I spent with Mary during my other two's Spring Break. Which, at this point was two weeks ago. Mary had her Spring Break a week and a half earlier than the others, so when their week came, my husband took them to Virginia to visit his family, while I stayed home with Mary. Mary was very excited to have me all to herself for a whole week. I, on the other hand was bracing myself for a week of crazy mood swings. All ready to blog the craziness away. I had a busy week scheduled, appointments, outings, school, one very anticipated concert to see Daughtry. I was sure Mary was going to be off, because that's how she is. Any change in the normal routine, makes her turn into Sybil.
Our week came and went. Absolutely nothing crazy happened. Yes, there were a couple of weird things. Mary spent 3 nights sleeping in her brothers bed. That is unusual because Mary will only sleep in her room, she never wants to participate when her siblings all want to gang up in one room for a sleepover of sorts. Also, for some reason, she thought we had to eat out every night. I couldn't argue, why cook for two people? The highlight of the week was the concert. Mary was beyond excited, I couldn't wait either. Just to see her experience being at a concert of that magnitude (to her). I was worried about taking her because I didn't know if the general loudness of it all was going to freak her out.
All went well, we had a nice dinner at the Hard Rock, bought her a Daughtry t-shirt, got to our seats early. Once the opening act started, I was freaking out. One thing I never thought about was that there might be strobe lights. Boy were there strobe lights! All I could think was, "what kind of mother takes her epileptic daughter to a light show?!" No, I wasn't that hard on myself, but I was obsessively telling her to close her eyes, look down, turn away from the light! I think I scared her a little, as well as the people sitting around us. I realize the chances of her having a seizure were probably slim, but knowing strobe lights can induce a seizure, had me a little concerned.
Instead, Mary had a seizure of a different kind. I can laugh about it now, but at the time I was shaking my head, wondering, what the heck is going on. During the concert, the singer, of both acts, would periodically shake hands with the people in the audience below. We were in the balcony, no way, no how, were we going to have Daughtry come up and say hi. Nor, could he possibly see us waving to him. Try telling that to Mary. She was getting downright pissed. At one point I had to threaten to take her home. Of course that worked for about a minute. Last year we took Mary to see Air Supply at Epcot. In Epcot's amphitheatre, we had seats close to the stage, and the guys did notice her waving and waved back, and would even mimic her arm waving. I guess she expected the same attention.
By the end of the night, Sybil was in full swing. I realized that it was late, and the excitement of it all was probably too much for her. Sensory overload in a major way. We couldn't even get through teeth brushing she was so moody. That night she went back to sleeping in her own bed, I'm sure she needed things to get back to normal. So did I!