It is really strange to think about what caused our stress back in the day versus what causes our stress now. Two years ago, we were still rookies in this game. Not only were we first time parents, we were still learning all about the world of special needs. The things that caused us the most stress two years ago were things like learning to be comfortable with Marissa's trach, g-tube and how to care for them, how to deal with insurance companies, DMEs, doctors and therapists.
Today, we are completely comfortable with her trach and g-tube. We have settled into a routine when it comes to her "accessories" and other equipment. We figured out that she is a rough and tumble kind of girl and we don't have to stress out if she bumps her trach on the table or scrapes her g-tube on the bed when she is trying to get down. Her "accessories" are just a part of her now. I am more comfortable in dealing with insurance, DMEs and doctors. I know how to handle talking and negotiating with them when I need to. It feels like we have been living this life for years and we no longer stress about things related to her special needs like we used to.
Nowadays we stress about her behavior. Just to be clear, I don't think she has any special behavioral issues at this time. I just think she is a typical toddler who is trying to discover who she is and her role in the world and she expresses it in a typical toddler way. Which bugs the dookie out of me!! She is very strong willed, loves to ignore and disobey even when given consequences. Just last night she was put in time out for hitting the glass back door over and over, very hard. As soon as she was out of time out, the very second she set her feet on the floor, she ran over to the door and started banging on it again! UGH!!
She loves to act out in the exact moments when I need her to behave. For example, yesterday I was on the phone with the lady from the Early Childhood Education department of our school district talking about her upcoming evaluation. Very important stuff. Marissa decided that was the perfect time to walk up behind me and smack me as hard as she could on the arm. She also decided it was the perfect time to cause as much noise and ruckus as she could, banging on the table, yelling at the top of her lungs, jumping off the chair and hurting herself. She does this anytime I get on the phone.
She also throws what I call "flash" tantrums. Everything will be fine, she'll be perfectly peaceful and obeying me and the very next second she will be throwing an all out fit. Throwing herself to the ground, flailing around and screaming. The best example of this is nap time. I always let her know what is going to happen before I start doing something with/to her. I let her know it is nap time and I need to suction her and change her diaper. Then I tell her it is time to go upstairs and get ready for a nap. I let her know that if she behaves, we can read her favorite book, "Goodnight Moon". She will be sweet and obey me. She will walk up the stairs and be fine until we get to the middle of her room. Then, all of a sudden, she throws herself on the floor, bangs her head and screams and cries like she is being murdered. Everyday. Without fail. So frustrating!!!
Sometimes when I get frustrated with Marissa's toddler terrible two behavior and think I am at my wits end, I like to look back at old pictures and videos of her. It helps remind me of how cute she was (and still is) and how much she has grown up. It makes me happy and it takes my focus off how bad her behavior can be at times. I love to reminisce.
I thought I would share a montage of a couple of videos we shot two years ago when Marissa was about seven or eight months old. I apologize for the video quality. These particular videos were shot with our 8mm camcorder. We can convert them to jpeg but we lose the audio for some reason. So I recorded them from my TV. They were shot before she had a voice, before she was able to tolerate her speaking valve. So the Marissa voice you hear is her this morning, getting in front of me and messing with the camera, slamming Ernie into the TV and anything else she could figure out that might bug me. ; )
I can't believe she was playing peek-a-boo at 7 months old!! Isn't she just the cutest??