Monday, March 16, 2015


The problem with a long absence is trying to figure where to pick back up and what needs caught up.

It's far too overwhelming to go into detail the events of the past few months, so I will fill in the most important gaps. 

First off, Victor's dad passed away at the beginning of February. It was sudden and unexpected, but peaceful, for which we were grateful. 

Obviously, adjusting was an interesting process. As was how to go about explaining the concept to Kit. I will write a separate post on that. 

While it was sad, there is also a relief that comes when you know a person is not going to continue to deteriorate in health, body and especially in Grandpa's case, mind. 

Kit struggled for a long while with the change that comes when a person who was in her life every day is suddenly not there any more. She was not especially close to Grandpa, they sort of lived around each other in the same house rather than together. He was a constant presence nonetheless, and some of his activities were predictable and part of the fabric of her routines. So when that change came abruptly and without any time to prepare her, I suspect she just felt quite confused. She had a very hard time with transitions, and any thing that made her feel out of control usually brought on yelling or tears. It was very tough for a while but she seems to be mellowing over the last couple of weeks.

The next big thing is much more recent. I am currently sleeping on the recently vacated (Zak has his own room now) bottom bunk as Kit and I have said goodbye to nursing, and to help avoid nighttime battles that might occur as a result. Both her and my sleep has been of particularly poor quality and duration for a long time now. 

When she wakes at night she wants to nurse and would often cry until this was able to happen. As long as I was in the house, she would cry, at times nearly making herself hysterical. If I was gone from the house however, or when she would go spend the night with Auntie or Nana, she would manage just fine without nursing. 

Victor and I have talked about it many times, but we finally felt that we had the time and energy necessary to dedicate to helping her adjust to such a major change.

We told her several days in advance what would be happening. And we made sure the evening before to let her know that the next morning was going to be her last nursing session. And you can be sure, she remembered when morning came. 

In fact she was nursing while I was still quite sleepy and I wanted her to stop for a while so I could get just a few more minutes of sleep, so I detached her and moved her away. She thought that was the end, and she broke down since she wasn't ready and hadn't quite finished to her satisfaction. So I grumbled at myself, then sat up to wake myself up. I asked her if she wanted to finish, and she nodded with tear stains on her cheeks.

She cuddled in and nursed for about another 10 minutes. She sighed a big sigh, let go, and then said, "That's it? No more nursing?" 

"That's right. No more nursing."

She looked like she was about to cry, but sat up and asked me to hold her. We snuggled for another few minutes, and then she asked to play the tablet.

She has been remarkably ok. She cried that first night that I wasn't in the bed, but she calmed down and was ok with Daddy being there. Again we had reminded her that I was going to sleep in the other room and that there would be no more nursing at night or in the morning. 

She has come into the room and crawled into bed with me and asked to nurse each morning since, but she has managed well when I tell her we are not doing that anymore. Once I had to get up and leave the bed because she was getting upset, and then she calmed down and accepted redirecton when I suggested we go get some breakfast in the kitchen. And once, she got so upset that Daddy had to take her to have a quick reminder talk, but then she came back and just snuggled.

It was hard to take away something that has always meant so much to her as well as has been one of our strongest emotional connections and ways to bond. But sleep for both of us is so so important and we desperately needed to be able to sleep better. It was time. 

On the not great side, she has been chewing her hand more and biting at me a lot. Most of the time, I sense it coming and can manuver myself or her out of the way in time and then redirect her to bite something else, a blanket or stuffed animal. She got in two real bites last week, not out of meanness or anger, it was completely sensory seeking. The second one left a sizeable and tender bruise. So her oral seeking needs are clearly still a driving force and nursing was indeed helping. But we will just have to step up her sensory diet in that department and we will all have to just learn to manage without that source of sensory regulation.

In upcoming events, you can look forward to being inundated with information about autism service dogs, as we are seriously considering, and her Nurse Practitioner agreed that a service dog may well be the constant "aide" that she needs. We think it could be a big help by being:

-A loyal companion to help her not feel alone when it comes time to move her to her new permanent bed in the room with her sister, a presence that she right now needs either myself or Daddy to fill. 

-A calming effect when she is upset by change or unpleasant transitions or unwanted situations. 

-A soft and sturdy buddy who doesn't mind her rubbing her face in his fur or hugs that are too rough for the kitty to handle. 

-A safety when she wants to walk without holding hands, but still tries to run when she sees something she likes or is overwhelmed by the situation or siblings. 

-And hopefully a friend and conversation starter to help her feel more comfortable talking to others in social situations instead of running away, yelling, or crossing her arms and avoiding.

I will write about all of this in more detail later. Just wanted to catch everyone up with what's been pretty much all consuming around here for the last few months.

I wish everyone a fabulous week!