Friday, December 16, 2011

Rett Syndrome and Change

Do not go hand in hand.

I used to be a smart person. Seriously I caught on to things so fast. Rett Syndrome is kicking my ass and outwitting me at every turn.

For the last few weeks Abby has been....let's say difficult. She missed 2 days of school last week and 3 this week. If we take her out she screams bloody murder. I can't or couldn't tell what it was. She doesn't seem to be in pain. She is not having seizures. Hasn't had one since April. She isn't really having tremors either but she is not sleeping...seems mad or terrified.

I don't know why it didn't dawn on me before but she really really can't deal with change. Not of any sort. Every time anything is different it takes her forever to adjust or she just plain freaks out.

This am when I was driving home in our no heat, no air, hole in the muffler,oil leak van after dropping her father at work it hit me...duh...In the last 3 weeks we got new caregivers, the heat went out in the van and her brother started a job.

I never even thought about how this affects her...except the heat part. I have been so exhausted these last few months. I really did hand her evening care over too quickly. I usually lurk and get in the way for about 6 weeks or so and I set each girl on her own almost immediately.

She is used to coming home and me fussing over her and playing with her from the time she gets home until the time she goes to bed and I'm just someone in the house. I'm really feeling guilty here.

She is not at all used to having to leave at night or in the cold and I've been dragging her along because I've really had no choice. George gets off between 9 and 10 and now Kyler gets off between 9 and midnight. Having to go get both of them, drive a hundred miles or more a day doing it....I'd just bet that's it. She is in bed in jammies tucked in by 830....or she was until both the boys started working. If I had to have the car for therapy or appointments I always left her at home with her brother while I went for the hour trip to get her father and bring him home. Now I'm doing that twice...in the cold and taking her with me...after bedtime. Duh Terri.

Abby has her first seizure the day I got home after leaving her for the 1st time last year. We have never been able to make a day of anything. She wants to be home. She feels safe and warm here and everything revolves around her. She hates stores and the public and I'm beginning to think school may be too much for her. She just cant handle being over stimulated and I knew that. Kicking myself in the butt.

The dragging her out stops today. I will be making a trip to get one boy home with her while I have a caregiver then going to get the other one. I have to as long as we have one vehicle. Her Dad isn't going to love having to get off at the same time every night but we have no choice with her brothers schedule.

We are monitoring school to see if the falling asleep and not participating is a common place. She can sleep at home...where she doesn't. I don't really want to do homebound or homeschool. The thought makes me a little nauseous but like everything else...it's about her. I can't do anything else. She has to be happy and comfortable...

Sorry to those I promised to make this blog a happier place. I have no where else to turn

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