Tuesday, November 15, 2011

"Better" days???

Akila has had a couple of better days at the crisis home, isn't that awesome? Then why am I not excited about that? Because today at 1:00 we have our team meeting.

At the meeting, the manager of the home will report that she has had 3 better days, where she has made better choices and calmed down more quickly. Everyone will be really excited, and think that we are getting close to having her settled down. Wouldn't that be lovely if that were the case? I pray with all my might that it is the case. But can you blame me for thinking that this is just a phase?

She has more than once, and in the past few weeks even, had several better days in a row. That is always how she has been. It use to be that she might have a good week, followed by two rough weeks, or two good weeks, followed by 3 rough weeks, or something like that. In the past 6 months, it is measured more in days.

As awesome as all of the staff at the crisis home are, and they are great, and as awesome as the leadership team is that meets every two weeks to talk about her, they still don't know her like I do. They don't know her patterns, her cycles. Same goes for the school. They have been totally awesome, but I don't know if they really know what to think when I tell them that she will start to go down hill in November, as she does every year. In many ways, I think people think that I am being negative, pessimistic, and that Akila will live "down to" my low expectations if I have them. But they don't know her as well as I do, nor do they love her like I do. And that is not at all a judgement or a bad thing, it is just a fact. Like I said, I think they are all really good at their jobs.

So, I will bring the incident reports with me that the crisis home mails me after each "hold" (restraint). It is truly comforting, if that is the right word, to have written documentation from this home of how Akila acts during a rage. One report, which I will not give you all the gory details from, is very interesting. The staff writes about how after she was very verbally aggressive (yelling racial slurs and swearing), and physically aggressive (punching with a closed fist, kicking, scratching and stabbing with a pen) the staff eventually after several attempts at redirection, decided to remove himself from the situation since Akila was mad at him. He was going to go downstairs, and while doing so, Akila ran at him and attempted to push him down the stairs. He was able to retain balance and did not fall. He went downstairs and she then turned her aggression to another staff. He returned after 2 minutes and ended up having to restrain her for quite awhile.

There are more details, that are even harder to share- I will spare you. The entire incident report, could be one that Michael or I wrote a 100 or more times. Just put our names in, and it is our life. I am glad she has had a couple of good days. My sincere prayer is that the medication is helping her to be more calm and make better choices. But I am not ready to believe that the aggression is over. I will share that at the meeting, and once again, I will feel like I am being a pessimistic mom who might be perceived as not wanting her child. I want her more than anything to be able to live with us. I am totally willing to put up with all the drama, all the querks, all the swearing, all the challenges. I just cannot put up with the physical violence.

So please join me in praying that these last 3 "better" days, are the start of something new, are an end to the violence. But also please join me in praying for what to do if it is not. That is what is keeping me up at night and is breaking my heart. What do we do?


GB's Mom said...

Praying for you at all times,in every situation. GB is only eight.

tracy said...

The glass is not half empty or half full it is four ounces in an eight ounce glass. Realistic, that is what you are.

It does feel so good to have professional documentation. It is validation that you are not crazy, it is not your fault, and it is too much to handle in a regular household.

Julie said...

Thankful for documentation. Thankful that you share your story with such honesty with love in the midst of an often impossible situation...praying that those who hold the power to release services etc...will listen!

the johnson crew said...

I am praying for you guys Barb.

VR said...

Sincerely praying for you. I am a Christian and am an RN who has worked in many capacities including group homes, schools, and recreation programs all geared for kids very much like your daughter. I have been to many "Family Team Meetings". I sincerely hope and pray it goes well. Just to encourage you though, you REALLY DONT sound like a pessimistic parent. I hope they do not brush your concerns aside. You really sound like a parent that would be lovely to work with. You are involved, interested in your daughter's progress and sometimes lack of progress. You communicate with staff at the group home. I bet you are one of the parents that gets much respect from the workers at the group home. Good luck.