Sunday, February 26, 2012

Getting by

We are in the phase of trying to "get by". Not a phase I ever thought I would be satisfied with. I don't like to get by, I like to be organized and go all out- getting by is not part of my personality. Well, I lie. When it comes to cleaning, I just get by.

The last three weeks, we have been trying to be very pro-active in avoiding rages with Akila. We always do this, but have been going all out lately, and living like a family can't really live normally. We have had PCA's scheduled each day after school until bedtime, and Akila has been gone the last two weekends. Last weekend, she was with a respite provider. This weekend, my awesome sister-in-law and bro-in-law, Dan and Tara, requested to spend the weekend with Akila. I obliged of course.

They had a nice weekend with her, and we got her back this morning at church. Shortly, a PCA is arriving to help us make it through the night, and she is bringing her dog- bonus! In the less than one hour since we got home, before the PCA arrives, Akila was starting to perseverate on wanting something new, a new DSI game or something like that. Michael was able to distract her with a computer game on his new laptop, so she did not escalate. She would have escalated guaranteed if we didn't have something new for her to do.

The PCA is here with her now, and Akila has just been playing the computer game so far. She is in a good mood, and I am hoping that will stay for the entire night. What has been hard, is that if there is any down time in our home, even if we structure it and say, from this time to this time we will do crafts, from this time to this time we will play on the Wii, from this time to this time we will do chores, etc., we are ensured to have explosions.

We have been walking on egg shells with her, and trying our hardest to bypass as many rages as possible. We have had several of them each week, but not as many as a few weeks ago. This is partially due to the fact that she is on one of her decent streaks right now, and the fact that we have kept her very busy. Bedtime has not been fun. We will give her the meds, she will get very tired after 30 minutes, and needs to go to bed. But most nights, she is refusing to go to bed, and if we get hardcore with her, we are guaranteed a rage which means at minimum one more hour before she gets to bed. She is not intentionally being manipulative so she can stay up later, but it does seem manipulative.

One night, she was coloring a picture before bedtime. It was taking forever. I told her she could finish it the next day, and she went off on me. Nothing I was suggesting or saying, would get her off the idea of finishing this picture. And it took her FOREVER to finish. Again, she was not coloring slowly to prolong bedtime, it just took awhile. I tried several things to get her to put it away and finish it the next day. Nothing worked. I made a choice to avoid the rage, and I let her finish it. It was after 10 when she went to bed, which is very late in our house (not for me, but late for the kids- and Michael!).

Sometimes it feels like we have made too many concessions. When dealing with a difficult child, it is hard often to discern what things you should stick to and which things you should concede on. We have not given up on Akila, we still love her dearly and want what is best for her. Unfortunately, we know that living her is no longer the best for her, or for the rest of us. She needs her family to advocate for her, love her, and have a good relationship with her. Right now, our relationship is struggling. When she was in the crisis home this fall, we were able to enjoy her much more, and had mostly positive interactions with her. We need this. She needs this. She needs the people who love her most in this world, to not be constantly yelling, restraining, arguing, de-escalating, etc. She needs to have fun with us, she needs to hear loving things from us, she needs to enjoy us. We do say loving things to her daily, but it is sandwiched between restraints and name calling (her calling us names that is).

We are getting by day by day. Praying for a better situation, where we are better able to enjoy our daughter, and give her the full support and love that she deserves from us all.


PurlingPenny said...

I've been thinking about you since reading this earlier today. Wondering at how very painful it must have been to reach this place, and now having to wait and hope and trust that the right situation will come where you're daughter will "fit", and where you will have all the access you need to still be her parent. Last fall I was standing behind a woman in line , who was looking at the display of FASD knots there for those to take and wear in support of the wounded. She commented quite loudly that no one has the right to tell someone what to do with their life, so she wouldn't take a knot to wear. I wonder would she feel the same way in seeing what our children go through because of someone else's right to choose? You're in my prayers.

Lisa said...

We realized about 4 yrs ago that my son (then, a very immature 14 yo) was not going to ever do well in our home. We'd had him since the age of 9 mos and he had been the angriest baby we'd ever seen (before or since). We begged for services, we looked for an out-of-home placement with an urgency I cannot even describe. He was (and still is) locked in an illogical place where there is no room for facts or love or change. He is now almost 18 and we have literally been "getting by" all this time. We walk on eggshells. We have destressed his life in the most bizarre ways. He is completely happy to just sit and stare now. He rarely rages because my husband watches him 24/7. He goes to work with dh and comes home and sits nearby until bedtime. As far as I'm concerned, it's no life for either of them. If he doesn't rage, the dr. thinks he's "doing fine". If I let the slightest thing bother my son he perseverates and rages and makes life a living hell for all of us - and I can't put my younger kids thru it one more second. This is not how a family lives. My sons grand plan when he turns 18 in 59 days is to go live at a homeless shelter and "get on with his life". His case manager says he will qualify for lots of help if he's considered a "homeless teen". So, why can't he qualify for something beneficial as a 14 or 15 or 16 or 17 yo? Because as long as we're functioning (no matter how dysfunctionally) and not calling the police hourly, we're considered to be doing fine. Sometimes I wonder who the crazy people in this situation are.

I know MN is much better with services than MI so keep on looking, keep on advocating for ALL of your kids and know that this is a season that will be over at some point.