Monday, January 23, 2012

The battle continues...

A friend of mine who has been a special ed teacher for 22 years and is excellent, took Akila overnight on Friday. I am so blessed to have friends and people in our life who are willing to help out in different ways. I picked Akila up around lunchtime and had to bring her to the dance studio for Winter Show rehearsal which was from 1:30-5:30.

After dance, she and I went to Target to spend some of her token money. We didn't get home until probably 7:30 from that. The day was almost over, phew. Made it through another one. We are living in the moment, hour to hour, trying to get by without a rage. Every hour without a few rages, is a huge success.

Yesterday, we went to church, came home and ate. Michael was going to bring the boys to buy some weights for their cars they are making for the Grand Prix race at Awana's, and Imani went with them all. It was just Akila and I. Typically, in the past, this would work out great. Not yesterday. She wanted to invite a friend over to play with. Couple of problems with this. One, she has no real friends. Our neighbor girl will come sometimes, but last time she was here, on Jan. 1st, Akila was horrible and it was a nightmare. She cannot handle having a friend over. The other friend she has, is a sweet girl who's mom had a sibling with FASD. She is great with Akila, but I know last minute things don't work for her family. But the main problem, is that with her behavior lately, we can't bring an outsider into this chaos.

I offered to play with her. I have stated before how much I dislike playing with Barbies and dolls. But lately, with how out of control she has been, it is an absolutely horrible option for me. I am too frustrated with her to sit and play. But I will. I am can bite the bullet and do it. I offered to color with her, or do any number of other things. I asked her to bake something with me. Nothing would work, to de-escalate where she was heading. Strike that. If I agreed to having a friend over, and let her have her way, she would have turned into an immediate angel. I did not.

Eventually, she escalated to violence. Several warnings, several attempts at calming techniques (yes, I was using the calming techniques on myself yesterday. Somebody needs to use them!). I finally had to restrain her. Michael and the kids were gone for 2 hours, and she cycled up and down the whole time. She finally close to an hour got off the friend idea. Then she wanted me to go into the basement and find a new toy for her. She thinks the basement has a magical stash of things. I said no, that she had gotten a new Barbie this week, and we could play with it. She raged. Then she wanted to go to the dollar store. She had $1 left from Target the night before. I said no, we only spend the token money once a week. She raged more.

They all arrived home, and Akila raged more. I finally got her to settle down and color with me. We were in the dining room doing this for awhile. She also played with her Nintendo DSI for awhile. Imani has been playing Barbies each evening the last 1/2 hour before bedtime. We finally got to that time, and I was relieved. For a little. Imani ended up losing her patience with Akila and quit early. Akila did not like this at all. She blew up. Big. Time.

Michael and I were both trying to help her to calm down. He got hit in the face and his glasses were bent. I had to restrain her finally. She was really out of it. We finally decided to call the county crisis line, which I had thought of doing all day. I forgot it was an answering service and you wait for a call back. As I was restraining her, she started to freak out about them coming. She said if I got off her she would go to her room, which we had calmly been asking her to do the entire time. I got off of her and she started to hit and kick more. I restrained her again. She is really strong by the way. I was literally sweating by the time it was over.

After another 5 minutes, she said she would go to her room. I got off of her and she went, after she threw her shoe at me. I had to restrain myself from going after her. For real. She went to her room, and cursed and yelled from her room for awhile. I asked Michael if he would go check in with the kids, especially Imani. I was worried that she would blame herself since Akila raged when she quit playing and wanted us to make Imani keep playing with her. I started doing dishes waiting for the crisis team to call.

The phone rang, the lady asked me what was going on. I couldn't talk. Started crying. It was great. Finally told her. She asked if we have a therapist and psychiatrist for Akila. I said yes. She asked if the therapist has given us ideas of what Akila should do when she is upset. I almost threw the phone across the room. I restrained myself. I know this is an OK question. But I am sick of people asking if we know how to calm a neuro-typical kid. I read the list to her and told her how the therapist was over on Thursday and watched Akila hitting and kicking me and said there was nothing else she could think of that I could try.

She asked about med changes. I cried more. I told her that we changed a med on Thursday, but that is not the reason for this behavior. I told her it has been going on daily since Dec. 29th and that the med had not changed her behavior. She asked if Akila would talk to her. I said I would see. I brought the phone up to her room. She wouldn't open the door because she thought they were here and were going to take her. I finally talked her into talking to them.

I could hear the conversation, and it is hard to remain quiet. She asked Akila if she had thrown anything and Akila said yes, then no, then said that I grabbed from her what she was going to throw. There were a bunch of Akila's answers that were inaccurate, very inaccurate. Before I had went to bring her the phone, Akila had stopped yelling and swearing and was kind of quiet. When she was done with Akila, I got the phone back. The lady thinks that she settled Akila down. I tried not to laugh in the phone. Akila had told her that she likes to knit when she is upset so they made a deal that Akila would knit. HAHA. Akila does knit sometimes, but not when she is upset. As a matter of fact, I make sure the weapons- AKA knitting needles- are not in sight when she is upset.

We got off the phone, and she did not want to knit. I got her a bedtime snack and then tried to get her to bed. Around 10:30, she was still awake and I realized she had her DSI in bed which she knows is not allowed (she rarely plays with her DSI). I asked her to give it to me and she would not. I gave up. I was not about to have a power struggle with her about this. I was pooped. I came down to type an email to our social worker and then I went to bed around 11. She yelled down for me to get her some food. I said no. I went to bed. She came in my room and wanted some more sleep meds. I brought some to her. But she refused to take them with water, she wanted juice. I was done. I set them down, and went to bed.

I heard her go into the kitchen, get some more food to eat, and then go back to bed. I have spent the day emailing and calling our social worker and doctors. Trying to get some balls rolling more quickly. Things need to change. Soon.


GB's Mom said...

I am so sorry. Things have not been good with Hope, but at least it is only 60# of rage.

DynamicDuo said...

about two months ago we had back to back several nights in a row very violent rages.. took both Matt and I to restrain. We were seriously considering out of home placement. We don't know what happened after that, if perhaps the therapist informed the girls of this option or what, but so far so good. My girls are nearly my size, I've got maybe 30 lbs on them, but in a rage they are 10 times our size and strength. When Matt made me promise to lock both myself and our dog in our bedroom if it happened again when he wasn't home - that's when we knew we couldn't take much more.
We are in a different place than you because we don't have other children, my thoughts are this... if the safety of you and the rest of the family is in question out of home placement may be necessary. No matter how awesome we are, or how much we love our child, some children cannot handle the "family" atmosphere. You could've given her everything she wanted plus and it would not have pleased her. That's not what the rages are really about, it goes way deeper than that. And for some of our kids we may never know all the triggers, so much is hidden under so many layers....

Miz Kizzle said...

Have you tried a sticker chart?
Just kidding! That's the kind of idiotic suggestion that completely clueless social worker/therapists come up with when what you need is a safe place for Akila to live while the rest of the family tries to recover.

tracy said...

Miz Kizzle made me laugh out loud!!!

We have had horrendous experiences with the so called Crisis Lines, and they get paid big bucks from the state to "help."

When you are in a better place please let us join together to march on the capitol steps to insist on better crisis response programs.

I was truly shocked at the ridiculous suggestions the crisis people made to us....sticker charts, uh, have you considered praising your child when they are good? Are you XXXX kidding me! We are not calling you because little johnny won't eat his green beans, we are calling because little johnny is going to kill us all in our sleep!

We are so far past positive parenting we can't even remember trying it. But by the way have you met our other happy, healthy children? We know how to parent, we just don't know how to perform miracles.

My thought is that if the professionals are not equipped to handle these very difficult children then how can we be expected to. Sadly, it seems, not all people are safe to live in a family setting.

If the county continues to fail you it might be time to call 911.