Walking the tight rope

I feel like we are so often walking the tight rope, just trying to hang on and avoid a rage. Akila was on edge last night, but we were able to avoid a major rage. It could easily have gone the other way and almost did.

The reason it almost went the other way; the DVD remote was missing. I searched and searched. Could not find it. She was getting elevated and did not like any of my other suggestions. For some reason the DVD player in our bedroom does not work unless you have the remote, a dangerous situation. She could have watched a movie downstairs or on one of our laptops, but these were not good options, "Dummy!". I suggested that we could play a game or cards. Not good options, "Dummy!".

Eventually, I finally found the remote and I almost kissed it. Major rage avoided. We did not fall off the rope last night, nor this morning. Praying that we stay on it tonight as well.

Slapping the sitter

Michael and I went to a parenting seminar at our church on Friday night and Saturday morning. Our 19 year old nephew babysat. Davis is a student at the University of Minnesota so we picked him up at the dorm and he stayed over night last night. He has babysat 2 or 3 times this fall.

I tried to give him the heads up on Akila, and last time he babysat, she was pretty challenging. But her behaviors have escalated so much in the last month, it is hard to prepare someone for it. We went out to dinner before the seminar, and Davis called about a 1/2 hour after we left. Akila had been slapping him and throwing things at him, and he was wondering what he could do.

This broke my heart. She has shown disrespect and been challenging for sitters before, but has never gotten violent with them also. She was also swearing. The great thing, is that it didn't really throw Davis off, he was just wondering what his options were. I told him to restrain her. He did, and texted us about 20 or 30 minutes later and said all was good.

How cool is that? Not that she was hitting him, but that he was able to deal with it and not too phased by it. He said he is willing to sit again in the future. Now that is love. We love you Davis, and appreciate you and the maturity that you have shown working with all of our kids!


(here is a really cool picture I found of Davis on Facebook- isn't he cute??!! :)

Worst morning yet

We had a rough morning, again. I let the kids all sleep in and drove them to school. After two nights in a row of Akila getting up by 4:00 am (maybe sooner, this is when I heard her), she was very tired looking last night, bloodshot eyes and all. Akila took her meds and got ready OK, but as we were going out the door, the other 3 were already out the door, she wanted to take a Nintendo DS with her to school which is against the rules.

She went nuts. I said she could bring it in the van, but leave it with me when we got to school. No go, she went into the red zone. Kicking, swearing, went out the front door and kicked it and dented it a few times, went to the van and started kicking it but thankfully did not leave any more dents. She would not get in the van, so I got in. She finally got in, but climbed into the front passenger seat to try to go out the passenger door, went out that door and fell in the snow bank. The door was open, she grabbed one of the kids piano books on the seat and threw it into the snow. She was refusing to get in, calling names, swearing.

She grabbed the snow scrapper and threw it at me, and then grabbed a 1/2 full water bottle. She realized it had water in it, so she took the lid off of it and threw it at me so water sprayed all over the dashboard. I, acting like a mad child, took it and poured the rest of the water on her. Proud moment. This infuriated her even more. She jumped in the van lunging at me, kicked the gear shifter thingie on the van and I thought she had broken it for a minute. I could not get her to calm down, and at this point, I was not calm anymore.

Eventually, she finally got back and into her seat, hit and kicked me a few more times, then threatened Hezekiah as he maybe laughed a little. When we finally were able to pull away from our house, I realized that Hezekiah was quietly sobbing in the back seat. Thankfully, Imani had chosen to sit in the far back in between the boys. Hezekiah was leaning on Imani, and crying.
Eventually, Zeke was also leaning on Imani with a sad face. After about 5 minutes of silence, Akila started talking normal like nothing had just occurred.

Then, we got to school. We pull up in the alley where the buses drop off, and are in the middle of the buses (this is where parents drop off also). The other 3 get out, Akila stays back thinking that I am going to give her a piece of gum. On mornings where she has been cooperative, she gets a piece of gum on the way out the door. There was no way I was giving her a piece of gum today. She went nuts again. Kicking, hitting, swearing. The sliding door is open, kids are walking past, and she could care less. A teacher is at the door, and I am sure she must have seen some of the scene.

When I left the school, I cried all the way home. This new level of violence and raging, is something I have no idea how to handle once it has began. I know the best answer is to prevent her getting into the red zone, but sometimes, you can't prevent it.

Found: Dance PCA

I am so relieved and excited, a dancer has taken the position to work with Akila during dance class, and Akila loves her! Her name is Laura, and she was the teaching assistant in Akila's class last year, here is a picture of the two of them:


On Wednesday nights, when I pick up Akila from dance, I bring her evening meds and have her take them at the studio so they have kicked in by the time we get home. I usually try to have one of the teens give them to her as she then does not fight the meds (we are having epic battles to take any kind of meds, including melatonin).

Last night, Laura volunteered and brought her the meds. When she was leaving the room, Laura said something like, "she is my favorite kid in the world". Laura has always liked Akila and sees past her querks and oddness that can freak some people out. I am so thankful that she is willing to help out with this so that Akila can continue with dance. Thanks Laura, you are my hero!!!

Wanted: Dance PCA

Akila's dance teacher is my best girl friend, Juli. She says that Akila's behavior is to the point of where she has to have someone with her in class, a PCA or aide of some type. Akila keeps leaving class, and rifling through everything in the studio and stealing stuff, is having a hard time staying in class, and is often mean to the other dancers.

I could just have her quit, but I really don't want to take this from her life. She is a pretty good dancer, when she pays attention. She has natural abilities and enjoys it. The other three are good musicians, which Akila has struggled with because of her dispraxia and other issues. I could stay with her during class, but that would not work well. She does not respond well to me in the evening, and it would be a constant battle.

Immediately following Akila's class, is a teenage class and I had the teacher announce tonight that I would like to hire one of them to be Akila's PCA during her classes. I am keeping my finger crossed, as I really do not want her to have to quit dance. We always say that we have 3 musicians and 1 dancer. I want this for her. I really do.

She had a tough behavior day at school, which I am guessing is somewhat tied to her lack of sleep and the excitement of skiing all day. They couldn't get her to take her meds until 2:00 pm, which mean that she had several hours on the trip when the meds had worn off.

On the flip side, I had a pretty energetic day considering the small amount of sleep that I got. Yey!!! I received a packet, or should I say catalog, of paperwork from the state as the second phase of the medical assistance application. Worked on it for 2 hours last night, and a few hours today. Not fun. Having to dig through records and find her Apgar scores for goodness sakes. I don't remember. And lots of other info that is really unnecessary, in my opinion. Well, I am off to bed at a much earlier time than I am accustomed to, but the energy is gone.

Up since 4

The boys came into our room at 4:03 this morning saying that Akila keeps coming in their room. I went upstairs, no telling how long she had been up. All three of the other kids were awake. I think Imani is the only one in the house who fell back asleep. She even woke up the poor puppy.

She is suppose to go skiing today with her class, I think she is just too excited. It drives me nuts when she gets up in the middle of the night, although I know she kind of can't help it. But what really drives me nuts, is when she wakes the other kids up intentionally. That she can help. I cannot talk Imani into sleeping with her door closed and/or locked. That would help. I think one of the boys got up to go to the bathroom and left their door open and unlocked last night. I realize she might then pound on their door to wake them up, but I really doubt she would do this, at least not every time.

This will give me some time to get my grocery shopping list ready for Rainbow Foods. Today is double coupon day and they are allowing 10 coupons today instead of 5, that is a potential savings of up to $20, as you can use coupons up to $1 off. Wahoo!!

School refusal

Does anyone out there have any approaches that worked on dealing with a child who refuses to go to school? This morning, Akila decided that she was not going to school. I tried to be calm, explained why she needed to, what would happen if she didn't, etc. Didn't work.

Ended up threatening, taking away items if she did not get her coat and shoes on to go to the bus stop. No new summer clothes (which she is already obsessed with), can't go out with Angie tonight, etc. Eventually, she went but it was not pretty.

I know that someday, and maybe in the near future, I will not be able to coax her into going. What do you do then??? One of the many questions I am struggling with.

New dents

Our van got a few new dents in it tonight, courtesy of Akila. A good reminder to me that we should never have a nicer newer car. We went to Nickelodeon Universe today after church as we had some free wristbands that expired after today. The day went pretty well, until the obvious time to go. That was not fun.

It was just before 7:00 pm, and Akila was not ready to go. Note to self: never park by an anchor store. We parked by Macy's when we arrived, we came through the children's clothing section. Akila was enthralled even though we made it clear in the morning that we would buy nothing at the Mall, and Akila said she understood and "agreed". She wanted everything, but did not throw a fit, when we arrived.

When it was time to go, it was hard to get her out of Nick Universe, she was not happy. I told Michael to walk through Macy's and we would go up the escalators in the store so we could bypass the children's clothing. Well, this backfired. I did not think about the fact that we had to walk first through the make up section, then the jewelry. We somehow made it up the escalators and to the third floor, and had to make it through the home section. Michael went on ahead with the other 3, and I tried to get Akila through. She was mad. Wanted me to buy her something, wanted to go look at clothes.

She refused to leave and I found my self scanning the premises trying to see what she would knock off of shelves and off of racks. It was not a good situation. I was trying to get close to her, so I could grab her and guide her out of the store, but she kept moving when I got closer. I was scoping the place out for an escape route where she would be the least likely to do damage, and where there were the least amount of people to witness the craze and call the police. I am always a little paranoid that people will think I am kidnapping her, especially since we don't match and it is normal for people to assume that she is not my daughter.

Thankfully, Macy's started to announce that they were closing in 5 minutes so I used that to get her to move closer to the door. But I eventually had to start guiding her out the door and she started kicking and hitting. She did this all the way to the van and then she refused to get in the fan and I could not get her in. I finally got in the van, and we all just sat and listened to her rage outside the van. She was swearing and practically foaming at the mouth. Then she started kicking the van. Michael got out, she finally got in after many unkind words, and positioned herself to hit Michael when he entered the driver door.

She threatened to break his glasses, and said several other mean things. She kicked my seat, pulled my hair and would not settle down. After awhile, Michael started to slowly pull out of the parking space. She would not settle down, or buckle up. I finally held her teddy bear out of the window and counted to 10 for her to get buckled. She did buckle. Then she took a cup of lemonade that was from lunch and almost threw it at Michael, she stopped herself. For 5 seconds. Then she threw it at the back of my seat. Lemonade splashed all over Imani.

It was not a fun car ride home. We started, and then had to pull over and wait for her to settle down. She finally did. The rest of the ride was fine, and she did pretty well at home and went to bed OK. I just need to remind myself that she was pretty good today, other than the last hour or so.

We went to church this morning. We have a designated spot where the kids meet us after Sunday School. When I went there today, Akila had her coat off, and I was really happy to see that she had stuffed her boobs for church today. Didn't notice it before church, I think she put her coat on upstairs. I'm sure her Sunday School teachers were impressed. Good grief.

Cell phone #2

Seriously. I am brain dead. Why cannot I get better at checking Akila's pockets, all of them, and her backpack each day. I just found a 2nd cell phone in her bedroom tonight. And she is in no mood to talk about who it belongs to. Strike that. She just called me upstairs and said she was willing to talk. Before that, here are a few of the things she was saying:

• F*** you, Dumb A**
• I'm going to punch you in the mouth
• Shut the F*** up
• Ooohh, I'm really scared of you
• and the list goes on, I only shared the mellow ones

And now, I am an even better mom than I thought I was earlier. I can't stop laughing. She stole the phone off of our superintendent's desk. She says it is his old one. And I can't stop laughing.

Personal Care Attendant

Akila does not qualify for any services like Medical Assistance or PCA's. We had looked into TEFRA, which is a parent pay sliding fee scale for kids with disabilities several years ago, but it was way too expensive. We recently figured out that must have been when we were using our tax return from a year when I had more employment. It now is much more affordable.

I spent a few weeks on the application, which is no joke. You practically need a college degree to fill it out. I got it off in the mail last week and I am sure it will take months to get finalized. I am very hopeful that we will qualify for some PCA services once she gets on MA. I know there has been significant cuts in that program recently. Our Pediatrician thinks that with the Level 1 behaviors, it should be no problem and she is on board to help with paperwork.

But after last week, I can't wait any longer. I have hired one of my old students (Ruth) to come over tonight to help with Akila. Last night is when Michael's string of late nights at work starts and I need help. I can't tell you how relieved I already feel at 8:00 am knowing that I will have help tonight. Ruth has babysat over the last several years and is familiar with us all, so it will be really nice to have her over to help.

Yesterday, Akila basically spent the entire day picking her skin. I went to an honor roll ceremony at school in the afternoon (the other 3 kids all made the honor roll). Akila sat by me, and picked on her arms the entire time. I connected briefly with her aide at the end of the day and she said Akila was distracted and picking her skin all day. I dropped her off at Juli's house before dance. She picked her skin the entire 40 minutes at Juli's house, and then off and on throughout dance class. She always gets in modes where she is more obsessive about her skin picking.

Monday night, we went straight from the after school program to a basketball game in Burnsville for Imani and Hezekiah. Akila spent the first part of the game by the opposing teams bench, as she is always intrigued by the other team, and usually cheers them on even. Lovely. Well, when she came back by us, she had a cell phone. She does not have a cell phone. So I got to walk up and down the aisle asking if it was any one's. It wasn't. I turned it on and recognized some of the names in the phone as kids in Akila's school.

She of course threw quite a fit in the gym in the middle of the game and I had to take her into the hall. It took quite awhile to settle her down. The phone got back to the rightful owner the next day. Then on Tuesday, she came home wearing some tennis shoes that were not hers. Her stealing is so cyclical, like most of her behaviors. I just emailed her teacher and special ed teacher and asked them to deal with her about the thefts. We need to get on top of it before it gets too out of control.