One week out

Akila has been on the patch for one week now, so I feel like I can speak to it better. And I love it!!! Love. Love. Love. I recommend all of you try it who have kids who are on stimulants who have evening crashes. I wish we had been on it years ago.

I have not restrained her once since she has been on the patch. The three or four days leading up to the patch, I think I had restrained her 7-15 times a day. She had been volatile, hostile, aggressive, and horrible to be around. Now, she has been much more pleasant in the evenings. We still have our issues, but she is not going over the edge and turning instantly violent.

I was out of town, and Michael did have an extremely rough afternoon and evening with her on Saturday, but I think that was because I was gone. No medicine could have helped with that. We have been taking the patch off between 6:30-7:00 and she has had no problem with falling asleep. So, I do recommend trying Daytrana if you are having rough evenings at your house, it seems to have made a big difference for us. I am still quite thankful!!!

Thankful

It is too soon to say that it is due to the new patch, but Akila had a good day and my hunch is that the patch is the reason. We took it off at 6:40. Bedtime was fine, no major fights or rages or restraints.

She was out with Angie this evening for dinner and an activity, but she was home for the last two hours, and she was much more regulated. I am very hopeful. And I have to say, that if this is going to be something that is so helpful, why are the medical professionals not using this option more often? And why are they not prescribing this for kids who have issues with swallowing pills, like I know Carrie has had challenges with her daughter swallowing pills.

And when we parents are sitting in their office talking about the crashes that our children have at 4 or 5 pm and the horrific evenings that we are having, why are they not prescribing this option, or talking about it? Strange. I know it is an expensive one. I know when we started seeing our Psychiatrist one year ago exactly, she mentioned it right away but said we basically had to try everything else and prove to the insurance company that the other stuff didn't work. Then, I kind of forgot about it, until a week or so ago. I then emailed her and asked for it.

When I met with her yesterday, she said BC/BS would probably fight us on it and she would more than likely need to call and we might have to pay a lot. I said that MA should pick up what BC/BS didn't pick up. She said that MA didn't cover this one. So when I went to CVS to get the Rx, I told them I was expecting an insurance issue. But it went right through, both insurances, I didn't have to pay anything. It is a $250/month Rx, so it is spendy!

I suppose I should wait a few more days to be sure that it really is working, but day 1 was pretty good. Michael will have to judge the next few days. I'm leaving town tomorrow. Heading to Willmar for a girls weekend on the lake, and boy do I need a break. I am very thankful for this opportunity. It couldn't have come at a better time, for me. Probably not for Michael. Well, I take that back. It probably is good timing with the patch on hand!

Trying something new

Tomorrow is a new day...thank goodness. Tonight was a rough one. Bedtime took 1 hour and 45 minutes. Seven restraints. Lots of ugly words. I will spare you the details.

I met today with Akila's Psychiatrist alone without Akila. We are trying a new med. I was hoping to talk about some other things with her, but we really only had time to talk meds. Tomorrow, we will try Daytrana, which is a ritalin based medicine which comes in a patch. The nice thing about this is that it can stay on technically up to 24 hours, you just need to take it off 2-3 hours before you want the child to go to bed as it takes this long for the meds to get out of their system.

The other issue with most stimulants is that they only work for 8-10 hours. We are hopeful that this patch system will make our evenings less "horrific". Oh so hopeful, as they are out of control lately.

How to explain...

It is so hard to explain what our home life is like. Late afternoon/evenings are just crazy lately. We are in a bad stretch lately. Well, maybe always. I am losing track.

The smallest thing will throw Akila into a fit. Here is a little taste:

• She was looking for a red pencil sharpener. It is her favorite one, the only one that she will use. But of course, she can never keep track of it. I was trying to help her find it, but while I was looking, she was calling me every name in the book, pushing me, and hitting me. When I told her that I would not help her look if she acted this way, this only escalated her behavior. The name calling, the hitting, the pushing, became worse and lasted much longer. 45 minutes. Sharpener was never found.
• She was bored, 5 minutes after getting home from a hair appt. I suggested several ideas for her to do, several which were things that she could do with me. Each thing I suggested, like playing with Play-Doh, I was shouted at that she does not like to do that, and called a name. I then told her that I would not give her ideas and would not speak with her until she could calm down and speak respectfully. You may be asking why I didn't send her to her room or remove her. This totally does not work. She will not leave, and this is usually not a good idea anyway. Nothing I was suggesting was a good idea. Today was obviously too hot for outdoor activities, but other days when in the same mode, I have suggested that we go for a bike ride together, go to the park, do really fun things, and she still yells and says no. It is like nothing is going to satisfy her at that moment. She is in the Oppositional Defiant mode. This lasted for about 30 minutes, and then I had a 15 minute break, and then another 15 minutes of the same.
• She then went to her bedroom for awhile, and came down to me all sweet as pie. I knew I was in trouble. She started to him and haw and had a great idea. "Mom, if I'm really good for a week, and don't hit, or kick, or push, or call you and dad names and am really good, and promise that I will do that for a week, can we go and buy fake fingernails right now?" CRAP. I knew I was screwed. She was acting all sweet and nice. It was all I could do to not smile and start laughing. I sat there silently, said a quick prayer, tried to figure out the easiest way to say no, and went for it. I told her that we are on a spending freeze (I have been telling the kids that all the time- Michael's job ends on Aug. 15th and he is currently in a job search-please pray!) and that we would not be able to at this time. We are only able to purchase things that are necessities, I explained- and this is true. True to form, she went apes. Started calling me names, hitting. She perseverated for quite some time on the nail thing. She does have some fake finger nails from some old sets that are mismatches, and we eventually went and found them. This finally appeased her. 30+ minutes.
• I was cooking Lo Mein for dinner. She came into the kitchen and was about to ask if we could order chinese for dinner when she saw what I was making. She lost it and went nuts as she wanted to order chinese. I explained that Lo Mein is a chinese dish, but it was not what she wanted. She got quite mad, and we went round and round on this one. 20 minutes (not bad)
• During one of these rants, she told me not to talk to her, so I stopped. Two seconds later, she said "Stop blowing me off. You're not even cool. Stop blowing me off," very angrily. I explained that she told me to not talk to her. This made her furious, so she hit me.
• I don't think that I have blogged about this, but it has always been interesting to watch her use racial slurs during her rages. Initially, it horrified me, now- I am use to it. It would look quite odd to a stranger- to see a black child call their white mother the N word. One minute she calls me the N word, the next minute she is calling me a stupid old white woman. But the best, is that lately, she is threatening to call President Obama to bring back segregation so she doesn't have to be by me. Then 10 minutes later, she wants to cuddle on my lap (a 7th grader mind you). It is quite hard to bite my lip and not say go ahead, call the President. I'm sure he would be quite impressed. I do find it quite interesting that she is actually able to put together the high level comprehension that segregation would separate us, especially when she is disregulated during a rage. I suppose I should be impressed. It is really hard not to laugh when she says that one, and I know that is not the right response, but it is better than wanting to hit her!!!
• Getting her to bed lately is an absolute nightmare. She will think of everything she can to have a problem with at that point in the evening, no matter what routine we have just gone through. Her biggest one is that she is scared to sleep alone and wants to sleep in our room, or have one of the kids sleep with her. None of them want to sleep with her. That is why years ago Michael and I moved into the sun room so she and Imani wouldn't have to share a bedroom as it was so difficult on Imani. So she sits and goes on and on about how she is scared of robbers. I pray with her, tell her the alarm is on, Jesus will protect her, we are here to protect her, etc. But she is just nutty about it. The next minute, it is a different issue. Then she thinks about the next day and all the stuff she does not want to do or wants to do (this has nothing to do with if we have discussed the next days activities or not-we have already done that). She usually sits in the hallway and refuses to go into her bedroom. So we stand in the hallway, and have a power struggle. I have tried incentives, taking things away, nothing seems to help. I have walked away and left the area. This inflames her. She escalates big time and follows me and gets violent. So I stand in the hallway, try to remain patient and get her in her room. I usually just go into her bedroom and do some reading or picking up and she will eventually come in and when she does, she is ON FIRE. But at least I have now gotten her in her room. Often she comes in hitting and pushing and we end up in a restraint, as I just can't take it anymore. All the while, the other 3 kids are across the hallway listening to this mess. We go round and round. There is a whole bunch of exchanges that make no sense. Like normally, if I turn her fan on before she is in bed and under the covers, I get yelled at. Well, last night, I got yelled at for not turning her fan on right away. I explained that normally she likes me to wait. I was then called a name and yelled at some more. There are between 10-20 or more little exchanges similar to this, and by the time that I get out of her room, I am emotionally and physically exhausted. And usually I am not done. 50% of the time or more I will have to go back in. I usually try to just stay upstairs, and maybe tidy up the bathroom or something until I know it is safe to go downstairs. I find that I am less patient if I have gotten downstairs and she calls me back up. It is hard work climbing back up those stairs don'cha know! Although I have started to read a book to her once she has finally settled down and stopped calling names. This has helped as she usually falls asleep while I am reading. Bedtime with her is taking anywhere from 45-90 minutes.

Anyway, these are just a few tiny examples of some of the things that happen around here each and every day. I didn't even write about a huge explosion that happened last night that involved ice cream being intentionally thrown on Michael and lots of other craziness. It is weird to look back at how "easy" it was a few years ago, and to think of what it will be like in 6 months, or 3 months. It is kind of scary as a matter of fact.

Notice anything?

A few weekends ago, we had our niece and nephew for the weekend. This was all 6 kids eating breakfast. Notice anything interesting about the seating arrangement? That is Akila in the pink on the bottom right hand side of the picture.

Zeke's minute of fame

The kids all did a photo shoot last winter some time for Children's Hospital and Clinics, can't remember when exactly. Zeke seems to be the one who made the cut. The tip of his forehead has been in several of their adds. They had told me that he would be featured in his own campaign starting in April but I have been watching but have not seen it yet. Then a friend mentioned that they thought they saw him in the July issue of the Mpls St. Paul magazine last week. I finally got one today and sure enough, the cutie pie is in it. I snapped a few photos of it for you all to see.(in the small paragraph next to Zeke, it says "To help kids relax and feel more in control, they get to choose a tasty scent for their anesthesia masks--like the always-popular Dr. Pepper)

Zeke is pretty impressed with his fame. All four of the kids are also featured from a different photo shoot they did a year and a half ago on the mission and vision posters at Children's, check them out if you are ever there. There are two different versions, one version has Imani and Hezekiah in it, and one version has Zeke and Akila in it.

Poor Zeke has been struggling with some health issues since March. Multiple sinus infections and some crazy hives, angieodema which is lip swelling and joint pain. It has kind of been a puzzle to figure out. They have been doing lots of tests, blood work and other stuff. He is more than likely going to see a Rheumatologist in September as we can't figure out what is causing all the junk. The good news, is that it is all controlled with being on Zyrtec. His allergist thinks he might just have chronic hives, but is confused with the joint pain.
Here is a picture of his lip when it was swollen one time, and this was not a bad one!

CVS has returned

And I don't mean the store, I mean Cyclical Vomiting Syndrome. Akila has CVS and has not had issues for over a year. She had a bout of it on the weekend of the 4th of July and I thought we might have to cancel our annual trip to our friends on the lake in Willmar, but thankfully it only lasted one day so we were able to go. Then, she woke up with it again this weekend. Only this weekend, she hasn't actually vomited, just has the headache and upset stomach.

There are two good things about when Akila is sick. One thing, is that I am thankful that she always makes it in the toilet or a bucket. I have a friend who's daughter has CVS and she rarely does so I realize how fortunate we are that Akila has this skill. The other thing, is that when Akila is sick, she is mellow. I don't have to worry about rages. It is kind of a break in a way. I'm not saying that I like her to be sick, but there is a certain relief that comes with it when she is not feeling up to par.

She is feeling better today though. She was raging full force tonight. Her raging has been quite interesting lately. Her rages for quite awhile have been full of interesting names. She has called Michael and I the "N" word for a long time, as well as stupid white people and other "colorful" names that don't always fit the bill if you know what I mean. Now, for the past week, she has started to threaten, that she is going to call President Obama to tell him to bring back segregation since she doesn't like stupid white people.

It is hard to keep a straight face when she is yelling this, and even harder not to respond. It is also interesting that her mind is able to put together this complicated thought during a rage. Tonight, while she was raging big time at bedtime, I said her name when I was talking about a phrase that she used. She yelled at me to not use her name. I replaced her name with the word "you". She then said not to use the word "you". I then said "my daughter". She said I couldn't say "my daughter" then. It was hilarious. She was completely out of it, we had a great time. My head was spinning by the time I got out of her room.

All she wants to do is argue it seems like sometimes. She was outside this evening playing with the other three and neighbor kids, or trying to at least. But she kept coming inside with issues. Imani was playing with a neighbor girl and Imani was taking a ball from the girl, kind of in a game of keep away. But Akila kept thinking that the girl was really mad, although she wasn't. Akila kept coming inside and telling on Imani. I kept going outside and explaining to Akila that the girl wasn't really mad, but Akila was convinced that the girl was mad, even when she told Akila she wasn't mad. It was like Akila just wanted to be mad, and hit Imani.

-I didn't finish this post last night. Today, we are stuck at home with no car, and no PCA. It will be a long day.