Sunday, February 28, 2010

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.

Thursday, February 25, 2010

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.

Saturday, February 20, 2010

Adorable house for sale

Our friends, Jason and Janelle, and their 6 kids moved to Wisconsin this fall and are still trying to sell their adorable house. I have been in it and it is really cute. It is located in North Mpls, and the area is not a super rough part of the hood. It is currently listed at $99,000. Check it out if you know anyone looking for a house!! Jason is a pastor and it would be a real blessing to this beautiful family not to have this mortgage any longer. They are also willing to rent if anyone is looking to rent.

Friday, February 19, 2010

Missing my mom

I have been putting off this blog entry until I am emotionally ready, and I realized that is probably not going to happen anytime soon. Last week was the 5 year anniversary of my mom's death, and on Valentine's Day, it was the 5 year anniversary of her burial. I think thinking about her, on top of Akila's tough behavior, has made me more emotional than I normally am.

My mom was a pretty cool lady who would be probably losing her mind watching all the stuff going on with Akila. I have mentioned this before, but she was not very patient with Akila's uniqueness, and she died before Akila's behavior got bad. But I really wish I could call her up and vent sometimes.

My mom was one of the Willmar 8, a group of women who were "famous" in the 1970's. Feel free to go to the link to read about her if you'd like. It is pretty crazy to google my mom's name, Doris Boshart, and to have a bunch of info come up. There was a documentary and a made for TV movie made about the group as well. I have both on VHS tapes, but my nephew, Ben, gave my brother a DVD of the documentary for Christmas. Tony said it made him cry. That is a pretty thoughtful gift for a 19 year old!

I can tell that I am getting quite old, as I am frequently doing things that I realize are behaviors that my mom had, some good, some bad. It is strange the kind of things that make you think of someone you have lost. I was brushing my teeth the other day, and I cleared my throat, and I remembered always hearing my mom make a similar noise when she was brushing her teeth. Anyway, during rough times, I miss my mom. I guess that is how it is suppose to be.

I'm very passionate about that dictionary

Two more rough days. Yesterday, when I picked Akila up afterschool, she was yelling and swearing before she got into the van. The entire ride home is full of yelling and drama. I am contemplating only picking up Akila, and having the other 3 ride the bus home. She is so mean to them on the ride home, threatening to kill them, yelling at them if they try to tell me something about their day, etc. It may be easier for all involved if they ride the bus. I have to think about this.

Anyway, we got home yesterday, and had one hour before the rollerskating fundraiser. It was one of the longest hours ever. I had to restrain her multiple times, as she thought the jeans Imani put on were hers. Then she decided they are a girls at school and that she "accidentally" took them. I can't keep track of clothes. The girls are pretty close to wearing the same size, we get hand me downs, and I sometimes put clothes in the wrong drawers. But these definitely are not Akilas, I thought they were Imani's. They might not be either.

But I was not going to make Imani change. And this made Akila furious. I hadn't even told her yet that she was not coming rollerskating. Michael got home at 6:05 and the 3 kids and I bolted. He had to hold her back as she was sobbing, raging and totally nuts. We got home at 8:20 or so, and the two of them were playing the Wii. He said she had just calmed down at 8:00, after threatening to stab and kill him, and calling him all sorts of names. And after tearing through our bedroom, throwing all of my clothes out of the cabinet and onto the floor, rifling through my jewelry, which I found in her room this morning.

Tonight was not fun either. The three kids were working on homework, and Imani was using a dictionary to do her vocabulary stuff. Each girl got a dictionary from the school, but we have not been able to find Imani's for over a month, so she uses Akila's. This is an issue every month, if she sees Imani using it. She saw her using it tonight, and totally lost it.

You would think this dictionary is the most important item in her life. Here are a few things she had to say about the special dictionary:
  1. The dictionary is very special to me
  2. I am very passionate about that dictionary
  3. It means the world to me
  4. It is my favorite dictionary
There were several other loving things she said about the dictionary that have escaped me. I ended up having to restrain her as she was getting violent.

She also spent the night trying to talk us into taking her somewhere. She cannot understand how nervous we are to take her anywhere right now with her explosiveness. Michael is planning on taking her out to run errands tomorrow, and I am hoping he takes his time, takes her to a movie or two, maybe at the theatre in Brainerd. That's a good idea.

Thursday, February 18, 2010


Wow, I feel like that is all I can say. I'm tired, physically and emotionally. Last night, Akila was occupied with watching a movie that we rented, but I can tell if she had nothing to do that really interested her, she would have been very wild. As it was, she was demanding and rude every time she emerged from the movie.

I was helping two of the kids with homework all night, and it was really busy and chaotic. Put the kids to bed, including Akila just after Michael got home from work, and then I left to go meet a friend to see the movie Valentine's Day. I really need to do this sometimes, get out after bedtime. Even though I have time to regroup during the day, it just feels really good to get out after bedtime as well.

The movie didn't start until 11:00, so I got home after 1:00. I walked in the door to find Akila up and watching movies. That was not what I needed, or more importantly, what she needed. I cut up an apple and let her eat this before I brought her up to bed. She has little to no appetite all day because of her meds, so she eats non stop all night and often wakes up hungry.

The bottom line, is that she was still up at 3:00 am and I fell asleep. I was in bed, and trying to go check on her every 10-15 minutes to see if she fell back asleep. She never was, and I eventually drifted off. I awoke this morning to find her sleeping in the hallway. Michael said he was up at 3:30 and she was still awake.

So this morning, she was out of sorts again. Not too shocking considering that she hardly got any sleep, but no fun none the less. She was very uncooperative in taking her meds. Tonight is a fundraiser roller skating night for the school, and I have been trying to use that as a reward for good behavior, but it has not worked.

She brought her uniform down and wanted me to help her get dressed. My initial reaction is to say no, she is 10. But for whatever reason, sometimes she needs help. This is of course 5 minutes before they need to leave. I sat down in the dining room to help her and I was yelled at that it was too cold. I went up into my bedroom to help her and was yelled again. We finally ended up in bathroom and I was very calm.

When we came down to get coats and boots on, she went nuts some more. She went and dug out some high shoes that are for dress up only, and wanted to wear them to school. I told her that the shoes are not allowed out of the house, which she knows. She went berserk. She swore at me, threw the shoes at me and a few other things that were in her reach. Then she left to find something else. Hezekiah came over and was hugging me. He said that he was scared she was going to hurt me. I told him not to worry, that I would be fine.

After several more issues and several more explosions, I got them off to the bus. I must say that I am thankful that she goes through cycles of good and bad behavior. Well, I don't mean that I like the bad behavior of course. I mean that it could always be the really tough behavior. But Akila has always been cyclical in her behaviors.

She was good for the two weeks of winter break (this was a new one, usually during pro-longed school breaks, she is more challenging), then we had 5 or 6 weeks of challenging behavior, then one week of good, and now we are in the challenging period. The scary thing, is that during each cycle, the challenging behavior seems to be a step worse and more extreme. That is a really scary thing to watch as you see your future.

Wednesday, February 17, 2010

Tough night

I messed up. Monday night, I was pointing out to Michael that Akila had over one week of good behavior (this means behavior that would pop most parents eyes out, but is pretty good for a kid with FASD). He pointed out to me that the week was just starting. He was right.

Last night, she was horrible. She and Hezekiah got into a little tussle, and she could not get out of a really bad mode. I ended up having the other 3 kids go into Imani's room to play where they could lock the door. Of course, all this was happening as I was trying to make dinner, and Michael was not home yet (around 5:30). She was upstairs threatening to kill Hezekiah, to stab him, calling him a f***ing a**hole and many other nasty things. When I went up to try to calm her down, she only escalated, and I was truly being very calm myself.

I had to go into Imani's room for a minute to instruct the kids to not talk about Akila or her behavior, as they were (not in a mean way, they were just all processing), but Akila could hear them and it was making her get more mad. As I was in the room with them with the door locked, Akila kicked the door and I can't believe it didn't break. It was so loud and it really scared the kids. She did it twice and then when she heard me coming out, she ran into her room and locked the door.

I went down to the kitchen to get the key, took a minute to compose myself and really prayed for a few minutes, and then went up into her room. She was sitting on her bed, and she was practically foaming at the mouth. She could not stop perseverating on Hezekiah and the fact that he hit Akila- this was of course after she had hit him a couple of times ( and he hit her on the forearm and not very hard). She was swearing and totally out of sorts. I stayed in the room, trying to calm her down, distract her, etc. Eventually, I left her in her room, and returned to make supper.

She came in and out of her room, and made her presence known. At some point, she came downstairs, and I got her on the computer playing a game and was finally able to get her to settle down, but she was in and out of it all night. Very quick to anger. Very.

I don't think today is going to be any better, not if this morning is an indication. She was refusing to take her meds, and was very explosive. I wasn't sure if we were going to make it to the bus even. Thankfully we did. I have decided that we are going to try to ride the bus to school, and I pick up after school. This is quite selfish on my part, but I was losing just under 2 hours total of my peaceful daytime when I am able to get things done, regroup and work. Now I only lose 1 hour. We'll see how it goes.

Sunday, February 14, 2010


By the way, I think I may have FASD as well. I am known for saying what is on my mind and not filtering enough, and I think I did that today.

When we first moved here, over 7 years ago, there was a family of 6 kids that lived by us, and it was an inner city family that was struggling. I got to know one of the girls really well, her name is Keke. She hung out a lot at our house and they moved to Fridley probably 5 or so years ago.

She probably calls me about once or twice a year, and then I ran into her last year at the downtown Target and we touch based a little bit. Well, I ran in to her today at the CVS pharmacy that is a few blocks from my house and learned that she lives back in the neighborhood.

We chatted for a bit, and she said she would stop by sometime and gave me her boyfriend's cell phone number as she didn't have one. She is 19, almost 20, no job, and not attending school. I harassed her about both. I use to talk to this girl regularly about not getting pregnant as I do to the 17 year old I currently mentor from my kids school. Out of wedlock pregnancy is such an epidemic in the inner city and it drives me nuts!!!!!!

I was waiting for my prescription, and I realized that she was waiting for one too (I thought she had seen me at the pharmacy area and came up to say hi). I then said that I hoped she was picking up an Rx for birth control because she did not need a baby!!!!! She actually was, and told me that she has not had any children. Well, this may sound really bad of me to have said, but we really had long conversations about this back in the day. I told her I was proud of her for making such good choices.

My husband could not believe that I said this to her, but I have always been pretty open with talking to teenagers about sex. I truly believe that abstinence is the best and smartest route (and I tell them this of course!), but I know that it is not realistic in a teenagers life who lives in an at risk family and does not know Christ on a personal basis. Anyway, my filters are often off. That's all I'm saying.

Closing up a good week

We all had a pretty good week last week, and we really needed this after 5-6 weeks in a row that were really rough. Akila came home several days with a note from her aide saying that she had been really good, even focused. That is a blessing.

In the past, we have had the most success with Akila when she is working towards a reward. I have found if we are always doing this though, it loses it's effectiveness. I use to do it with her if she did not steal for an entire week, we would do a make up party at the end of the week. Now, I don't even care about the stealing, it is the least of my worries.

Well, I shouldn't really say that I don't care about the stealing. I have just learned that it is pretty hard to stop, and that I now just deal with it differently. I say this as I just found a 5th tube of mascara tonight that she must have stolen at the dance show a few weeks ago- at least I think it is the 5th tube, I have lost count.

Anyway, earlier this week, I made a deal with her that if she was good in school, took her meds without fighting, and was fairly nice at home, that I would get her some fake fingernails on Friday afterschool. Well, she was highly motivated. She has had some fake fingernails in the past, and I hate them for so many reasons. As a matter of fact, some time ago, I banned them. She has not been allowed to have them. She will spend Christmas money on them, or chore money on them if she is allowed.

Well, the long absence of these lovely nails has obviously worked as she must have wanted them terribly bad. She was great and she got them on Friday. The plan is to take them off tomorrow night as I think they will be too distracting at school on Tuesday. She is a bit obsessed with them. We'll see, I might let her try them for one day and check in with the aide to see if she was obsessed. I just hate them though, so it is pretty hard.

She woke me up yesterday morning out of a deep sleep, and wanted me to get her some cereal which she is capable of doing herself. I was telling her to go get it, when she yelled "I can't have dad do it because he is sleeping, so you need to". Did I say that she had just woken me from a deep sleep. First of all, I didn't tell her to have dad get it. Second of all, I was sleeping. Drives me nuts.

The week at Children's Hospital and Clinics finished up really well. We made several concrete changes to the communication process for families during a child's surgery, including creating a communication board to be posted in the pre and post op. rooms for families to write questions down on, and a note pad to write answers down on. We created a system where families will get pagers during the surgery and a process for families to consult with the surgeon after a surgery in a private room. Sounds obvious, but right now, the waiting room during surgery is about the size of a bedroom, seriously, and most surgeons walk in to the room, right up to a family, and update them in the midst of everyone. Space is a major issue, but it won't be after construction.

It was a well organized process and one that did not feel like a waste of an entire week. Although my house is in really rough shape and kids were having a hard time finding clean clothes this morning. I have one week to recover and then next week, I will be spending two full days in the same type of process with our school, only they are calling it a "charrette".

I had to look up what a "charrette" is, here is the definition:


–noun a final, intensive effort to finish a project, esp. an architectural design project, before a deadline.

We received a letter a few weeks ago from our Superintendent inviting us to request to participate in this process, and it was a very wordy and complicated letter, which used this term without a good explanation of what a charrette is. I find it interesting that an inner city school which wants to involve more diverse parents, would send out an invite letter to parents which is so hoity toity sounding that it makes no sense. And then we wonder why we only have the same type of parent involved in some of these projects.

Tuesday, February 9, 2010

Children's Hospitals and Clinics

I know that I have talked about Children's before, but I really love this place. I have been getting involved with some family involvement stuff and speaking before employees on family panels and doing stuff like that. This week, I am spending 8 hours a day, Monday- Friday at what is called a Lean Workshop.

They pick a little part of some process, and spend a week to reduce waste (waste being resources, time, money, space, etc.) and actually have a real plan to implement change by the end of the week. They have two family reps on the team. It is not like the experience of being on a committee that sits and spins it's wheels for months if not years and where you feel like you never really accomplish something.

Our task is to improve the communication process between the surgeon/surgical staff and the patient/family. They are building a beautiful new facility and we are working on some great stuff. It is really fun to be a part of a team with a common goal, and a very organized plan to reach the goal with support from above to make it happen. Stay tuned!

The Lookout

I went upstairs tonight to find my three typical brained kids on a mission. Imani was on the lookout for Akila, as the boys went through her bedroom looking for their stuff. Last night, after the 3 kids were in bed and I was trying to get Akila settled into bed (my favorite thing to do - NOT), I had to dig through a hamper in her room for some doll clothes that she HAD to have before she could go to sleep. I found Imani and Hezekiah's piggy banks in the bottom of the hamper, empty.

I had found on Saturday night that Akila had her purse full of coins, and I thought she had taken them from a pile that Hezekiah had made of coins from his piggy bank that he wanted to donate to a pro life charity at our church. So I took the coins, put them in a bag, and Hezekiah brought them on Sunday. Well, now I learned that she had actually emptied their piggy banks.

They found several more piles of coins in her room, Hezekiah's missing room key and a few other things. I just so appreciate these three kids attitudes. They were not furious like they could have been. They were actually looking at it as a search and rescue mission and having fun with it. And they decided to just take all the coins and donate them into the baby bottle for church.

It is just a fact of life in our house that she gets into our stuff. It is really difficult form them, and for us, when Akila actually uses up or ruins something that is ours, but we always talk about the fact that Akila is more important than anything she can steal or ruin of ours, and that we still love her. Sometimes, in the heat of the pain of the loss, they (and I), don't feel this right away when the emotions of being wronged are still raw, but we always get there.

Tuesday, February 2, 2010

Winter Show

Akila had her Winter Show performance this weekend, it was a long weekend. She danced four days in a row- class Wednesday night, rehearsals on Thursday and Friday night, and two performances on Saturday. I had to work at all of these, Saturday being a very long day.

Akila did pretty well considering. Last spring, I hired my niece to watch Akila backstage and to help her. She was not available this year and this was challenging. Michael and the kids came to watch the Saturday night performance, then they typically bring Akila home afterwards while I stay and clean up (I work at the dance studio).

When getting her ready to go, I could tell she had some stuff in her bag that did not belong there. I told her we needed to make sure people did not accidentally put their stuff in her bag but she would not let us look in it. She threw a major fit. She had several Brat dolls, and a leotard in her dance bag, which did not belong to her. We did not get mad, just told her that we would make sure they got back to the right owner so some little girl would not be sad. Well this did not work.

Akila melted down. Right in the middle of the lobby and tons of people. I finally told Michael to just drag her outside and sent her coat with the kids. She was kicking and swearing the whole way out. It was a lovely scene. But it is so worth it. Dancing is something that she feels pride in, loves to do, and is somewhat good at. She loves to perform also and it is fun to watch her.

Michael had a very rough ride home with her, and a hard time getting her to bed. I'm not going to lie, I was glad to not go home. We always go out for a late dinner at the end of a performance. I took my time. I got home late, and was wiped out on Sunday. I was up until about midnight on Sunday night working on a medical assistance application for Akila- those things are quite complicated. Wow.

Anyway, when I went to bed at midnight, I realized Akila was still awake. I gave her some different medication, and went to bed myself. And then I laid in bed paranoid. I finally got up, and went into the bathroom and laid down to read a book. Really comfortable, I know. But she was still not done messing around and I had to go in a couple of times to get her to lay down. She was just wide awake- the dosage is obviously wrong on this new medication. She finally fell asleep just after 1:00, and I was so ready to go to bed.

I emailed the Dr. right away in the morning and he had us increase her dose. Last night, it worked great, and tonight she fell asleep, and I am just keeping my fingers crossed that she stays asleep. I spent the whole day at the Honda dealership getting the sliding door fixed on our minivan. It has been broken for months, the sliding part. Then a month ago, I broke the handle off it as well- so the door has not been able to open at all, the driver side middle sliding door.

This has become a problem as when I have to pick up the kids from school (since Akila can't handle the bus), it is in downtown Minneapolis, on a one way street. The school is on the left side of the road so when I pull up to the school, the kids have to walk into the street into traffic to get in the door that actually works. So, over $600 later, it is still not fixed. After 3 hours, I paid and they said it was fixed. It was not and thankfully I tried it before I left. They brought it back and started to work on it again, and over 5 hours later I went and said that I had to pick up my kids and would need to leave in 30 minutes.

They hooked me up with a rental, a Honda Pilot SUV. Well this was a great distraction for Akila when I picked her up from school, she was pretty excited. When the other 3 kids got home from their afterschool classes, we went out to Perkins for dinner so they could all ride in the SUV. Michael is working late, so I was glad to get out of the house and I was starving. I did not have breakfast or lunch since I was sitting at Honda all day- unless you call the pop tart from the vending machine lunch, or breakfast.