BTW

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:

char⋅rette

  –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.

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.

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.

Little hope smashed

Akila had a pretty decent evening last night, and I was very thankful. We are in a two week or more period where Michael has to work late, it is a busy time of the year for accountants. I was really hopeful as we tried a new sleep medication with Akila. I put her to bed without the usual resistance and came down to the dining room.

Typically, we put her to bed last and then try to plant ourselves because if she hears us moving around, she is more likely to try to call us back. And unlike my other kids, if she calls and you don't come, you are in for many issues. She will begin to rage, and totally lose it. It is really hard as I don't want her to wake the other kids, or to keep them up. I was in the dining room working on my computer (this is also a super busy week for me as we have a big dance performance at the dance studio this weekend), and I was so excited that she had fallen asleep, I almost called Michael to tell him about the success of this new medication.

When I finally felt it was safe to move, I went upstairs to find her in my bedroom watching a movie. Nuts, my little bit of hope in this new medication was smashed a little. This medication is suppose to help her to stay asleep so I was still hopeful that it would help once she fell asleep. I brought her up to bed and we had our usual resistance that I had been excited to avoid a 1/2 hour earlier or so. I put all the kids including Akila to bed at 8:15 and Akila was still awake at 10:00. Then she finally fell asleep. I worked on my computer until 12:50 am and went to bed. She woke me up at 2:00 am.

I gave her some middle of the night meds. She was still up at 3:00. Michael tried to help. At 3:40, I heard her downstairs with the dog and a movie. I went down and we verbally fought a while before i could get her back up to her bedroom. It was 4:00 by this time. Then I could not get her to even sit on her bed as she was not tired and couldn't sleep. I tried to explain that she won't be able to fall asleep if she doesn't lay down and try. This went on for another 20 minutes or so.

I finally went to bed at 4:30, only to hear the dog start barking just before 5, which he doesn't do anymore. I thought she was back down there and went and checked and she had fallen asleep. During all of this commotion, Hezekiah had awaken and kept coming out of his room and looking into Akila's room, which was inflaming her even more. I don't think he fell back asleep, as at 6 am, after I had been sleeping for 1 hour, he woke me and the other two kids up and wanted to play the Wii.

So, the new sleep meds did not work the first night, not too excited to try them again, but I will. It was pretty cold this morning, and I am now driving the kids to school. We were about 8 blocks from home on the way to school, when the van got a flat tire this morning. I was in my pj's. Had to wear Zeke's hat as I did not have one, and it has a bunch of long multi colored string that hangs down from the top of it. I was one hot looking mama on the side of the road changing a tire. I called our neighbor Kathy who came and got the kids and brought them to school, she is such a life savior to our family.

I did feel kind of bad though, I finished the tire about 7 minutes after she got the kids- I could have brought them. You just don't know how smoothly a tire change is going to go. It took about 25 minutes, not too bad in the sub-zero temps. And the really good news, is that the garage was able to fix it so we didn't have to buy new tires.

Progressing or regressing

I was thinking about it today, and Akila's behavior is much worse than it was just a month ago. I was thinking that she is progressively getting worse, or regressing I guess.

Last night was rough. Michael had to work late, Akila was violent, she hit me several times, was swearing, throwing things, swiping stuff off tables, etc. I finally ended up restraining her, three times. This was all at bedtime. So as I am restraining Akila in her bedroom, I am trying to tell the other three kids what to do to get ready for bed.

It was a rough night, I was literally sweating by the end of it. And we had a rough morning, thankfully sandwiched in between was the great IEP meeting and a good report from school on her behavior- that is good. She had 5 nights in a row of getting up between 3-4 am. The house is totally trashed. Yesterday, she was up early, and excited that it was lightly snowing outside. I got dressed and came downstairs. I thought she was on the computer, and after about 5 minutes realized she was not. I went through the house looking for her, and realized she must be outside playing in the snow. As I was about to go outside to look for her, she came through the front door.

About 10 minutes later, I see that she has a pack of gum that is not hers or mine. She sees me looking at it, and tells me she walked over to the Handi Stop and bought it with a dollar that Angie gave her. This was all around 6:45 am, it was still dark. We live in North Mpls, she walked to Broadway Ave and crossed the busy street. Not good.

I have been meaning to get some kind of door alarms, and you can be sure that I did last night. I also emailed her Dr. about switching her sleep medication, and went and picked up a new Rx today. I hope it helps.

On a positive note, I think that we might finally be able to get Akila on MA through the TEFRA program, this would be huge. Keep your fingers crossed as I muddle through a boat load of paperwork.

Grateful for our school team

Akila had her re-entry meeting at school this morning, which was not really a re-entry, but an IEP review kind of a meeting. I had several things that I wanted to bring up, and I didn't have to. The school staff brought up all the issues I was thinking about. This is a true sign of an excellent team that is working hard to try to help Akila to be successful.

One very awkward item (at least awkward for me), was when we talked about homework. I absolutely hate messing with Akila on homework, it is a huge battle. Her teacher and para were coming up with some great strategies to make up some worksheets specifically for Akila in math, and I jumped in and brought up the honest to goodness fact, that Akila is not capable of doing homework on weeknights. She is so volatile, and out of control, that I could spend the entire 4 hours afterschool fighting with her to do homework.

Sundays we don't get home from church until the meds are pretty close to worn off, leaving Saturday mornings. Well, we are maybe actually at home around 50%of Saturdays, and to spend these precious hours when she is most enjoyable, doing homework, does not make sense to me. Michael and I spend so much time with Akila, just trying to keep her occupied and calmed down, that if we had to spend an hour or two every day with her on homework, our other kids would get nothing from us.

So we decided to put "no homework" in her IEP, and I am so relieved. I am so relieved. We really haven't been doing homework, but even the little bit that comes home, can cause major stress. Some mornings, as she is leaving for school, she will meltdown because her homework is not finished. I tell her it is fine, but she rages about it anyway.

We also talked about some kind of wording in her IEP for different consequences for certain behavioral issues, instead of suspension. I of course love this idea. When I worked in the Bloomington Schools, I was on a team of teachers and administrators and we developed a program called PAUSE which stood for Placing Accountability Upon a Student's Education. When a secondary student was suspended, instead of getting a day off at home, they came to the youth center that I ran, and we had hired a social worker, a special ed teacher, and a paraprofessional, to work with the students. The school teachers would email the PAUSE staff with their homework and they would try to get caught up. So the teacher worked with them on the academic catch up stuff (as typically students who are being suspended are behind academically), the social worker would lead some group time and try to get to some of the root causes of the suspension, and the para would assist with various things. It was a great program, I'm not sure if it is still there- budget cuts love programs like that.

The thing that really bummed me out, was that I learned that Akila has started to be really rude to her Aide- calling her names, telling her to shut up, swearing under her breathe at her, etc. This was sad to hear, but not shocking. I have always told her IEP team, that when a behavior starts at home, it usually follows at school within 6-12 months. She is out of control at home, calling names, swearing, etc. But it made me sad. Her para is absolutely amazing with Akila, and I would hate to lose her. I will have to let her know that Akila only acts like that with people she really loves and feels close with, if that is any consolation.

A few positives about suspension

There are a few nice things about Akila being suspended, here they are:

• I get to be around her when she is on her meds and much more tolerable.
• I get to be around her one-on-one. When her siblings are not around, she is less likely to get upset over things and therefore there is much more peace.
• I have the opportunity to get the other 3 kids off to school in the morning peacefully and it takes a lot less time.
• I have someone to help me entertain the puppy all day.
• We are able to get homework done. She is totally incapable of homework on school nights as her meds have worn off and she is totally out of control. Sundays, her medicated time is pretty much taken up by church- we get home about 2:00. Saturdays is the only day that we can possibly get it done, and sometimes we have places to be or other stuff going on, and are not able to get to it. It is impossible to do homework when she is not medicated.
  

The challenge is not to make this nice for her so she figures out to behave poorly at school means a nice day at home with mom. So far, I know that is not why she has acted up at school- it is the lack of impulse control that has gotten her into trouble and the need to be liked by others. But her short term memory issues are making it hard for her to understand that she is on punishment right now.

She asked if she and I could go somewhere and have a special lunch yesterday. The answer was obviously no, and I explained why for the umpteenth time. She wants me to buy her new tennis shoes, which she needs, and I said no, and I explained why. She wanted a can of pop last night, and I said no, and explained why (we don't let the kids have pop on weekdays, it is a special treat sometimes on the weekends). She wanted to go to the grocery store with me so she could buy a treat, and I said no, and explained why. She wanted to bake with me yesterday, and I said no, and explained why. Today, she will want to do several other special things, and I will say no, and explain why for the umpteenth time again.

I would like to go to the health club today as I desperately need to start going again, but she loves the child care at the club so I am not sure that would be a good idea either. Although, really, she doesn't make the connections that I would want her to, that my other kids would. Maybe we will go, it would be good for my own mental health, that is for sure. I'll see if she is up in time for me to make my class.

Getting called in to the Princpal's office

Yesterday, Hezekiah, Zeke and Akila all started their afterschool classes for the new session. The afterschool buses are usually late on the first day and I expected this. The bus was scheduled to arrive at 5:18, which is 20 minutes earlier than last session, not sure if that is a realistic time. They weren't home by 6:00 so Imani and I walked down to the bus stop. And waited until 6:30. I tried to call the school and got no answer. Shortly after 6:30, I received a call from someone on the bus saying they were stuck and waiting for a new bus. They arrived home at about 6:40 then.

About an hour later, I received a call from a little girl's mom telling me that Akila and another girl had been hitting her daughter on the bus and she had welts on her face. This is a little girl in 1st grade, who Akila has been friends with. Akila is in 5th grade. I apologized, said I would talk to her about it, told her it was not OK and I was glad she had called me. She said she had called the school and would be going in to school in the morning, which made sense to me.

I talked to Akila about it last night. About the fact that she is 4 years older than this girl, and about how scared this girl must have been to having a 5th grader hitting her, let alone one she thought was her friend. We had been online looking at new shoes for Akila that we were going to order, so I put a stop to the order and told her I would not be getting her new shoes at this point as I was disappointed. The night went south from there. Very south. Bedtime was rough. Very rough.

This morning, I sent her to school and anxiously awaited the call from the school. I even tried to call the Asst. Principal a few times. Then the call came, I went down to the school and went to the Asst. Principal's (AP) office. It is a very weird feeling I have learned. I remember in my last year of elementary school, my friends and I had never been in trouble or sent to the Principal's office. In our school, you had to sit in the hallway when you were in trouble. We always knew who was in trouble as they were sitting in the hallway. On the last week of 6th grade, my friends and I went running down the 2nd floor hallway during lunch. We were not suppose to be upstairs during lunch. We tried to get caught, we were, and we had to sit in the hallway. Just wanted to experience it I guess. That was enough for me.

Now I get to experience it as an adult, and I have not idea what to do or say. Honestly, I had talked to Akila about it last night, given her a few consequences immediately, and said we would wait and see what happened today. So, when I sit in the office with her and the Principal, and her fabulous Para, I pretty much just keep my mouth closed. I try not to make excuses, I try not to lecture, as I did last night, and I know that I will do more at home. But I honestly wonder what the staff must think.

Do I come off too quiet, not hard enough, complacent? Part of it, is that I just feel deflated. I don't know what else to do. We can talk to Akila about other choices she could have made until we are blue in the face, and it doesn't seem to help. Part of it is selfish. Suspension is a punishment on my own mental health, seriously. I understand that the school has to have a consequence, and I understand that this is serious. This must have been scary for this little girl. But I honestly silently cried the whole drive home. And thankfully Akila was quiet and did not speak a word. I think she sensed my emotions and I am very thankful for that.

The truth is that I know we are slowly entering a new phase of life and it scares me. She has been suspended three times this year, and I don't expect it to stop. One thing that I am going to do that should help greatly, is start driving the kids to and from school, I have been putting this off for awhile and it is time. It is just a little challenging being that their school is downtown, but I will do it and I will like it. :)

4th and 5th grade is when the FASD books say that these kids usually start to have many more challenges, and they aren't lying. We have a long road ahead, and I need to get my head back in the game. I just need a day or two to feel emotional first, I think.