Tuesday, September 28, 2010

Annoying evening

One of the young ladies I am in the process of hiring came over yesterday to meet with me and meet Akila. She came at 3 and the bus gets home around 3:40. We talked about Akila. I told her I doubted Akila would rage for her, but when she was at the house when I and the kids were home, she might see her getting yucky towards us. I told her if she ever gets to witness this, to stay close, try to distract Akila, and just hang and follow my directions.

Little did we know that 10 minutes after Akila got home she would be raging. Imani stayed home sick yesterday, and was watching movies in my room. When Akila was giving the PCA a tour, the boys were watching a movie with Imani. It was Akeelah and the Bee, a movie we gave Akila years ago. Akila went nuts because it is "her special movie". She would say this about any movie that she thinks is hers. Never mind that she watches Imani's movies all the time. We stopped awhile ago giving movies to any one kid at Christmas time, they are family movies now.

So, I could have just taken the movie out, but I am really sick of her winning and screwing the other kids. So she went nuts. She punched me in the rib cage, and kicked, and swore. I got her into the hallway. The PCA did a nice job of trying to distract her, asking to see her room and stuff like that. All the while going on and on about her special movie. Then, all of a sudden, a light bulb goes off in her head. And she now wants fake fingernails.

She now rages for awhile about fake fingernails. When she finally realizes we are not going to go buy any, she wants me to go look for some of hers that might be laying around the house. I exit promptly, and they go upstairs to look at her room. Finally distracted. And thankfully, I did find some fingernails in her drawer. Then we had to go into her room and hopefully find some of the glue, and praise the Lord, we found some.

She was kind of on edge all evening, and we had to go to church at 6:40 for family pictures. So, I have everyone change into colors that coordinate- I got much push back and whining as they did not want to wear what I chose. Good times. We get there, and can't find what room they are doing the pictures in. We go to a large church that has 3 campuses, and we were at the main one. We looked everywhere, and the kids were losing patience.

We then ran into the Executive Pastor who runs everything. He had just arrived for a class, so he opened his laptop and started digging for info, and was making calls also. While he was doing this, Akila laid on the floor in front oh him, and said quite loudly with attitude "Jesus Christ!". What a proud moment.

We finally found out that we were at the wrong location, and we had missed our time slot. I could have shot myself. On the drive home, I could barely contain my laughter at Akila's outburst. What was very strange about it, was that she had never before, in all of her raging and yucky language, said the Lord's name in vain. It was not a proud moment, however it still makes me laugh. How horrible am I?

Sunday, September 26, 2010

Cinderella moment

We had a cinderella moment on Friday. Our school has uniforms, which I love! But Friday is called Freestyle Friday if you have turned in your homework. Somehow they work it out so Akila almost always gets Freestyle Friday even though she doesn't do homework.

Imani, is somewhat tomboyish. She typically doesn't care what she is wearing, and it is never very flashy our unique. Jeans and a tshirt kind of a girl. Friday, she was feeling unique. She put on black leggings with a purple velvet skirt that was from a dance recital on top of it and a purple shirt. She looked cute. She even said before she left for the bus that everybody would be surprised because they have never seen her in a skirt.

They were starting out the door for the bus, three of them were around the corner and I was still helping Hezekiah find all of his stuff, when Imani came running back crying. She had a barrette in her hair, one she had found in the hall that had purple ribbons on it, and had put it in her dread locks.

Akila noticed the barrette, and went berserk as it is hers. She tried ripping it out of Imani's hair. It totally reminded me of the cinderella scene where the step sisters are ripping her dress apart after they see it is made of their discarded items. It was so sad, my heart broke for Imani who was so proud of the outfit she had put together.

We did not have that much time to deal with it and process it before the bus came, but after school she seemed totally fine about it and said it was no big deal. But I know that things like this can start to break you down after awhile. Imani is a precious and sweet child and I need to think of some more things to make sure that she knows this.

Tuesday, September 21, 2010


The med change has greatly helped. Akila is now taking one of the risperidone in the morning, and one after school, instead of at bedtime. We started taking it last week when she got home from school, but that was challenging. She would be explosive when she got home and resistant to taking the med.

So the school is giving it to her at the end of the school day. Amazingly, it is not hard to swallow, and she doesn't hate it, and it doesn't hurt her throat, and so on and so on. I am hoping this will continue to help.

I feel like I have been working non-stop on paperwork the last two weeks. Each time I think I'm through, I get a new item in the mail from the county requesting more (between the TEFRA, PCA, and requesting a DD case worker, it's nuts!- and I haven't even started the SSI application process that I am thinking about doing). Had to dig out of the archives her SS card and birth certificate today. I need to get more organized.

WCCO TV was at our school today and Imani and Hezekiah were taped for some kind of thing that will play on some day. Is that vague enough for you? I was trying to understand what they did, and it was clear as mud. Imani was able to tell me that it was channel 4, and that they were by some TV guy with white hair and she couldn't remember his name. I said, "Don Shelby" and she said yes, that's the guy. She thought it would not be today though. I'll have to try to ask a teacher tomorrow, if I remember.

I'm meeting my blog buddy, Linda, tomorrow- can't wait!!!

Sunday, September 19, 2010

Broken things

Our life is so full of broken things. Some days, it seems to be our spirit, but mostly, it is our stuff. I am actually in good spirits today, but Akila has been struggling on and off. I am thankful that the Lord has given me the patience today, and that Michael let me run a few errands alone.

Unfortunately, when I was running errands, Akila lost it. I don't know all that occurred (as Michael is now running errands), but I know that my Swifter Sweeper thingie was broken. Yesterday, she broke the cord for my laptop. At least I am praying that is what is broken, and not the plug in part of the laptop.

She was escalating yesterday, so I quickly scooped up both of our laptops which were in the living room. I just pulled the cords out of the laptop and left the cords. As I was leaving the room, Akila had my cord and was using it as a whip. She whipped it against a table a few times. Low and behold, it will not plug into my laptop any longer although it looks normal.

Michael is out trying to replace it right now. We have been fortunate, as she has not really destroyed a high priced item yet or anything that is really precious. We have holes in walls, an electrical outlet that she kicked in, a broken window, and tons of other items she has destroyed, but nothing that is really hard to lose- yet. I say yet again, as I know it is coming. I handle things better when I know in the back of my head they will come some day. And if those things don't happen, then I am very happy to have been wrong- but I don't think that has ever happened yet.

I actually am wrong. One of the most precious things in our life is broken. My sweet Akila's brain. And I need to constantly remind myself that it is not her fault.

Wednesday, September 15, 2010

Paving new ground

I am a trail blazer. I am the first parent to ask our band teacher to discourage their child from joining band. I am so proud of myself. Ha. Not something I ever imagined I would be doing as a parent.

I emailed the band teacher today, just to give her the heads up on our situation with Akila in case Akila is trying to "work her" on this joining band thing. I know Akila well. Of course, she told the teacher today she was joining band and going to play the trumpet. The teacher said "great!", not knowing the situation. She said she is going to think about it and maybe have Akila's aide have Akila out of the classroom doing something important when they come to do the instrument demo's.

Obviously, we are the ones responsible for Akila and her decisions, but it is very helpful to have the school staff backing us up. I was foreseeing a situation where we were telling Akila no, and she was telling the teacher we said yes, and it getting kind of silly. Once again, I need to say how much I appreciate our school and the great staff. Whenever I have some goofy request like this, it doesn't seem to phase them, even if it is a new request.

Try again

I think I mentioned that I called Hennepin County last week to request a DD Case Worker (Dev. Delayed) and was given the run around. My intention was to call again and get a different person and hope for better assistance.

I finally got around to making that call just now and what a difference. The lady was great, took the referral over the phone, said someone would be calling me to set up a meeting, and she is mailing me the packet full of paperwork. Since I finally am through the initial hurdle of the paperwork for TEFRA, I feel I can handle a new batch. Although my house is swimming in paperwork that is totally unorganized. Something on my to do list.

This lady was very helpful, and asked me what has been going on. She had the brilliance and compassion to sympathise with me on the challenging behaviors and to say we needed to get some help. Just what I needed. I wish she could be our case worker. Crossing my fingers for someone as helpful.

It is amazing how much just being helped like that can help. Last Wednesday, (my day of crying), was actually fueled by the call I made to the county with no help received. My call to them was a bit of a cry for help and I was not helped. I am feeling better about our options lately, and am thankful for all of your prayers and support.

Tuesday, September 14, 2010


I forgot to mention the fun we had driving home from dance tonight. I had packed snacks in her dance bag before she got home from school. Dance is from 4:30-6. I had a meal in the slow cooker as the boys had football starting at 6:00, Imani had piano at 7, Zeke finished football at 7:30 and went to piano at 7:30, Hezekiah finished football at 8, Michael was running around crazy.

So, I was trying to get home after dance to eat the meal in the slow cooker. We have made the decision that in the month of September, we can not eat out at all. No fast food. No restaurants. No coffee shops. No gas station food. Nothing like that. On the way to dance, Akila was hungry. I tried to get her to eat a snack before we left, with no success. I did not push it as I had put several snacks in her dance bag- only to learn that she had taken them out while changing into her dance clothes.

Not to worry. I am sometimes prepared for all situations. I had two different kinds of emergency snacks in the car (impressed?). She did not want either. After dance, on the way home, she wanted to go to McD's, immediately. I replied to her in a french accent. She laughed hysterically.

The entire 25 minute drive home, I tried every accent I could think of- and they were horrible. She kept on coming back to the double cheeseburger that she desperately wanted, but I was able to distract her each time. She really liked my Norwegian accent, it made her laugh really hard. I had to perform for the neighborhood kids when we got home even, that's how good I am.

Anyway, I wish things like this would always work. It is not the first time I have tried something like this. But it is the first time the accent thing worked. I will have to work hard not to over use it. Don't cha tink dat would be a bad ting? ( I don't know how to spell in Norwegian either).


The band program is recruiting again at school. I had to delete the word stupid in front of band program. I love the band program. Imani is in it, the teacher is great. But every year, when they go to the classes, hand out the letter, we have an issue with Akila about joining band.

We usually just talk about how Akila is the dancer, and Imani, Hezekiah and Zeke are the band players (they all 3 take piano and Imani started the clarinet last year). Akila tried piano when she was younger. Her dyspraxia makes it very difficult, not to mention all the behavioral issues around practicing an instrument. Her neuro-psychologist even said after her testing that instruments would not be a good idea- which made me feel better as I felt lazy when we quit piano.

Anyway, tonight, she got out of bed after being tucked in, to go to her back pack and get the letter. She wants to join. I said dad and I would talk about it. Bedtime is not the time to say no. So, once again, we will have try to put the positive spin on it (which is truly a true spin), where we say that the Clark band consists of 3 musicians and a dancer. Every real band needs a gifted dancer.

If this doesn't work this year, I may have to try the cell phone trick. When she gets begging for a cell phone, I tell her that if she can give me one week of no raging, no name calling, no hitting/kicking, I will get her a cell phone as she will have proved to me that she is mature enough to handle one. Once again, I truly would get her one if she accomplished this. I may have to say the same thing with band. One week of no raging, and she can join band.

I know, I'm cruel. But it works.

Monday, September 13, 2010


We had the PCA assessment today. We qualified for 21 hours a week. I don't know if that is good in the realm of things, but it sounds absolutely fantastic to me. I have had a skip in my step tonight. It will take me several weeks to get something set up, but we start accruing hours today. I can't tell you what an answer to prayers this is.

I had to pick Akila up from school at 12:30 for the meeting. This was very hard for me to do. Just seems wrong. Ha. She was in typical Akila form during the meeting. The nurse did not ask her any questions, or ask her to be in the room with us. Akila was in and out the entire hour. At one point, she walks into the dining room with a stack of credit cards. I had locked up my wallet in the safe so I had to go see if I left it open or what. She had been digging in some drawers in the kitchen and found some old ones that had never been activated. I had a little tussle to get them away. Perfect.

Then she requested some lemonade, this was after I had just made her some popcorn. We are out of lemonade. She got quite upset. Quite. She was starting to escalate, but did not go too horribly far. Just far enough. Then she kept on going outside and I was having to stand in the window to watch her. The nurse asked if she is always this demanding. I said she hasn't seen anything yet.

At one point, the nurse asked me if we have a DD (Developmentally Delayed- I think) Case Worker. I laughed. I called Hennepin County last week to request one and was given the run around. I have been planning on calling again and hoping to get a different person. This nurse told me it might be a good idea to have the school social worker refer us. Maybe a quicker in. Not sure.

My favorite part of the assessment, was when the nurse asked me if I was a single parent. I said no, I have a husband. I was starting to say that he works a lot of late hours, but Akila was in the next room yelling that I am divorced. What? News to me. Especially since we have never mentioned divorce, and we don't even really argue. Akila thought it was hilarious and came into the room with a big smile trying to convince her that I am divorced. It was kind of funny. I'm sure the nurse had no idea what to think. Maybe it helped my case, being a single mom and all.

Friday, September 10, 2010

Two decent days

Four days of horrific raging, Sunday-Wednesday. Thursday and Friday, she did not really rage, not horridly at least, not to the point of restraining. I am so relieved.

Yesterday after school, I could tell right away she was in a better place emotionally. Today, she was a bit on edge, but not bad. We did go to the Psychiatrist in the morning and have a new med plan we are going to try. I just hate the trial and error phase and the fact that we have to prove to the stupid insurance company that the lame meds don't work before we can get the ones we all know will work better, but are more expensive.

Our two neighbor kids came over tonight after school to play and Akila handled it well until about 7:00, which is pretty good. Their mom was over for awhile talking to me about her FAS daughter who is currently in residential treatment, when Akila started to lose it. I said it was time for them to go home, and Akila came down to talk to me. She was mad and starting to slowly escalate, but she was happy I was telling them it was time for them to leave so she did not escalate too far. Just far enough to call their mom an F-ing B. Lovely. At least she lives it and gets it.

I woke up this morning really early with the beginning of a migraine. I use to get one every one to two months and have only had one in the last two years since I saw a neurologist who put me on high doses of vitamin D and magnesium. I have been bad lately at taking my vitamins as I cut down in the summer due to sun exposure. Have to get back in the habit. I got up and took 4 Aleves (which he told me to do), used a Rx nasal spray for migraines, and drank a mountain dew (which he also told me to do). Headache was mostly gone by 9 am and totally gone by 11. Thanks be to God!!

The best news of the week, is that the county called me yesterday to set up the PCA assessment and it is scheduled for Monday- I figured we were over a month away from this appt. I know that it will still take quite awhile, but I am so hopeful.

Akila starts dance on Monday also. She will have dance twice a week, on Mondays and Tuesdays. She is going to try pointe ballet. This will be interesting. It has been a dream of hers forever, but it is such a disciplined form of dance that we are not sure how she will do. I have hired two teen dancers to assist her in class (which mostly means to make sure she is not being mean to other dancers). I really hope she is able to make it as she is a good dancer, and it is kind of her thing. It is one thing she is good at, that we can encourage her on and help to build her self esteem in.

Wednesday, September 8, 2010

Hard day

I have had a hard day, and Akila isn't even home from school. The emotions of the severity of her behavior has hit me. I have spent the day calling the county, emailing Dr.'s, friends, researching, etc. In between emails and calls, I cried. And I cried.


I didn't get this post finished before the bus arrived. She raged again all night, well, she settled down at dinner time, after about two hours of raging, over wanting fake fingernails (which she currently is wearing, but wants different ones). I am being told different things by different people, and need some time to think about what strategy we need to take with her behavior.

Tomorrow (or today I should say), I will be at a FASD workshop at the U of M all day. And then on Friday, Akila and I will go to see her new Psychiatrist for a med adjustment, which is obviously needed. I am off to bed now, praying sleep will come quickly.

Tuesday, September 7, 2010

New level

I can't even think of what to title this post. I should probably title it rambling, or whining, cuz I feel a rant coming on.

Today was the day I have been counting down to for 90 days. It was lovely, until 3:30, or should I say 3:40. The first ten minutes after the kids got home, Akila was quiet as all were telling me of their first day of school. Sometimes it takes her a little before she is ready to talk so I was waiting. Then she started in on wanting to get her hair done. Oh boy, here we go.

I said no in all the ways possible without saying no. Didn't work. I also said no, about a thousand times. Escalated into a rage. She got violent, destructive. I ended up restraining her, until about 4:30. Then she kind of settled down, but not really. Angie was coming to get her tonight and I was so thankful for that as I could tell she was tightly wound.

Angie arrived, said she could choose to go to a movie, or bowling. Akila chose the movie. She wanted me to give her money so she could buy lip gloss. I said no, they weren't going to a store, and she did not need lip gloss (she has at least 20 lip glosses). I even said I would give her some money for candy at the movie theatre. No go. She escalated, and escalated. And poor Angie got to witness it all.

She started to hit, I had to restrain, it was not pretty. We went out to the car at one point, I was hoping this would distract Akila and she would just go. Instead she picked a mongo stick, more like a tree branch, and was threatening to hit me with it. I took it from her. She was still being violent. I tried to go in the house thinking she might just go with Angie. No go. We all ended up back in the house. I finally gave her the countdown to if she didn't stop and just go with Angie, that Angie would have to leave. She then whipped me in the face with a jump rope (not super hard, but it stung a little).

So I had to say thank you Angie, but it isn't going to work (I really am sorry Angie that we wasted your time!). Angie got ready to leave, then Akila begged to go. She followed Angie to her car, I had to physically drag her away from Angie's car. Angie pulled away. At this point, I would not been surprised to see Akila's head spin like the scene from the Exorcist. She had already been being the most angry and violent that I had seen in a long time. She took it to the next level. She went nuts. I mean nuts.

We went back in the house. She ended up needing to be restrained again as she was being unsafe. All the while, Imani and Zeke are playing at the neighbors, but Hezekiah has been in and out of the craze. I was sitting on Akila in the living room, restraining her, she was out of sorts, drooling, and carrying on about lip gloss, and I lost it temporarily, emotionally. A few tears were rolling down my face as it hit me that we were in a new phase, a new level. Several times a year, we are at a new level of stress/issues/problems with Akila's FASD behaviors. This was a new one. She had raged violently in front of someone else.

In the past, she has usually been more restrained around people, other than our immediate family. She might call a name, or curse very quietly, and even kick me in a restrained fashion, but never rage. And she really let loose. The same goes for in a store. Normally, she would in a restrained way, kick my shin, or curse quietly. Yesterday, she threw a major rage in a crowded thrift store. We left with nothing. Outside of the store, in front of tons of people, she bite me, kicked me, cold cocked me in the face, and was just seething with venom. We are at a new level.

As I was sitting on Akila tonight, with tears rolling down my face, Hezekiah walked in the door. He immediately started crying when he saw me crying. I could do nothing to comfort him. I just told him to go back outside and to Ms. Kathy's house until I called later. Kathy then called, and drove my boys both to football practice at 6:00. Shortly after 6:00, Akila kind of settled down, but was still full of anger. She stared at me with an evil look, and was completely rude and her mouth was out of control. I just ignored it.

At 6:45, she went to the neighbors to play, and for that I am thankful. Michael got home, I went to football practice, and got home at 8:15 and she gave me a big hug cuz she was so glad I was home. Oblivious to anything that occurred for practically the whole night. 3 hours of raging. 3 hours.

I just emailed her Psychiatrist. We will see if we try anything new on the medication front. I am exhausted. My knee is killing me, and I have that radiating pain out of my lower back that you get when you are really stressed. Thank goodness there is school tomorrow so I can rest up. I am not sure if this had anything to do with the transition back to school. Usually transitions like this don't phase Akila too much like it can with other kids. But maybe it is now.

I called on Friday about how to qualify for a PCA. I had to do a parent referral. Now I wait 2-3 weeks for an assessor to call me to schedule an appt, which will probably be 2-3 weeks out. Let's pray that by the new year we have some support.

Thursday, September 2, 2010

4 days

4 days.


I am wiped out. Last week of summer, I'm not even home. And I'm exhausted. I am doing another LEAN workshop at Children's Hospital this week, M-F from 8-4:30. It is mentally exhausting. We are working to improve the process of transferring a patient from the Emergency Department to a hospital room. Good stuff, but exhausting. Did I say I was exhausted yet?

I don't know how some of you work full time and then parent challenging children. I come home, wiped out, and restrain for 1 1/2 hours while Akila rages. Not that it would be easier being home all day dealing with the issues, but once their back at school, at least I will have the day to re-energize. I need to start seriously working out so she doesn't get stronger than me.

Anyway, just wanted to let you all know (all 10 of you), that I'm here. Doing OK. Had a breakdown last night. Finally got word this week that we are approved for MA/TEFRA, and got a letter in the mail from Hennepin County. It was clear as mud. They are all horribly difficult to translate. It had $903 a month listed under each month back to February when Akila's MA is retroactive to. I thought it meant that was our monthly fee. Several years ago when I first looked into TEFRA, when I figured out the calculator thingie, it was around $900/month. We obviously did not apply. Then when I did it last winter, I realized it was only $112/month or so. I had Michael re-figure it and he came up with that. We were quite excited and started the process.

So this letter showing my original thought, FREAKED me out. I even cried briefly late last night. I have realized how much I am counting on getting some PCA help. I hope to goodness we qualify. I think I might have a break down otherwise.

I called Hennepin County this morning, learned that the $903/month is the max monthly income that Akila can make. The worker said she probably isn't making that at her age of 11. I said she would probably never make that much a month in her entire life. I also asked about getting reimbursed for some past bills since it is retro to Feb. 1. He said to have the providers bill the state. I said we had already paid. He said to have them still bill the state, and then the provider would owe us money. Brilliant system. Let me call 3 different clinics, 2 different pharmacies, have them re-submit everything, get paid, then cut me checks. Instead of me giving the state all the bills we have paid and proof of payment. Brilliant.

I also asked him if the county had any committees where parents were involved in making the communication process smoother. I said I knew he had nothing to do with the forms, but they were very difficult to understand. He said they are state DHS forms. I asked him to check with his supervisor and call me back so I would call the right people at the state to request to be on a work team or something to improve the process. My phone call to him was a total waste of my time and his. If the letter had not been so ridiculously unclear, it would have helped.

4 days left by the way. 4.