Tuesday, April 29, 2008

Good Day, Slightly Annoying Ending

Today was a really good day. I am not going to let the picture above bother me. Why should it bother me that Akila and I bought these shoes this morning, and she colored them with a marker when I put her to bed? I am the fool who didn't find the marker in her room. I am the one who has been procrastinating going through her room with a fine tooth comb for the past month. I should know better. Many friends say that their "normal" kids would do something like this. Why don't my other three really do things like this? Why does Akila doe this type of thing so often. Oh yeah, her brain is damaged. I must remind myself. I am not annoyed. I am not annoyed.
We really did have a good day. It started off with a good night of sleep (for all of us). Imani and Hezekiah woke me up at 6:30 to ask if they could go downstairs to play. I said sure and fell back asleep. I woke up at 7:00 to those two plus Zeke playing nicely. Akila had an appt. with the psychologist this morning so I was going to let her sleep in a bit. Hezekiah has been an absolute bear to wake up the past several months and has been waking up really crabby. So I was very happy to not have to wake him and to see his good mood. Akila slept in all they way to 7:15. Unbelievable. Normally I wake them between 7:00 and 7:15, and they are dead asleep. But she was in a good mood and we all had a good morning.
Akila's Dr. appt wasn't until 10 so we stopped at Target to run some errands. We got some socks and the new shoes featured in the above picture. We then went to her first appt. with the psychologist (I met with him a few weeks ago). It was very interesting. Akila was very well behaved and I have a hard time not being a pessimist. It can be so frustrating to hear them asking her what happens at school that makes her so mad by the time she gets home from school. I wanted to blurt out that it doesn't take a rocket scientist to figure out that her wiring is all messed up and that there is no huge issue with a bully or something going on at school. But I totally get his need to dig and get to know her. We are trying a somewhat new twist on a behavior chart and it was motivating her today and for that I am thankful. It only cost a couple of hundred dollars. Siiiggh.
She had after school and missed the activity bus, again (she did last week as well). I had just started the grill and some baked potatoes when I received the call, but didn't let it annoy me. Michael was home early and hanging with the other three. When Akila and I got home, he had actually got the food all started and almost done, and without me asking him to. What a great day. I even thought bedtime was going smoothly..... until Akila came out to tell us that Hezekiah was bugging Zeke (the other three are currently sharing a room, and Akila can't stand any noise from their room-it's lots of fun). I went upstairs to deal with it when Akila told me that she decided she didn't want plain white shoes and was coloring them. In the store, of course, she insisted on the plain boring white ones. I took them, and the marker, and came to the computer. I am not annoyed.

Saturday, April 26, 2008

Summer's Approaching, I Think

You wouldn't know it by the ridiculous snow outside, but summer is almost here. I think there are 29 days of school left, if I'm counting right. I am a summer girl. Love summer, love the sun, love the beach and all that stuff. I once longed for summer. In the last several years, I have started to dread it a bit. This is because 3 months with Akila home a lot more, is a tough idea to swallow. Last year at this time, I was trying to find activities for all the kids, and in particular, for Akila.

I found a program in North Mpls where we live last summer that was a day camp, all day every day for the entire summer. I called the coordinator and asked if we could do 2 or 3 days a week as I didn't want Akila to be gone everyday. She said that wouldn't work out. It was even a free program. So we did other things and it worked out fairly well.

Well, as I sit and reflect on how much Akila's behaviors have gotten more challenging in the past 6 months, I am ready to sign her up for the entire summer, and I barely feel guilty about it. I called the program last week, they won't be running it this summer. There goes my idea. Now I'm looking for a different program, that is affordable. I do have to be very thoughtful on what I would sign her up for, especially as I think about the recent problems she has been causing in the dance classes.

I did write a letter and handed it out last Monday to the dance parents. We will see if anyone says anything about it this week. I also sat through the class and Akila was very good. She was quite obsessed with me watching her the entire time. I was basically not allowed to blink or she came over to me. It worked fairly well.

I'm exhausted and going to bed shortly. I got on a bus with my former colleagues and Youth Advisory Council members on Thursday night at 10 pm, drove all night (and did not sleep a wink) to the St. Louis, Missouri area. Arrived there at 7:30 am, changed clothes, had breakfast and went to Evan's funeral at 10:30. Left Missouri at 2:00 pm and arrived home last night around midnight. The funeral was lovely and I think his parents were quite moved to have a busload of Minnesotans show up. He was a great young man.

Got to get up this morning and bring all 4 kids to the dentist, not fun (especially when exhausted). It actually went fairly smoothly compared to what Michael and I were expecting (last time, Akila had some difficulties). I am very ready for this next week to start and to try to get back into the swing of a "normal" life. Dream on Barb!

Sunday, April 20, 2008

Dance Letter

We missed dance class last week due to a conflict and I was glad as I haven't had time to write a letter to the parents yet regarding Akila's behavior. Now the class is less than 24 hours away and I still haven't done it. In the morning.

Last Monday when we missed class, a different parent (not the one who wrote the email which is in an earlier posting), pulled Juli aside. She told Juli that her daughter had been crying on Sunday night because she didn't want to go to dance class because Akila is so mean to her. Great. We have now decided that I am also going to sit in on the rest of the classes for the year. This is a bummer for many reasons, one being that the 1.5 hour break was nice on Monday nights.

I have told Juli that when we make the class schedule for next year, that she has to teach a 4/5 grade class so Akila will be in her class. Akila needs a very strong experienced teacher, and I need a break!!!

A Long Heavy Week

Dealing with my friend Bernard's death took a tole on me last week. His visitation was on Thursday night and a few hours before, I found out my Aunt Jean had just died. She had been sick with lung cancer for several months. Bernard's funeral was on Friday and it lasted for over 3 hours, but was a beautiful homegoing for him and a great reminder for me of how fortunate I was to have know him. I worked at a lock-in for the teenagers at the dance studio on Friday night, got one hour of sleep and then got to go to Emily's wedding shower and attempt to give a devotional/talk at it.

We also had Zeke's date night last night so by 9 pm I was ready to crash and wake up to a fresh day and try to get rid of the "heaviness" I have been feeling due to the deaths in the last week. Then my friend Angie called me this morning to tell me that one of the students I worked with at the NYLC died in a car accident last night. His name is Evan Dalgaard and he attended the last National Youth Leadership Training I directed in 2005 and then was on our Youth Advisory Council. He flew in for Bernard's funeral so I just saw him on Friday (Evan lived in Missouri). My heart is heavy and I am so sad for the other Youth Advisory Council (YAC) members, who have had a difficult time grieving Bernard's death. Bernard's oldest child, Geoffrey, is on the YAC and was friends with Evan.

Here is a picture of Evan, please keep him, his family and the YAC in your prayers:

Tuesday, April 15, 2008

Bye For Now Bernard

The world has lost a great man and I am deeply saddened. In my field of youth work, I have worked on and off with a man by the name of Bernard Gill for close to 20 years. Bernard's lovely wife, Ruthanne, died about 10 years ago of Breast Cancer and he has been raising his 4 beautiful children with exceptional love and unparalleled standards as a single dad. Last Thursday, April 10, Bernard suddenly passed away at the National Service-Learning Conference(http://www.nylc.org/). I had seen him that day, and led a diversity workshop with his oldest son, Geoffrey who is 19 and on the Youth Advisory Council. Four hours after I left, Bernard died.

Please keep his four children in your prayers, I may not have the spelling or ages correct, but the Lord will know who you are praying about: Geoffrey-19, Vanessa-17, Amira-14, Hellena -12. Bernard was a man of deep faith and solid convictions. His love for the Lord was apparent in all aspects of his life.

Bernard had a brightness about him and a spirit of generosity. He was a fun person to work with and always made me laugh. When I was stressed out, he lightened my mood. When my mom was sick, he was always there to listen. He came to my mom's funeral, and made me laugh when I really needed to laugh. My kids loved him. They always went to his office to chat and play with his toys. When I told my children that Bernard had died, Hezekiah who is 6, said " but Bernard promised me we were going to have a light saber fight next time we visited." What a lovely way to be remembered, Bernard would like that. Hezekiah wants to play Bernard. I hope there are light sabers in heaven.

Monday, April 14, 2008

Far From Normal

In an earlier post, I forgot to mention something important. I wrote an entry about how my friend Lisa took Akila for an overnight so Michael and I, and the other 3 kids could have some respite (I think I have mentioned that we are not qualified for any respite or PCA through the county). It happened to be on Good Friday which is when we got a ton of snow. It was a beautiful day. The 3 kids and I went sledding, and spent nearly 4 hours building snow forts. I have not built snow forts since I was a child. It was a beautiful day, the sun was shining, it was a nice temp, the snow was perfect for building, and the kids were in a great mood, as was I.

I was so thankful for the precious time we had that day. I thought of Akila often, and I thought of how I would not have been able to spend so much time with the kids had she been home. When she is home, I end up dealing a great deal with "conflict". I missed her throughout the day, I thought several times of how much she would have enjoyed building with us, but it was so nice to play with the kids without having to deal with so many issues.

We stayed home the entire day and night, and spent lots of time together. It felt kind of "normal" (thanks Lisa, Rick, Sawyer and Brekken-for giving us a taste of normal). I often think of how our days are so far from "normal". Sometimes I worry about the 3 kids and what they will think when they are grown, and they look back on their childhood and all of the drama that surrounds them. But I guess I have never been a very "normal" person, and that is maybe why the Lord gave us a precious little girl who is far from "normal", but she is right where she belongs; in a family far from "normal".

Wednesday, April 9, 2008

"Ugly Head"

Juli who is my good friend and boss at the dance studio, forwarded an email to me yesterday, here it is (I substituted a different name):

Juli - I wanted to make you aware of a situation that happened tonight in my daughter's dance class. Sue attends the 5pm TBJ class with Michelle. Sue told me that as they were lining up a girl, Ahkeela (sp?) told her that she was an "ugly head". Sue responded by saying "that isn't nice"which was received by an "I don't care". I guess I am not so disturbed by this one instance but Sue and other girls have been verbally attacked by her before. I know that Michelle is aware of this since I brought it to her attention before Christmas. I am not sure what you want to do with this information but I thought you should know. Thanks for listening.

Obviously she is talking about my Akila. Juli responded by saying that Akila has behavioral issues and they were aware of the problem and working with the parents who were very cooperative. Thanks for letting us know and continue to inform us of problems. This is her response in a nutshell. I said you can't say "behavioral issues", you have to say "brain damage". Otherwise I am just a bad parent, which is what we know most people think. Anyway, I told Juli I thought it was time I write a letter to the parents of the class giving them some info and ideas of how to talk to their kids about Akila.

Another thing on my to-do list for the week. When I tried to talk to Akila about the incident, she responded with her usual response to every discussion about poor behavior. "Why are you trying to make me mad Mom!!??" We then go round and round and get nowhere. It is fun. The ironic thing, is that she came home from school yesterday and had been taking out some of her french braids on the bus (which I brought her to the hair salon to get a little over a week ago, they had at least 2 weeks left in them-sigh). She had puffs of hair above each ear which she had been twisting and had put barrettes on. She looked incredibly goofy. Kind of like an ugly head. I got to spend my entire evening redoing her hair tonight.

Tuesday, April 8, 2008


We loved these trees that looked like giant pineapples.

Here is a picture of a beach we found in Laguna Beach which was very secluded and it was beautiful. My husband's photography skills are amazing, my white knobby knees are in all the pictures of this beach. Lovely.

This is the pool in Palm Springs where we stayed, but more importantly, look at the mountains in the background!!!!

We had a fantastic vacation. We really planned nothing the whole week, other than a hotel the first and last night that was close to the airport. On Sunday, we went to a church, and then decided to take a quick drive through the Hollywood area. The first exit we took drove us by the Pantages theatre and "Wicked" was playing. It was not even 11 in the morning but people were in front of it so we parked and went up. They were having a lottery for their 1 pm performance. I put our name in and we did not win. But everyone who entered then had the opportunity to buy tickets for half price. So we saw Wicked and it was great. I of course think the wicked witch of the west has FASD though.
The entire premise of the story is showing a different side to the wicked witch in the Wizard of Oz. It showed her mom having an affair with a man and this man giving her some green liquid to drink. She got pregnant and her baby came out green and faced a challenging childhood of being teased. Very interesting. But the music was great.
We spent the first 2 days in the LA area, then a day in Laguna Beach and then headed to San Diego. We stayed on Coronado Island and toured the USS Midway aircraft carrier and visited Old Town. Then we headed to the desert looking for some warmer weather and we found it. It was about 86 degrees in Palm Springs and the scenery was AWESOME!!!! We loved the desert. The trip went very smoothly and was very relaxing. Michael and I got along great and I feel so blessed to have had so much time together.
Things went pretty well at home. Emily may put it differently. Ha. All in all, it went well for her. I was nervous as the on the first day, during a tantrum, Akila put her foot through a glass pane on the french door to our bedroom. She thankfully got only a small cut and broke the glass. If I were Emily, this would have made me nervous for the whole week to come. But it went pretty well. I had Akila pretty scheduled with sleepovers, my friend Angie took her to dinner one night, and she went to my friend Margie's for dinner another night.
The most challenging day was the last one. Emily took the kids to an indoor playground, the Walker Art Center for a craft activity and then to a movie. Her fiance, Jesse, went along. I think it was just too much in one day for a little girl who had had a busy week. At the art center, Akila was biting, scratching and hitting Emily. The art center was videotaping the art project (they made a cool chair out of cardboard, that holds my weight even), and Akila was yelling "shut up" to Emily while being videotaped. I know too well the emotions Emily must have been having. On the car ride home, it sounds like things got really wild. I think Emily was very relieved when we got home.
When we got home, Emily had to leave right away for a family function (or so she said -- I would have made up something if I were her to get out of this house after a week!!!). The kids were super good and full of excitement to see us and get their little trinket gifts. All was going well until Akila discovered a puddle of water in our family room. After looking into it, we discovered the roof was leaking on the addition of our house. Pretty rapidly too. Obviously not fun, but even more annoying when you factor in how Akila handles such an event. She goes into over-reactive-hyper-nutty-loud mode. The rest of the evening, she was obsessed. It is hard to try to be dealing with a situation like this, being on a ladder, on the roof, wiping up puddles, etc., when a child is screaming wildly!!!!! But we got through it of course.
It is great to be home, we missed the kids terribly. The school nurse called again yesterday with Akila in the office with a headache and low grade temp, 99.3. She didn't need to come home of course but the nurse had me talk to Akila. She thinks Akila might just be a kid that runs a little higher on her temp, I think her thermometer is broken!!! This is the third time and she has never had a fever at home. But she is playing it up big time! She was fine all night last night, until bedtime, then she thought she had a fever. And it is not fun when she doesn't understand that if it is not 100 or above, it is not a fever. It said 97.7 and she thought she was going to die. It is hard when she does not grasp the concept of what is higher or lower than 100.

P.S. Sorry for the no space between the paragraphs. I don't know why it does this. When I am typing, I hit return between paragraphs, but every time I fix it, it still publishes like this. Any fellow bloggers know what the problem is???