Saturday, February 28, 2009

Sleepover in progress

I went to school an hour early and picked up Akila yesterday to bring her to my friend Lori's house. I just really wanted to avoid her riding the bus home with the sleepover kids and having them all drive with me to Shakopee. She was really excited to arrive at their house and I hope it is going well. I haven't called yet.

We have had a great sleepover, one child has already left and the next one will leave shortly and then a half hour until the next one leaves. It has gone so smoothly. The biggest issue has been with my youngest son, Zeke who is in kindergarten. He and his buddy had a few moments last night where they were feeling left out, but there is a tiny developmental difference. It was no big deal.

Normally on sleepovers, when Akila is home, all I do is deal with issues-constantly. I am really glad for my kids that they have a nice time and that their friends did as well. I brought all 6 of them sledding this morning and that went really well also.

It is sad to say, but it feels nice to have some moments of normalcy. I miss Akila, I love her and I wouldn't give her up for the world. But a night like last night makes it very obvious to me what our life is really like. Not normal. That is OK. It is what God planned for us, and I am grateful to Him for that. I am also grateful to have friends who allow me and the rest of my family to have a normal weekend. Thanks Lori and family!!

Thursday, February 26, 2009

School stuff and stuffy nose

I have been fighting a head cold this week. I feel like a wimp. It is not a really bad one, small cough, little bit of snot, but I am exhausted. Today was better, thankfully-since tomorrow is when Akila goes to my high school friends house for the weekend. My other three kids are each having a friend sleep over tomorrow night, not sure I'm ready for that. Should be fun. I keep telling myself that.

Yesterday, Wednesday, I got one of those automated messages from our school. It was letting me know that the after school cooking class that Akila is in on Tuesday and Thursdays is canceled starting today. One day notice. The session isn't even half way over. I was not happy. I can't imagine how this affected working parents. But I honestly told my friend today that it was worse for me. Ha. How selfish is that?

The two days a week that Akila is in this after school program, are what I use as our respite or PCA since we don't qualify for any services. These two days are when my other kids can get home, and I can focus on them for 1 hour and 45 minutes. I can't tell you how bummed I am about this. Urrgghh.

Also, we got a letter from the Minneapols school superintendent. My kids go to an integration school which has 11 school districts as members, including Mpls. Mpls has decided to pull out of the partnership. The letter was clear as mud. There is a meeting next week, which I am dreading. It will be full of whining parents. I understand the decision, and I just want to know more clearly what it means. I love our school and am really happy with my kids there. But I know that things change and if I have to choose a different school, I will.

We are for sure safe for the next school year, so if we need to find a new school, it would be for when Akila is entering 6th grade- middle school. This is not good. Akila cannot attend a large Mpls middle school, it will eat her alive.

Our school, Interdistrict Downtown School, is a K-12 school. Each grade level has somewhere around 40 students. This small size is great for Akila and I have always thought that it would be a great fit for her in middle school and high school. Everybody knows who she is, and watches out for her. I'm trying not to get ahead of myself, I have to believe that there will be some kind of "grandfathering" or something for students who already attend the school.

Needless to say, I am annoyed with the school system this week. They are messing with my system and they are doing it on a week when I'm not feeling good. Not a good idea.

Wednesday, February 18, 2009

Wisconsin Dells

The kids and I had our trip to the Wisconsin Dells this weekend with Juli and her kids, and two of their friends. Two adults, ten kids. I survived. It went much better than last year at Lutsen. Akila was pretty good.

We had a three bedroom condo. The third bedroom was a loft that had two beds and a pullout couch. We had the 6 little kids stay up there, but then changed it and kept Akila in our room to sleep on an air matttress. That helped a lot. She kind of stayed in our room a lot and watched TV on her own. You could always tell when she left our room and went upstairs as there was conflict in about two seconds flat.

The kids had a lot of fun swimming. I'm sure we gave some people some good stories to tell their friends and family, as Akila raged and called me a stupid idiot many times in front of many people. But there were four indoor water parks, a huge climbing park and an arcade. Plenty to do.

In two weekends, Akila is going to spend the weekend with my friend from high school and her family, to give us all a break. The kids will finally be able to have a friend over for a sleepover. I can't wait. Ha.


My presentation went well last Thursday. I could have been more organized, but that is normal for me. I think there were about 30 people I spoke to, and the evaulations they filled out were very good. I definitely know what I would do differently next time.

I am going to a training on March 3 that MOFAS is putting on for a speakers bureau they have. This will be nice so I can use their materials for presentations in the future. I am still always shocked by how little people know about FASD. We definitely need to educate the public.

Tuesday, February 10, 2009

First Presentation

I am presenting a workshop on FASD and the ups and downs of living with it, it will be my first workshop on the topic, and I need to prepare. But it isn't until Thursday, so why would I work on it yet? I am so last minute.

My friend Lynne works in a school district in the northern metro and is part of a statewide group called the Minnesota Association for Career and Technical Education for Special Needs Personell (MNACTESNP)-that is quite the accronym. I am doing two workshops on Thursday. I don't have my act together enough to do a fancy power point or anything, but I have been taking some notes on points and stories I want to tell.

I am a bit nervous. I have presented many workshops for years at different conferences, and even led many trainings. But not on FASD. It is a great group to get info out to. Many of these staff are work coordinators for high school students and 18-21 year olds. Wish me luck.

Biting My Tongue

Over the past few years, and more so in the last year, Akila has become addicted to calling names when she is even just a teeny bit upset. I know at some point this will turn into swearing, and I dread that day.

I was asking her what kind of cereal she wanted this morning and was listing the options. She said, "yes". I asked to which one. She went ballistic. Called me stupid mom multiple times. It is so hard to remain patient and deal with her when she is like this. Same thing happened at bedtime. The 9 year old inside of me wants to call her stupid back. I really have to bite my tongue.

Saturday, February 7, 2009

Creative Spaces

We have an indoor pool. We live in North Minneapolis. That is weird. It is weird to have an indoor pool no matter where you live, when you're in our income bracket especially. We have not been using it for over 2 years. It is a really fun pool, it's called an Endless Pool. Michael emptied it over 2 years ago to clean, and the cleaning was just finished this fall.

We decided not to fill it again as natural gas prices are already through the roof, and to heat it would make our already high bill even higher. So it has been sitting, open, since about September. Over one of our long weekends in January, the kids were bored, so I said let's make the pool a "toy pit". We put two area rugs in it, and moved the majority of our toys into it. Here is how it looks.
I don't think my husband it too thrilled with the new use (he is worried about the liner getting ruined, but the life of the liner is up and we should buy a new one if we want to use it as a pool again). I love it!! I just throw toys into the pit when they're on the floor and make the kids clean it up once a week.

Great News

We got a really great letter in the mail. I remembered seeing a commercial a few years ago with Montel Williams driving around the country in a bus talking about pharmaceutical help for people. I googled it, and found the Patient Access Network. You can apply for financial assistance for a select group of medicines, mainly ones that are really expensive, like Akila's growth hormones.

I went to work, filled out a ton of paperwork, and received a letter saying we were accepted. I am so happy!!!!! We paid $2,100 for these meds in January and will have to pay a $75 copay each month now (we met our $3,000 deductible by Jan. 15). It looks like they will cover the entire years worth-their letter isn't very clear, I need to give them a call.

Akila's field trip went pretty well yesterday, but last night was a little rough. Next Friday, the kids and I will be going with my friend and boss, Juli, and her 4 kids, to Wisconsin Dells for the long weekend. This is a tradition we started several years ago for President's Day weekend. One of the perks of my job, she pays for the room. Last year we went to Lutsen, and it was an absolute nightmare. Akila was horrible, the worst I have ever seen her as a matter of fact. I am blessed that Juli is willing to take us somewhere again.

I am looking forward to it though, I think Akila will be much better. It is a better place to go. Lots more to do (5 indoor water parks, indoor climbing park, and the room is huge, 3 bedroom loft). I am just dreading the drive. Hopefully Juli will have Akila ride with her again. :)

Friday, February 6, 2009

Long Day Ahead

Akila has been having a super week, and I think I told her that too many times tonight. Today has been rough already. I first heard her up at 6:00 am, when she was waking up all of the other kids. She had already had breakfast, gotten dressed, colored and watched two movies. Often, when she has these early mornings, she is really good. Not today. Many power struggles already.

And the best part, is that she has an all day field trip that I am chaperoning. Lord help me. I suppose that may be why she got up in the middle of the night, out of excitement. But I am nervous about how it will go today. If she is this out of it, having me around will only make matters worse. I may have to drive separately and leave if she is being too nutty.

She is so much worse when I am around, that I rarely do things with her class. And if she isn't acting worse, she is acting like a baby, holding my hand, wanting to sit on my lap, etc. It is embarrassing. She doesn't realize it, but I am embarrassed for her.

I love my kids. But I am not the type of person who enjoys being around groups of little kids. I will be honest and say that field trips are not my favorite things, at lease with little kids. On the other hand, I love teenagers. I love field trips with teenagers. Call me crazy, but I would rather have a teenager swearing at me, than a little kid whining at me. I'm sure that will change when Akila is a teenager. And for sure when I have 4 teenagers at once. What were we thinking?!?