Tuesday, March 31, 2009

Spring break update

Well, we have a ten day spring break. Today is day 5, the half way point. On the first day of spring break, Akila gave Zeke a bloody nose when we were driving to the Mall of America to meet my sister-in-law and nephew and niece. Lots of blood, had to pull of the highway. Initially, she didn't care and was blaming him, and when the blood kept coming, she seemed remorseful. On the way home, she hit Imani. No blood though. Poor kids.

Yesterday and then again tomorrow (Wed), I have signed her up for the release day programs at the Downtown YMCA. Yesterday, was nice and peaceful. The other three played really nicely, I got a bunch of stuff done, and Akila had a blast and wants to go back. Priceless.

Today, I brought the kids to Grand Rios Waterpark thanks to my brother Tom and his wife Paula. They gave us the best Christmas present ever for the kids two Christmas's ago, a gift card to Grand Rios. We have been saving it, and used it today. Thanks Tom and Paula! And we will be able to use it again- it was only $10 for a wrist band from 10-4, which plenty of time. We even used it for lunch. The kids were really good, and the older three and I all went down the Hurricane slide, which was freaky!!!

Thursday, Emily is coming to babysit for a few hours which will be a nice break, because on Friday, I am leaving with the four of them to go to Iowa to visit my uncles, aunt and cousins. Six hour drive. Michael can't come as this is a busy time in his accounting dept. Pray for me.

Thursday, March 26, 2009

Crack head

Akila's new name to call people when she is mad, is "crack head". Lovely. Just so you know, I'm a crack head according to Akila. I think she called me that 30-40 times last night. Yesterday was the first time I heard that one from her. Dumb nuts has been her name of choice up until yesterday. That and brain head, which Michael and I really prefer her to call us- so we don't get on her case when she uses brain head. We probably should, maybe she would use it more than.

Yesterday was rough. She walked in the door with an edge and was completely out of control until we got to dance. Every little thing had her flying off the handle. She gave me a really hard shove in the gut while calling me crack head at one point. It didn't hurt, but it is so hard not to go into the red zone when she is like that. I admit, I did go into the red zone after about 30 minutes of raging.

Michael got home about 5 minutes before we had to leave for dance. He couldn't get her to calm down either. Sometimes, when Akila is like this, a change of the guard can be what it takes for her to shake out of the rage. Not yesterday. Michael thought she had not had her meds or something. I laughed. I wish the meds worked so well that she never acted up while on them.

I threatened not to take her to dance, which honestly, is more of a punishment on the rest of us. I had to go to the studio to do some work, so I told her I was about to leave and she could come with me or not(I'm sure Michael was sweating). She was being really rude and demanding that we bring her her shoes. Hezekiah came into the living room, asked what shoes she wanted, and got them for her. He wanted her to go. Sad.

In the van, I just blasted the radio and ignored her. She settled down after about 10 minutes. She was fine at dance, fine on the way home, and then when she was getting into bed, she lost it and we started all over. Here are a few of the things she yelled last night, in the first and second rage:

*I hate you
*I wish you were never born
*I wish you were dead
*I wish you weren't my mom
*I wish I had a real mom, not a fake one like you
*Crack head
*Dumb nuts
*You're the worst mom in the entire world

There were many other things, but I can't remember most of them right now, that is probably good. I honestly am not hurt when she is saying these mean things to me. I know it is the rage talking, and she just can't control what is flying out of her mouth when she is like that. What hurts me, is the other kids having to hear some of it, or being the target of her hurtful words.

When she was in bed, and finally settled down, she called for me to come to her room. I did, but I didn't want to. She wanted a hug and I gave her one and we each said I love you. And today is the last day of school for 10 days. Spring break starts tomorrow. I am not ready.

Friday, March 20, 2009


I went to conferences last night by myself. Big mix up on the scheduling. Actually, Zeke went with me, so I wasn't alone. But usually Michael and I have gone together. But it was the same night as piano.

Anyway, it was a good night. Zeke is rocking more than you would have expected for a preemie who was in Early Childhood Special Educatio(ECSE)n for over 4 years of his 6 year life. He started in ECSE when he was 6 months old. Zeke was a preemie and very sick when we first got him out of the NICU, at 5 weeks of age. He ended up in and out of the hospital the first few months we had him, it was a very stressful time!!! When he was two, he hardly said 5 words. He said "moie" for yes until he was over three years old.

He was reading a little by the time he started kindergarten this fall, and by November was reading really well. Now, he is reading beyond first grade expectations. He is a really fun loving kid who helps others and almost always listens and is respectful. He is a great kid and we are very proud of him!!!

Imani is also a great student. For years, her teachers have been saying that they would like to clone Imani as she is so respectful and cooperative. Math is her strength. She is reading OK, although she could easily improve her reading skills. this is pretty good for a child who was born with drugs in her blood. She is an amazing girl who is very emotional and has a hard time when people are treated poorly. She will be my activist. A quiet activist.

Hezekiah is also doing really well. He does have a hard time not getting sucked into goofy first grade boy behavior, but is a really good kid other than that. He is reading 90/100 2nd grade sight words, and he is only in first grade. He is a math wizard, and is making a number scroll in class and is up to over 3,609, the highest in the class. He is pretty competitive.

And Akila, is doing really well this year. Her teacher, Ms. McCauley, is a great match for her. Our school has been looping, where you have the same teacher for two years. I found out last night that our new administaration has changed the looping and that we won't have the same teacher next year. This bums me out. Akila has had a great year, and I was looking forward to her having the same teacher next year.

She is really good in Social Studies. She was telling me the other day about the difference between longitude and laditude, and regions. Behavior issues at school are minimal. This is good. I am glad. I wish it were the same at home. On the weekends, when she is on her meds, we actually do fairly well. I will chalk it up to the meds. Although I know that even on meds, she is worse at home. I think it is somewhat close to the fact that all kids, special needs or not, are worse for their own parents than they are for others. Right? I pray. Ha.

Anyway, it was a great night. I like to hear positive things about my kids, about all of them. I am very proud of them all.

Wednesday, March 18, 2009


I keep forgetting to say, that I am now a trained speaker for http://mofas.org/, so if anybody needs a speaker on FASD, let me know!!! They had a really organized training and I have the fancy PowerPoint I can use and everything.

New Lap Top

My great boss, Juli (also my best girl friend), bought me a lap top- for my dance work of course. But it is taking me forever to get it all set up. Getting all the right software on it, downloading Adobe Flash and all that kind of junk. I can't get my dance email to pop into Outlook. I am working between three different computers and I am less effecient than ever. Kind of defeating the purpose of a new computer. If I could just carve out like 3 hours to get it all set up, that would be lovely.

But we have been full of appointments, and I have been exercising like crazy lately, which takes a lot of time! I am not as good as Kari, who has been getting up at some un-Godly time like 5 am to go exercise. I wish I had that in me. I have been taking cycle classes at Lifetime Fitness and I don't get home until 11 or 11:30, half the day is gone. But the pounds are shedding so I'm OK with it for now.

I had a two month follow up with my Neurologist who specializes in headaches yesterday. I went to see him the first time on Jan. 15 and this is when he put me on 5,000 mg of Vitamin D and 500 mg of Magnesium. I had a headache the day I saw him, and the next day, and have not had one since. That is honestly a record to have gone two months without even a tinge of a headache, since before I hit my teenage years. I am so happy I can't even tell you. I have tons of more energy, I am sleeping better and I feel in a better mood. I highly recommend giving it a try ladies!!!!!! Email me if you have any questions, I have been doing research on Vitamin D and Magnesium.

Akila also had her appt. with the Endocronologist yesterday. She is growing at a nice speed, which makes me feel much better having spent $2,000 on her growth hormone injections in the month of January (we have now met our deductible). Our Endo. Dr. is on maternity leave, so we saw one of her colleagues who was very nice. We were talking about when Akila will probably start Estrogen (which all girls with Turner Syndrome need for multiple reasons, including having the onset of puberty, bone density and other things). She will probably start this in the next year, and more than likely need to take it her entire life.

I asked the fun question of wondering if this affects the ovaries or how that works out. You might remember, when we first met our Endo. Dr. a year ago or so, she seemed a little taken aback when I mentioned that we were OK with the symptom of infertility that comes along with Turner Syndrome and would not be needing to take any measures to try to make Akila fertile. She was not rude at all, I just don't think she has ever heard this before from a parent. It was kind of funny. I almost told this Dr., but decided not to freak her out as our Dr. will be back next time we go in.

There is a part of me that doesn't even want to do the Estrogen. Girls with Turner's usually don't have typical breast development and other things that occur during puberty, without the presence of estrogen supplements. I am not ready for Akila to have breasts. Not because the idea of her growing up makes me emotional, or sad. Because it scared the daylight out of me. She has been obsessed with her breasts the last 6 months or so, and she has absolutely no breasts. I can't imagine what she will be like when they do start to bloom. I bet at least once a week, she comes up to me and points out to me that they are growing, which they are not, thankfully. She has been wearing a training bra everyday since she stole the one from my friends kids, and she loves the idea of breasts. Lord help us.

Monday, March 2, 2009

I'm laughing!!

Well Akila's weekend at Lori and Curt's went really well, they did a fantastic job with her. We had a very calm weekend and lots of fun. We went to Chuckie Cheese, and the Mall of America.

It is a weird feeling. The normal drama is gone, the rages, the sassing, the constant conflict. It is calm, and kind of peaceful, but yet not. Because you feel the hole, the void. It is good, do not get me wrong. We need it, all of us, including the other three kids, and including Akila. But we are all constantly aware that we are not whole when Akila is gone. It is God's beautiful way of reminding us what a blessing Akila is. I missed her. I was glad to have a break. I was glad she came home.

When I talked to Lori on Sunday afternoon before they brought her home, she was telling me about a sweatshirt and some wash clothes that Akila was going to keep. Smart lady to let me know. I asked her if she had checked her backpack and she said she had found some "extra" stuff in it at different times throughout the weekend and had taken care of it. Fun.

There was some minor conflict, some name calling and issues like that. But if that is as bad as it gets, then that's pretty good. And Lori and her family were very understanding. I can't tell you how much I appreciate them all.

And today, I was laughing. I went into Akila's room after the kids left for school and found a pair of underwear on the floor that were not Akila's. She stole underwear. This is funny for a couple of reasons.

I remember about two years ago or so, when my brother-in-law and sister-in-law, Dan and Tara, took Akila for a weekend. When we picked Akila up, and were in the van getting packed up, Tara came out to the van and checked Akila's underwear. She had just bought new underwear for her girls and Akila had been eyeing them. Very smart lady!!! It was funny, but smart. Why am I not that smart yet?

Then tonight, I laughed even harder. Zeke came to tell me that Akila had lifted her shirt and shown him her bra. Her bra? What? Later, I checked, and sure enough she has stolen one of the Schmidt girls training bras. I can't stop laughing. I must remember next time to check under her clothes. What next? Cavity searches?