Fantasy

Akila has had a vivid imagination for years. I can't tell you how many times I have gotten an email or call from a teacher at school thinking I'm pregnant, I have cancer, we just adopted a fifth child, my sister was shot (don't have a sister), we were in a serious car accident and Akila's cousin was killed, etc. She is always making up crazy stories and they are usually full of tragedy or something big. I have told her teachers, that I will be sure to let them know right away of any large drama going on at our home. We have talked about this tendency to tell fantasies, or to lie, at her IEP meetings. Thankfully.

I say thankfully, as yesterday she told a whopper of a story at school that has some kids upset, and rightfully so. I won't give the details here, but it was not good. I know that false allegations are a common issue with kids who have FASD. It is scary stuff. It makes you think.

I tried to have a conversation with Akila tonight about the story she told. It did not go well. Imagine having a very serious conversation about something very mature, with a 4 1/2 year old (the age her emotional maturity is at). I was very calm. I told her I wasn't mad and that she wasn't in trouble, but she got pretty mad and emotional. We talked about the words she used, the serious meaning behind the words, and why it scared some other kids. She didn't get it. There was a real disconnect. She just wanted the conversation to be over.

It is really scary to think of what possibly lies ahead of us. She is 9. When I imagine her at 12 or 13, or even older, I get really nervous. I pray that I am wrong.

Verbal violence

Wow is Akila's verbal violence escalating. When she is angry, she goes right to name calling. This has been a challenge for over a year, and is getting rough. Last night we had to go to the dance studio for recital pictures, and I had to bring all four kids with.

For the last several months, I have not had to bring all the kids with. I have been making arrangements for the others to go to a neighbors, or an after school program, or Michael has been home in time. Well that didn't work out yesterday, and it was not pretty.

On the way home, Akila was focused on Imani. She often focuses on Imani and I think this is because she is jealous of her. Imani is a very sweet and easy going girl who gets along with everybody. Well she was yelling at Imani for any type of noise that Imani made, including just talking. She was calling her names, and saying that she wishes Imani were dead or never had been born. She even said once that she wishes that someone would break into our house and kill Imani.

She called me every name in the book. She said multiple times that I am not her "real" mom and that dad is the boss and the only one who she has to listen to. When dad is around, I am the only one she has to listen to, according to Akila. Once again, it really doesn't hurt my feelings or bother me when she is wishing I were dead because I am a "stupid frickin old lady", or when she says I am not her real mom. I know I am, and I know that God has a plan for her and I and that is why she is my real daughter.

By the time we got home, before we even got out of the van, Imani was helping Akila to draw something in her notebook and they were buds once again. I on the other hand, was completely annoyed and needed just a few minutes away from Akila. Kids are amazing. I did talk with the other three later, and try to process all the hate filled words they had witnessed in the van.

Then this morning, she changes out of her uniform pants and puts on a pair of jeans, which are against the uniform policy. She of course went into a rage when I told her that she needed to change and was swiping things off of tables and counters and calling names galore. She went to school in the jeans and I put uniform pants in her bag and left the teacher a message asking her to make sure Akila changed. Poor teacher (I don't say this because Akila won't listen to her, she will. I just feel bad that I need her help in this way).

At the bus stop, Akila got mad at me when I didn't put her ponytail in the "right" way and once again, I was a stupid mom and she wishes she still lived in Georgia with her foster mom, blah blah blah...... A minute later, the bus came, the other kids were hugging and kissing me, and Akila was yelling "love you mom, love you", like she hadn't been hurling verbal violence at me all morning. It is so amazing how disconnected she is to her behaviors, how she can't see how bizarre it is to call someone a horrible name, and less than a minute be loving toward them.

I have been praying for patience and for control of my tongue. It would be so easy in the heat of the moment to say "me too" when she says she wishes she lived somewhere else or something like that. I of course do not wish that, but in the heat of the moment, when she is being really nasty, it wouldn't be too hard to say the wrong thing. And I know I would regret it forever, because that would undoubtedly be the thing she remembered for the rest of her life. Not all the things she was saying leading up to my slip of the tongue.

New med

The new med that we were given to give Akila if she wakes in the middle of the night is great. I think it is called Clonadine. I'm too lazy to get up and go look at the bottle right now.

About 2:15 last night, I woke to the sound of a cabinet in our bedroom opening up and saw Akila trying to get the mini DVD player out. I got up, gave her the meds and some cheeze its (the easiest way to get her to take her meds without an all out brawl), and she went back to bed and actually fell asleep.

I think this is the 4th time I have used this med in the middle of the night and I am happy to report that it has worked each time, and that Akila is fine in the morning. The Dr. said she might be a bit tired or groggy in the morning, but she isn't at all. The key to this option is to just make sure that we hear her when she wakes up in the middle of the night.

We really are going to have to get some door alarms or something like that soon, especially for in the summer when her sleep patterns are more sporadic due to the non-structured element of summer. If anyone has any tips or ideas on door alarms, types, or any advise, I'd love to hear it!!

Loving and hating spring

I love spring, but not everything about it. I love the obvious, the nice weather after a long winter of being cooped up. I don't like the issues it can cause at bed time. And I don't like the neighborhood kid conflict issues that it brings, especially with Akila.

I can tell it is going to be a rough spring and summer in the hood. Last night, Akila had a hard time winding down at bedtime, even with the melatonin that usually works wonders with her. I put her to bed and about 15 minutes later, Imani shouted over the stair railing that Akila was in her room. Akila wanted to sleep in Imani's room. Not an option.

I couldn't get her back in her room. Because her room is too dark, and it is too far from the bathroom. It is the same distance as Imani's room. But this is what she was stuck on. Her room is too far from the bathroom, dumbhead! I heard it over and over and I could not get her calmed down. It took forever.

Then tonight, she was outside playing with kids, and had a fit over coming in, even with extra time, and several warnings. It was not pretty. She threw several things, broke a really nice new water bottle and just about sent Michael through the roof.

I should give her some credit though, or myself maybe. We had ten kids here for the majority of the night. A family in our babysitting co-op who have six kids, ranging from 1 to 10 years of age, were here from 4:30-7. They were really well behaved kids, and Akila was pretty in control while they were here, which helped me to be in control.

I forgot what it is like to have a baby around. Had to mix some rice cereal up and could hardly remember how. It was fun, but I'm glad I don't have a little one anymore. On second hand, Akila was much easier when she was one.

Recovering

I haven't blogged as I am still in recovery from spring break. It was a long ten days, but all in all, it went fairly well. I will blog about it later.

Akila, Imani, Zeke and I just got back from a bike ride to a park. Hezekiah and Michael are out running errands. So I thought I would get a little jog in while the kids bike. We went to a park right behind North Memorial Hospital. The three were playing really nicely for about 20 or 25 minutes, before Akila saw a wasp on a piece of equipment.

She went into hysterics. The wasp seemed sick, it didn't move hardly at all, even when the kids got close to it. Akila completely wigged out. She came over and was sitting on me, and I could not get her to calm down. I tried to get her to come and play on the other area of the playground, and she saw a spider and wigged out even more. She wanted to go to another playground and I tried to explain to her that the bugs would be at all playgrounds. She disagreed, of course.

I had her sit on my lap for awhile, hoping she would calm down, I tried rubbing her back, talking about other things, but after awhile, it was clear that she was not going to calm down, and she was truly scared. Unfortunately, we had to pack up and leave. Thankfully, Zeke and Imani didn't get upset at all.

Akila was in a huge hurry to get home and kept looking behind her and was paranoid that the wasps were everywhere. It was very odd. Almost schizophrenic.

When we were in last weekend, the first evening Akila was wigging out over these baby moths that were in my aunt and uncles house. She wouldn't sleep in the bedroom with me because she saw one in there. She went into hysterics every time she spotted one.

Then, the second day, she was chasing the bugs down and killing them with excitement. In the morning, my aunt Elaine was pouring some cereal for Akila and she made the mistake of putting Akila's spoon on the counter, and Akila wigged (wigged is my word of the day). I explained to my aunt that Akila can't stand to have her silverware touch the counter or table, we always have to put them in her bowl or on her plate. I told her that we have learned lots of little things like this, and once we figure them out, Akila usually changes them. I use to get in trouble for putting her silverware in the food.

I pointed this inconsistency out to my aunt and was telling her how it keeps me jumping. One day, she is freaking over the bugs, the next day she is hunting them down. Go figure.

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.

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
*Ugly
*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.

Conferences

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.

Speaking

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.