Tuesday, December 27, 2011

Calendars, tokens & lists, oh my!

The below picture of our two month calendar (which is on a wall that I started to peel wall paper on over 7 years ago- ugh!), is a tool I love. All of my kids look at it daily to see what's coming up, and Akila especially loves it to know what is going on. It is magnetic, and we will attach other things on the bottom of it.



The next picture shows some post it notes with "calming techniques" that Akila is suppose to use when she is getting upset. Nice in theory, but she has not once used the ideas when she is getting mad. When I suggest them, it infuriates her. But we still refer to them and keep them.


The next two sheets explain her token system. Not a big fan of it, but we are giving it a try for the umpteenth time. It has helped a little.


This is my favorite thing hanging on the board right now. Last week one day, the boys asked to use my laptop. I thought they were playing a game. Instead, they typed up this list titled "Things To Do If We Are Board". I did not tell them to do it, I did not suggest it, they weren't even complaining of being bored which makes it all the more precious. I am going to type the list below in case you can't read the picture.




  • Play the Wii
  • Play Bionicles/Legos
  • Play spies with stuffed animals
  • Play with Nerf guns
  • Wrestle
  • Play super heroes
  • Color super heroes
  • Look at the internet on mom's laptop
  • Memorize our bible verses
  • Play PSP and DSI
  • Watch movies on Netflix
  • Play a board game
  • Play outside
  • Fight with light sabers
  • Play table football
  • Do latch hooks
  • Watch TV channels
  • Build with big and small blocks
  • Help mom or dad
  • Sit in beds and read
  • Play hide and seek
  • Make paper airplanes and fly them
  • Play catch with a football
How precious is this? I was very impressed that they were doing this without prompting, and I was even more impressed with the list they put together. I am truly blessed!

Monday, December 26, 2011

Zeke, the chef!

Zeke's 3rd class has a partnership with a food co-op and have been studying food and sustainability and healthy eating. Several weeks ago, he came home from school and started cooking. He made a really healthy meal full of vegetables and we all loved it. I had posted a picture on Facebook, but I don't think I blogged about it. He has cooked at least 3 times since and uses leftovers and other odds and ends to make his meal, which always includes rice cuz he loves rice.

On Christmas Eve, we have appetizers and I was in the kitchen all day getting them ready and some food for Christmas Day. Zeke wanted to make his specialty also and I welcomed the help. The little cutie then set forth in getting it all organized at noon. He got out the cutting board, the herbs he would use, the knife, the can of beans, etc. He made a list of what he would need (which he added to several times throughout the day.

He made his meal which we all genuinely loved. Akila especially likes it and the great thing is there was a good amount of leftovers and it will feed us for a few days.






Merry Christmas!!

We had a very lovely and uneventful Christmas. Praise the Lord!!! Akila did a fantastic job and was actually better than normal. She did wake up at 2:15 and 3:15 on Christmas morning, but I was able to get her back to sleep and I was very thankful for that, since I had just gone to bed at 1:00.

We spent Christmas Eve at hour house with just our family and went to Michael's brothers on Christmas Day. The kids received gift cards to Target from both of my brothers and today I brought Akila to spend them. I hate doing this. She does not understand money concepts well and it usually takes at least an hour. We move from the clothing section, to the toy section, to the electronic section to the make up section to the baby section and then start the rounds over and hit them all at least twice, if not three times. But today, we started in the baby section, she chose a preemie out fit for a new doll, we then moved on to the toy section where she picked out a barbie, and two Liv doll products. It took awhile, but not forever, and she did not throw a single fit. Thank you Jesus!!!!

She has been playing with them since we got home, 3 hours ago. Imani has been helping her and playing with her. That is all I need for Christmas, several hours of play without her throwing fits. Yahoo.

Here is our Christmas card picture. The exposure lighting didn't turn out very good on the ones I sent out, but it works. Merry Christmas to everyone.


Friday, December 23, 2011

Knitting

I have mentioned that since Thanksgiving or so, Akila has been trying to knit. One of her PCA's knits and did it with her at the end of the summer. On Thanksgiving, she worked on it forever with my sister-in-law's help. I don't know how to knit, and I really am not interested. It is not my thing. But I may need to learn.

I did get her some knitting needles-I know, I'm living on the edge. They could become quite the weapons. I have warned her that she will not see them again if she even threatens to use them as a weapon. She has went to Grandma Kathy's next door for help on it- Kathy has helped her twice. Her in-home therapist last week helped her and for nearly two hours, Akila knit. The therapist was blown away by her attention span. It is truly amazing.

One day this week, Imani even agreed to knit with Akila. Imani took a knitting after school class a year or so ago, and has some great beginner knitting skills. She has helped Akila on and off the past few weeks. But the two of them sat in the living room and knit for quite awhile. Here are some pictures:



I think with some of her fine motor challenges, it is not something that she is picking up on very quickly. After many hours and lessons with various people, she still needs constant supervision with it. It is similar to when she took piano lessons years ago. She really struggled with putting her fingers on the right keys. I would help her to place them on the right keys, and they would immediately go back to their regular position.

You might also notice that Akila is wearing a coat. We do have a drafty old house, but she is constantly cold and asking me, I mean yelling at me, to turn up the heat. I tell her to wear a sweatshirt or sweater, but she never wants to. She prefers her winter coat. I have never been able to get her to wear a weighted vest, or use a weighted blanket, but I think the coat serves in the same capacity.

Barbie play, and I'm not talking about myself(never call me Barbie!)




This is Akila playing with her Barbie's in the living room. It is a mess, and we are not allowed to touch it or move anything. And yet we get in big trouble if someone accidentally steps on a piece and breaks it.

What is amazing is the length of time she can play with these, and I mean by herself. She played with them the majority of the day yesterday. She woke up and has been playing with them for 30 minutes already, and hasn't even taken her morning meds. At some point today, Imani will be gracious and play with her for awhile. It is never long enough in Akila's mind, but I am always very thankful and proud of Imani for doing it, as she does not like dolls very much.

I am thankful that Akila has the ability to entertain herself for periods of time. It would be really smooth if she were not bothered by the rest of us breathing, let alone walking through the room to go to a different room, or jumping on the floor above her. I think I may have mentioned before that we have big problems over her trying to find a certain barbie accessory, like a shoe. If she can't find it immediately, the entire family is accused of stealing it in an attempt to "terrorize" her. Everything has to be halted and we need to search for the missing item. When I am not willing to stop everything and help her find an item, look out. We are sure to end up in a physical altercation. She is usually happy with just an attempt, if unsuccessful in the search, she will be mad and have some more choice words, but she usually won't get physical.

She of course remembers every detail of how a certain barbie came in the package, and wants to find the original shoe or earring they were wearing when they were new. She will end up spending forever trying to get all the pieces she wants to play with, and then when it is bedtime or time to go, she freaks out because she hasn't gotten to play yet. This really confused me for awhile, as she had been playing with them for hours, literally (while she takes frequent breaks to yell and scream at us for living). I then realized that she was upset as she had spent the majority of the time gathering the items she wanted, and didn't end up playing with them as much as she wanted.

But, this Christmas season, I am truly thankful that Akila is home. I am thankful that she has not gotten as violent as she was before she went to the crisis home in early September. I am thankful that she is playing well even though there are plenty of hiccups, her ability to play is a true blessing for which I am thankful.

Thursday, December 22, 2011

Harassment

Akila's class must recently have had a discussion on harassment. She now thinks she is the queen of calling out when she thinks someone is harassing. Yet she is totally oblivious to the fact that she is in fact the queen of harassment in our house. She is constantly harassing all of us, but especially the other 3 kids.

Today was day 6 of a 17 day winter break. Yes, 17 days. I know that must be making all of you sick to the stomach, like it does to me-unless you're a teacher. We had a PCA at the beginning of the week, but today was day 1 of 5 days with no PCA. Lord help me.

This is how the day goes: Akila brings all of her barbie doll stuff down into the living room to play. She wants to be as close to me as possible and I am usually in the kitchen area. She will not play them in her room- drives me nuts. The kids usually play in our pool room (a big family room with an indoor pool, which has been drained and is now our toy pit, with area rugs in it). Imani has been gone at a friends for two days, a kind of respite for her. The boys sometimes go up to their bedroom to play. When they are upstairs, they can get loud. They are boys. They horse around, wrestle, have fun. Akila can't stand it. She goes nuts every time they go upstairs and make any kind of noise. If Hezekiah jumps out of his bunkbed she loses it. She is constantly harping on me to go harp on them. Even when I explain to her that they are fine, there is no need for me to yell at them.

But this doesn't satisfy her. She gets extremely worked up, and decides to take the matter into her own hands- which means I have to intervene or she will go up and start a fight with them. This happened today at least 15 times, I think way more than that actually. They were playing quietly in the pool room at one point, and she went down there and was yelling at them for the way they were playing a game. Then she starts to accuse them of harassing her. This, after about 10 minutes of harassing them.

On Sunday, Akila was in the pool room with the kids when she started to accuse them of harassing her. They were telling her that she was the one who was harassing when she calls mom a stupid white woman. I have said the same thing to her, several times and tried to have a discussion about harassment. She never listens. But she did kind of listen to them and agreed with them. It was kind of cool. But I am still being called names, and so are they.

The part of the lesson from school that seemed to stick in her brain is that if you do or say something over and over again, it is harassment. So, when she starts to call me on harassment when I am giving her a direction, and repeating the instructions, I then point out to her that she just threatened to kill me three times in a row. Clear cut case of harassment. Not in her court of law. I lose every time.

Monday, December 19, 2011

Gory details, sorry in advance

I have not been feeling well for over a week, hence my silence. I feel better, just in time for a two plus week break- yey!!! NOT! My kids have the next two weeks off plus the Monday after New Years. According to my calculations, that is 17 days- way too long!!!

I debated over filling you in on the gory details, and since I don't have good filters, I am going to share a little. I have learned I am prone to cysts. I had one last June that got infected, the weekend of our spring recital, by my eyebrow. My entire eye was swollen shut one day, and it was a mess for over a week until I got on antibiotics. I have always had a tiny one on my lower rib cage, for at least 7 years. Well, it decided a few weeks ago to get infected. It also decided to be very painful and grow to the size of a golfball. And to come with other complications like a fever, body aches and cough. It was not fun. It was not pretty. I finally had to go to urgent care to have it lanced. Round of antibiotics. Totally disgusting.

Today, I had my annual dermatology appt since I obviously have skin issues (I have several moles that are suspiscious also, so I do get an annual check up). The cyst has been draining and gross for two weeks. The dermo said it is still not good. She drained a bunch more. More gory details. It hurts really bad. Imagine the underground zits that are uncomfortable, times 1,000. Maybe 100,000, or more. And imagine coughing with a golf ball size infected disgusting thing on your rib cage. Nuff said. I have been miserable.

I guess it is not nuff said. I was hoping the dermo would cut it out today. They just keep re-occuring til they are completely cut out, like a baloon that keeps refilling. Gross, I know. Well, she said it is so big I need to have a surgeon remove it. Not happy about that. I have already had 10 surgeries in my life (not to mention how much it is going to cost!). None of them are big deals either. Six knee surgeries, appendicitus, tonselectomy, thyroid nodule removed- stupid stuff like that. Now add removal of disgusting fowl smelling sack of pus to the list. I am one hot chick I tell you. Now, nuff said.

Akila has been home for over two weeks. We have had our rough patches, that is for sure. There were a few days in a row, where she was quite violent, not til after one good week. I was very nervous, still am. But she has had 5 good days in a row. Doesn't mean I haven't been hit. I was hit and poked several times tonight. But with different intensity. And the previous 4 good days, I was not hit at all. I am so grateful for that.

I think the Lord knew from prayers that we needed some good days. It was very scary to see her heading to the extreme violence again. She did not get there, but she was headed there. I am not saying that we are out of the woods. I fully know she will get nutty again, and probably soon. But I am so thankful when the Lord knows we need the break.

Last week, Imani was praying at the dinner table when Akila was gone at dance. She prayed, "Jesus, thank you for this break tonight from Akila- even though we just had 3 months of a break". That said a lot. We talked a lot with the kids about what it would be like when Akila returned. I don't think they fully understood. Even though they know all too well what it is to live with Akila, they were so longing for her to return home, that they didn't really remember what it would be like. Now they do.

We have had to remind them all multiple times a day, to not "respond". When Akila is going off on them for riducous things, they need to not respond. When she is going off on Zeke for the way he is making Ramen noodles, he needs to not respond. When she is calling me a "stupid white person", I need to not respond. When she is going off on Imani for watching too much TV, she needs to not respond. When she is going off on Hezekiah for eating food she thought was hers, he needs to not respond.

She is trying to get a reaction. She will sit and argue back and forth a million times. She has to have the last word. She is always right. No matter how stupid what she is saying is. I just agree. I'm sure it looks ridiculous to most outside people. But it is not worth the fight. Yes Akila, "there is school tomorrow". Even when there isn't. I don't say that right away, I try to help her see the truth. I show her the school calendar hanging up in the kitchen. I bring her to the computer and show her the facts. If she is still arguing, I just agree. At this point, before this point, she is escalating big time. I agree all the time to try and avoid the escalation. It only works maybe 1/2 the time. But that is more than all the other methods (like trying to get her to count to 10, take a break in her room, do jumping jacks, squeeze clay, etc.).

She has started to see an OT. The best line of the week last week was when the OT was asking her about some of the foods she likes. She asked Akila if she likes licorice. Akila said, "No, but my dad let me try liquor once and I liked it". I thought I was going to explode from trying not to laugh or react. We have no liquor in our house. Her dad has had one beer in his entire life. You may be thinking she was confused as the two words sound the same. She knew what she was saying. She went on and on fabricating a story about how her dad gave her liquor and she liked it. She was laughing in a sort of evil way also. She refered to it as alcohol at one point. She knew. She knew.

Monday, December 12, 2011

White elephant, explain that to a FASD kiddo

On Friday evening, Akila is going to a retrogressive dinner with the church youth group. They are suppose to wear ugly Christmas sweaters and bring a white elephant gift. I didn't realize they were doing the white elephant gift thing until tonight. I might not have signed her up and told her about it if I knew they were doing that.

She will not understand this "game". Especially if she ends up with a gift, and someone "steals" it from her. Hahaha. I am actually laughing hysterically at the thought. The irony of "stealing" a gift from someone else, considering her issues with stealing. People all have different ideas of how to do a white elephant gift thing. Lots of people do it where you find something you already have and wrap it up, the goofier and more humorous, the better. Some people don't get that, and buy nice new things. Value is suppose to be $5 max, but I have seen people give nicer things than that.

Akila will not get that. If she gets stuck with somebodies used coffee mug, or something corny like that, she is going to be mad. And sees another kid get new lip gloss, or some other cute thing. I'm going to send an email to the youth group leader in charge of the event, to just give him a heads up. If you're not familiar with the gift exchange, here is how it usually goes: some kind of order is decided on in who chooses a wrapped gift first. The first person chooses a gift and opens it. The second person can "steal" the gift from the first person, or choose a different gift to open, and it goes like that. The last person to choose, can "steal" any gift they want or take the last wrapped gift.

And if Akila gets a gift that she really likes, and someone steals it, I pity that person. Akila will be mad, she will not hit them or anything- but she will remember it for the rest of her life and will loathe that person. She will put up a stink though, and carry an attitude the rest of the evening. I am quite relieved that I will not be there- if I were there, she would put up more of a fuss if it does not go her way.

Hopefully, I am worrying about nothing.

Friday, December 9, 2011

All things fun, I mean dumb, I mean fun, I mean...

I made it to the Hollidazzle Parade event at school last night. So fun. Not. Events like this are planned for to bring the kids and their families together for a social gathering, to build a sense of community and spirit. It just doesn't work for families like ours. If they didn't pump it up so much and get the kids so excited for it, we wouldn't go. We do skip a ton of the activities, and sometimes I feel like we owe it to the other kids to make an effort.

They had raffle tickets for sale. No room in our budget to buy any tickets. Kids could fill out one free ticket if they answered some questions right on a holiday quiz sheet. There were probably 15 questions, I only knew the answer to one. Akila was furious. Obsessed. It was not fun. An activity that was meant to be fun, and was for 99.9% of the kids there, was a nightmare. I finally started sending out mass texts to friends asking questions like "what was the name of the rabbit in Frosty the Snowman". My brain was totally dead, and I haven't seen any holiday shows this year. Thankfully, several friends answered and we got Hocus Pocus right. Thanks friends!

So eventually she got the three answers and turned it in and got to put her name on a raffle ticket. They had a couple of little baskets with junk in them, and an Ipod. The free tickets were not valid for the Ipod drawing, just the baskets. Then, Akila wanted to show the kids her honor roll certificate. I told her that mom and dad brought it home. She disagreed. Adamantly. More than once. Then talked a staff into bringing her up to her locker to get it. I went to the bathroom. The raffle ticket drawing happened during this time.

Akila won a basket. I should have known, she always wins stuff. The basket had a chocolate bar in it, a pack of hot chocolate, and a few coffee packets. A mom and her two kids were sitting a the table with us, very nice family. The son is in Zeke's class, and the daughter is in Imani's grade. That daughter happened to win the Ipod. When Akila came back and the kids told her she won the basket, she was mad as she wanted to win the Ipod. Of course.

I had told that mom I wasn't even entering the drawing for the Ipod as it would only cause major problems as to who would get it (plus I didn't have money in the budget). When Akila saw that this girl at our table won it, she became obsessed. She asked the girl if she would trade the Ipod for her basket. The girl laughed, it was funny after all. Not to Akila. She was serious. She doesn't see the difference in value, although she desperately wants the Ipod.

So, the rest of the event, was not fun. I was thinking the entire time, why did we come? Why do I do this to myself? The little boy in this family wanted to stay with Zeke at the parade and the mom said we would walk together. This ticked Akila off as she now hated the Ipod girl with a passion. We started to walk to the parade, and Akila was furious and jealous that Imani was walking with the Ipod girl. At the parade, all Akila could do was yell at the kids for anything she perceived they were doing that was wrong.

I just hate how all things fun like this event, almost always turn into a disaster. The good thing though, is that the other 3 kids had fun despite her issues. They are pretty good at ignoring and looking past her behaviors. Driving home, she was talking about what a horrible day it was. This made me chuckle, inside of course. She had the honor roll ceremony in the morning, and in her after school class, she had completed making a boombox out of a lunchbox. It is super cool, it has a speaker in it, and an MP3 player attached to it. The kids got to solder it together and do the wiring. She got to go to the parade. But she didn't win the Ipod and that is what ruined her day. It kind of ruined mine too. But I'll get over it. I am still so thankful that she is home, and not violent. Thank you Jesus!

Thursday, December 8, 2011

Honor roll ceremony

A few of her teachers are speaking about her on the top, and the next picture is the Principal and Associate Principal handing out the goods.



This morning was Akila's honor roll ceremony, it was very fun. Her school has uniforms and the students who make the honor roll receive a shirt that says "I am the definition of ambition" and some other school stuff on them. They can use these as uniform shirts. All 3 of my other kids have one and have been on the honor roll. This was Akila's first time, and she was pumped. I am so proud of her!!!

I have been fighting a strange mini cold this week. Started on Monday afternoon with a slight cough, not in my chest, but throat. Bit of a hoarse voice started also, and woke up Tuesday morning with body aches. No fever, no runny nose. Just slight cough and body aches. Body aches are the one thing that make me crazy, I can function pretty well with all the other stuff.

We increased Akila's Abilify on Tuesday and she has been more calm and manageable the last two days. Today she has an after school class and after that, we are going to the school for a meal and the whole group then walks over to the Hollidazzle Parade. Her school is in downtown Minneapolis, just one block from the parade. Of course, it is going to be freezing today, and I still don't feel great. But it beats cooking!

Tuesday, December 6, 2011

Mommy is out of practice

I was in meetings all day at Children's Hospital and Clinics yesterday- well until early afternoon when I then helped give Julie a ride (she was in meetings with me), and then we went to a late lunch. I got home 5 minutes before Akila got off the bus.

When she got home, she was wound tightly! Hyper, bouncing off the walls, just a nut. Not raging, getting mad a little at piddly things, but was just plain goofy. I wondered, did I give her her morning meds? Yes, I remembered doing it. About a 1/2 hour later, I was checking my emails for the first time all day and had one from her special ed teacher. Said they had a really rough day and they kept her from her classes all afternoon.

I then remembered something. I had her take her oral meds, but forgot to put the Daytrana patch on her hip. This is the ADHD med. OOPS. Major oops on my part. The school paid the price, and so did our entire family all night. She was just loony, it was one of those reminders that the meds really do help.

I am out of practice. My 3 month respite was very nice, and I have been trying to prepare myself for the return to what is our "normal". Which means rough mornings, rough evenings, rough weekends. Basically, roughness all the time. And the skating on thin ice and walking on egg shells.

This afternoon, she has an appt for an OT evaluation at Children's. It will be interesting to see what they have to say compared to what the OT at the crisis home said. I wasn't impressed with her evaluation, but this was due to several factors. The main reason is that she did not interview me and made many assumptions that were wrong and ridiculous. I do think that Akila could benefit from some more sensory stuff so I am hopeful that they will have some good suggestions for us.

Sunday, December 4, 2011

Skating on thin ice

Treading on water; Walking on thin ice; That is what we are doing at our house. Should think of some song lyrics.

Akila came home on Friday afternoon. It truly is nice to have her home, but she definitely has her edge back. At the appt with the Psychiatrist on Thursday, the crisis home manager said they have been seeing her escalate in her behaviors in the past week and might need an increase in her newest med. We all decided that it would not make sense to do that right away in the midst of transitioning her back home. I can see that she is going to need the increase. I was hoping we could wait longer.

The normal dosage for this med is 20-30 mg and she is on 5 mg, so we have a good amount of wiggle room. Right now, the slightest thing is setting her off and making her quite angry. It was not like this just over a week ago, and it is not just being home. The staff were seeing the same thing all week.

After 3 months of respite, we have locked up the knives. I have locked up my medicine. The little storage room in the basement is locked. What we all need to get back into though, is walking on thin ice around her. Being careful in everything we do and say, and in particular, in how we respond to her, or if we should respond to her. This is one of the hardest things for the kids, especially Hezekiah.

Akila will argue about anything, and she is always right. It is futile to argue with her on some things. When we got home from a school event yesterday, there was a small SUV in front of our neighbors house. She thought it was her son. I said no, it was a different SUV. She disagreed. When she disagrees, she does not do so quietly, or quickly. She is rude, loud and goes on and on about it. I quickly agreed with her (who cares who's vehicle it was!). Even after I agreed, she still carried on and on about it.

She has had multiple situations like this with the kids, and they of course don't back down usually. Especially Hezekiah. He will sit and engage and engage with her, until we have an all out war on our hands. This happens most often when we are driving, makes for a pleasant drive. This is not something new by any means. This is something that the kids have never had a real good handle on, but they are usually better about it. They are out of practice. Not one of the things I remembered to prepare them for.

They had issues at the crisis home with hygiene, like we have always had. They had started to have her shower right after school before she could do choice activities. The last week or so, they had loosened on this and let her choose when in the schedule to do it, as long as she did it. They said this was because she had been doing well lately and had earned more say in her schedule.

Yesterday, I was going to straighten her hair, so I was going to have her shower in the afternoon or early evening. We ended up not doing it and decided to do her hair today. But I needed her to shower still, as I don't want to get out of that habit. She gets two tokens for doing it, same as at the crisis home. We are going to try the token system and see if it will work, it did for them. I finally got her to shower right at bedtime. But bedtime was not easy, either nights. She is in refusal mode on going to bed, even just going to her room. And she is really tired, her evening meds have definitely kicked in.

She has had some nice time playing with the kids, but again, it has to be on her terms. And the boys just don't want to play with dolls. She has been more intentional in helping out a little, and doing some small chores. She is more intentional on showing manners and there have been several times when she has gotten mad about something and 5 minutes later told me that it is OK (usually when she is mad, I get a tongue lashing- for losing her Barbie Doll earring, or something like that she is convinced is my fault).

The hardest thing, is that I know we need to wake her up in the morning on the weekends. They woke her between 7-8 each day. It is very hard to make myself wake her up when she is sleeping in. She slept til 9:30 yesterday when I finally woke her, and I woke her up at 9:00 today. I need to be more disciplined and just wake her up earlier.

I am very grateful to have her home. But we sure can use prayers so she is able to stay home with us.

Thursday, December 1, 2011

Coming home

Akila is coming home tomorrow and I am truly excited and ready. She has been doing so well since she started Abilify. We have a chart and graph that the crisis home manager puts together. It logs her behaviors since she moved in there.

Before the Abilify, she was having about 15 issues of non-compliance a week, 18-30 physical acts of aggression towards others, 30-42 episodes of verbal aggression and 10-14 temper tantrums a week. Since she started Abilify, she has had 0-5 non-compliance issues a week, 1 physical act of aggression towards others, 1-4 episodes of verbal aggression and 3 temper tantrums. That is a huge difference- you should see the graph, there is a serious dip!

She is approved to be there until Dec. 9th, but I emailed yesterday and said lets do it on Friday. They agreed. Today was our regularly scheduled two week team meeting. Each time we have one of these meetings, Akila is convinced she will be coming home that day. She has been let down each time. Last night, she was convinced she was coming home today. I kept putting her off, and she was getting upset. So I told her she would get to come home on Friday.

You would think this would excite her to no end. Not the FASD brain. She went nuts. Said I was terrorizing her, disappointing her, etc. This was at about 3:30, and she could not be convinced that one more day was doable. Finally, I said let's talk at bedtime and see how her night went. It did not go really great from what she reported to me. She didn't bring it up again when we talked later.

This morning, I picked her up for a dr. appt. In the car, she started going on about coming home today. I said tomorrow, and she got upset. I finally got her to settle down when I told her I needed time to get a meal prepared that she could choose, and that we wanted to get a surprise ready. Zeke wants to make a cake for her. This settled her down.

I am going to the crisis home while she is at school tomorrow and packing her stuff and taking it home. I will then pick her up after school. Tomorrow morning, will be her last time at the crisis home. I am truly excited to have her home, although I know it will be very hard, I also know it is time. I am praying that she can continue with her more calm behaviors, and that she will not escalate to the point of violence at the same level as before. I am so excited to feel complete again.

Legal Aspects of FASD training- register now!



I wanted to remind everyone that you can still sign up for the training on January 18th from 8-4:30 on the Legal Aspects of FASD. Several of us blog buddies are signed up and would love to see or meet some more of you there. I'm thinking we need to go out to dinner afterwards!! If you do register, remember to mention my name on the registration(cuz I'm a serious big shot- NOT!!) and get a 50% discount. If you need me to send you the registration form, email me (my email is on the right side bar).

Wednesday, November 30, 2011

Honor roll


Akila has made the honor roll for the first time ever. Wahoooooo!!!!! I can't even tell you how excited I am for her. She was very proud of herself, and that is so important. The other 3 kids have made the honor roll (our elementary even does honor roll) and Akila never has, and this has bothered her. We have told her numerous times that she has made the honor roll from our perspective, as her grades have always been amazingly good. But this time, she will get to go to the honor roll celebration. We will be there with flags, posters, balloons. OK, we won't go overboard, but it is possible she will never make it again.

This accomplishment, is one that would not happen without accommodations. Some would say it isn't fair. I have been emailing with a parent who's local school district has been trying to get all the students on an IEP to switch from letter grades, to pass/fail and put it in their IEP's. They have said it isn't fair to a student who works hard and gets a B, compared to a student on an IEP who got a B with accommodations. I say poo-poo on them.

Just because the student on an IEP had accommodations, doesn't mean that they didn't work hard. It doesn't mean that they deserve the B. It means that their brain functions differently and their journey to the B is different. It doesn't mean it is equal to the non-IEP student, but it does mean that it is fair.

I acknowledge that if Akila had to do homework, her grades would be different. The grades on her homework would have brought her grades down, no doubt about it. She got 2 A's, 1 A+'s, 3 B's and 1 C. I also know that if she didn't have an awesome 1:1 aide working with her and helping her, her grades would have been lower. But isn't this why we give these students accommodations? So they are able to do the work, understand better, and have some success? Doesn't Akila deserve the sweet taste of success, just once in awhile?

I don't know what that school district is thinking, that kids on IEP's are going to make the curve harder, bring other students rankings down. Seriously? How many kids on an IEP are really going to be doing that with their grades? To be trying to force across the board all IEP students to go to a certain grading system, no matter what it is, seems to be contrary to the whole idea of special education and IEP's. The idea of an IEP is that it is an "individual" plan.

Will Akila make the honor roll every time? It is very unlikely, although I would welcome it! I am sure that some people in the school or out in the world, might think there is a connection to her grades and the fact that she is currently not living at home. I would agree if she were doing homework, but she isn't. Homework is not the reason for her good grades, well, it is I guess since her exemption from homework is one reason why the grades are high.

One factor for the good grades, is that she has different teachers every hour. She does not sitting in the same room for the majority of the day, annoying the same teacher. It is like she gets a fresh start every hour. Some kids have a very hard time with these transitions, especially FASD kids. I do think this is kind of hard for her, but in some ways, it is more to her advantage. When she gets to know just one teacher really well, that is when she starts to push back more and show some behaviors.

I also think that the team of teachers she has have been very patient and understanding of Akila, and for this, I am very grateful. But truly, she has a fabulous 1:1 aide, and a really good special ed teacher this year, last years special ed teacher was not very good. These two ladies have worked their tails off with Akila, been patient, understanding, encouraging and have certainly made a big difference.

And then there is the meds. The meds have helped for sure, although she has had some rough behavior at school. Somehow, she has been successful at mainly showing her rough behavior to her aide and special ed teacher. They are amazed at how clever she is like that, and how the core teachers have not seen much of it at all. I am not surprised of course, as that is how she is with us. She shares all of her junky behavior with us, and the majority of the world, does not get to see it. I have a friend who has two kids with FASD, and she has one who shows all of his behaviors to the school and world, and one who is like Akila and doesn't. She says that even though it is hard to deal with her son raging at school, in many ways it is easier as the school understands him better than her other child.

I have mentioned before, that Akila's aide this year has been frustrated that the core teachers don't see what she sees, and that she looks crazy to them when she shares what Akila is doing. Been there, done that. She is in our spot now, and it sucks, feels yucky, and feels isolating. I get it. That is all I can tell her. And, of course the evil side of me, is relieved that someone else is experiencing the same situation.

Today, I am celebrating Akila's accomplishment. I am very proud of her, and I don't care what others think about it. We will go to the ceremony next Thursday, and have a few minutes of feeling like typical parents.

Tuesday, November 29, 2011

FASD research opportunity (in Minnesota)

Akila went to the VA Hospital last week to participate in a research project for FASD. They are doing MEG (Magnetoencephalography) measurements of FASD children and they are looking for more participants. In particular, they need more children diagnosed with FAS, but will still take ARND diagnosis's also. It takes about one hour and the pay is $20-30.

The VA is doing this in partnership with the University of Minnesota. The MEG measures brain activity. If you are interested, call Nancy at 612-467-1458.

Monday, November 28, 2011

Road trip



Dorothy, Julie and I drove 90 miles out of the Twin Cities last night to surprise our friend Kari and bring her an advent basket. It was a blast. Kari is a blog friend, and real life friend who has been very important in my life. She was the trainer at the first FASD training I was able to get Michael to attend, and she really explained it all in a way that clicked with him. That was the only time he has seen her, and he still speaks highly of her and the impact her training had on him.

Kari's blog was also the first one I read and it inspired me in the fall of 2007 to start blogging. Many of us love Kari dearly, and it was lots of fun to surprise her last night. I texted her that I was going to be driving through her town and was wanted to connect to drop off some GFCF oats that Dorothy had found for her. When she showed up at the coffee shop, there were 3 of us and we really surprised her.

The even better thing, is that we have now learned that the timing was good, it was God's timing. Kari needed a lift yesterday, and He used us to give it to her. That is so encouraging. We love you Kari!

It was also a great way to make a 90 minute drive fly by, us nutty gals just blabbed the whole time and time flew!! We even stopped for dinner when we got back, and I was still home by 10:30. Normally, I don't get home from our meetings til 1 or 2 in the morning. It was a great quick little trip, and one we should do more often!!!

Saturday, November 26, 2011

Value of being weird

While Akila has been at the crisis home, we have been trying hard to do things that are hard to do when she is home. We have missed Akila dearly, but have also really valued this time that we have had to be "normal", to vegetate, to relax, to stay up late and sleep in. But, I have to admit, I am truly and honestly looking forward to Akila coming home. I did not think I would feel like that. I think I only feel like that because the med she is currently on is helping so much. I have hope. Hope is a good thing (it can be a dangerous thing if it isn't mixed with a good dose of reality though-but we have lot so that), it has been a long time.

But back to "normalcy". I always tell my kids that they are weird, and I wouldn't have it any other way. I don't like normal. That must be why God chose me to be Akila's mom. We are not a normal family, even without the issues Akila brings to our family.

Our kids don't have cell phones. Imani was at a play date yesterday with 5 other 11 year olds. She was the only one without a cell phone. I am proud of this. She does not need a cell phone at 11. I don't mean that as a judgement against parents who have given their 11 year old's cell phones. It is just something we don't believe is necessary in our family situation. Would it be nice? Yes, there are times it would have been very "convenient", and times it would have made it much easier to communicate with Imani, or even Akila.

The thought of giving Akila a cell phone is not an easy thought. She loses everything, so does Imani for that matter. The one thing with Akila though, is that she doesn't have any true friends that she would be texting, so it might not be too bad, initially. All Imani wants to do, is text. The bummer with poor Imani, is that if we were to get her a cell phone, it would send Akila to the moon. But I hate to give her a cell phone just to feel "in"- that would be too normal!!!! I want her to feel cool about not having a cell phone. I have work to do in this area. One of her friends has even offered to give her a cell phone that they could easily fit in their family cell phone plan. A very generous offer, but again, I am not ready.

We don't have a cell phone plan. My cell phone is through the dance studio where I work. Michael rarely uses his so we have a pay as you go plan for him. So, to do a cell phone family plan would be a huge addition to our monthly budget, especially since Michael's new job and salary, will be lower than what we have been living on. I'm looking at this as a great new challenge that God has placed before us.

Anyway, my point is, we are not normal. We don't sign up for many activities, our kids are not over scheduled. As a matter of fact, when I leave one night week sometimes for an activity (speaking event, meeting, etc.), most of my kids whine that I am leaving too much. They have no idea what "normal" families are like. If you are a "normal" family, God bless you. I am truly not judging you, please know this. I just love being weird. I have always wanted to teach my kids the value of being weird. I want them to know it is OK to have dread locks. It is OK to wear socks that don't match (I do not match socks after laundered). It is OK to wear the hat with the jingle bell attached to it. When I was in junior high, I had a green sweatshirt that had s0 metal rivets in through one of the sleeves, and each rivet had a different colored ribbon tied through it. It was hideous. I loved it. My science teacher (whom was a total GEEK- not "normal"), would sing some song called "Buttons and Bows" that made me sick. Not because it wasn't "normal", but because he was a horrible singer.

I have mentioned in the past that my mom was a member of the Willmar 8. She was a quiet rebel, not normal at all for a small town mom in the 70's. I just think that "normal" is what the Lord planned for me. I am by no means saying He thinks I am going to be a superstar. Or that I will be famous. What I mean, is that I am not going to go by what the world says I should be doing. That I should vote for this candidate, or that candidate because I have a special needs child. Or because my kids receive assistance and go tot he public schools. Or because I believe strongly, to the core of my heart, in service and giving back. I will not do what the party line tells me to do. I am not normal, I am weird.

I do not make sense. Many people assume I am conservative because of my religious views. Many people assume I am liberal because of my experience/views on education and special needs kids. Again, I am weird. You cannot be guaranteed of either viewpoint with me. I am not normal. And I am so thankful to God for that stance. I am weird!!!! Wahooooo!!!

So, here is a picture of Zeke's birthday party, he had 3 buddies over. The boys got to have an overnight party this year, as it was possible with Akila being gone.




Here is Hezekiah's birthday party and the 3 buddies he had sleep over



The picture on the right, is of an Air Swimmers flying shark. The boys each got one for their birthday, Zeke got a clown fish one (don't have a pic of that one). They are honestly one of the coolest toys I have ever seen. They are basically a helium balloon that has a remote control and "swims" (flies) in the air. It is so cool, can't even explain it. Highly recommended for a Christmas gift.


Above is a picture of Imani cooking. Can you believe how grown she is? It is freaking me out. Puberty stinks on so many levels. I am not ready. But she is amazing, and we are blessed.


Thursday, November 24, 2011

Home visits

Akila had an appt on Wednesday morning that I brought her to, and then I brought her home for her first visit since she left to stay at the crisis home on Sept. 1st. She did really good, and it went super well and was so nice to have her home.

At first, she just walked around the house, kind of taking it all in and saying that she remembered different things. Then she played for awhile with Zeke and Imani, and spend a ton of time going through all the toy catalogs we have gotten in the Sunday papers. She also spent some time drawing.

When it was time to go, she did not put up a fuss at all. I had told her the day before the two rules were that if she got out of control, she would have to go back to the crisis home right away, and that if when it was time to go, whether she was being good or not, if she threw a fit and did not cooperate, she would not be able to come again for a home visit and that we might have to call the staff to come and get her.

Then this morning, I picked her up at 10:00 and brought her home. We were planning on leaving for my brother Tom's in Andover around 2:00, so she would have some more time to spend at home. Once again, she did great. She played a long time with Zeke and Imani, played catch with Hezekiah, and did some more drawing.

At Uncle Tom's, she was awesome. She asked Aunt Paula to show her how to knit. Paula knows how to crochet, and knit a little bit. But for a couple of hours, literally, Akila knit. She needed a good deal of guidance, but Aunt Paula was patient with her. The biggest challenge was that at the end of the night, Akila wanted to take the knitting stuff with her to the crisis home. Knowing that they are not going to allow knitting needles, I said no. She thinks it would be fine to have them there, I explained why they couldn't have them. She disagreed, and put up a fuss for awhile.

Normally, this would have been explosion time. It was not. Amazing. We normally can't stay as long as we did today. I had told the home we would have her back at 7:00, we got her back at 8:30 and could have stayed longer. I am definitely feeling ready to have her come home next week, and am looking forward to it. This medication change has been amazing. There have been other times when she has started on a med, and we noticed a good difference. But I have never noticed a difference this big. She was knitting for at least 2 hours. In the past two weeks, she has put together two 500 piece puzzles.

I am thankful for so many things on this Thanksgiving day. I am thankful for crisis homes and the staff that work there 24/7 and on holidays. I am thankful for medications that are able to help people function and become or stay healthy. I am thankful that after 3 months of unemployment, Michael will be starting a job on Monday. I am thankful for all 4 of my children, and that one is working so hard to behave, and the other 3 are working hard to support and love her. I am thankful that my neighbor/mom Kathy, has finished her last treatment of chemo and can now try to recuperate and get back to the active life she loves to live. I am thankful for some newly deepened relationships with some faithful women who are parenting tough kids. I am thankful for the blogging and the opportunities that we have to share and support each other through this virtual world. Mostly, I am thankful that Jesus laid His life down for me, and shows endless mercies on me daily.

Monday, November 21, 2011

Two words, meant a lot

Akila was great yesterday when she was with us. The one "Akila moment" was when Zeke was checking us in at church. Our church has a computer system that you check in on and we have a bar code thingie we can scan so the kids name tags print out. The kids take a turn each week scanning the bar code and printing the name tags.

It was Zeke's turn, and he ran ahead to do it. I caught up to him when it was his turn in line. Akila came up and went nuts as she thought it was her turn. I told her it was Zeke's turn, and she disagreed, in "Akila fashion", but not quite as excessively as normal. She was argumentative, rude, and called me a liar. I ignored her and was just trying to walk Zeke through the computer. She kept calling names, and when Zeke was just about done she walked away.

I turned around and a father who was waiting in line behind us smiled and said, "It's OK, " very encouragingly. I smiled said, "thanks, it's our life". What was so nice about this brief interaction was that the man was understanding, encouraging and not judgemental. I know he only said two words, but his smile, body language and patience spoke also. It was huge, and it was what I needed.

Often, when in an almost identical situation, you can see, feel and hear people's judgement and impatience- even at church. It was a beautiful moment, I have thought about it more than once in the last day.

The other great thing about this situation, was that when Akila walked away, she went to the water fountain. When I caught up with her, she had already moved on and was no longer angry. This is unheard of, and she has been doing this for 8 days. I really think that the new med, Abilify, is helping her a lot. There have been several instances at the crisis home, where she could have gone off the deep end, and did not. She was even kicked by another consumer last Thursday evening and the staff said she handled it really well. This is nothing short of amazing, nothing short of the Lord intervening when we really needed some hope.

Other than that little incident at church, she was very well behaved yesterday. I think we are getting very close to the point where she will be able to come home, and I am really looking forward to it. This is nothing short of a miracle, another thing I am so thankful for. God is good.

Friday, November 18, 2011

Pointing the finger

Akila is easily offended, and it is really difficult to deal with. She was offended last night because of the after school bus driver. She actually kept on complaining that he "abused" her. She is so going to get us, or someone else in big trouble someday with a false allegation. She was screaming that a staff was raping her last week while he restrained her. Can you say ticking time bomb?

Yesterday, the bus driver would not start to drive until the kids cleaned up some kind of mess they had made on the bus. I am not very clear on the situation, as over the phone, Akila gets rambling and mumbling, and is very difficult to understand. But he would not leave, and said he would sit there until it was dark. She feels this was abuse. I explained to her that is not abuse, and if they had made a mess, they did need to clean it up.

The comment about staying there until it was dark, is what seemed to put her over the edge. I explained this was just a figure of expression, that he was making a point that he would wait as long as it took for them to clean up the mess. But she did not get this at all.

Then there is a student at school who told her to shut up. She is very offended. This student also takes dance at the studio I work for and where Akila takes dance. She thinks I should kick her out of dance. I explained that I could not do this, and explained all the reasons. She of course disagreed, and said I was abusing her by not kicking this student out of dance. We went round and round. I tried to change the subject, to no avail. I also explained that she has done a lot worse at dance and has never been kicked out. She of course disagrees.

Today at school, something happened with a student also. I have no idea what, as she was so irrate as she was explaining it to me on the phone, that I did not understand any of it. But she was mad at her aide also, who was "rude" to her. She also gets going on the staff at the crisis home, and how rude they all are.

This is such a hard thing to deal with, as she would honestly sit and complain about others actions for hours. She just cannot see that it was her actions that usually caused others to have to do something that annoys her, or something she thinks is unfair or rude. Right now, when she is like this on the phone, and I can't distract her, I hang up. I'm not sure if that is the right thing to do, but I do it. Soon, I won't have that option.

Blaming language

I recently found, or should I say noticed, some language that has bothered me a little and I thought I'd share it with all of you and get your opinions.

FASD is a primary disability, one that a child/person is born with. Then there are what are called, "secondary disabilities". This is where I have recently been a little bothered by one of the definitions used by some organizations. A definition that an organization I am familiar with has been using for secondary disabilities is: "Secondary disabilities are those that develop as a result of failure to properly deal with the primary disabilities."

Let me tell you the part of this definition that bothers me, if you haven't already figured it out. This part, "that develop as a result of failure to properly deal with". This to me, sounds like if us people who are parenting and loving our kids, had worked harder, and "more properly", our children would not end up with the secondary disabilities. Akila would not have ADHD if I had only been more proper in dealing with her brain damage. She would not have a learning disability if we had not failed to deal with her properly.

I know this organization probably does not mean it like it sounds. Or maybe I am misinterpreting what they are saying. But that is how it sounds, like I failed. And all of you out there who are parenting and loving our children with FASD, have not done it properly. According to this language, we failed. And this definition is being used when training people.

I did send an email yesterday with my opinion on the wording. I was not able to find their source on the definition, and I am guessing they have one. I searched through Ann Streissguth's book, "Fetal Alcohol Syndrome" where she talks so much about secondary disabilities. She is one of the main researchers on secondary disabilities. I did not find this definition.

Here is the definition that sounds better to me: "Secondary Disabilities are those not present at birth but occur as a result of the primary disabilities." Yes, Akila has ADHD, learning disabilities and other mental health issues. They are for sure a result of the prenatal exposure to alcohol that resulted in brain damage.

I know that some people may think that I am being too sensitive, and maybe I am. But it worries me that we are training people out there, educators, medical professionals, students, etc. with language like this. If someone is not involved enough within the field of FASD, or within the family structure of a family living with FASD, they could make some serious assumptions about us if that is the definition they believe.

I know that it is not our "failure" that caused Akila to have ADHD, and some of her other secondary disabilities. But people like me who are parenting children with FASD, get enough messages, subtle, and not so subtle, that we are failing. No matter how involved we are, no matter how hard we try, no matter how much we learn, we do go through periods of feeling like we are failing. How could we not with the extreme behaviors we are facing daily, hourly. We certainly don't need advocacy organizations to use language that sends the message we hear daily from the majority of the world.

I have said my peace.

Thursday, November 17, 2011

Stupid van

When Akila called after school today, she was not in a good mood. She was whiney and complaining like she normally has been. Hoping that she is doing OK the rest of the evening, and not spiraling back into the abyss.

The stupid van didn't want to start this morning (notice the word stupid in my vocab a lot lately? I am kind of immature, a teenager at heart!). Michael was going to take it to Honda to get new tires, they have a special and the garage we were at this week said the front tires were in really rough shape. Perfect. So he ended up at Honda, and had them fix the exhaust. They said the battery had something faulty with it also so we said to fix that also. Basically, we just about have a 1999 Honda Odyssey with over 184,000 miles on it, and all new guts. It should be good forever now!!!! But I know better.

Good news is that I found our receipt from 18 months ago on the battery and it was still under warranty. So our bill today for 4 tires and a fixing the exhaust system was just $737. Ouch!

But the even better news is that Michael has accepted a position and will start the Monday after Thanksgiving. What a relief and a blessing. It is close to home which is nice as his job the past 5 years has been at least a 30 minute drive (in Eagan). We will have the best health insurance coverage we have had in over 10 years, phew!!! The salary is much, much lower than what we are use to, so we are going to have to make some changes for sure. But we are thankful to the Lord for this opportunity, and will work hard to figure out how to make it work.

Hope

Akila really has had an awesome week so far, and I am so thankful!!!! She started on a new med on last Friday, and has a great behavior streak going that started on Saturday. I really do think it has something to do with the meds, not just a fluke.

Tonight, she was in a great mood on the phone, both times. The last call, she put one of the staff on the phone who told us that she has had a great night, been cooperative, enjoyable and working hard. She said she hasn't worked this week yet, but when she worked last week with Akila, she struggled greatly with her. She said it was like Akila was a different child.

Oh how I pray this can continue. It is amazing how much hope this can give you. As I have been very honest and open with, I am not convinced. We have had too many let downs over the years, and I have learned to protect my heart from let downs. But I am hopeful. I know God can do amazing things, and work wonders. I have ultimate faith in Him.

I am also experienced enough with medications, to know that even if this med is helping her right now, it more than likely will not always. The majority of meds seem to wear off eventually, or their effect is not as strong long term. But even if this med gives her a good month, or a couple of good months, it is worth it. We are in survival mode, and we will take what we can get. Right now, I am just happy to hear good reports, after several weeks of rough reports, and lots of restraints.

On another note, I don't think I mentioned that our minivan broke down last week. We actually had an appt for this Monday to have it looked at. The lights on the dashboard started flashing on and off all the time about two weeks ago, so we made the appt. Plus, the steering wheel has been shaking for over 6 months and gradually getting worse. Then, last Tuesday, the van went dead and we had to have it towed in. Oh yeah, and over the weekend before it went dead, it started to sound really loud like a race car, and exhaust/muffler problem probably. Great.

During our current situation of unemployment, having one car is not so hard from a time perspective, since Michael doesn't need a car to get to work. But it royally stinks more than normal from a financial perspective. There was just one day last week when i had to get Akila to a Dr. appt, which was at the same time Michael had an interview. Dorothy and Robert were kind enough to let us use their extra vehicle for the day. Other than that, it has worked just fine having just one car.

We have a local garage that we have found where we love to go, when we have to. The two guys who run it are top notch, very ethical, and very fair priced. Turned out, the alternator they put in it in June was faulty so they replaced it at no charge since it was under warranty. But we also needed new engine mounts, all 3 of them, and that was not an easy process. $650 later, it is running. But it is still super loud. He said that the shaking from the bad engine mounts, effected the exhaust. It is totally fine to drive, and we can decide when to replace it in the future. So basically, you will know when we are arriving anywhere, as it is fairly loud. Fits right in our neighborhood!

Tuesday, November 15, 2011

Racial slurs

Akila has been using racial slurs for several years now. She often doesn't use them in the right context. She will call me the "N" word, and a black person a "stupid white person". Most of the time though, she will use them appropriately. Haha. Appropriately. Wrong word. What I mean, is that she will call a white person a stupid white person, or a black person a stupid black person.

I and many others have had conversations with her about this, and how inappropriate it is. How it can and will get her into some serious trouble someday. She obviously doesn't get it, and uses these words when she is not very regulated, and is having a hard time controlling everything she is saying, and doing.

And now we have a new problem. A taxi is what is driving her to and from school while she is in the crisis home. Mpls Schools transportation says that is our only option. Not a great option. Different drivers all the time, and they are obviously not trained in dealing with kids, and for sure are not trained to deal with special ed kids, and are especially not trained to deal with Akila! There have been several issues. The taxi company has complained about Akila, how she won't buckle up, stay buckled, and is rude. And Akila has been complaining daily about the drivers and how rude they are.

Again, it takes a lot of patience to work with Akila, and these people are not trained. It turns out that Akila got the pack of cigarettes mentioned here out of the taxi. She said they were on the floor and she picked them up and took them. Lovely.

But here is the new problem. Many, I think the majority, of the taxi drivers are Somalian. Not a problem in and of itself, except that this is the new group that Akila hates now and is using racial slurs against. Last night, she was going off on the "blankety" Somalians. I told her that it is OK to be frustrated with someone, and to not like them even. But it is not because they are Somali that she has an issue with them. It is because of what they said or did. Now don't get me wrong, I'm not saying they did anything wrong even, but in her eyes they did. I have been saying that to her for months, as she complains about this staff or that staff at the crisis home, and brings their race into it.

I am now nervous, about when she figures out that several of the drivers are more than likely Muslim, and starts to say derogatory things about their religion. It is one thing for the crisis home staff to get called racial slurs, they know it means nothing coming from a child with brain damage (although I know it is still annoying), but for a taxi driver with no understanding of her disability, it might not go over well. So one of my new prayers, is that she can control her mouth with the taxi drivers and that if she doesn't, that the drivers will respond with patience. Lord knows that all who work with and love Akila, need lots of patience.

"Better" days???

Akila has had a couple of better days at the crisis home, isn't that awesome? Then why am I not excited about that? Because today at 1:00 we have our team meeting.

At the meeting, the manager of the home will report that she has had 3 better days, where she has made better choices and calmed down more quickly. Everyone will be really excited, and think that we are getting close to having her settled down. Wouldn't that be lovely if that were the case? I pray with all my might that it is the case. But can you blame me for thinking that this is just a phase?

She has more than once, and in the past few weeks even, had several better days in a row. That is always how she has been. It use to be that she might have a good week, followed by two rough weeks, or two good weeks, followed by 3 rough weeks, or something like that. In the past 6 months, it is measured more in days.

As awesome as all of the staff at the crisis home are, and they are great, and as awesome as the leadership team is that meets every two weeks to talk about her, they still don't know her like I do. They don't know her patterns, her cycles. Same goes for the school. They have been totally awesome, but I don't know if they really know what to think when I tell them that she will start to go down hill in November, as she does every year. In many ways, I think people think that I am being negative, pessimistic, and that Akila will live "down to" my low expectations if I have them. But they don't know her as well as I do, nor do they love her like I do. And that is not at all a judgement or a bad thing, it is just a fact. Like I said, I think they are all really good at their jobs.

So, I will bring the incident reports with me that the crisis home mails me after each "hold" (restraint). It is truly comforting, if that is the right word, to have written documentation from this home of how Akila acts during a rage. One report, which I will not give you all the gory details from, is very interesting. The staff writes about how after she was very verbally aggressive (yelling racial slurs and swearing), and physically aggressive (punching with a closed fist, kicking, scratching and stabbing with a pen) the staff eventually after several attempts at redirection, decided to remove himself from the situation since Akila was mad at him. He was going to go downstairs, and while doing so, Akila ran at him and attempted to push him down the stairs. He was able to retain balance and did not fall. He went downstairs and she then turned her aggression to another staff. He returned after 2 minutes and ended up having to restrain her for quite awhile.

There are more details, that are even harder to share- I will spare you. The entire incident report, could be one that Michael or I wrote a 100 or more times. Just put our names in, and it is our life. I am glad she has had a couple of good days. My sincere prayer is that the medication is helping her to be more calm and make better choices. But I am not ready to believe that the aggression is over. I will share that at the meeting, and once again, I will feel like I am being a pessimistic mom who might be perceived as not wanting her child. I want her more than anything to be able to live with us. I am totally willing to put up with all the drama, all the querks, all the swearing, all the challenges. I just cannot put up with the physical violence.

So please join me in praying that these last 3 "better" days, are the start of something new, are an end to the violence. But also please join me in praying for what to do if it is not. That is what is keeping me up at night and is breaking my heart. What do we do?

Sunday, November 13, 2011

Serving families w/special needs children- a unique idea

I just got an email from a family in our church that is trying to serve families living with special needs children. A small group of families is banding together to provide a date night for families like ours. How cool is that? I am in tears at the mere thought of this.

Often it is hard for people, families, staff, agencies, etc., to figure out how to truly support and help families that are living with special children. People want to help, but don't quite know how. This is an awesome idea of how to support families like ours, and I am so thankful to God that people out there are praying for us, and trying to find unique ways to support us.

I learned when my mom was sick 6 plus years ago, to not turn down help. I learned that when people say, "let me know how we can help", this usually means they have no idea how to help- and rarely it means that they also don't want to get involved (the majority of people really want to help, but just don't know how, or feel uncomfortable). I have learned to suggest a specific thing or two I am willing and capable of doing when I think someone needs help. I also think it is a blessing to "allow" someone to serve you or help you. I know that when I offer to help someone, I truly mean it and feel better when I am allowed to serve someone.

I am so excited that this small group has found a way to "walk the talk" of a Christian. They are not talking about it, they are doing something. I have politely declined as the date night is next week when Akila is still at the crisis home. Michael and I have been able to get out several times during this respite as the kids can stay home for a few hours and take care of themselves now. I guarantee that if she were at home, I would be all over this wonderful invitation.

Not what I expected to find...

When we went to pick Akila up for church this morning, I went with her into her bedroom while she was finishing getting ready. I grabbed her backpack to look through it for the missing money and she went ballistic. I told her I just wanted to get the fundraiser info so I could turn it in, but she wouldn't have anything to do with it. She obviously had something to hide in it.

On Friday after I found out she had "lost" the money from the fundraiser, I talked to one of the lead staff at the home and asked them to be on the lookout for the money. I also asked them to check through her room on Sunday when we had her at church. After she acted very suspicious, I asked the staff to for sure check through her backpack and told them how she was acting.

Akila was on edge today, kind of the typical Akila. Just about every Sunday, after we leave church, she is trying to remember the name of some of the songs they sang in Sunday School. When we don't know the name of the song, after she tells us 4 or 5 words, she gets very upset. Name that Tune is pretty hard with only a few words, no melody (she doesn't sing it, she just says something like "Christ Alone" and thinks we will come up with it). We had many guesses, but none of them satisfied her, although I am pretty sure we guessed the right song. It is not a game for her, she actually wants to know the title and doesn't. This causes much angst. Even when we are positive, tell her it sounds like a great song, tell her we know the song she is talking about but can't think of the title. Nothing matters to her except if we come up with the title, the right title in her mind at least. It is really fun.

Today, while she was getting upset, Zeke said something insightful. He said, "Akila, when we spend time with you, the purpose is to enjoy you. Not so you can be angry." She agreed, but kept on her pursuit of Name that Tune.

After we had lunch, and brought her back to the home, we all went inside to see a puzzle she has been working on. As Michael and the kids were in her room, the staff brought me aside and told me what they found in her backpack. A pack of cigarettes. NOT what I was expecting. I didn't even say anything to her. I need to, but am avoiding it as she is going to get yucky on the phone. But I guess I can just hang up. Maybe I'll call her now.

Friday, November 11, 2011

Stupid school fundraisers

Yes, I just used the word stupid in my title, but with good reason. I hate school fundraisers. Let me clarify, I mean the ones where they want the kids to sell "crap"; over priced trail mix, frozen cookie dough, trinkets, etc. I think they are stupid, and I can't hide my emotions about them. I believe I probably blog about them every year, but I am too lazy to go back and look.

I think that I mentioned withing the last few weeks that Akila called me on the night that the school handed out the fundraiser info. She was gung ho on selling it and the staff had told her that they don't do it, she would have to do it with her parent. I think she wanted to go door to door. When she called me, I reminded her that we never participate in these fundraisers. I always do a straight donation to the school, as they get MORE money that way, instead of getting the 20% or whatever it is that they get from the sales. Won't be doing it this year due to our current unemployment situation, but I have every year.

Plus, in a larger family, there is now way for each kid to sell enough stuff to get the STUPID prizes that get them so excited about. Who out there wants to give my kids a limo ride, so they can stop being obsessed with selling crap to get a limo ride!!!!!!! So dumb on so many levels. Then add a special needs kid into the mix, and it is a horrific situation.

Anyways, I reminded Akila how we never participate in them, and she just fought with me. Eventually, I had to hang up. Later, she was restrained. The instigator of a horrible evening, once again, was this stupid fundraiser. Have I mentioned yet that I think it is stupid? I'm a little obsessed with that word tonight, forgive me.

Tonight, Akila tells me that she lost two five dollar bills. What? I asked what she was talking about. She sold something out of the "stupid" book (I'm calling it that, not her-shocking) to her after school teacher. She now can't find the money. Perfect. I tried to get her to think of where she put it,but she kept getting mad. I also tried to remind her that this is one of the reasons why we don't participate in the fundraiser. It is too hard to keep track of the money. Now, more than likely, I am going to have to pay $10 to order this teacher's item.

I will repeat it again. Stupid school fundraiser!!!!

Tuesday, November 8, 2011

Structure within the home

I was just trying to explain to somebody how I anticipate things working out when Akila returns home. I fully expect things to be nutty again, and for it to be back to "normal" fairly quickly. I said that we plan on trying to implement some of the structure that the crisis home has, but we can't do it all.

After all, we want to remain a home, and if you place to much structure within the home, it will not feel homey. That is my opinion. One of the things they have been doing at the crisis home, is having Akila shower right after school before she can do any of her choice activities. She fights this every day. She did at home as well, and we normally tried to get her to do them in the evening. They did originally, and switched it to after school due to the problems that would arise at bed time.

She complains to me almost every day about the shower schedule. It infuriates her. I tell her that I agree with them and that she will have to do it at home also. She is not happy about this. Well, here is what I anticipate. All 4 kids get home from school, and I spend 30-120 minutes trying to get Akila to take a shower. While the other 3 kids sit and wait for attention/help. And during this shower game, she will be violent. There will be restraints. It will not be pretty. They have been doing this shower schedule with her for 9 weeks, and she is still fighting it. Not to mention that when she gets home, she will think that all the rules at the crisis home go out the window. Even though I have told her that we are going to implement some of the same rules, including the shower schedule. Blasted puberty and body odor issues. I so wish she did not need a shower everyday!!!!!!

So I am struggling with which of the rules to bring home, what kind of structure makes sense within our household. I admit I am not a structured or organized person. It is not in my nature. I am willing to do some of it for sure, but I don't think we will be able to make enough changes that it will make a big enough difference.

Sunday, November 6, 2011

Anticipating non-school days with joy

LinkThere is no school tomorrow. Normally, I start dreading a non-school day a few weeks before it arrives. It has been a strange phenomena while Akila is staying at the crisis home to not have this feeling of dread lurking up on me.

I actually look forward to these days lately. Unfortunately, when Akila is home, a non-school day means another full day (vesided the weekends), of putting out fires, staying off rages, protecting the other 3 kids and other fun things like that. Tomorrow, we are going to have a playdate with another family and get out of the house and do fun things, without having to worry about issues that may arise. Not saying we won't have any issues, but they will be the typical kind. Another thing I look forward to on a non-school day, is that I get to sleep in. When Akila is home, she is my alarm clock. I am a night owl and not a morning person, so this is a true treat.

I know that Akila will be coming home either at the end of this week or within a few weeks, but I am making sure to try to get as much out of this break as possible. I know things are going to change immensely when she returns. And as much as I have truly enjoyed this break, and am so grateful for it, there is still a part of me that longs for Akila to come home so I, or we, can feel whole again. I will easily feel differently after she has returned and starts beating on us again.

A sidenote- please keep us in your prayers as it pertains to employment. Michael is still unemployed (since Aug 15) and he has two interviews this week. Pray for wisdom if he is offered either of the jobs, as they are both below the pay range he is looking for. But God knows what we need to be sustained. It would be a real blessing in timing for him to have a job before Akila returns home.

Saturday, November 5, 2011

Staff

At the last team meeting at the crisis home, I shared my appreciation at how good the staff are. I told the manager and director that it is a very odd feeling to walk out of the house while your child is in a frenzy, calling names and obviously escalating.

They said no worries, that is what they are trained for and paid to do. None the less, it feels very strange. I will not lie, it also feels very good in an odd sort of way. To be able to walk out the door, or hang up the phone when she is completely dis-regulated and acting out of control, is a nice option. It is an option that when we are living with her 24/7, we wish we had sometimes.

This is one of the gifts of this break, this respite. To be able to walk away or hang up. And as good as it feels, it also feels very strange. Akila is my daughter, I love her deeply, I am responsible for her. And to leave her in a rage, knowing that she will more than likely be hitting, kicking or biting the staff, is an awful feeling.

It is similar to when your child, neuro typical or not, bites a kid on the playground or in preschool, or hits them. You feel awful. You apologize to the other parent, assure them it will not happen again and teach your child it is wrong and give them a consequence. The neuro typical child, will more than likely learn not to do it again. The brain damaged child, will more than likely not learn. Either way, it is embarrassing, and you feel awful. You apologize.

Each time I get a call that Akila had to be restrained (she was twice yesterday), I want to say can I talk to the staff she was attacking and apologize. Again, the manager and director tell me they are use to it. They also say it is easier if the parent does just leave when it is getting dicey. I totally understand that. It is similar to when I work in the church nursery and a child is having separation anxiety. It is much easier if the parent just bolts instead of trying to acclimate the child to the environment. We can do that, and the longer the parent stays, the less likely we will be- usually.

I keep wondering how much they pay the day to day staff. I'm guessing no more than $15 an hour, but hopefully I am wrong. These staff put up with a lot. Akila is not only hitting, kicking and biting, but she is also using racial slurs. Saying she hates black people one minute, white people the next.

The huge advantage these staff have, is that they get to go home and decompress. Parents don't get to do this. Now, maybe one or two of the staff also have a challenging child at home, and I can't imagine doing it at work and home. Akila will be coming home in the next few weeks, and we will go back to 24/7 challenges.

It has been nice to let my brain decompress these past two months. When Akila is at home, I am always thinking ahead, hot to avoid a rage or an issue. Then during a rage or issue, I my brain is at a heightened arousal mode obviously. After the rage or issue, my brain is processing what just happened, and thinking of ways to avoid it in the future. And the cycle continues, on average 5-20 times a day. Yes, my brain needed this rest, as did my body.

Not only is it hard on the body to be hit, kicked, and bitten each day; but it is also hard to restrain her. My lower back was not good going into parenting Akila. Now, it is a mess. The stress also does a job on my body. I have gained weight, and I am sure that some of my headaches are a result of the stress (although I have struggled with headaches/migraines since I was a teen).

I am so grateful for staff people who work in crisis homes, group homes, and residential treatment centers. I am sure that some of them are not fantastic, but I have only ran into fantastic ones at this crisis home. What I also appreciate, is that the staff at the crisis home, especially the director and manager level of staff, seem to understand FASD. And as I have shared, that is hard to find.

Friday, November 4, 2011

A Legislator

Last weekend, our local state legislator Bobby Champion was door knocking, and he came to our door. I listened to his spiel about light rail in North Minneapolis. Then, he graciously listened to my spiel on FASD. To his credit, he was a little bit familiar with FASD. He had some ideas about working with the churches to get the word out.

He even said to give him a call if I wanted to work with him on this. Well, what do you think? Am I going to call? YES!!!! I told the MOFAS Policy person at the MOFAS Annual Meeting on Wednesday night also (right before I went to the Kitty Kat Club- Meooowww!). She was excited and wanted to make the connection with me.

I mentioned to Mr. Champion that I believe FASD is what is causing so many issues in our community. The gangs, prostitution, drugs, etc. I watch my neighbors, I see pregnant women drinking, I see young people and adults who have all the behaviors of a prenatally exposed person, and I know we need to hit neighborhoods like mine HARD!!!! I am not saying that we don't need to hit middle and upper class suburbia also, we do. I especially see the light to moderate social drinking that is effecting tons of unborn babies. But in my neighborhood, I am seeing heavy to severe drinking effecting unborn babies (again, I know it happens everywhere, but I believe it is happening at an alarmingly high rage here).

I am excited that I may have found someone who will join "our" team. I just have to follow through. And I will!!!