Thursday, May 22, 2008

$3,000 - YEY!!

I am celebrating that we have spent $3,000. You heard me right, spent it. You maybe thought we got our economic stimulus money or something. No, we have meet our health insurance $3,000 deductible and those lovely insurance people are now going to cover 80% of our medical bills. How wonderful. Something is messed up when we have gotten to the point where I am excited to meet a deductible.

But now, every time we are at the Psychologist, I won't be as annoyed at how much we are having to pay for the appt. Nor will I put off too long taking a kid in to the Dr. when I think something is wrong. I won't put off making an appt. for Akila to have her routine screenings (like echocardigrams, renal ultrasounds, eye exams, etc.) for her Turner's Syndrome. Just wanted to share our "great news". Ha.

Two Good Days, I'll Take It

I am on a high right now and I'm really enjoying it. Akila has had 2 really good days, in a row!!! On Tuesday, she came home from school in a good mood. I was watching one of my friend's daughters, Kalynn, and Akila played with her for awhile before Kalynn left and the she played nicely with Imani for quite awhile. She was respectful, patient and really fun. I was praising her all night!!! She got a 4 on her behavior chart, the first one in several weeks, and probably the first one she truly earned. She even stayed in bed at bedtime. It was a really fun night.

Then, yesterday morning, we had our appt. with the Psychologist. She was so excited to see him and show him the chart with her number 4. Never mind that the rest of the week were mainly 1's and 2's, she had a 4. Never mind that we had a horrific weekend, I was trying to focus on the 4. It was really fun. While the Dr. left the room to get something off the printer, Akila pointed to a toy truck on his shelf that she wanted to play with. She does this every time we are there, but will never ask him, she asks me. I told her to wait until he returned and ask him. This has set her off every other time and made her quite angry. She said OK this time. I praised her for her response and we briefly talked about it, and that if she kept this up she would earn another 4.

We stopped at Rainbow Foods after the appt to get a Lunchable for her and she was describing a red bag of popcorn she wanted me to get as well. I told her that I would put it on the grocery list but that right now, we are just buying the Lunchable. Normally, she would freak out over this, since I just said no. She did not, again she said OK, which I praised her for and we talked about the 4 again. It was soooooooo nice.

After school, she did pretty well also. There were several times when she was starting to lose it, but was able to get herself calmed down. She was getting angry once when I was telling her to leave Hezekiah alone and called me a moran and immediately apologized and was very aware of her behavior. If she gets mostly 4's with a few 3's in a week period, she gets to go rollerskating as a reward. I really hope she can do it. Not to sound pessimistic, but I know the high of the last 2 days won't last. But it has been a great 2 days. I am swamped with work (the dance recitals are next weekend and I'm working on the programs and tickets-not fun), I got to clean up two poop messes yesterday (I'm not going into details on that), but I was and still am in a great mood. I haven't been called many names, or been hit or kicked at for 2 days. And I have slept.

You know you're living an interesting life, when you are feeling good for haven gotten sleep, not being hit, kicked or called names, and all in the midst of cleaning crap. Life is good.

Monday, May 19, 2008

Monday Morning

Well, we had a rough weekend. We went out for brunch yesterday and Akila had her worst meltdown yet at a restaurant. Amazingly, our kids including Akila, usually do very well at restaurants. Not yesterday. We were able to make it through the meal before I finally had to take her out of the restaurant. At this point, the waitress was running around with her head cut off trying to get us our check and get us out of there. I may have to pinch Akila whenever we are getting poor service somewhere, her tantrums seem to make them work much more quickly.

We came home to do yard work and play outside, but Akila spent at least the first hour inside in a rage with Michael. When she was finally calmed down and came outside to play, I heard her from the side of the house being really mean and calling a neighbor kid names. I came around the house just as the girl was running inside her house to tell on Akila. I calmly told her to come in the house with me, she would not. I ended up needing to hold her arm and strongly guide her into the house. As I was doing this, she was twisting around and trying to bite me. She was just very out of sorts yesterday, it was not fun. This went on and off all day.

Finally, by supper time, she was a bit settled down. A nice day to play outside seemed to help. She has not been sleeping well lately, either the Melatonin effect is wearing off or the Dexedrine she is on is messing with her sleep, I'm pretty sure the latter. She has not been falling asleep very well at all in the evening. Last night she did, I was amazed and relieved. Until 4:30. She woke up then and has been up ever since. She woke Zeke up around 5:30 and Imani at 6:15. Before Michael left for work, he had a not so fun confrontation with her. When I finally made myself get out of bed, she was super hyper, I mean extremely hyper.

Zeke has an earlier bus stop pick up now and it is just a few minutes after the other kids bus pick up. Paris, our neighbor who goes to the same school and is a senior, watches my kids at the bus stop. When Zeke and I arrived at his bus stop, a block away from the other's bus stop, their bus had not come yet. Imani was yelling to me that Akila had a phone. I walked down there to discover that Akila had a pink cell phone, a real one. This is when the bus pulled up. I gave it to Paris and asked if he would turn it in to the office. I'm pretty sure she must have brought it home in her backpack on Friday and I forgot to go through it. When will I learn?

We really need to change things around our home. We currently have nothing that locks, not a single closet, cabinet or even room. We're asking for trouble. Our cell phones are plugged in on the kitchen counter, purse and wallet accessible-things need to change. I need to get on-line and find a cabinet or something to order that locks.

I called the school nurse and asked her to stop the noon dosage of medication. We just started this about 3 weeks ago or so and it has helped her a bit to be more calm in the afternoons, but it has messed too much with her sleep. I also just left a message for her Pediatrician who I would like to talk to about trying a different medication, one that might not mess with her sleep so much, or should I say my sleep?

One last note- yes, it is about the hair. On Friday, Akila came home with a note from one of the educational assistants at the school who is a Black woman. It said that her daughters can braid hair and gave me her phone number. Ha. Emily babysat on Friday night and Michael and I went to a movie and dinner. When we got home, there was a note from a neighbor who called to say that she was available to braid hair this weekend, she is a Black woman who's daughter was playing with Akila on Friday night. One week of crazy hair, and the offers to help are pouring in. A friend thinks I should be offended. I am not. It makes me laugh. I am trying not to look at it as being judged, but as being offered help, which I desperately need. The problem is, I could pay these people to braid her hair, that is easy. Getting Akila to keep the braids in is the problem. I have always had different people do her hair in between when I do it. She is just in this new stage of having to mess with it all the time. One of the ladies was telling me that Akila was telling her it was because it itched or some other goofy things. I said no, it is because she does it when she is bored (on the bus, trying to fall asleep, riding in the car, etc.) and she has to constantly be doing something (I have given her music/headphones, a coloring book and crayons and other things for the bus ride-doesn't help). And she is obsessed with all things "fufu"; her hair style, clothing, etc.

Thursday, May 15, 2008

Imani, the Star of Hennepin

Just a quick post to show you the picture of Imani. Imani was chosen for a professional photo shoot where they put a window wrap on the doors of the school that are on Hennepin Avenue (my kids to go Interdistrict Downtown School on 10th and Hennepin). Here is a picture of my little star, she is the one on the far left with blue hands. I have very cute kids!


As most people know, we don't qualify for a PCA for Akila but are working on it. After school and evenings can be very stressful at our house, especially when Akila comes home in meltdown mode, which she honestly does 90% of the time. My friend, Angie, offered a few months ago to take Akila out every other week on Wednesday evenings and it has been a huge blessing. It definitely was last night. As you can see, they went to the Sculpture Garden and had a great time. Thanks Angie!

It is a blessing when Angie does this for a couple of reasons. The main thing is that the rest of us need a break from the constant conflict which naturally follows Akila around. The second thing, is that I have been having Raven, the 15 year old girl I mentor, come over on that evening. Raven is this beautiful girl with tons of brains and lots of potential, who has always struggled to get along with not a lot of support from family. I love this girl, she can do and be anything, but unfortunately it is all up to her. We talked about that last night. There is nobody who wakes her up and makes sure she gets to school; she has to take charge and do that if she doesn't want to go to summer school. There is nobody who makes her do her homework; she has to take charge and do it if she doesn't want to go to summer school. She has a hard time seeing her future, we are going to do some more goal planning and stuff like that. This girl is awesome. Here is a picture of her last night writing a paper on our computer. Raven, if you're reading this, I know that you can do it!!! Believe in yourself- I do!

Tuesday, May 13, 2008

Patience, Barb, Patience

Well, we have met with the Psychologist 3 times now. She isn't fixed yet, what's up with that? Ha. We are doing a behavior chart for one of her biggest issues; which is when she goes into a rage/tantrum when told no when she wants something, no matter how creative I am on the answer. She basically goes instantly to the name calling, kicking, throwing stage when told no. If any parent out there of an FASDer has figured out a way to deal with being called names constantly, please let me know.

I am really trying not to let that bother me, or I would be full of anger constantly. Literally, I am called a dumbhead, moran, idiot, stupidhead, or something else at least 10 times a day, and I'm talking about after school. Weekends are worse. Can't wait for summer. I digress. Back to the behavior chart. It is so hard to score her on the raging over the being told no thing; she basically should have a one (the lowest score, on a scale of 1-4) every day. If I push it because she calmed down more quickly than normal, I can give her a better score. But it is really hard to reward her for that when she stole someone's sneakers today, constantly sassed with huge attitude including giving me the "hand" multiple times, etc.

I understand choosing one behavior and working on that, but it is hard. I once again find myself needing reminding that she has permanent brain damage and these things are basically not going to go away. We can try to equip her with more skills in hope that she can handle herself a little more appropriately, but the biggest thing is for me to change my response, and expectation. I wonder if I will ever be able to live that? I know it is what I need to do, but for some reason, I keep on forgetting. I must be almost 40.

Good Lord, Hair Again!!

I can't believe I am even posting on this again. It seems that I have turned into my mother. She was always obsessed with my hair, even as an adult it was an on-going struggle. She would say those little nit-picky comments regarding my hair being stringy or something like that. It is well known within my family that my mom and I always had a thing about my hair going on. How have I turned into that?

I mentioned 2 posts ago, the pressure there is in a transracial adoption for a white mom to style and care for a Black girl's hair. I have literally been approached in stores, at church, school and other places by Black women (very good intentioned women) asking if I needed help with their hair. This is usually when we are in an "inbetween phase" of combing it out and haven't gotten the new style in yet. I have learned a lot and can do several styles. My problem is, Akila won't leave them in!!!!!!!!!!!!!! Can you feel my frustration???

On this past Sunday, two days ago, I shampooed Akila's hair, hot pressed it so it was straightened (most styles whether braids or twists, stay in longer and look more fresh if you press it first), and then sectioned and twisted it. It looked really nice and she loved it. It would last for sure one week, and I could even get two weeks out of it if I needed to. Well, 24 hours later, last night (Monday night), while in bed, Akila took it all out. I woke her up this morning to find out that her hair was standing up all over. I walked in her room to wake her up, saw the new hair doo, walked out of the room, and tried to "center" myself.

I went in and woke her up, calmly told her that her hair was going to have to stay like that for the day. She knew not to say too much to me, at least right away. About 5 minutes later she was raging for me to use the hot press on it. Her hair is not very long, and is not all the same length due to hair ripping out when she is messing with it, so it doesn't look very good just down, even if pressed straight. I told her we did not have time and she made the choice to take it down. She didn't like this. Below, you can see how it looked. After less than an hour, the entire head of her hari would look like it does on her right side.

We were going to St. Paul to an appointment with the Psychologist this morning so we put some barrettes, grease and a comb in a bag and she did some twists on her own on the way there. It looked OK, the very front section. I just have to get over the judgement thing. Our appt was funny with the Psychologist, who is a Black man. I had to tell him that we were having a slightly rough morning due to the hair thing. I told him, "I know that it is a petty thing, but it is difficult for me when I spend hours on a hair style and she takes it out". He smiled, said he understood as he has worked with other transracial adopted families and knows that the hair is a big thing. He then asked Akila if she likes the styles I do or not. That cracked me up. He doesn't know this of course, but it doesn't matter who does her hair or the style, she messes with it. I made sure he knew that. He asked her how she would like her hair, and her answer, of course, was she wants red and black weave put in. I had to contain my laughter. Thankfully, he explained what I have been telling her forever; that is a more mature hair style that you have to be older for.

So anyway, I know that my mom is probably up in heaven laughing her head off at my struggles with Akila and her hair. I did after all, cut off my ponytails at the binder when I was about 4 or 5 years old. I don't know why she got so mad, I hid the hair in my toy box so she wouldn't find out.

Monday, May 12, 2008

Gifts from the South

Yesterday, Ms. Kathy( our next neighbor/adopted Grandma) returned from a week long trip down south. She visited Georgia and the Carolina's and brought back adorable hats from the civil war era for my kids. Soldier hats for the boys and white hats for the girls- I don't know what they're called. They are the type I picture Betsy Ross wearing as she sewed the flag. They are cute.

My girls immediately ran in the house and put on skirts and used towels as shawls and started role playing. They were pretending to be Addie, an American Girl doll that we have and also have the book of. Addie and her family were slaves. It was very interesting to watch them play for practically hours. I was standing with some neighbors watching them and at one point, Zeke (who was pretending to be Sam, Addie's brother), was standing up against a tree and the girls were pretending to whip him on the back. This happens in the book when Sam tries to escape. I can't tell you how odd this was to watch. I couldn't decide if this was OK for them to be role playing, or not. They were after all, acting out a part of a historical book, which they know was a tragic event. It was very weird. We talked about it later and ended up having a good discussion.

Two Halloweens ago, I had been given a box of old costumes from a neighbor. It had some of the old fashioned clothes in it, that looked like they were used on Little House on the Prairie. When Akila was going to a friends for an overnight and they were going to go to a Halloween event somewhere in the community, we were trying to find a costume out of the box. Akila picked the prairie hat and long skirt outfit. It looked cute on her, until I realized that she looked like a slave girl. Probably not the most appropriate costume. I had her change, she became an M & M.

Akila is very intrigued by slavery and in particular, the cruel treatment that the slaves received. She likes to read over and over the parts in a story where there was a whipping or something like that. Similarly, she has always been incredibly obsessed with the Crucifixion of Jesus. In all of our bible stories and books, she always skips ahead to the pictures of Jesus on the cross and wants to read that story. She is a very sensitive child, in such a unique way. When I pray with her at night, I use to sometimes say something like, "Jesus, we want to thank you for dying on the cross to save us from our sins," or would refer to his sacrifice on the cross in some other way. It freaks her out. She crys after the prayer and asks me not to mention the cross as she can't sleep then.

Right around Easter time, a local church did a live reenactment of the Crucifixion, and there was a somewhat graphic picture of it in the paper. The paper was in our bedroom and she completely melted down and would not enter our bedroom and was in a crying rage. I couldn't figure out why, she kept pointing at the newspaper. I finally saw the picture. I had to remove the paper and it took a long time for her to settle down. She wanted it disposed of and I told her I would take care of it. I put it in the recycling bag in the dining room. Sure enough, some day the next week, it was taken out to be used under an art project or something, and she went into hysterics again.

When one of the other kids is hurt or crying, she can't stand it- that is unless she was the cause of their pain or tears. Then she could care less. But if they get hurt on their bike, or are crying because we won't give them something, she turns into the mother hen. She can't stand it when they cry (again, if she was not the cause of their tears, which she is the majority of the time). I do really appreciate this gift of care-giving that the Lord has given her. It is why she is so good with little kids.

Friday, May 9, 2008

Hair, again

Many of you know and may remember previous posts regarding my struggles with Akila and her hair. She has always had hair that is very course and breaks easily. I admit totally that I am not the best at keeping it moisturized as it is a power struggle I like to avoid. She hates to have grease or oil put in her hair, even when I explain that it will help her hair to grow.

When her hair is in any type of style, she always has to mess with it, and for this reason, she loses even more hair. If it is in single braids with beads on it, she is pulling on the braids, trying to get it to hang in her eyes (isn't long enough for that, but that is the style, hair in the face). She will sit on the bus and undo an entire hair doo, which took me a couple of hours to put in. It drives me crazy.

On Wednesday night, Michael was working late and I had to load up all the kids to go to Imani's piano lesson, which is less than 5 minutes from our house. I brought Akila, Hezekiah and Zeke to the park nearby during the 30 minute lesson. During the 5 minutes it took to drive from the park on 44th St, to the piano lesson on 39th St, to our house on 26th St, Akila and I had a huge fight about her hair, which I had just done on Sunday evening. She wanted to undo the hair style and put a new one in. Upon the completion of our 5 minute drive, she had taken out all the beads and was starting to take out the rubber bands at the base of her head.

It was after 7 pm, which is when we start the bedtime routine. I had more than once calmly explained to her how there was not time to do her hair this evening, and that we don't do that on school nights. She kept on telling me that she would do her hair, I didn't need to worry about it. Well there is no way in the world that would work. She wanted to put it in a pony tail, it is not even close to long enough for that, which I had repeatedly explained. She would put it in two pony's then; not long enough for that. I tried to not say too many times that it isn't long enough for any of that because she is always messing with it, won't put grease in it, etc. Those facts weren't helping with her state of mind.

At one point, I said fine, do whatever you'd like. If you want to go to school tomorrow looking really silly, that is fine. I was putting Imani in the shower as she was filthy, and thinking about how all the black women who work at the school would be judging me if she went to school with a really goofy hair doo. I decided I needed to stick to my guns on the hair, not to mention that I think Akila would sit in bed for hours messing with her hair. I then told her to leave her hair alone and do her dolls hair. Didn't work. She went nuts, or should I say kept on going nuts.

Eventually, we compromised and added some bobbles on to her hair style. Even that was looking funny as we had to use 3 different types of bobbles. It was a very festive looking hair doo, I should have taken a picture. It probably took 10-15 minutes. While I was putting the bobbles in, Michael got home to what seemed like a calm household. He missed the previous 30 minutes of raging. I am so temped to shave her head and give her a beautiful short afro. Imani has dred locks now and I am loving it. Akila doesn't want them. May be time for a change.

Sunday, May 4, 2008

Fun with Math

One thing I have read a lot about kids with FASD, is that they may have a concept down one day, and the next day totally lose the concept. You have to keep teaching them the same things over and over again, try to be patient and hope that one day it might stick. This is especially true in the area of math which almost all FASD kids struggle with completely.

Today Akila and I were doing her homework and we got to the math pages, which I hate. To be honest, I am a math hater by nature, probably because I stink at it. And I hate even more doing it with Akila. Lots of honesty here. Some of the sheets were adding up double digit numbers, not even ones that you have to do carry overs with. Pretty basic, she usually is pretty good at these, especially using a number chart. For whatever reason, she wanted no part of the number chart. OK. But for some reason, she could not do simple math facts, in her head or on her fingers. I'm talking about 1 plus 3, which she normally could at least do on her fingers. It was weird.

Then, she would ask me what 2 plus 4 is or something like that. I would say 4 plus 2 is 6 and she would wig out completely angry with me, because I said the 4 first, not the 2, like it was on the problem. I explained that in addition, it doesn't matter, but she would have nothing to do with it. I had to try to be more careful, so as to not upset her. I feel that is what I spend so much time doing. Thinking ahead as to how not to trigger something for her to fly into a goofy rage. It is very emotionally tiring.

She may be playing nicely in the family room and I am picking up and want to bring some stuff down there to put away. But if I go into the room, it may put her off track so I make a pile of stuff to go down there. Which is usually sitting there a week later. I have many piles in my house honestly because I have to be so thoughtful of where Akila is and what she is doing. I basically can't go upstairs after bedtime (until she is sleeping) because if she hears me on the steps, she is calling and has some goofy issue. Usually it is that she is bored and can't sleep.

A Great Sleep Over

I dread sleep overs. Let me clarify, I love sleep overs at other people's houses, I hate them at my house. And for one reason only; Akila's behavior. We have not had one for awhile as I dread them so much. If Akila is the one with a friend over, her siblings are usually not allowed to look at her friend without a huge fight. Akila's friend Emma slept over on Friday night and it went really well, I am so relieved.

Akila was great. Emma came home on the bus and the girls went up to Akila's room to play. Akila actually let Imani in there to play with them, practically the entire night, I was shocked. There was once or twice when she appropriately told Imani that she wanted some alone time with Emma now, which was very reasonable. Imani did not handle it well, but that was fine. Akila did draw the line when it came to sleeping in the family room, Imani was not allowed in there. Bed time was a bit of a struggle and Akila was getting pretty sassy. I always wonder what kids think when they see her like that. Calling her mom an idiot and talking very poorly. They must have some stories to tell when they get home. Thankfully, Emma's mom really gets FASD. She had a brother with FASD so I really appreciate her and her understanding.

The true test will be when Imani has a friend over for a sleep over in the next few weeks. Those are usually more difficult. I have tried to have them each have a friend over on the same night, that was a disaster. I am just thankful this one went well.