Third family

Sometimes, it feels like FASD is everywhere. Probably, because it is.

I just got a call from a man who lives a block away. He and his wife and 3 kids, have been letting a young man stay at their house who has FASD. They have only realized in the last month or so that he has FASD. I know this young man, and I dearly love him. He has ARND, and is very mildly effected, however, we all know, there is really no mild when it comes to FASD (and it is all perspective anyway. I probably see him as mild as he is not a rager, which is what seems to put Akila in the extreme category).

This summer, I tried to bring up the young man's diagnosis to the man at a neighborhood party. I think the young man had only been staying there a few months and they were in a honeymoon phase. I got a call about a month ago from this father, and he was really frustrated. The young man had been stealing from their entire family and selling stuff to a pawn shop.

I talked to the father about the way that alcohol damages the brain. And the fact that these things would not stop happening. To his credit, he wants to support this young man. He wants to work with him, and not kick him out, as many families would do. He is committed to him. I told him about the Damaged Angels book that I think is so helpful for people to read when first learning about FASD. He stopped over within an hour and picked up one of my many copies. He asked if I would come and talk to his entire family (they are all teenagers or young adults) about FASD. I said sure. We have not yet set up a time.

Today, I received another call. Both the dad and the young man were on the phone. There was some major lying that had occurred, and they were both upset. I helped them talk it through a little bit. I am going over next week to talk about FASD some more and some ways of dealing with the behaviors.

I know how hard it is to deal with these behaviors as a parent. It would be really hard to deal with them as just a neighbor who is letting someone stay with them. I am so thankful that this young man has a second family who is willing to support him. I hope that if we need a second family for Akila someday, that one will be there. His first family is burnt out and dealing with a whole host of other issues right now. They still love him, but are not in a position to deal with him full time right now.

I wonder if I should be saying third family? This is a young man, like my daughter, who was adopted. His mom was his second family. This family is his third family. It does take a village. But it takes an incredibly patient village.

So much to say

We had a blizzard this past weekend, as most of you experienced also. It was crazy. It was a long weekend. On Monday, school in Minneapolis, where we live, was canceled. My kids go to a weird school district called West Metro Education Partnership (WMEP). It is 50% Minneapolis kids, and the rest are kids from 10 west metro school districts.

So, our school was not canceled, thankfully. But our kids are all bused by the districts that we lived in. That means we had no buses running. I was kind of thinking this would be the case, and was planning on Monday morning to drive the kids to school. About 1/2 hour before the bus normally comes, the school posted that they were open on Facebook, but there would be no buses if you lived in a district that was closed. This is pretty much the first time this has happened.

Well, there were not many kids at school. One of my kids had 5 kids in class. When I dropped them off in the alley at school (they go to school in downtown Minneapolis), before i had even pulled out of the alley, a teacher called my cell phone to laugh hysterically at me. Here is what she said, pretty much: "Only YOU would get your kids to school when there are no buses. Only YOU!!! I suppose you were ready for a break from Akila?" I laughed hysterically (this teacher and I have a really good relationship, and we tell it like it is). I said that I was actually sick of all 4 of them, after being cooped up in the house since school on Friday. That made me laugh. My kids were 4 of very few kids from Mpls that made it to school that day. I am so proud.

On the way to school, Imani randomly was asking why they don't put all the bad kids in one class and all the good kids in one class. A good question. I was explaining the many reasons why they that wouldn't be a good idea. She said she would like that for just one day to see what it would be like. During the day, I was thinking that it might kind of seem like that, since it so happens that some of the kids from the city happen to be the ones with more challenging behavior. I don't know how to say this without sounding prejudice. It is not completely this way, of course there are easy and not so easy kids in the burbs and the city. But I wondered if it would feel like she was getting her wish.

When I picked them up from school, the first thing Hezekiah said to me was that Imani got her wish, and it was mostly good kids today. Very interesting. Tuesday, there were no buses, but a few more kids made it to school as they knew there were no buses. Today, the buses were running. And ours got stuck. They had to send another bus for the kids to board. What an adventure.

Last February, I wrote about a young woman who had lived behind us in the alley years ago. I had run into her at CVS and talked to hear about not having kids and being on birth control, among other things. She called me tonight. And yes, you guessed it. She is pregnant. Not married. 20 years old. No job. Not in school. Living on welfare and SSI. Keeping the baby. Not drinking (praying she is telling the truth). Starting school in January (she has told me this the last two times I have seen her- which have been at 6-9 month intervals).

My heart is sad tonight. I know this young woman enough, to know that parenting is going to be a challenge for her. She is going to stop by next week and I will be praying for wisdom and the words that are right. I have been really struggling lately with the abuse and co-dependence that I have been witnessing of the welfare system, and the unemployment system. I know that there are people out there that are or have used both systems properly, but I can honestly say, that I rarely see those situations. I know I am sounding cynical, but it is hard to live in North Minneapolis, and see amount of abuse.

I know I am going to stir up some heated comments here, but I guess that is OK once in awhile. Remember, I acknowledge that the system sometimes works. But I am convinced that it does not the majority of the time.

Funny

Akila had a Dr. appt today with the Psychiatrist. I had just told her I would pick her up early from school for a Dr. appt, she did not ask which Dr. She has been there twice only, in July and September.

As we were driving, she asked which Dr. we were going to. I told her, and she got really mad. I asked why. She said because I always tell her all the bad stuff Akila has been doing. I said, that I had mostly good things to report and we were mainly going because of her sleep disturbances (she has been waking up in the middle of the night 3-4 times a week again).

She was so happy. She made sure that I told the Dr. that she had been good.

On another note, I was very brilliant to make a Dr. appt for her today at the end of the school day, even if it was not intentional. Our school has an event tonight around the Hollidazzle parade. We can go to the school, eat dinner, and then we all walk the two blocks to Nicollet Mall and watch the parade. We have done it most years. I am not feeling it this year.

I prepped the other 3 kids, saying I wasn't sure if we would go, and make sure that none of you bring it up in front of Akila. Well, they always tease the kids with it on the afternoon announcements. Whenever there is an event like this, Akila comes home insisting we go. She doesn't even seem to know it is tonight. Good thing, as I have a headache.

I hate spirit week

This week is spirit week. I hate spirit week. In theory, I like it. For neuro-typical kids, I mostly like it. For Akila, I hate it. It causes nothing but stress.

Here is the breakdown of the days:

• Monday, Mismatch day
• Tuesday, Twin day
• Wednesday, 80's day
• Thursday, Celebrity day
• Friday, Grade color day

Sunday evening, Akila was convinced that she needed a Justin Bieber shirt for twin day. She and some girl (whom I had never heard of), were going to wear Justin shirts. We don't have a Justin shirt. We had several mini rages about this. It was not fun. I could hardly get her to bed. Told her that I might check the thrift store on Monday for a Justin Bieber shirt, as she didn't need it until Tuesday (twin day).

We were able to get some mismatched outfits ready for all the kids, that was easy enough. I texted Raquel, Akila's aide, on Monday morning and asked if she could help Akila coordinate with someone to be twins, and that we were having issues. Last year, I remember being on the phone with Raquel the night before twin day trying to have the two of them dress as twins. It did not go well.

By the end of Monday, Raquel (who is totally awesome, I mean seriously awesome), texted me what Akila was to wear to match two other girls, as triplets. It was all stuff we had, which Raquel said she would make sure of.

Today is 80's day. Akila has leg warmers on, a bandanna around her neck with a knot tied in it, my Chuck Taylor high tops and some other stuff. It was fairly easy. All four of them looked fine. It is hard to do 80's day with African American hair, as you can't really tease and feather it. Akila has braids in, so we tried to put it in a side pony.

Tomorrow I dread. Celebrity day. Akila thinks this means to wear a shirt with a celebrity. Maybe it does. We don't have any. I will have to think about it, but it won't be fun. She usually does not like any of my ideas.

The only good thing about spirit week, is that I have not had to do laundry and keep up on uniform shirts.

Communication challenges

We constantly have communication challenges with Akila. Often, she will ask a question, and we will answer it. Sounds simple enough. But not when she doesn't like the answer. And I don't mean when we say no (although that is never received well). I mean when we don't understand the question so we give the wrong answer.

I will ask for clarification, trying to dig into the story to find out what she is actually asking, and this inflames her. She gets really mad. I stay calm, and keep explaining that I am not sure what she is asking. It does not go well. Probably about half of the time, after prodding, I can figure out what she is asking and give the correct answer. At this point, she is usually upset and I still need to calm her down. The other half of the time, I get called every name in the book and she gets quite upset.

I can't think of a good example, I need to start writing notes down when a situation happens. I do have a small example, not an extreme one.

On Monday, her PCA was sick, had some stomach issues with vomiting. Yesterday, Akila was asking me about this. Her question was, "How did Jen get sick?". I said, she was vomiting. She repeated her question agitated. I said that all I knew was she was vomiting, and maybe she had a headache and fever, but I didn't know. She repeated her question again. I finally realized she was asking me what caused Jen to be vomiting.

I said I did not know, that maybe she had a stomach virus. She then, with a really condescending voice, said, "Mom, only computers get viruses!". Duh. I laughed, and explained how humans had viruses before computers, and that the same name was given to computers when they were infected with something.

The literal mind of an FASD kid can be quite frustrating when trying to communicate. And once in awhile, thankfully, it can be cute. I like those moments and am thankful for them.

Stuff

We, or should I say, I, am already addicted to our great PCA's. The 5 day Thanksgiving break with no PCA's was torture. We were all losing our mind by Sunday. It was a rough day. Akila was very edgy and quick to anger, and so was I!

Things are back to normal this week, and I am glad. The bummer, is two more weeks and then the two week Christmas break. Gearing up for that right now.

Great news! We got an alarm system installed today. We received a Family Consumer Grant or something like that from Hennepin County to install it. We won't be doing the monthly monitoring contract thing or anything like that. But it makes all kind of noise when any of our exterior 3 doors are opened up when the alarm is set. It is a nice relief. I will update you guys in a few weeks, but if anyone is looking for an alarm system, these guys were great and it was the best price I could find. It is actually the son of Kathy, my next door neighbor/mom.

Last Tuesday, before Thanksgiving, Akila came home from school wanting to invite a friend for a sleepover. Once in awhile, she gets a bug up her you know what to have a sleepover. She really has no friends to do this with. Sometimes, we will have the two neighbor kids sleep over, but that is it. And this does not satisfy her need for a sleepover. She wants to call a girl who went to our school through 3rd grade, Akila is now in 6th grade. She wants me to call her and invite her over. Well, I'm pretty sure this girl would not be interested, from the last time she was over, it was kind of weird.

So Akila perseverated on a sleepover. Trying to think of people. Then she called up her full time para from the school day and invited her for a sleepover. Then she wanted to call the PCA's and invite them. It was not fun. And it made me very sad for her. She just does not understand why she doesn't have any close friends. And she also does not understand, that friends do not want to come over here, to watch her call me a jack a@# and tell me to f@$#! off. It is not enjoyable for other children to watch her hit and kick us, and act totally out of control. I have tried to explain this to her. That she really can't have friends over for a sleepover until she can control herself better. This goes over really well.

And back to the regression I have been feeling with her. I do feel bad for her. It must be so hard to live in her world. To go to school with 11 year olds, who are typical 11 year olds. Starting to get into boys. Listening to music. Having cell phones (still too young I think). She wants all this stuff. But she also wants a children's refrigerator, stove and kitchen set. Like we use to have when the kids were young and got rid of years ago. She wants that, a cell phone, some Barbies, an Ipod, a Baby Alive, some skinny jeans, a doll house. She is so conflicted. She wants to look typical, and do the cool things, and come home and play with barbie dolls.

Looking back

Last night, I was at my neighbor's house doing some cleaning for her (be quiet everyone, I know my house is a pit! And I am not going to come clean your house so don't ask. Of course, unless you pay me). I brought Akila with as she has a VCR (ours broke 3 years or more ago), and Akila use to always watch home videos of when she was a baby. She calls them "The Akila Show". Someday, I will get them transferred to DVD.

So I was in the kitchen cleaning (Kathy had her kitchen painted and a new drywall ceiling put in, so there was lots of dust). Akila was in the next room watching the video. It was not annoying at all to listen to myself and Michael in our most annoying baby voices for two hours, going on and on about nothing! She was our first child, and we had that recorder on all the time. For 30 minutes waiting for Akila to say something, or do something cute. Way too long. But she loves watching it.

She calls it the Akila Show, even when Imani and Hezekiah are in it. Zeke isn't on the VHS tapes, we got a new one by the time he came along. We did not figure out Akila's FASD until she was 6, in first grade. When she was probably 2 years old, I always thought there was something off with her. Before 2, I didn't have too many concerns. She did have some very fussy times as a baby- we got her at 5 weeks old. But she hit all the developmental stages on target.

By 2, I knew there was something off. This is when our Pediatrician would always tell me she was fine and to relax. Then, we adopted Zeke when Akila was 3. He was my preemie who was very sick. We were in and out of Children's Hospital and that is when I fell in love with Children's Hospital and Clinics. We switched to a Pediatrician there and on her first visit with Akila, before she knew I had concerns, she caught some warning signs and sent us to a Neurologist. Akila was then diagnosed with Turner Syndrome- we thought that answered the questions regarding her odd behaviors. Little did we know.

Anyway, back to the video. Watching it, or should I say listening to it, and knowing what I know now about FASD, the signs were all there. This is what bums me out about the fact that we still do not adequately train adoptive parents as to what to look for. She was a camera hog, and wanting all the attention constantly. I know, some of you are saying that your typical child did the same thing. Stop. It is very different, and I don't know how to totally explain this. It is over the top camera hogging. It is a glazed over look on her face when she hits baby Imani and is told "no" and "to be gentle", and does it again. Obviously, situations like this, are common with typical kids. But there are no episodes with my other kids doing this stuff on the videos. And if they did, they were more likely to stop when directed to.

There is an intensity about her that you see in these videos, that is still there today. I did have something in my stomach telling me there was something wrong. But I did not know enough what to be looking for. Akila was diagnosed by age 6, which is one of the protective factors that Dr. Anne Streissguth has studied. I do wish we had figured it out earlier. It would have saved several years of banging our heads against the wall. We tried techniques that work for typical brains, but not for the FASD brain. We could have saved a lot of stress, a few pounds (maybe), and a lot of anger.

We really need to start training adoptive parents on some of the early signs of FASD. The truth is that you don't always know if there was alcohol exposure during pregnancy for a number of reasons. I have had an argument with an adoption proponent who thinks that too many people would back out of the adoption process if they were more informed about FASD. I say, that those are the people who should not be adopting then. And I truly believe that the majority would still be interested in adoption, they would just be entering it with their eyes open.

Regaining sanity

Well, that may be a little strong. I'm not sure if I am regaining sanity, but I do think I am coming out of a fog. Summer was long. Summer was hard. The very end of summer was really hard. The very beginning of the school year was really hard. Thankfully, some resources I had been working on for nearly a year finally came into place. And I am so grateful.

As I said in last post, the PCA's have started. I am doing the PCA Choice program where I hire, train and supervise the PCA's and an agency basically just pays them and makes sure we are in compliance. When recruiting, I sent a Facebook message out to all the twenty somethings I know plus a few mature people who are connected to a lot of twenty somethings. I received a pretty good response. I was so thankful.

One of my former Bloomington students, who's older brother was one of my students as well, responded right away. Her name is Behin and she is fantastic. She graduated from the U of MN last spring and just started her PhD program in Psychology this September. She said that she could do one day a week and her roommate could do another day. I was looking for two evenings and occasional weekend hours. Perfect.

I also got a response from Ness, who is Bernard's oldest daughter. Bernard is my friend who died in April of 2008. He was a single father of four awesome kids. Ness is a student in her 2nd year at Carlson School of Management at the U of MN. She is doing some various weekend hours and she is awesome!

Charlene is Behin's roommate. I did not know her, but trust Behin completely and Charlene has been awesome. She is great with Akila. Char also graduated from the U of MN last spring, and after working a few weeks with Akila, got a real job. I am happy for her, I know how good it feels to have a real full time job instead of 3 part-time jobs. She is still going to do Tuesday evenings. I bring Akila to dance class, drop her off, and Charlene picks her up from class, grabs dinner, and brings her home by bedtime. Nice.

When Charlene got the new job, she referred one of her and Behin's friends who lives in the same downtown condo building, who could do Monday nights. I was looking for help on some Mondays as well. So I met Jen and she is fantastic and is bringing Akila to dance on Monday nights. Jen is also a student of the U of MN (you'd think that I am only choosing U of MN students since that is where I went, but I'm not!) and will be finishing up after this semester.

The last several weeks have been lovely. They have been amazing. We have had at least two evenings a week which have been calm, I have been able to focus on the other 3 kids, help with homework, get things done, relax. I think I have been in recovery mode. It is almost like recovering from PTSD or something. It was getting that bad.

Now, it feels like when Akila is home and there is not a PCA, I have more energy and patience, she is not quite as snappy and sick of me, and we are not having nearly the same level of power struggles. This just might be a honeymoon phase, but I'll take it. I was telling Behin last night that once Akila is more use to them all, she will more than likely not behave as well for them. I hope I am wrong, but I'm pretty sure I am not. It is actually a good thing that there are 4 of them spreading out the hours, instead of the same person 3 days a week. Akila would tire of them and get much more edgy more quickly then.

I also got word on Wednesday that we have been approved for a grant to put in a security system in our house that will have an alarm go off if when Akila opens a door in the middle of the night. We had tried the cheap versions, but they fell off and wouldn't stay on our old house doors that were not level/plum/whatever you call it.

So, finally feeling like we are getting help. Feeling horrible for my friend Dorothy in Colorado who is finding it hard to get help. Trying to remind myself when I get frustrated with our system in MN, that it is really a much more supportive system than a ton of states have.

Update

I have not felt the words lately. Things have been happening, all is fairly calm, but I have been just kinda pooped out. But I thought I should do a few updates.

• Hezekiah turned 9 last week and Zeke turned 8 yesterday. My kiddos are now 8,9,10,11. Easier to say and remember. We went out on Sunday to Olive Garden to celebrate Zeke's birthday and I forgot to give Akila her meds. She was completely nuts in the van and the first half of the restaurant she was bouncing off the walls, until the meds she had when we got some water, kicked in. A good reminder to us that these meds do help greatly. Boys had great birthdays and we are blessed to be their mom and dad.
• The PCA thing has been fantastic!!!! They have been working for a couple of weeks and I can't tell you how much of a difference it has made in the climate of our house. I feel like it has even helped to improve my relationship with Akila as there is not constant conflict since she has a one on one person giving her complete attention. I feel like I have more patience and energy for her, and also for the other kids. There is usually one or even two evenings a week when they pick her up from school, bring her to dance and hang out with her and bring her home close to bedtime, after they grab a bite to eat. It has been such a blessing!!!!! We are only using up to 17 hours a week, but we have four different women on staff. And they are all awesome! One is a former student, two are friends of hers, and one is a daughter of an old friend of mine whom I miss dearly (my friend Bernard who passed away a few years ago).
• I have been volunteering a ton at Children's Hospital and Clinics. I was there 6 business days in a row. Three days on one of those Lean committees. That means 8-4:30 for three days working on setting up a process for inpatients to receive a discharge phone call within 24-48 hours of being discharged. Sounds easier than it is. Then I was at a meeting for the Star Studio (their inhouse TV channel) Advisory Council, Friday I spoke to medical residents about family centered care, and Monday I spoke at the new employee orientation. I am back tomorrow for my favorite one, the Medical Home committee. I have been greatly enjoying my time there (although it has been over kill the last week plus, but that is not normal. I am usually there every other week for one meeting/speaking event). Children's is a wonderful place to get excellent care for kids. They have been a real blessing to my family and it is nice to give back. Plus, it is my time to be around adults and use a deeper part of my brain that does not get accessed enough at home.
  
• Akila has been doing pretty well in school, and for that I am quite thankful. Her 3 year eval is complete and I am hoping that things won't go downhill as they usually start to do each year in November/December.
• The morning and 3:00 dosage of Risperidone seems to be working very well. She use to take one in the morning and at bedtime. This time change seems to have made a big difference in her evening mood.
• As I type, a new dishwasher is being installed. This means that we have replaced all the appliances in this old house and nothing should ever break again!!!! Please.
• We especially can't afford anymore appliances to break down, as our health insurance is going from $777/month to $1127/month. That is not a typo. It is going up $350/month. This means our van better keep running, as $350 is a car payment. It will also be covering less. I can't say much else about that without risking swearing and getting quite upset.
• My job as office manager of the dance studio is starting to get busy with costume ordering time, winter show prep, and quarterly tuition due. This is in part what has kept me from having the energy to blog. I get sick of the computer.
• I have been slowly reading a book called "The Normal One" about siblings of damaged kids. It is pretty interesting, not sure I agree with much of it, but it is very good at giving me perspective and making me think about my 3 musketeers and what we need to be doing for them to minimize negative effects of life with Akila, and try to focus on the positive effects.
• I got word today from Hennepin County that we are receiving a grant to install a security system so we will be awakened in the middle of the night if a door is opened. I am very relieved. Akila has been sleeping fairly well lately, but that will only last a certain amount of time.
• I have been thinking often lately about how it seems like Akila has regressed developmentally in the last year. She plays more with dolls than ever and she is drawn to preschool based cartoons. We went to a local hamburger joint this weekend. They had a little section of toys with things like a kitchenette, grocery cart. Akila sat and played with it all the entire meal. It was odd to watch a middle schooler. She then threw a rage the next day when Zeke chose the Olive Garden as she wanted to return to Tooties to play with the toys.

I think that is all for now. Hopefully I will get back in the flow with the blogging. :)

Pretending

Today, I have been pretending to be wealthy- kind of. I had to bring our 1999 mini van in a few weeks ago for some work. When working on it, they disabled something in the electrical system and our sun roof doesn't work anymore. It is the only thing that makes this 11 year old van feel nice. The problem they worked on with the engine, also didn't seem to be fixed.

I brought it back yesterday when it was smelling like the engine was burning, and I was given a rental van. A 2011 Honda Odyssey with 800 miles on it. The kids and I rode around all night in it, using the seat warmers and trying out the reverse camera thingie. I have been putting off returning it all day.

I went to the spa at the health club where we have a membership. Normally, I get my haircuts at the Aveda Institute, for very cheap. And I buy groupon discounts to get gift cards at Aveda for 1/2 off, that is how cheap I am. I kind of wanted a little bit of a new hair style, and I don't like to trust the students with that. So I used my gift card at the "spa". It was a good haircut, and I felt very important driving away with my fancy hair in the fancy car. And then I drove to Rainbow and used all my coupons for double coupon day. The dream had to end, right?

I will return the van this evening, and pick up our 1999 Honda Odyssey that has over 165,000 miles on it. The one that stinks, has vomit stains, the B word written on the seats, several soda stains from rages, broken knobs, broken dials, broken doors. And we will try to get as many miles out of this van as we can. After all, our car payment budget will be going to health insurance starting in January. Our health insurance is going up from $777/month, to $1127/month, and they will only cover 75% after we meet our HIGH deductible, instead of 80%m and Rx's are way more. Kind of thinking Health Care Reform is not helping our family. Ouch.

Alcohol worse than crack

I remember when I was first learning about Fetal Alcohol Spectrum Disorders (FASD) and how damaging alcohol is on a fetus. It was when Akila was in 1st grade. It was an eye opening year as I did a lot of research and went to several conferences.

I remember being really shocked that alcohol is more damaging to a fetus than almost all street drugs. This is something that people are still in shock about when I talk about FASD, I often think that some people don't believe me. I invite them to live with us for a week.

Anyway, check out this article, in which

Drug Experts Say Alcohol Worse Than Crack or Heroin.

This is not in regards to a fetus, but in regards to the person drinking the alcohol. It is even worse than crystal meth. I have been wondering if meth is possibly more damaging on a fetus than alcohol, but I haven't read anything on that yet. Does anybody out there know? All my FASD experts!!!

Let the help begin!

I just got the call that our PCA's can finally start-praise the Lord!!!!! One is starting tomorrow! I cannot tell you how excited I am!~

A good deal

I love a good deal. I have told many of you how I have gotten into using coupons through the excellent advise in the website Pocket Your Dollars. I have also shared my thrift store purchases with you all. I have to share again.

Fridays is VIP day (25% off) at a local thrift store, and I of course am a VIP. :) I was on a hunt for winter jackets and other winter things. I got two really nice Columbia jackets, a Limited Too jacket, an Old Navy jacket, 4 pairs of snow pants, two pairs of boots, 4 pair of girls pants, a pair of mittens, one hat, a basketball, and two boys Gap sweaters all for $94 dollars. Here are a few pictures:

DD case management

I met today with the screening and eligibility social workers from Hennepin County. We qualified already, but they needed more info. It was a great meeting with two really good workers. I wish one of them would be our long term case worker, but it won't work out like that.

They are going to try to get us on the DD Waiver which I don't totally grasp yet, but I have been told that this is a great thing. They thought that Akila was severe enough that it shouldn't take too long. There are only so many waivers available for each county and a great demand. I always thought it was a wait list, but they do prioritize and evidently, they thought Akila should be at the top of the list. This is good, I guess!

We also qualify for 90 days of respite a year- wow. So, if we can feel comfortable enough with a family that we don't know, that would be a good resource. I'll have to see how that system works, I am a little leery.

We are also going to apply for a Family Support Grant to pay for a security system, which would help me to sleep more soundly. They thought this would be a no brainer. We will see.

The meeting went very well and I am feeling like I can see through the clouds. Tomorrow is the meeting with the PCA agency and our PCA's so we can get that started. It is amazing how much a little support can help.

Progress, kind of

At dance this week, dancers can wear costumes. Akila is a spider princess and wore her dress on Monday over her dance clothes. We were the first to arrive, and the next three dancers were not in costume. Akila took her costume off. This is progress, kind of.

It is a good sign that she is socially aware and felt awkward being the only one in costume. She is so clueless usually about these things. I was telling my dear sister-in-law, Tara, today, that if it were Imani in the same situation, I would have been bummed that she took the costume off. I am always trying to teach Imani to be her own person and not worry about what others think. I know, I am inconsistent.

I totally love going against the flow, I always have. I wore Chuck Taylor high tops to prom two years in a row. I have Imani comfortable with wearing socks that don't match. I love this kind of thing. But it is so different with Akila who is socially clueless. So, for her to feel awkward being the only one wearing a costume, was a good thing. A few months ago, she felt weird bringing her teddy bear into Sunday school. I was proud. This is progress, kind of.

Imani Gazette

Below is the newsletter Imani wrote yesterday, I won't be able to include the photos as they are on the other computer.

Today was a good day. This is a picture of my first day of school. Well we may look confident, but the only one confident there is my mom and sis akila.

Well let me tell you about her. She is nice (sometimes because she has a brain problem since she was born). I like her as a sister, but she can be annoying sometimes. If she's in a good mood, I mean who would play with her when she's mean, seriously, they would be generous and all but when she's mean? Come on they would be dumb (not including people who have a brain problem). Here's a picture of her. She took this silly picture, ok, it's dumb but hey it was the only picture I could find of her.

Well this i the end of the Imani Gazette. Bye bye.

Imani is the sweetest girl and such a good sister for Akila. She is forgiving and understanding. Sometimes she loses it with Akila but not as often as you would expect. She is mature enough to be able to look at a situation and know that Akila could not control her behavior and not get mad at her.

In this newsletter, she was trying to convey some points about Akila and that sometimes she likes to play with her, and sometimes not. On the rare occasion that Akila and Imani end up playing together one on one, Michael and I get very protective of their space and won't let the boys go near them to interrupt the play. It happens so infrequently that when it does, it is precious. We are always intentional about processing it with Imani afterwards and pointing out how enjoyable Akila can be when her brain is functioning well.

Part of the challenge is that Akila is a girly girl and Imani is not. Akila actually seems to play with dolls and Barbies now more than she did when she was little. Not many of her middle school peers are playing much with dolls. I have to talk her out of bring dolls with to evening school events to avoid some embarrassment for her. She finally does seem self conscious about bringing the teddy bear with to events at school.

Anyway, Imani is precious. I thank God every day for his discernment in choosing all 4 of our children. They are the perfect fit for each other and for Michael and I. They compliment each other so well and look out for each other. We are blessed.

Commercial shoot

This afternoon is the TV commercial shoot for Children's Hospital and Clinics. You might remember that last spring my kids got to go to a professional photo shoot for some mission posters for Children's. It was our first experience with such an event, and let's just say, that I wasn't prepared.

We didn't have the right kind of clothes, the clothes we had were too wrinkled and the marketing staff were having to iron my kids jeans. It seemed like we just walked in from a night on the streets. So, I'm trying to be a little better prepared this time.

I have been telling the kids all weekend that they all will more than likely not end up in the commercial. Trying to explain editing and how these things work, I think they kind of get it. I just found out yesterday that from the pictures from last spring, Imani and Hezekiah are the ones who made the cut and are on the mission posters. Hoping to see them today. They are both the most photogenic by far. Zeke is a doll, but he usually gets a fake corny smile and his pictures did not look very natural. And Akila doesn't like being told what to do, even by a photographer, so hers weren't too natural looking either. I'm expecting the same thing today. We'll see.

I am currently trying to wash and iron their clothes (I am going to have to dig for my iron, haven't used it in at least 8 years since we moved to this house). I was looking through all their drawers trying to find some decent jeans. I know that Imani has a pair that she got recently and I could not find them. Until I looked in her pillow case and found them and one of her bras. Poor girl. She is always having to hide things from Akila and then can never remember where she hid them.

That reminds me. Last night Imani made a newsletter called the Imani Gazette. She made one last year and it focused on our dog, Hibeam (who is now deceased). This one focuses on Akila. Actually, I'm going to make a new post and put her newsletter in it. I'll let you all know how the commercial shoot goes, wish us luck!

Better day

I was able to get better sleep last night and felt much better today. After a Dr. appt, Michael and I went out for breakfast and then stopped at Office Max. By the end of Office Max, I was feeling the pain. I hadn't taken a pain med yet as I was waiting until we got home from breakfast. We decided to stop at Costco quick to check out eye glasses and guess what I got to use?

You're right if you guessed that I used one of those motorized carts. It was a blast. I especially enjoyed going in reverse so it made the very loud beeping noise. Yes, I did get some funny looks as you usually see older people in these vehicles. But I am 42 people, don't forget. I had Micheal take a picture on my cell phone which I sent to a few friends, but I can't find a cord to get it uploaded on the computer so you're just going to have to try and picture a hottie like me tooling around Costco in one of those things.

Came home, got some medication, and had a great afternoon. It is amazing how much it really does help in recovery to not be in pain. This afternoon, my knee felt so much better and I was able to get it to bend further so I could walk on stairs better and do a few more things like that. It is important that I get it moving and bending more. I start physical therapy on Wednesday and I am not looking forward to that.

When I was a teenager and had my 3rd knee surgery in which they opened it up wide and put a staple in it, I had a cast on it for months and could not bend it when they took the cast off. I had to go to PT forever and it was horrific. I thought then and I still think, that the physical therapy was more painful than the actual surgery- and the surgery was painful!!!! I have vivid memories of laying on a table with curtains around me and this crazy woman bending my knee where it should not have been bent and me crying in agony. It was horrible.

I know it won't be that bad this time, but I still dread it. I also remember a horrible machine they had back then called the "Orthotron". I hated it. I hope they have put it in it's grave. That was back in the early 80's after all. My luck is that what I will be working with on Wednesday.

Akila had a very rough weekend, some really crazy behaviors and only hit my knee once and not too hard. Tonight she was great and I always appreciate great nights. Thank you Lord!

Post surgery update

I don't like being 42 so far. I was in my teens in high school when I had my first three knee surgeries. I was 21 when I had my fourth, and I was 35 when I had my fifth. My fifth knee surgery was arthroscopic, which my first one was also. The recovery for my last one, was pretty easy. Off crutches by bedtime, and moving around pretty good within a few days. I was expecting that this time. I was wrong. I am feeling old.

Before surgery, I was given the choice between general anesthesia and a spinal one. The benefits to the spinal one are recovery is faster, you don't feel as groggy and the nausea is much less. You can choose if you want to be awake during the surgery, or not. I chose the spinal and chose to be asleep. I woke up before the surgery was over and it was cool. I got to watch it on the TV. In my altered state, i thought I watched it all. I was told in recovery that I just watched the very end.

When I did wake up during surgery, I felt very alert, not groggy or anything. When I was in recovery, I felt the same. The very strange thing, is that you can't move your legs. I was numb from the waste down. In recovery, I was eventually able to wiggle my toes and it started to wear off. I could tell when it was wearing off as my lower back started to ache. I remember this from all of my previous surgeries. I have pretty consistent lower back pain already, and then after being on the flat and hard operating table, it always hurts.

As I was laying there in recovery feeling pretty good, I all of a sudden started to shiver. But I wasn't cold. Before I knew it, my whole body was shivering uncontrollably. My bed and IV were shaking, it was weird. I got a nurses attention who brought some meds and put in my IV. They did not help at all. She put some more in, it did not help.

I laid there and shivered for 30 minutes. During this, my entire body was tensed up and the worst area of the shivers was in my butt cheeks. My back was aching worse and my knee was starting to throb from the shivering. A new nurse came on and was checking to see if I could have more meds yet and I could. She put them in the IV and then a few seconds later, said maybe it would help if she flushed the IV. About a minute later, I was feeling good and the shivering stopped.

I kind of think that I got the majority of all 3 of the meds when she flushed it, because I wad feeling very good at that point. But those 30 minutes were horrible!!! I think I would choose it over throwing up and feeling yucky from general anesthesia, but it was yucky. They said a lot of women get those shivers after having a baby also.

We were home before the kids got home from school, and Friday evening went OK. I was fighting a headache that I had for 2 days before surgery. It was gone after surgery but I think the pain meds were hiding it. It came back in the evening but wasn't too bad. Had a weird night of sleep as I never sleep very well on Percocet, I feel like I am sleeping but can hear everything around me.

Saturday was a different story. I felt nauseous and had a headache. In the afternoon, I started throwing up and did all afternoon and evening. I'm pretty sure that I was having a reaction to the percocet, I don't think I have tolerated it well in the past. I had taken one at noon, and decided to take no more. I was miserable! Just before 9:00, I was still puking, uncontrollably.

As I was laying on the floor in the bathroom taking care of business, my hands started tingling and so did my face. Within a few minutes, my hands were numb and locked and would not move. It was freaky! I sat in the bathroom for awhile waiting for it to go away (I had had a similar incident in the morning and it had not lasted very long). Well this was not going away, and my face was getting more tingly.

I eventually started to freak out and I couldn't even open our bathroom door. I yelled for Michael and had him call an ambulance. He had just put the kids to bed and Ms. Kathy, our grandma/neighbor was out of town so we couldn't call her to come help. The firemen came first, and when they got here, my left hand was starting to get some feeling back. One of them was saying that this is how they react to Percocet. They stayed until the EMT's arrived. EMT's ruled out a stroke, and said I had the classic signs of hyperventilating. I have never done this before or had anxiety issues.

I think that I was having such a hard time breathing as I was wrenching over the toilet, that I must have gone into hyperventilation mode. With that peace of mind, we refused the ambulance. They all left, and I did something I know I'm not suppose to do. Or did I? I think I took one of Akila's anti-nausea meds, Zofran. Or did I? Would I do such a thing? I know you're not suppose to. :)

My tummy finally settled down. I took a bunch of ibuprofen which did not touch my knee pain!!! I mean it did not touch it. I hardly slept at all, but I was done puking and was able to keep down some gatorade and saltines. Quite the drama. I hate calling 911, but it was quite freaky when my hands would not move.

We were thankful and amazed that the kids did not even know what was going on. They slept through the entire thing, and they had not been in bed very long when all the excitement started. Akila would have been manic if she were awake. Zeke was scared all day as he listened to me wrenching in the bathroom. He would not come near me.

Bottom line. Being 42 stinks. The pain is worse and I can tell that it is going to take a while longer to recover. I think a big difference though is that when I was 35 and had it scoped, they mainly just cleaned up some cartilage fragments and stuff like that. This time, I had a large tear in my meniscus and they had to cut it out and do a bit more when they were inside there. Maybe that is the reason for more pain. I also think the shivering episode, has made it harder. My entire right side, from the butt cheek to my ankle, hurts. The muscles all are aching badly and the knee is throbbing.

Enough whining. Today is going to be better. Thanks for your prayers.

Update

I received a phone call from Children's Hospital yesterday. Evidently, they were so impressed with my children at the award ceremony, and how sweet Dr. Mackey was with them, that they would like them in a TV commercial. They must have missed Akila eating the table, shaking the table, and going under the table. Excellent!

Tomorrow is my knee surgery, so I have been trying to get things organized. Today is my birthday, so I had to have a birthday lunch with my girlfriend Juli, but spent most of the day trying to arrange hair appointments for the girls. I needed to find a new hair braider for Akila- as we lost our old one due to some of Akila's very poor behavioral issues. Imani has an appt to get her dreads tightened on Saturday, and dad is going to have to take her. He won't be too happy about that.

The TV commercial shoot is on Tuesday. I'm not sure how I will be feeling all weekend, so there is much to do today. I did get some great birthday gifts from the kids. Hezekiah got me some gorgeous flowers. Asked daddy all on his own if they could go and do that and planned it early in the week. Zeke made me a bookmark and an awesome card (I love how 2nd graders spell bithday, grate mom- it is adorable!), Akila got me a few items from the dollar store last night when she was out with Angie, and Imani made me a bracelet and a really cool card. My friend Betsy watched my kids after school and drove Hezekiah to piano (I was at the kids conferences), and her family got me some flowers and cupcakes also- thanks Betsy and family!

And I got some great birthday news! Akila has qualified for DD (dev. delayed) Case Management Services- wahhhoooooooo!!! I don't even know what all that will mean, but I know it is good. They are coming to meet with me in a week and a half for some more eligibility stuff.

So I had a great birthday, had great reports at conferences, and I am getting ready for bed so I can go tomorrow and have the tenth surgery of my life (sixth on same knee). Isn't that ridiculous? And I'm a fairly healthy person, or so I always thought. I must be wrong. Michael has never been in the hospital. I am really hoping this will be my last one, but that isn't very realistic. I have already been told I will need a knee replacement some day. Hopefully when I'm 80. A girl can hope.

Meds

Akila has Cyclical Vomiting Syndrome (CVS). She use to have bouts of vomiting about every 2-3 months, and once a year or so, she would get dehydrated and we would need to go to the ER for an IV and then we would leave. About two years ago, the Dr.'s started her on a medicine Periactin, which was to prevent the vomiting issue.

They think the CVS may be tied to migraines, which I know all about. She does always get a headache with them, and is sensitive to light. I think they are right. Since being on Periactin, she has not had a bout of vomiting, in over two years. We took her off of it in the end of July as the the same enzyme in the liver metabolizes this medication as well as another so we decided to give it a try.

Akila came home with a headache yesterday. I thought she was faking and didn't want to go to dance. Shortly though, I realized she was not faking. As soon as she started puking. I remembered though that we had also been given a medication, Zofran, to put under tongue and dissolve to help stop the vomiting. We used it, and it worked. Did you hear me? It worked!!!

She did not vomit anymore, although the headache did not go away. She laid around all night and watched TV, and was fine this morning. It was just so nice to actually see a medicine work. So often, you think a med might be helping with something, but you never really know. I know this worked. She always throws up all night when she is like this.

She was totally fine this morning, and attended the award ceremony with us and then school. I am so thankful!!! Praise the Lord for good medications that work!

Dr. Mackey

We had to get the kids up early this morning and be at an award ceremony at a country club for our Pediatrician, Dr. Paula Mackey. We left the house by 7:00 to be there by 7:30. That's early for us. Kids usually leave at 8 for the bus.

We nominated Dr. Mackey to receive the Family Centered Care award for Children's Hospitals and Clinics. We started with Dr. Mackey when Zeke was hospitalized as an infant at Children's with respiratory problems. She is amazing, and has given all four of my children exceptional care.

The ceremony was one hour long, and we arrived before Dr. Mackey. The Dr. in charge of the General Pediatric Clinic at Childrens, Dr. Sheldon Berkowitz, attended also. He was there before us, but we beat Dr. Mackey. So, I took this opportunity to strategically place Akila between the two Dr.'s. Ha....Ha.....Ha.

There were a bunch of other awards given out to staff, and they saved the Family Centered Care award for the end- not the best planning if you ask me. The kids did really well though, even Akila. Although she was not behaving like the other 3. She had a little bit of extra energy, nothing over the top, but funny. She of course thought it was very funny to be shaking the table, which was full of water glasses, juice glasses, coffee cups, etc. It was a quiet kind of noise, if you know what I mean.

I just mostly ignored it as the more you tell her to stop the more she does it. Then, she put her mouth on the edge of the table (which had a table cloth on it), and started biting it. When she stopped, she was looking for a reaction and Dr. B gave her one. So she did it again. Three different times she got under the table and crawled around. I of course, being the excellent strict mom that I am, ignored it all.

It is so funny. A few years ago, it is behavior I would have never thought I would put up with. I would have looked at our table as an outsider and judged me, the mom allowing her child to act like that. Now I know better. God has showed me differently. God gave me a taste of some really sour humble pie.

Thankfully, both Dr.'s were not phased or annoyed with Akila. Dr. Mackey was great at distracting her from time to time and it went well. When it was time for the award, to my surprise, they had our whole family go up with the two Dr.'s as they read a paragraph about how great Dr. Mackey is. Thankfully, Akila ended up standing next to her which again, worked out great. In the paragraph, Akila's medical needs were mentioned (it was taken from the words I wrote), and you would think that Akila was getting the award. I mean, Akila seemed to think she was getting the award. She beamed with delight when her name was mentioned, it was cute.

I don't mention names often in my blog (other than my own families), but I mention Dr. Mackey's as she is an exceptional pediatrician. If you are in need of a new one, or thinking of a change, I highly recommend her. She is thorough, caring, compassionate, resourceful and great with kids. And in the clinic, they have a Special Needs program in which they go above and beyond what they do for typical kids. The appointments are longer, we go through a Special Needs Coordinator to set up our appt's instead of the front desk, and we get a thorough care plan that can be used for school and recreational programs.

Canoeing

We went canoeing yesterday. Very risky, I know. I had bought a Groupon last spring to rent boats at Lake Calhoun and we had not used it yet. There were many times I wanted to this summer, but I could not do it without Michael.

What a gorgeous weekend to do it! A few weeks ago, I was thinking that we might not be able to use the Groupon so I was even more appreciative of this weather. We ate at Tin Fish which is a little walk up cafe on Lake Calhoun also, it has amazing food.

Michael and the boys went in one canoe, and the girls and I in another. It went really well, all the kids picked up the paddling very well and nobody used the oars as weapons, which was a fear of course. The biggest challenge was Akila's mouth. Nothing new here.

She could not handle it if there was a tiny wiggle in our canoe as she thought we were going to tip. And every time there was any kind of wiggle, she let lose with some lovely expletives- for all of Lake Calhoun to hear. You know how when you're on a boat on a lake, it seems like everyone can hear you in other boats and on the shore? Well I'm pretty sure they could. We were getting some interesting looks as Akila called Imani and I bas.terds, the N-word, A-holes, and some other lovely names.

We stopped a few times and I tried to explain to her that it was OK for the canoe to wiggle a little, we all 3 took turns wiggling our bodies to make the boat wiggle a little. I told her that unless one of us stood up and tried to walk, it was very unlikely that we would tip. This helped a tiny bit, but not enough.

Then there was the issue of steering. I was in the back and doing the steering. But if we were heading towards something, that was super far away still, she would freak out that we were going to hit it. I think her spacial perception issues due to her Turner Syndrome were coming into play a little. I tried to just calmly ignore her and make the turn way sooner than necessary.

Imani did a great job of ignoring her and she was the one who was mostly being yelled at. The great ironic thing, is that she wanted to get in and swim at the beach, yet she was deathly afraid of tipping. She is a great swimmer and had on a life jacket, but did not want to get wet. Then, at the beach, she was having a hissy fit over wanting to swim and get her clothes wet. You can't win with her sometimes.

It was my birthday "Sunday" so I chose the restaurant and the event and it was totally awesome. A really great day and I am glad we did it. Makes me itchy to go canoe the St. Croix River next summer which Michael and I use to do before kids. I am not sure if I could have patience to handle the "mouth" all day though, it may have to be something we do on a respite weekend.

Missing money

I have been really good at taking my wallet out of my purse and locking it and the van keys up in our safe. Or so I thought.

On Sunday, I realized I had some money missing out of my wallet. I wasn't sure if it was two or three twenty dollar bills, but I knew it was for sure two. I found Akila, and told her that I need help finding some money I had lost. She got mad and said she didn't take it. I said I knew that, but I needed her help finding it as she is the "observant one". We always tell her this, and it is actually true.

She protested a little. I then told her that I would not be able to do her hair until I found my money as I was so upset. She went upstairs to her room to look, and then went outside. She promptly came inside to tell me that she had found it outside. It was $40. I thanked her.

Last night, Hezekiah told me that she had $60 on Sunday but she thought she had $3. He had her show it to him, and he counted it for her and told her it was $60. Why he didn't come and tell me right away, I have no idea. The kids are usually pretty good at this. He must have gotten distracted.

After school today, someone picked her up from school for me and was going to bring her to dance but they stopped home to pick something up and change quickly. I mentioned to this person that if she saw Akila with $20, to let me know. She said that Akila had already shown it to her and it was in her pants pocket.

When Akila came downstairs, I told her I had lost $20 in her room when I was cleaning and asked her to help me find it. She went upstairs, but did not find it. I checked her dance bag. Didn't find it. They left. I searched her room for her uniform pants and shirt. Could not find them. I looked in the bathroom, and in my room. Finally, I found her pants under our bed. Sure enough there were $20 in them.

We could talk about possession and ownership and stealing until we are blue in the face. It is not going to stop. I have also learned, that it is not the best teaching time to talk about it when she has been caught. So I have learned to be casual about it, and then I am more likely to recover the stolen goods. And now I must be even more careful about locking up my wallet ALWAYS!!!!

Scheduled # 6

I went to the Orthopedic Dr. for my knee finally. I have a big tear in my medial meniscus, and am scheduled for knee surgery #6 on October 15th.

I am actually relieved. He thought it might be a major surgery. I have had 2 major ones, one big one, and 2 little ones. This is a little one, meaning arthroscopic. I can do this. Last time, I was off crutches by bedtime, 6 years ago. Now that I am in my 40's, I realize it might be a little more rough, but just a little.

Akila had her first incident at school this year. She hit a kid on the bus ride home and was written up. Not good. This is the first year where she has had an incident before the end of November. It usually takes her longer to get comfie.

The school has been doing her 3 year re-evaluation for special ed and I go in on Thursday for the results and for her IEP meeting. It will be interesting. She pretty much has an all new team this year since she is in middle school. I don't know them yet and they don't know me. It usually takes quite awhile for me to "prove myself" as not a crazy and lazy mom (although I feel that I am, but you know what I mean!). Akila can come off as quite normal. I thankfully have her great Aide who gets Akila well. I am especially concerned that they are not going to understand the need for no homework. But I will stand strong in this area.

Have I mentioned that Akila has started pointe ballet? That is the ballet they do on their toes with those weird (and expensive!) shoes? I think she is doing OK. I have hired some dancers to help her in class (yey Lindsey!), and that helps a lot. I will have to get some pictures of her in the pointe shoes, she is pretty excited about it.

We are having challenges with controlling her food intake (and mine, but that's another story). She has typically had very little appetite during the day, and eats like a horse all night. I found out from her aide that she has been getting two lunches at school and eating it all. And she is still eating like a horse at home. This is a side effect of one of her meds. Interesting that the first 6 , months she didn't want to eat much for lunch, now she is. Ugh.

I emailed the food service lady and they are going to limit her to one meal at lunch time. I am going to try to get some high protein snacks for her to have to help with her hunger.

Annoying evening

One of the young ladies I am in the process of hiring came over yesterday to meet with me and meet Akila. She came at 3 and the bus gets home around 3:40. We talked about Akila. I told her I doubted Akila would rage for her, but when she was at the house when I and the kids were home, she might see her getting yucky towards us. I told her if she ever gets to witness this, to stay close, try to distract Akila, and just hang and follow my directions.

Little did we know that 10 minutes after Akila got home she would be raging. Imani stayed home sick yesterday, and was watching movies in my room. When Akila was giving the PCA a tour, the boys were watching a movie with Imani. It was Akeelah and the Bee, a movie we gave Akila years ago. Akila went nuts because it is "her special movie". She would say this about any movie that she thinks is hers. Never mind that she watches Imani's movies all the time. We stopped awhile ago giving movies to any one kid at Christmas time, they are family movies now.

So, I could have just taken the movie out, but I am really sick of her winning and screwing the other kids. So she went nuts. She punched me in the rib cage, and kicked, and swore. I got her into the hallway. The PCA did a nice job of trying to distract her, asking to see her room and stuff like that. All the while going on and on about her special movie. Then, all of a sudden, a light bulb goes off in her head. And she now wants fake fingernails.

She now rages for awhile about fake fingernails. When she finally realizes we are not going to go buy any, she wants me to go look for some of hers that might be laying around the house. I exit promptly, and they go upstairs to look at her room. Finally distracted. And thankfully, I did find some fingernails in her drawer. Then we had to go into her room and hopefully find some of the glue, and praise the Lord, we found some.

She was kind of on edge all evening, and we had to go to church at 6:40 for family pictures. So, I have everyone change into colors that coordinate- I got much push back and whining as they did not want to wear what I chose. Good times. We get there, and can't find what room they are doing the pictures in. We go to a large church that has 3 campuses, and we were at the main one. We looked everywhere, and the kids were losing patience.

We then ran into the Executive Pastor who runs everything. He had just arrived for a class, so he opened his laptop and started digging for info, and was making calls also. While he was doing this, Akila laid on the floor in front oh him, and said quite loudly with attitude "Jesus Christ!". What a proud moment.

We finally found out that we were at the wrong location, and we had missed our time slot. I could have shot myself. On the drive home, I could barely contain my laughter at Akila's outburst. What was very strange about it, was that she had never before, in all of her raging and yucky language, said the Lord's name in vain. It was not a proud moment, however it still makes me laugh. How horrible am I?

Cinderella moment

We had a cinderella moment on Friday. Our school has uniforms, which I love! But Friday is called Freestyle Friday if you have turned in your homework. Somehow they work it out so Akila almost always gets Freestyle Friday even though she doesn't do homework.

Imani, is somewhat tomboyish. She typically doesn't care what she is wearing, and it is never very flashy our unique. Jeans and a tshirt kind of a girl. Friday, she was feeling unique. She put on black leggings with a purple velvet skirt that was from a dance recital on top of it and a purple shirt. She looked cute. She even said before she left for the bus that everybody would be surprised because they have never seen her in a skirt.

They were starting out the door for the bus, three of them were around the corner and I was still helping Hezekiah find all of his stuff, when Imani came running back crying. She had a barrette in her hair, one she had found in the hall that had purple ribbons on it, and had put it in her dread locks.

Akila noticed the barrette, and went berserk as it is hers. She tried ripping it out of Imani's hair. It totally reminded me of the cinderella scene where the step sisters are ripping her dress apart after they see it is made of their discarded items. It was so sad, my heart broke for Imani who was so proud of the outfit she had put together.

We did not have that much time to deal with it and process it before the bus came, but after school she seemed totally fine about it and said it was no big deal. But I know that things like this can start to break you down after awhile. Imani is a precious and sweet child and I need to think of some more things to make sure that she knows this.

Stuff

The med change has greatly helped. Akila is now taking one of the risperidone in the morning, and one after school, instead of at bedtime. We started taking it last week when she got home from school, but that was challenging. She would be explosive when she got home and resistant to taking the med.

So the school is giving it to her at the end of the school day. Amazingly, it is not hard to swallow, and she doesn't hate it, and it doesn't hurt her throat, and so on and so on. I am hoping this will continue to help.

I feel like I have been working non-stop on paperwork the last two weeks. Each time I think I'm through, I get a new item in the mail from the county requesting more (between the TEFRA, PCA, and requesting a DD case worker, it's nuts!- and I haven't even started the SSI application process that I am thinking about doing). Had to dig out of the archives her SS card and birth certificate today. I need to get more organized.

WCCO TV was at our school today and Imani and Hezekiah were taped for some kind of thing that will play on some day. Is that vague enough for you? I was trying to understand what they did, and it was clear as mud. Imani was able to tell me that it was channel 4, and that they were by some TV guy with white hair and she couldn't remember his name. I said, "Don Shelby" and she said yes, that's the guy. She thought it would not be today though. I'll have to try to ask a teacher tomorrow, if I remember.

I'm meeting my blog buddy, Linda, tomorrow- can't wait!!!

Broken things

Our life is so full of broken things. Some days, it seems to be our spirit, but mostly, it is our stuff. I am actually in good spirits today, but Akila has been struggling on and off. I am thankful that the Lord has given me the patience today, and that Michael let me run a few errands alone.

Unfortunately, when I was running errands, Akila lost it. I don't know all that occurred (as Michael is now running errands), but I know that my Swifter Sweeper thingie was broken. Yesterday, she broke the cord for my laptop. At least I am praying that is what is broken, and not the plug in part of the laptop.

She was escalating yesterday, so I quickly scooped up both of our laptops which were in the living room. I just pulled the cords out of the laptop and left the cords. As I was leaving the room, Akila had my cord and was using it as a whip. She whipped it against a table a few times. Low and behold, it will not plug into my laptop any longer although it looks normal.

Michael is out trying to replace it right now. We have been fortunate, as she has not really destroyed a high priced item yet or anything that is really precious. We have holes in walls, an electrical outlet that she kicked in, a broken window, and tons of other items she has destroyed, but nothing that is really hard to lose- yet. I say yet again, as I know it is coming. I handle things better when I know in the back of my head they will come some day. And if those things don't happen, then I am very happy to have been wrong- but I don't think that has ever happened yet.

I actually am wrong. One of the most precious things in our life is broken. My sweet Akila's brain. And I need to constantly remind myself that it is not her fault.

Paving new ground

I am a trail blazer. I am the first parent to ask our band teacher to discourage their child from joining band. I am so proud of myself. Ha. Not something I ever imagined I would be doing as a parent.

I emailed the band teacher today, just to give her the heads up on our situation with Akila in case Akila is trying to "work her" on this joining band thing. I know Akila well. Of course, she told the teacher today she was joining band and going to play the trumpet. The teacher said "great!", not knowing the situation. She said she is going to think about it and maybe have Akila's aide have Akila out of the classroom doing something important when they come to do the instrument demo's.

Obviously, we are the ones responsible for Akila and her decisions, but it is very helpful to have the school staff backing us up. I was foreseeing a situation where we were telling Akila no, and she was telling the teacher we said yes, and it getting kind of silly. Once again, I need to say how much I appreciate our school and the great staff. Whenever I have some goofy request like this, it doesn't seem to phase them, even if it is a new request.

Try again

I think I mentioned that I called Hennepin County last week to request a DD Case Worker (Dev. Delayed) and was given the run around. My intention was to call again and get a different person and hope for better assistance.

I finally got around to making that call just now and what a difference. The lady was great, took the referral over the phone, said someone would be calling me to set up a meeting, and she is mailing me the packet full of paperwork. Since I finally am through the initial hurdle of the paperwork for TEFRA, I feel I can handle a new batch. Although my house is swimming in paperwork that is totally unorganized. Something on my to do list.

This lady was very helpful, and asked me what has been going on. She had the brilliance and compassion to sympathise with me on the challenging behaviors and to say we needed to get some help. Just what I needed. I wish she could be our case worker. Crossing my fingers for someone as helpful.

It is amazing how much just being helped like that can help. Last Wednesday, (my day of crying), was actually fueled by the call I made to the county with no help received. My call to them was a bit of a cry for help and I was not helped. I am feeling better about our options lately, and am thankful for all of your prayers and support.

Accents

I forgot to mention the fun we had driving home from dance tonight. I had packed snacks in her dance bag before she got home from school. Dance is from 4:30-6. I had a meal in the slow cooker as the boys had football starting at 6:00, Imani had piano at 7, Zeke finished football at 7:30 and went to piano at 7:30, Hezekiah finished football at 8, Michael was running around crazy.

So, I was trying to get home after dance to eat the meal in the slow cooker. We have made the decision that in the month of September, we can not eat out at all. No fast food. No restaurants. No coffee shops. No gas station food. Nothing like that. On the way to dance, Akila was hungry. I tried to get her to eat a snack before we left, with no success. I did not push it as I had put several snacks in her dance bag- only to learn that she had taken them out while changing into her dance clothes.

Not to worry. I am sometimes prepared for all situations. I had two different kinds of emergency snacks in the car (impressed?). She did not want either. After dance, on the way home, she wanted to go to McD's, immediately. I replied to her in a french accent. She laughed hysterically.

The entire 25 minute drive home, I tried every accent I could think of- and they were horrible. She kept on coming back to the double cheeseburger that she desperately wanted, but I was able to distract her each time. She really liked my Norwegian accent, it made her laugh really hard. I had to perform for the neighborhood kids when we got home even, that's how good I am.

Anyway, I wish things like this would always work. It is not the first time I have tried something like this. But it is the first time the accent thing worked. I will have to work hard not to over use it. Don't cha tink dat would be a bad ting? ( I don't know how to spell in Norwegian either).

Band

The band program is recruiting again at school. I had to delete the word stupid in front of band program. I love the band program. Imani is in it, the teacher is great. But every year, when they go to the classes, hand out the letter, we have an issue with Akila about joining band.

We usually just talk about how Akila is the dancer, and Imani, Hezekiah and Zeke are the band players (they all 3 take piano and Imani started the clarinet last year). Akila tried piano when she was younger. Her dyspraxia makes it very difficult, not to mention all the behavioral issues around practicing an instrument. Her neuro-psychologist even said after her testing that instruments would not be a good idea- which made me feel better as I felt lazy when we quit piano.

Anyway, tonight, she got out of bed after being tucked in, to go to her back pack and get the letter. She wants to join. I said dad and I would talk about it. Bedtime is not the time to say no. So, once again, we will have try to put the positive spin on it (which is truly a true spin), where we say that the Clark band consists of 3 musicians and a dancer. Every real band needs a gifted dancer.

If this doesn't work this year, I may have to try the cell phone trick. When she gets begging for a cell phone, I tell her that if she can give me one week of no raging, no name calling, no hitting/kicking, I will get her a cell phone as she will have proved to me that she is mature enough to handle one. Once again, I truly would get her one if she accomplished this. I may have to say the same thing with band. One week of no raging, and she can join band.

I know, I'm cruel. But it works.

Hallelujah

We had the PCA assessment today. We qualified for 21 hours a week. I don't know if that is good in the realm of things, but it sounds absolutely fantastic to me. I have had a skip in my step tonight. It will take me several weeks to get something set up, but we start accruing hours today. I can't tell you what an answer to prayers this is.

I had to pick Akila up from school at 12:30 for the meeting. This was very hard for me to do. Just seems wrong. Ha. She was in typical Akila form during the meeting. The nurse did not ask her any questions, or ask her to be in the room with us. Akila was in and out the entire hour. At one point, she walks into the dining room with a stack of credit cards. I had locked up my wallet in the safe so I had to go see if I left it open or what. She had been digging in some drawers in the kitchen and found some old ones that had never been activated. I had a little tussle to get them away. Perfect.

Then she requested some lemonade, this was after I had just made her some popcorn. We are out of lemonade. She got quite upset. Quite. She was starting to escalate, but did not go too horribly far. Just far enough. Then she kept on going outside and I was having to stand in the window to watch her. The nurse asked if she is always this demanding. I said she hasn't seen anything yet.

At one point, the nurse asked me if we have a DD (Developmentally Delayed- I think) Case Worker. I laughed. I called Hennepin County last week to request one and was given the run around. I have been planning on calling again and hoping to get a different person. This nurse told me it might be a good idea to have the school social worker refer us. Maybe a quicker in. Not sure.

My favorite part of the assessment, was when the nurse asked me if I was a single parent. I said no, I have a husband. I was starting to say that he works a lot of late hours, but Akila was in the next room yelling that I am divorced. What? News to me. Especially since we have never mentioned divorce, and we don't even really argue. Akila thought it was hilarious and came into the room with a big smile trying to convince her that I am divorced. It was kind of funny. I'm sure the nurse had no idea what to think. Maybe it helped my case, being a single mom and all.

Two decent days

Four days of horrific raging, Sunday-Wednesday. Thursday and Friday, she did not really rage, not horridly at least, not to the point of restraining. I am so relieved.

Yesterday after school, I could tell right away she was in a better place emotionally. Today, she was a bit on edge, but not bad. We did go to the Psychiatrist in the morning and have a new med plan we are going to try. I just hate the trial and error phase and the fact that we have to prove to the stupid insurance company that the lame meds don't work before we can get the ones we all know will work better, but are more expensive.

Our two neighbor kids came over tonight after school to play and Akila handled it well until about 7:00, which is pretty good. Their mom was over for awhile talking to me about her FAS daughter who is currently in residential treatment, when Akila started to lose it. I said it was time for them to go home, and Akila came down to talk to me. She was mad and starting to slowly escalate, but she was happy I was telling them it was time for them to leave so she did not escalate too far. Just far enough to call their mom an F-ing B. Lovely. At least she lives it and gets it.

I woke up this morning really early with the beginning of a migraine. I use to get one every one to two months and have only had one in the last two years since I saw a neurologist who put me on high doses of vitamin D and magnesium. I have been bad lately at taking my vitamins as I cut down in the summer due to sun exposure. Have to get back in the habit. I got up and took 4 Aleves (which he told me to do), used a Rx nasal spray for migraines, and drank a mountain dew (which he also told me to do). Headache was mostly gone by 9 am and totally gone by 11. Thanks be to God!!

The best news of the week, is that the county called me yesterday to set up the PCA assessment and it is scheduled for Monday- I figured we were over a month away from this appt. I know that it will still take quite awhile, but I am so hopeful.

Akila starts dance on Monday also. She will have dance twice a week, on Mondays and Tuesdays. She is going to try pointe ballet. This will be interesting. It has been a dream of hers forever, but it is such a disciplined form of dance that we are not sure how she will do. I have hired two teen dancers to assist her in class (which mostly means to make sure she is not being mean to other dancers). I really hope she is able to make it as she is a good dancer, and it is kind of her thing. It is one thing she is good at, that we can encourage her on and help to build her self esteem in.

Hard day

I have had a hard day, and Akila isn't even home from school. The emotions of the severity of her behavior has hit me. I have spent the day calling the county, emailing Dr.'s, friends, researching, etc. In between emails and calls, I cried. And I cried.

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I didn't get this post finished before the bus arrived. She raged again all night, well, she settled down at dinner time, after about two hours of raging, over wanting fake fingernails (which she currently is wearing, but wants different ones). I am being told different things by different people, and need some time to think about what strategy we need to take with her behavior.

Tomorrow (or today I should say), I will be at a FASD workshop at the U of M all day. And then on Friday, Akila and I will go to see her new Psychiatrist for a med adjustment, which is obviously needed. I am off to bed now, praying sleep will come quickly.

New level

I can't even think of what to title this post. I should probably title it rambling, or whining, cuz I feel a rant coming on.

Today was the day I have been counting down to for 90 days. It was lovely, until 3:30, or should I say 3:40. The first ten minutes after the kids got home, Akila was quiet as all were telling me of their first day of school. Sometimes it takes her a little before she is ready to talk so I was waiting. Then she started in on wanting to get her hair done. Oh boy, here we go.

I said no in all the ways possible without saying no. Didn't work. I also said no, about a thousand times. Escalated into a rage. She got violent, destructive. I ended up restraining her, until about 4:30. Then she kind of settled down, but not really. Angie was coming to get her tonight and I was so thankful for that as I could tell she was tightly wound.

Angie arrived, said she could choose to go to a movie, or bowling. Akila chose the movie. She wanted me to give her money so she could buy lip gloss. I said no, they weren't going to a store, and she did not need lip gloss (she has at least 20 lip glosses). I even said I would give her some money for candy at the movie theatre. No go. She escalated, and escalated. And poor Angie got to witness it all.

She started to hit, I had to restrain, it was not pretty. We went out to the car at one point, I was hoping this would distract Akila and she would just go. Instead she picked a mongo stick, more like a tree branch, and was threatening to hit me with it. I took it from her. She was still being violent. I tried to go in the house thinking she might just go with Angie. No go. We all ended up back in the house. I finally gave her the countdown to if she didn't stop and just go with Angie, that Angie would have to leave. She then whipped me in the face with a jump rope (not super hard, but it stung a little).

So I had to say thank you Angie, but it isn't going to work (I really am sorry Angie that we wasted your time!). Angie got ready to leave, then Akila begged to go. She followed Angie to her car, I had to physically drag her away from Angie's car. Angie pulled away. At this point, I would not been surprised to see Akila's head spin like the scene from the Exorcist. She had already been being the most angry and violent that I had seen in a long time. She took it to the next level. She went nuts. I mean nuts.

We went back in the house. She ended up needing to be restrained again as she was being unsafe. All the while, Imani and Zeke are playing at the neighbors, but Hezekiah has been in and out of the craze. I was sitting on Akila in the living room, restraining her, she was out of sorts, drooling, and carrying on about lip gloss, and I lost it temporarily, emotionally. A few tears were rolling down my face as it hit me that we were in a new phase, a new level. Several times a year, we are at a new level of stress/issues/problems with Akila's FASD behaviors. This was a new one. She had raged violently in front of someone else.

In the past, she has usually been more restrained around people, other than our immediate family. She might call a name, or curse very quietly, and even kick me in a restrained fashion, but never rage. And she really let loose. The same goes for in a store. Normally, she would in a restrained way, kick my shin, or curse quietly. Yesterday, she threw a major rage in a crowded thrift store. We left with nothing. Outside of the store, in front of tons of people, she bite me, kicked me, cold cocked me in the face, and was just seething with venom. We are at a new level.

As I was sitting on Akila tonight, with tears rolling down my face, Hezekiah walked in the door. He immediately started crying when he saw me crying. I could do nothing to comfort him. I just told him to go back outside and to Ms. Kathy's house until I called later. Kathy then called, and drove my boys both to football practice at 6:00. Shortly after 6:00, Akila kind of settled down, but was still full of anger. She stared at me with an evil look, and was completely rude and her mouth was out of control. I just ignored it.

At 6:45, she went to the neighbors to play, and for that I am thankful. Michael got home, I went to football practice, and got home at 8:15 and she gave me a big hug cuz she was so glad I was home. Oblivious to anything that occurred for practically the whole night. 3 hours of raging. 3 hours.

I just emailed her Psychiatrist. We will see if we try anything new on the medication front. I am exhausted. My knee is killing me, and I have that radiating pain out of my lower back that you get when you are really stressed. Thank goodness there is school tomorrow so I can rest up. I am not sure if this had anything to do with the transition back to school. Usually transitions like this don't phase Akila too much like it can with other kids. But maybe it is now.

I called on Friday about how to qualify for a PCA. I had to do a parent referral. Now I wait 2-3 weeks for an assessor to call me to schedule an appt, which will probably be 2-3 weeks out. Let's pray that by the new year we have some support.

4 days

4 days.

Exhausted

I am wiped out. Last week of summer, I'm not even home. And I'm exhausted. I am doing another LEAN workshop at Children's Hospital this week, M-F from 8-4:30. It is mentally exhausting. We are working to improve the process of transferring a patient from the Emergency Department to a hospital room. Good stuff, but exhausting. Did I say I was exhausted yet?

I don't know how some of you work full time and then parent challenging children. I come home, wiped out, and restrain for 1 1/2 hours while Akila rages. Not that it would be easier being home all day dealing with the issues, but once their back at school, at least I will have the day to re-energize. I need to start seriously working out so she doesn't get stronger than me.

Anyway, just wanted to let you all know (all 10 of you), that I'm here. Doing OK. Had a breakdown last night. Finally got word this week that we are approved for MA/TEFRA, and got a letter in the mail from Hennepin County. It was clear as mud. They are all horribly difficult to translate. It had $903 a month listed under each month back to February when Akila's MA is retroactive to. I thought it meant that was our monthly fee. Several years ago when I first looked into TEFRA, when I figured out the calculator thingie, it was around $900/month. We obviously did not apply. Then when I did it last winter, I realized it was only $112/month or so. I had Michael re-figure it and he came up with that. We were quite excited and started the process.

So this letter showing my original thought, FREAKED me out. I even cried briefly late last night. I have realized how much I am counting on getting some PCA help. I hope to goodness we qualify. I think I might have a break down otherwise.

I called Hennepin County this morning, learned that the $903/month is the max monthly income that Akila can make. The worker said she probably isn't making that at her age of 11. I said she would probably never make that much a month in her entire life. I also asked about getting reimbursed for some past bills since it is retro to Feb. 1. He said to have the providers bill the state. I said we had already paid. He said to have them still bill the state, and then the provider would owe us money. Brilliant system. Let me call 3 different clinics, 2 different pharmacies, have them re-submit everything, get paid, then cut me checks. Instead of me giving the state all the bills we have paid and proof of payment. Brilliant.

I also asked him if the county had any committees where parents were involved in making the communication process smoother. I said I knew he had nothing to do with the forms, but they were very difficult to understand. He said they are state DHS forms. I asked him to check with his supervisor and call me back so I would call the right people at the state to request to be on a work team or something to improve the process. My phone call to him was a total waste of my time and his. If the letter had not been so ridiculously unclear, it would have helped.

4 days left by the way. 4.

Tightly wound

Akila raged on Thursday night for nearly two hours, from 8-10 pm, just as we were getting ready for bed. And she raged big time. It was not fun. There must have been a rage that I once distracted her from by saying I would do her hair. Every time she is raging, she offers to stop if I will do her hair, a 2-4 hour process. Great.

Then this morning, she woke up still tightly wound. She was in a horrific mood and being very mean and nasty. I knew I had to get her out of the house. We went to the beach all day, and I am so glad we did. Some friends met us at the beach, and Akila played with their daughter the whole day.

Then I pushed the envelope even further and we went to their house for dinner. Left at 7:30, and she didn't even put up a fight. I thought today was going to be very tough, but it went great. And we needed a great day. Thank you Lord!

TEFRA, some day

I sent in the application for MA through TEFRA on February 17th. I am impressed with myself as I copied the application and wrote the date it was mailed on top of it - are you impressed?

Anyway, we are still waiting. The phone system says it takes up to 30 days to determine eligibility. We are going on over 6 months. First, we had to schedule a physical as you have to have one done within 3 months of application, for the SMRT (State Medical Review Team) to determine if the child is "disabled". It took awhile to get the appt, and then a little while for the clinic to get the notes dictated and faxed in.

Then I received a letter that they wanted a neuro-psych evaluation. She had one done which I had already sent in. I resent it, and called. They said that was good. In the mean time, I had scheduled an appt for a neuro-psych evaluation as I did not trust them. Then over a month later I received another letter requesting a neuro-psych eval. I called, they said it probably meant they wanted a more recent neuro-psych eval (old one was 2 1/2 years old). We saw the Neuro-Psych Dr in the end of May. I harassed her for over a month to complete the report ASAP.

She got it sent in in mid June. Three weeks ago, on August 4th, I received the good news from the SMRT that they determined that Akila is "disabled". The SMRT sends the same letter to Hennepin County so I have been waiting to hear from them. I have called their automated phone system a few times and they don't show that they have received the letter. I was told that when they receive something in the mail or by fax, it can take up to 7-10 days before the social workers see it as the front desk staff have to scan everything. Brilliant.

I called yesterday. They have not received the SMRT letter (yeah, right). I faxed it last night. I received an email from the Family Coordinator at Children's Hospital and Clinics last week asking families about legislative things we were concerned about. I brought up the TEFRA process and how wasteful of state and family money, as well as state and family time it is. Do they think that the FASD went away, is that why they need a current neuro-psych eval? Is that why they want a physical dated within 3 months? Some families had one 4 months ago, and had to schedule a new one. We were due thankfully. I can understand it if the disability were something that is curable, or something a child could outgrow. But FASD and Turner Syndrome are permanent. What a huge waste of tax dollars, and time!!!!!

People, all I want is a PCA. Please. Twice a week even would bring great relief to our family, and to me personally.