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.
Wednesday, December 15, 2010
Thursday, December 9, 2010
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.
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.
Wednesday, December 8, 2010
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:
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.
Here is the breakdown of the days:
- Monday, Mismatch day
- Tuesday, Twin day
- Wednesday, 80's day
- Thursday, Celebrity day
- Friday, Grade color 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.
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.
Thursday, December 2, 2010
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.
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.
Sunday, November 21, 2010
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.
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.
Friday, November 19, 2010
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 offif 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.
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
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.
Wednesday, November 17, 2010
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.
Wednesday, November 3, 2010
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.
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.
Monday, November 1, 2010
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
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!!!
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