Tuesday, December 11, 2012

Special Mail

The chore of going through the mail is one that I get done every 2 or 3 days.  There are lots of catalogs, offers to give us credit cards of all sorts, things telling us that we have won this or that, and a couple of times a month there is a bill or 2 which needs to be paid.  Mail fills up the shredder and recycling bin regularly. 

While going through the usual garbage I came across something unusual, a large envelope, decorated with snowflakes, a snowman, and plenty of glitter.  When I opened it gift cards fell out of it, (lots of gift cards).  The card enclosed with them read in part "spreading joy to people who are special in the lives of adopted kids.  All of us are wishing you happiness this season and good things in the coming year"  It was signed with "thank you from all of us.

The post mark on the envelope was from this area.  We have no idea who sent it, but it feels wonderful to know that there are people out there who appreciate what we do every day of the the year.   We very much treasure our adopted kids, yes, even when they are being rather challenging.  We are glad that others have taken notice of what we are doing, but we never expect to be thanked for it.  Anyway whoever you are THANK YOU! from all of us.

Friday, December 7, 2012

Making Adjustments

It is about time I get around to posting something here.  I know it has been awhile, but really I have been busy with all the tasks involved in being the mom of 4 kids with special needs.

Allen and Paul are doing just fine, as is usually the situation.  Rene`, Allen, and I took Allen`s Mum (birth mother) out for lunch.  She so much appreciates us letting her be involved in his life.  That is not the situation with her other kid, though and the whole thing is very sad.

Lauren had a seizure just before Thanksgiving so we had to adjust her medication and shunt a bit.  She is doing fine and hopefully that continues for a long while.

We have a new psych doc. for Hanna and I think this will work out, but it is going to take some time and the psych resident has got to go, lets just say that this resident does not get Hanna and does not know how to communicate with me.  The first thing was to take Hanna completely off her ADHD med.  She is just a bit off task, has a shorter attention span and is not able to attend to details.  She is sorting things into color categories so we have a bin with Elmo, a red crayon,  a red car, some red puzzle pieces, a red ball, red Duplo blocks, etc. in it.  We also have other bins filled with things of every other color of the rainbow just like that one and for all of the things that are to colorful, which she has not been able to decide what bin they should go in there is a pile that she calls the rainbow group.  She not only did this with the toys, crafts supplies, and games, but she did it to my pantry.  Needless to say I can`t find a thing around here right now.  We are going to have to straighten all of this out, but I have the feeling that there will be crazy land to deal with when we do it.  Taking her off this med has not done anything to lessen her extreme anxiety which is what we were trying to do so we will soon be trying something else.

The other day Hanna came home with a small candle which she had purchased from the "school store" for Jared.  Trying to explain to her that we can not send a candle to him in his Christmas box because he is in the Army, in the Middle East, where they work with bombs, guns, dynamite, and other things that can be blown up is not sinking in at all.  I will have to get that box sent off one of these days while she is in school otherwise there will be trouble to deal with.

Anyway things just keep moving along one day folding into the next.  It is all okay because very soon I am going to leave this routine behind for a week of vacation.  I am so ready to go!

Sunday, November 18, 2012

Meow


I took these pictures of Chairman Meow a while ago.  He sits on top of his food box all the time.  Sometimes you can even catch him sleeping there.  I don`t know if he is trying to protect his food or get the box open, but he sure is persistent at whatever it is he is doing there.

Tuesday, November 13, 2012

The Entire Army

Yesterday there was a program at school to honor veterans with music and a speaker.  Lauren brought home the flyer from that event.  In it was a page listing 24 individuals from the community who have served in the military past and present.  She was looking for Rene` and Jared`s names on the list.  They were not there.  I have no idea how they determine who is on this list, but it does not matter, anyway Lauren could not find them and she was wondering why they were not on there. Hanna comes along to look at the list, too.  She tells Lauren that they are not in the Army cuz they have to be on the list to be in the Army.  I explained that Jared was in the Army and Rene` was in the Navy and that the list of 24 people is not the entire Army.  We could not get it to sink in with Hanna that the Army is a lot bigger then what can be listed on a piece of paper. We gave up trying before Hanna decided to blow up.

Anyway thank you to everyone who has served our country in all branches of the military and to those who are there now God be with you.

Friday, November 9, 2012

Every Day Stuff

After spending three long days in a row at appointments I finally got to spend all of yesterday at home. Just being able to stay home to do laundry, clean, and catch up on paperwork is exactly what I needed.

Monday Hanna went to the orthodontist, which means she had to have the brackets that she had torn off put back on for the millionth time.  They are now doing some work in moving her upper teeth from side to side and still moving the lower ones forward.  The teeth are getting straighter, but the process crawls along at a snails pace both because she had a really messed up mouth to begin with and she keeps messing with things to slow it down. We also got lab work done on her for an appointment she has later this month.  Lets just say that lab work with her is one of those things that you do only because it needs to be done and while getting it done you call in LOTS of reinforcements, turn your ears off because it is going to get LOUD, and hope that they can get it all done on the first try because repeats are even worse.

The next 2 days were Lauren appointments.  She is much easier to deal with, however she occasionally has tears and does not cooperate.  (I can`t blame her after all she goes through). 
We spent some time going over the EEG that she had done the week before and in general things are looking better, but not quite good enough to try and take her off her seizure meds so we will leave things as they are for now.  There was a rather lengthy conversation about adjusting her shunt which will likely happen next month. She also had some work done to address the tightness in her hamstrings.  things are going pretty well with Lauren right now.  It has been a long process and many procedures to get to this point and there will be much more coming up.

Since it looks like it is going to be raining and cool this weekend I am going to go get lots of groceries so I can make meals to restock the freezer.  Being gone so much lately has taken a toll on our supply of ready to warm up meals.

I told Lauren that next week she needs to go to school every day and when she asked what I was gong to do, I told her I am going to stay home and do nothing.  I don`t think she believed me though because she was doing her shake her finger at me thing and she told me to make cookies then. 

Monday, November 5, 2012

Lutefisk

I sent the non-norwegian and 2 of his sons to one of the local Scandinavian Lutheran churches for some lutefisk. Coming from a family full of Norwegians I had smelled the stuff and even tasted it, but no matter how much butter or cream sauce you put on it lutefisk is totally gross, awful, and certainly not something humans should consume.

My husband likes fish, all kinds of it and Trevor will be adventurous and try just about anything so they figured it can`t be that bad. they both came home and said that I would never have to make lutefisk for them.  That is a really good thing because the process of preparing that stuff is not something I want to learn.  I will stick to making meatballs, lefse, kringla, and yule bread.  Paul told me they had good pumpkum (pumpkin) stuff and he would like more of that.

Thursday, November 1, 2012

Taco Treats

Karre invited us over to her place for pizza last night.  That was an okay deal for me, I bought the treats for the taco treaters (trick-or-treaters) as Paul says it and she got the pizza. After we ate Karre took Paul in his Buzz Light Year costume, out to hunt for some candy in her neighborhood, Lauren took care of handing out candy, and the rest of us were going to play games.  Hanna decided that she did not want to play so she went and hid out in the laundry room and folded clothes.  Both Karre and Trevor tried to explain that you do not go to someone else s house and fold their laundry, that is just a little creepy.  After she got everything folded she finally came out and watched part of a movie with Allen.

We finished October with a sleepless night for Lauren (mom and dad took turns keeping her awake) as she had a sleep deprived EEG this morning.  Looking at the schedule of appointments this month I am thinking that it would be nice to just go back to October for a while longer.

Paul is a pretty slow walker so he got just enough candy for us to share.  It will be gone before the weekend is over. 

Tuesday, October 30, 2012

One Messed Up Kid

We have been having a conversation with Hanna over the last several days that is getting no where.  There is a field trip in a couple of days which involves shopping, buying lunch, and bowling.  Hanna does not want to go on this trip at all, in fact she asked if she could stay home with me, which she never wants to do.  I am not going to be home since I have to be at the hospital with Lauren for a procedure which will take several hours.

Hanna has no money since she made all of her allowance  ($180.00) disappear to who knows where. She was supposed to be saving it to replace some of the things she has destroyed around here.  Anyway she has no money so she would have to "just look" when shopping, she would have to bring a bag lunch, and her own bowling ball and shoes.  We told her that she could earn the couple of dollars it would cost to bowl by doing chores here. She has made it very clear that she is not going to pay to participate, she would really like us to give her money to shop, have  lunch, and bowl, but that is not going to happen here.  She gets allowance which would be available for her to use if she would quit destroying everything and trying to mess with us.  She has siblings who are watching so we will not be changing the rules for her.

Given the fact that Hanna does not like bowling (or anything else that she might lose at) or as she will tell you, she HATES bowling she has absolutely no intention in doing anything to earn the money needed to participate. There is no amount of explaining that sometimes you need to do things even if you do not want to do them or that this could be fun  if she wanted it to be.

She is just going to have to go on the trip and do nothing.  It is interesting that the teacher was able to come up with something that is more evil then the stuff Mom and Dad  make her do.  She really thinks she is bothering all the adults in her life, but all she is doing is making herself miserable.  The rest of us will move along just fine no matter if she makes good choices or not.

Saturday, October 20, 2012

No More Pancakes

We have pancakes for dinner occasionally and there are always leftovers.  I make all the batter into pancakes and put them in the refrigerator so the kids can warm them up in the microwave for breakfast. That works well until Dad happens to be supervising one morning.

Hanna knows that they are allowed 2 pancakes, that is it, no more, no less.  Apparently the last time they had pancakes Hanna was the last one to get hers and there happen to be 3 left, so Dad, being the nice guy, allowed her to have all 3 of them.

This morning there were pancakes for breakfast and of course Hanna, the kid who can`t keep track of a thing or remember how to do anything without lots of cues and reminders just happened to remember that Dad let her have 3 pancakes last time so that is what she wanted.  I was supervising so of course I am the mean mom who never lets her do anything.  There is no explaining or reasoning with her on this one. She had 3, that is a fact so now she wants 3 every time, and she will do whatever it takes to get what she wants.

Dad and I will have to have another discussion about NOT changing things no matter if it is logical or not.  DO NOT do anything just to be nice to this kid because it will eventually end in a screaming, flapping, hitting, mess sooner or later. Needless to say we will not be having pancakes any time soon.

Monday, October 15, 2012

Clean Bathrooms Or Drama?

I decided that I needed to clean bathrooms today, even though that was no where on the schedule this morning since I needed to deal with the furnace man coming and get the usual Monday morning laundry under control. The bathrooms, of course always need cleaning, but I got it done because I needed to work off some frustration, not because it was bathroom cleaning day.  Now how could a mom like me, who does well with order, routine, schedules, kids who all went to school, more medical appointments in a year then most people go to in a lifetime, paperwork, and doesn`t mind cooking, laundry or dishes get frustrated?

There is only one thing that nuts me up enough to clean bathrooms before Wednesday morning and that would be...Hanna.  She has been ssssoooooo in crazy land lately.  I don`t know what is up, but it needs to stop soon.  She has been harming herself, stealing, lying about everything, and just plain out of sorts pretty much since school started 6 weeks ago.  I don`t think school is the issue here since she has the same teacher, is in the same classroom, has almost all of the same daily routine, rides the same bus, etc, but she isn`t talking so I really don`t know what has gotten her so rattled.

I did get her an appointment to work on medication changes that may be needed, but that is a month from now, unless someone else decides not to keep their appointment before then. I told them that if they had anything else open to please let me know, heck I will even rearrange Lauren`s appointments if necessary. (That is a real hassle so it seldom happens) but I will do it if I have too. 

So until we have less drama around here the bathrooms at our house will be clean, hum, which do I prefer, clean bathrooms or less drama?  I would let the bathrooms be a disaster in exchange for less drama, any day.

Monday, October 8, 2012

Routine, Some Day

We are starting the week out trying to get back to routine.  Last week was home coming and all that goes along with that.  By the end of the school week Hanna was beginning to come unglued.  She continued to spiral downward all weekend and today she is home because her behavior would certainly get her sent home. We might as well omit the drama of that. Hopefully she can get her act together in a day or two.

Lauren is having less pain and head aches so she is going to try to go to her job on the regular schedule this week.  I hope it goes well for her.  She is obviously feeling better because when her big brother teases her (yeah Trevor it is you) she actually responds appropriately.  She is much more alert and has asked to help with things like making dinner, putting away clothes, and organizing the playroom.  She has a long way to go to get to where she was before this all started, but at least things seem to be moving in the right direction. 

Well after we get back to routine this week we have two and a half days off from school next week, so the heck with routine again.  Oh well, that is just the way it goes around here.

Friday, October 5, 2012

A Royal Day

Today the king and Keen (queen) of Sweden came to celebrate the 150th anniversary of the college that was started here by Swedish immigrants.  All of the kids who attend Paul`s school got to walk over to greet them.  He was a very excited little boy this morning.  Watch out when he is waving that blue and yellow flag!

This afternoon at the high school they were having the annual powder puff games for homecoming.  The seniors dressed up.  Allen was a beautiful Pink Princess.  He cheered his team on in the volleyball game.

Sunday, September 23, 2012

Lauren Update

Several people have called and emailed to see how Lauren is doing.  I have been at a retreat this weekend so PCAs have been taking care of her.  She is still having headaches most of the day and still needs to lay flat and be medicated regularly. 

She has been looking forward to going back to school tomorrow since the day she had surgery.  We are going to try for half days at least for now.  That means that she will not be going to her job, but we have to get her more stable before we work on that.

This is a slow process which requires everyone to be flexible. We don`t know what will work so we will have to take things one at a time for now. For now we just need to get rid of the pain she is having and then we can move on to something else.  Hang in there Lauren!

Thursday, September 20, 2012

We Are Home

 We made it through that great vacation.
 This is about 12 hours after surgery.  Lauren`s face was rather swollen.  She was not talking or moving much at all.  She just hung out with her purple teddy bear (Violet) buried somewhere in the blankets,

 This is the next morning when she got in her chair to work on her goal of going home.  She had to be able to sit in her chair for at least an hour and a half, but this look on her face after only about 3 minutes made it clear that she was not going to be going anywhere.  She made it 10 minutes and was put back in bed.  After tears, medications, and a shunt adjustment she rested well for the remainder of the day.  She got her nails painted, played with the therapy dog, and the music therapy group came to her room.
The next morning she was able to be in her chair long enough so we got to go home.  She is a pretty happy girl laying on the couch with the cat.

Now we deal with some pain issues while she adjusts to having the pressure in her head at a normal level.  This process could take several months.  We also wait to see if there will be improvements in her neurological function.

Anyway we made it.  I am going to a retreat this weekend.  Lauren`s care will be in the hands of wonderful people who I am sure can handle this shunt thing just fine.  Dad gets to hold the fort down here with 3 PCAs to help him out.  I will be back to deal with all of this first thing Monday morning.

Sunday, September 16, 2012

Pacation

According to Paul, Lauren and I are going on pacation (vacation).  In reality we are heading to the hospital long before the sun comes up in the morning, as she is having a programmable Ventriculoperitioneal Shunt (VP Shunt) placed in her brain to regulate the pressure. This will hopefully improve her neurological function, although no one knows how well it will work.  At the very least it will help to remove toxins that are building up in her brain. This is it, there are no other options, so we are praying that it works for her. 

In order to prepare for this pacation we had to take Lauren off her seizure medication, which has resulted in her having many seizures and requiring much supervision and care.

In the meantime Miss Hanna, our chaos creator, has been on one heck of a roll with her behavior!!!  She went to respite, THANK YOU VERY MUCH, where she will put on her sweet, innocent, act. She has totally exasperated me today so I am looking forward to a break from all of that.

I can deal with Lauren in the hospital for however long we need to be there.  She does her best to cooperate, she wants someone to be there for her, and she does understand that we are doing our best to help her.  This RAD garbage on the other hand is just so tiring, trying to work with a kid who does not want to be helped, does not care at all about herself or anyone else, and would never be thankful for anything.

Well I am going to feed the crew, get a couple more loads, of laundry done, make lunches for the boys, and get a few hours sleep before pacation begins.

Wednesday, September 12, 2012

Watering The Grass

We made a trip to the orthodontist yesterday, nothing particularly news worthy about that except that they adjusted Hanna`s wires 6 milometers on both sides.  That is a huge change. We are finally getting somewhere in this very long process.

On the way home we were driving down a rather busy 4 lane highway when traffic on both sides of the road had to suddenly pull off to the right in order to make way for 3 police cars, a sheriff car, and 2 fire trucks to go by. After they went by traffic crawled along at a snails pace driving on the shoulder of the road for a couple of miles and then we had to stop.  There was a grass fire (which is not a good thing considering that it was 90 degrees, windy, and very dry).  Anyway the fire department personal were hosing down the area and it looked like things were pretty well controlled.

Hanna pipes up with "hey, why are they watering the grass here"?

Really, you can not connect fire trucks, flashing lights, flames, and smoke and come up with fire equals water it down and put it out.

FASD sure makes a mess of things doesn`t it.

Sunday, September 9, 2012

apples



We went to pick apples and raspberries this weekend and we missed you, Jared!  Your the tall guy who can lift the kids up high to reach the best apples.  They had to get some that they could reach by themselves this time. 

We had a good time anyway.  It was warm and pretty windy, which kept the bees away.  The apples were good around here since we had a little rain this summer.

I made apple crisp, a large batch of apple sauce, and pies.  I only made 4 pies though instead of the usual dozen that we could get done when you were home.  My pies do not look as fancy as the ones you make since I am not great at doing that extra stuff, but they will get eaten just the same.


Friday, September 7, 2012

Silence

Do you hear the silence?  It started yesterday when Paul joined the rest of the kids back in school.  It is so nice to have a few hours of quiet.  I didn`r even turn the TV or radio on yesterday. The noise comes back shortly after 3:00 pm, of course when I have just gotten on the phone with the pre-op  nurse to go over the details of Lauren`s surgery.  Paul had to come bouncing, screaming, pounding, and screaming some more.  He was just a bit wound up after his first day of 2nd grade.

I have 10 days to get meals in the freezer, catch up on the paperwork, get clothes and bedding organized, and get schedules ready for everyone so Dad and the PCAs can take over here for 2 or 3 days while I sit at the hospital with Lauren. 

Lauren is having a programmable shunt put in so that the pressure in her brain can be regulated.  We have to stay there until her pressure is stable which is supposed to be 24 to 48 hours. 

I had better get back to work  while I have the chance to do so in silence.

Tuesday, September 4, 2012

A Day With Sonny Boy

"Mommy, Mommy, it`s time to get up, the wadio (radio) can come on now, I wove, wove, wove, (love) you so much, your Sonny Boy is here Mommy".

That is the morning wake up I get directly in my face every morning and 95% of the time it is before 6:00 am.  He can not say words with the letters l and r correctly and he has to hug and kiss you and climb all over the place, but he is cheerful so that gets the morning off to a good start. 

This morning the big yellow limo pulled up to transport 3 kids off to school  Lauren was moving slow, but got out the door okay.  She is starting her transition program.  She goes to her job for part of the school day and I think she is ready.  It is going to be a long process getting through this, but we will deal with it one thing at a time.  Allen is technically a senior.  Is that for real?  I just am not quite seeing it yet. Hanna is bored with the home rules and ready to get back to the school rules at least for a little while. 

That leaves me home with Mr. Paul, Sonny Boy, my buddy, or whatever else he is calling himself at the time.  He had 3 choices for breakfast this morning:
     eatmeal (oatmeal)
     mini weeps (mini wheats)
     my favorite ,pancakes with soap (syrup), doesn`t that sound tasty?

Until Thursday when they all go to school I am here listening to the nonstop chatter of my Sonny Boy.

Tuesday, August 28, 2012

Lets Get On The Train

Yesterday I spent ALL day having Hanna re-evaluated at the U of M.  Her fetal alcohol diagnosis and comprehensive assessment are a few years old so no one will let us use them any more.  This re-evaluating thing bothers me because she has the same Fetal Alcohol Spectrum Disorder she has had since birth, the same intelligence, same impulsive behavior, with poor judgement, the same concrete thinking, essentially the same alphabet soup so why are we doing this again?  I really do not understand why there can not be a system in place where some persons who are permanently disabled can be given that information so they would not have to go through this re-evaluation nonsense over and over again.  Seriously this would save lots of money and time for everyone.

I do understand that there are persons who have disabilities which are temporary and those persons would need to be involved in this re-evaluation process. When a person has prostetic eyes they are not going to suddenly get their vision back.  When there is a traumatic brain injury, that is not going to go away.  When a person has lost limbs they are not going to grow back.  The Cerebral Palsy or Down Syndrome is not going away so lets just call things as they are and get rid of this re-evaluating thing and move forward.

All I want from this nonsense is a clear statement that addresses the fact that Hanna needs structure, supervision, and routine and her need for these things will be on-going for life.  Services need to stay in place for her when she is doing well, because if they are taken away we have a downward free fall which leads to major issues and then we have to go about getting those services re-instated which leads to more re-evaluations, paperwork, interviews, and on and on and on.  We need to stop this roller coaster and get on a calmer, more consistent train ride in the country and then maybe we can actually take some time to enjoy the scenery.

Monday, August 20, 2012

Ready To Go

About 2 weeks until school starts so I guess I had better figure out what needs to be purchased. 

I went through the drawers and closets and everyone is okay with the clothes they have, except for Hanna who can`t get any of her jeans on.  She has not gotten any taller so now I have to find girls plus size jeans.  It is hard to get those cheap, which is what I need to do since she is gong to destroy them anyway.  I need to get Allen and Paul some socks since their`s have no elastic left in them.  Paul has grown out of his shoes so he will need new ones.  I already got the black pants and shoes Lauren needs for her new job. 

Paul has a list of things he is supposed to have.  Looking at that list and considering his needs I am making lots of changes.  He is going to need extra clothes long before he will use 6 notebooks.  He goes through a lot more wipes and tissues then the average 2nd grader so I will send 2 boxes instead of one.

I have not seen any list for the older kids yet, but I think that replacing the toothpaste, toothbrushes, deodorant, wipes, and folders is usually all I need to do.

There aren`t going to be any shopping trips costing hundreds of dollars taking place here before sending them out the door.

I think everyone is ready to get back into the school routine, I know I am.  I am also hoping that this school year allows me to have more mom time and less medical time.


Wednesday, August 15, 2012

Just Another Day...

Hanna gets her cast off early this morning so we will get a good look at how that foot of hers is doing.  She definently is in no pain the way she has been running and thumping around here.

After we get done with that drama we are heading to Gillette for the third day in a row.  It looks like the shunt situation is being put on the fast track since Lauren was having more issues then usual on Monday.  When medical people want things to get things done they can move it out in a hurry.

So that is what we are up to, filling out papers, waiting for this and that, filling out more papers, and yeah there will be some Hanna drama there too, just to keep things from getting boring.

Wednesday, August 8, 2012

Summer, Snacks, And RAD

Summer is moving right along here.  Next month the littles will be back on school schedule.  Paul is in summer school for the next couple of weeks giving us a quieter morning.  Allen has decided that he does not have to get up at the crack of dawn, so he is managing to get down here after the breakfast kitchen has closed. (That is after 9:00 am). Getting him back on school schedule might be a bit of a challenge.  The girls are up and running out of things to do by 9;00 am so they have been acquiring extra chores, just because I get tired of them watching me do all the work.

Our RAD child has morphed into a new state of radism that goes something like this. I hate you, I don`t wanna, I`m not gonna, you can`t make me, and on and on and on.  The mouth is working overtime at irritating everyone.  I guess this is the more adult version of RAD.  It is less physically violent that is for sure.  Is it any better?  Not really, it is just different.  It can be very annoying so sometimes we just have to tune her out.
Oh we still have all out melt downs 3 or more times a week, but not multiple times every day. Then last weekend we had an all out blow up which consumed the entire day with violence, just to remind us that we are on this RAD roller-coaster for life.

I was cleaning up downstairs when I came across 19 empty fruit snack wrappers, so I ask Hanna how the snacks were and she says "I didn`t eat any fruit snacks".  Since I had asked about snacks, not fruit snacks specifically I guess she told me exactly who had eaten them. I am guessing that when we get back to the orthodontist there will be a mess to straighten out in her mouth, aurgh!

Wednesday, August 1, 2012

Hanna Days

We have made it through 2 Hanna events in the last few days.

First we celebrated her 15th birthday.  It really was not much of a celebration since things like that send her to crazy land.  We met up with a few relatives and went swimming.  Afterward we had a picnic.  Hanna attempted to throw the few gifts she got away.  She claims the only thing she liked about the day was eating the banana bread Grandma brought.  I am not quite believing this, but if that is what she wants us to think that is okay.

The next morning the phone rang at 5:30 am and it was the surgery center calling to see if we could come in a couple of hours earlier then scheduled.  This turned out to be great since that left us with just enough time to get dressed and head out and it left absolutely no time for Hanna to get angry because she could not eat anything. 

Once there we had basically the same staff that was there last winter, on the day filled with more drama then any of them had been a part of in a very long time.  The couple of new people, who wanted to do things as they usually do were quickly redirected to work with the prevent plan that we wanted to try.  The prevent plan worked and we were able to come home late in the afternoon.  Hanna was on enough meds to keep her pretty much sleeping until the next morning.  I am so glad this went well and we did not have to spend time in the hospital.  Medical personal can learn from their experiences.

So now we have a kid who is one year older and a foot free of it hardware.

Tuesday, July 24, 2012

The Run Around

I am definitely getting the run around and it is beginning to make me just a bit angry. I have 3 kids who have complex medical issues for which they need treatment in the metro area. We are supposed to be reimburssed for our travel expenses, but in order to get that payment we need an annual referral.  We have had the same physician write the referrals for the past 12 plus years and they have been fine. Now the referral which clearly states that the kids have complex medical issues and need to be treated out of this area is no longer good enough. They want:
     ALL the medical diagnosis
     names of ALL the physicians and therapists
      a specific number of appointments
      exact dates and times of ALL appointments
      specific locations of all appointments when the referral is written
     assurance that there is no provider closer who can provide the care

Our physician does not have time to be writing ALL of this out just for a travel reimbursement and I don`t have time to be bugging him about this all the time.  Besides those 2 factors we do not have any idea how long (likely for all of their lives) they will need to be followed, the physicians and therapists change frequently, and we certainly do not know the dates and times of All appointments in advance. If we have a seizure issue tonight we may be running immediately. 
   
I spoke with a supervisor who told me that if we could afford to adopt these kids then we could afford to cover these expenses and we should stop bother them about this .

My response is that even though they are going to try to make this impossible I WILL be there with whatever paperwork they want, heck if it makes them happy they can pay one of their staff to follow me around while I take these kids to all of these appointments. The issue here is simply that they are eligible for this service (and many others which no one even bothers to tell you about) and all of this running gets expensive. The payments do not in any way cover our costs.  The whole idea that middle class families can absorb the expenses incurred raising kids with special needs is beyond nuts.  This is what we get for adoption support around here and it needs to stop.  We are families who sacrifice much while caring for the kids society throws away.  

Sunday, July 22, 2012

Ouch

I took Hanna into see the foot doc. We were supposed to be deciding the marits of an orthotic/brace verses leaving it alone.  It turns out that she has broken the screw that was holding the bone in her heel together off sometime in the last eight weeks. The thing is free floating in there and she HAS to be in pain, but given the choice between telling someone (which means getting it fixed) and suffering she will always choose to suffer. The Doc says that about 15% of the time those screws cause pain and need to be removed, but he has never seen someone break it off like that.  Hanna can accomplish just about anything if she wants too.

This tells me that her mental health issues far out weight the physical ones.
That is rather scary when you stop to think about the affects that has on her well being. She will without giving it a second thought harm herself or others. 

We need to get that screw out of there as soon as possible so she is scheduled for surgery July 30th. I guess there will be no more swimming and running around outside for her for the last month of summer vacation.  Just thinking about it is making me tired already.

As her Dad says the kid has a few screws loose all the time.


Friday, July 20, 2012

Van Shopping

Well, the accident drama continues.  We are getting a new vehicle, I don`t know what kind just yet, because figuring that out is not one of the things I do.  My husband is much more interested in shopping for those things and knows a lot more about engines, mileage, etc so we will leave the decision up to him and his little buddy, Paul.  Paul is so excited about looking at the dealerships and going for rides in different vehicles, his brain is in total joy with all this action.

We are still trying to work out the ramp/lift issue.  Insurance is not going to pay even one-tenth of the cost of replacing the lift we had.  Waiver services is not going to pay anything at all (since our van was to new).  That leaves us with taking care of it ourselves.  We are going to have to come up with something that is cheap, really cheap.  The only problem is that while being cheap it has to work.  We have to be able to transport Lauren`s power wheelchair.  For right now the only way we can do it is if we pull our trailer behind our truck or big van and that sure creates some parking hassles.  We have found one solution that would work, but it would require that her wheelchair have a seat that folds forward, and of course that would cost $$$ as well.

We had the bills down to the basics of electric, gas, and mortgage, I guess that will be changing soon.  With all the appointments and running with kids I do I need a van so I will take the bills too.

Thursday, July 12, 2012

A Total Mess

Tuesday evening we were sort of wrapping things up, okay we are in Minnesota so another half hour or so of chatting at our adoption support group, when Karre comes to tell me "Dad needs you right now". The first thing that comes to mind is what the heck is Hanna up to now? As we quickly exit the meeting I call to see what is going on.

It turns out, for once, it has nothing to do with Hanna. Trevor was driving the mommy car, as Paul calls it, better known as the grocery getter home from North Dakota when he was in an accident. He is bruised and scraped up, but will be okay, thank goodness! Our handicapped accessible van on the other hand is likely totaled. The front axle is seriously bent, the wheel is off, the glove box is in the back of the van, the windows are all busted, and the lift is no longer where it belongs. It was taken away from the scene in several pieces since it can not be driven.  Those are the damages I can clearly see and understand, and then there are damages to the chassis, something about a steering column, and other stuff that I do not understand.

So now we have insurance to deal with. They are getting things done in a timely fashion, another thank goodness. We also have to figure out who with pay to replace the lift, insurance, county, or us. Normally lifts can not be replaced for seven years and more then a hundred thousand miles. We had not yet met either of those requirements.  We have to find a van and decide if we will put a lift in it or not. We are looking at more portable options, but not sure yet what will work.

We have had no vehicle payments for two and a half years and had planned to keep it that way for several more.  All we are getting out of this mess are bills and considering the could have beens, that is okay.

Monday, July 9, 2012

One Of Those Days

We have been smoothly sailing through summer, oh we have the usual Hanna garbage going on, but it has been okay, until yesterday.  I just could not take her crap for one more minute.  She had smacked Paul, HARD (there was a lovely hand print on his face). He had told her multiple times, even yelled at her to "get out of my bubble" but she just kept irritating him until he finally lost it and through a book at her, (which, by the way missed) and then she smacked him more then once. Then she just had to tell her Dad that she did not do nothing, (of course not, she never does anything wrong). Lauren and I both saw everything and Paul`s face had the evidence, too so why on earth do you have to lie about the obvious?

Using as few words as possible Dad and I explained that young ladies (who will be 15 in a few days) do not hit people and then lie about the obvious. Things will work out rather poorly for them if they continue to do that.

We all got some sandwiches and juice together and went to the park leaving her home with a PCA. Thank you very much for releaving us!!  It would have been a rather unpleasant Sunday afternoon otherwise. Oh how I wish this nonsense would stop forever, but I know that is not going to happen so we prepare for the worst and hope for better.

Tuesday, July 3, 2012

My Wise Acre

You would think Paul was a real wise acre, like his Dad and older brothers Jared and Trevor are. They have a sarcastic remark for almost everything.  In reality he is totally serious when he says these things.

Yesterday we were talking about numbers. He has trouble remembering to go left to right so when putting cards down to make the number twenty-three he will put the three first and then the two. I asked him "how would you write the number nineteen" and he says "get a pencil and paper".

This morning he was going totally nuts, hollering something about there being to many holes in his underwear.  I had gotten rid of all the to small. destroyed stuff and replaced them with new ones so I had no idea what this was about. When I went to check the situation out, I found that he had discovered that boys underwear have a fly in them. Now he wants to know "why boys need holes in their underwear". I guess we will be teaching him how to use the fly when toileting. I have never actually had to teach a boy that before, they just figured it out for themselves.

Thursday, June 28, 2012

Allen`s I-Pod

"I didn`t steal it I took it"!

Those two words steal and took mean the same thing for most of us in this situation, but in Hanna`s mind they are totally different things.

Allen has an i-pod (his "talker") loaded with a communication program which he is able to use to tell us simple things like " I am going to the bathroom" or "I want to eat lunch".  This device has been missing since May 22nd. I know that for a fact based on what was going on around here and the notes written in the school/home notebook. The last two months of the school year Hanna was being pretty awful with her behavior mainly because other students were getting to do things that she thought she should get to do too. She is not old enough and explaining that gets no where. At any rate she had her Dad believing that Allen had just lost his "talker", which could happen, however, the couch and chairs he sits in were checked many times, the sand under the swings was raked out, his locker and backpack were cleaned out, and the bus was checked more then once and it was not found.  Dad and I had a discussion about this a couple of days ago and at that time we decided to drop the issue and have the i-pod replaced. We did not have Hanna or anyone else in on this conversation and did not tell them that we had talked about the issue.

This morning after Dad told her to stop being nosey Hanna was mad and stomping around the kitchen.  After awhile she blurts it out "I didn`t steal it I took it". That`s when I quickly put the pieces together and figured out that she was talking about Allen`s i-pod.  Now we have to wait it out to see if she brings it back or not. I told her she would be in less trouble if it was returned, but it is just as likely she gave it to someone else and she doesn`t have it or know where it is any more.

She brought me a dollar bill (don`t know where she got that from) and a button and says "will this pay for Allen`s i-pod"?

Wednesday, June 27, 2012

Babies And Wings

Our little boy is so awesome! The other morning before it was really time to be getting up he was in our bed chattering away as always. He asked where my wings were so I tried to explain that I am human and I do not have wings. So he came back with mom and dad hum mans (his words for humans) have wings on their fingers. Then I realized that I had not put my wedding rings back on after cleaning the bathroom the night before.

A couple of weeks ago Karre bought our cat a green, springy, frog toy with bells on its feet, and furry and feathery things on it. Paul has decided that it is his "buddy, boy, baby" and he calls it Kermit. He is carrying the thing everywhere wrapped in a doll blanket. There is no way to get it through to him that seven year old boys don`t usually carry cat toys with them to the backyard and park so I guess Kermit comes along,  He is an adorable, little, green, baby that attracts lots of attention from people who do not know Paul.

Saturday, June 23, 2012

Oh Really???

My daughter and her thesis partner called me with some serious issues with this article. I agree with their concerns. I find it hard to believe that those cells which are forming in the first eight weeks of pregnancy are safe from damage. These are the cells from which everything grows and develops and if they are impaired in any way that will cause damage to everything that comes later in the development process. For example our son who has Down Syndrome has three chromosomes on number 21 and if you were to examine all of the cells in his body you wold find the same throughout.  Why on earth would any mom want to take a chance on their child`s future? My kids whose birth moms consumed alcohol while pregnant can clearly tell you that they wish the drinking had never happened. They function at a much different level then most of us, but they do understand that they are different from their peers and when they are being impulsive, forget what day of the week it is, or can`t figure out how to make change for a dollar they get frustrated and they wish they could do those things like everybody else. http://healthland.time.com/2012/06/20/alcohol-in-pregnancy-light-to-moderate-drinking-is-safe-study-says/?iid=hl-main-lede

Friday, June 22, 2012

RAD And Routine

you would think things are going smoothly around here by reading this blog. Yeah they are I guess. Smoothly here is far from what the average family would find to be so, however.

All of the medical stuff has settled down a lot as compared to last winter. We are working with neurology for Lauren as usual. Paul`s neurology stuff has settled down so that is in a holding pattern for now. The 2 girls are still going to the orthodontist regularly, Hanna much more often then Lauren at this point. The good news is that Hanna is likely to get her braces off some time next year. There is a down side to that, in that she is likely to need jaw surgery at that time, BIG SIGH! The boys are stable. We finally have referrals for oral surgery for both Lauren and Allen to get the wisdom teeth out.  (We have been working on this project for several years now). Lauren`s is actually being done this fall when we do her other routine stuff for her CP.

The only kid going to school this summer is Paul and he likes to go play with his friends there so that is going okay, too.

We still have RAD behavior ALL the time. I have come to the conclusion that this will never change so we just live with it. It drives me nuts and there are times that I just have to get out of here to calm myself down. The kid spends all of her time doing things just to annoy. Some of the latest adventures include...

We are going to get your haircut in 15 minutes, get your shoes on and wait on the stairs for me. No shoes on, out the door, and sitting in  the mud puddle. Apparently Trevor said it was okay.

Wearing the only dress up outfit (which was on a high shelf) to the park, why because Mom was not here to say "no".

Feeding the cat a full 16 ounce container of food. (He actually eats 2 tablespoons at a time), poor cat was not feeling so well for a day or 2. I guess she figures that if she can not get away with eating everything in sight she will let the cat do it for her.

I had to put a code on my cell phone because she was dialing random numbers on it, and people seem to think that she should have her own phone, NOT!

All of this would be so okay if she really did not understand and know better, but when she is telling us that she is doing this "because is is so fun" then it makes me crazy. There is nothing fun about purposeful, defiant, nasty behavior and there never will be.

So this is routine and except for the RAD nonsense it is an okay place to be.

Tuesday, June 19, 2012

Went West

I have not blogged here for awhile, just been busy, that`s all.

We took a road trip to South Dakota for most of last week. This adventure was totally planned by Dad and Trevor. They took care of everything and I have to say they did a great job of it. They found us a cabin or more, like a rather nice house. It was built like a tree house on 4 levels so there were plenty of stairs on a spiral staircase. for Paul to drive his cars and trucks up and down. The place was laid out so we could keep Lauren on one level, too. It had a huge porch that wrapped around 3 sides which was furnished with more then a dozen chairs.

We had dinner and a country music show one afternoon/evening, went to an animal reserve to check out the bears, buffalo, deer, wolves, etc. (Paul was not really to excited about this event, though). Of course we went to Mount Rushmore, too. One afternoon I stayed at the cabin with the littles while they went to check out a cave. We had a relaxing time sitting on the porch while Paul arranged all the chairs into a school bus.

The trip home was a bit wild, but we made it. As we were leaving and had stopped to fill the fuel tank up the check engine light went on so we went to the dealership a couple of blocks from the gas station and they said they did not repair diesel engines and they sent us to quite a large truck/tractor garage across the street. There we met Turbo (that is actually what it said on her name tag). She was a very slender, early thirty something, blonde, mechanic. Taking one look at this chic and you might think "oh my goodness we are in trouble now", but this chic really did know what she was doing. She changed some clogged filter, added a little oil, and adjusted some other thingy. This all took awhile so Karre and I were left to entertain the llittles in the "lounge", which thank goodness was smoke free. We found popcorn, pretzels, bottled water, a TV, and old magazines. Lucky for us Allen will eat popcorn and watch cartoons all day and Paul will look at cars and trucks in magazines forever. Karre took Paul outside to walk around the parking lot to look at vans, tractors, trucks, oh did I mention LOTS of trucks. I know this was Paul`s favorite part of the entire trip. Well they did the fixing and the check engine light was still coming on so they did some more investigating and fiddling with things.and it still came on. Turbo and 2 other guys, Dad, and Trevor finally decided that there is something wrong with the computer board and how it rwsets itself so we got to drive home with that light on all the way. We made it though and now we have to take it to get this computer thingy fixed.

I don`t deal with this vehicle repair stuff, that is Dad`s job. I have enough to do to keep the kids repaired.

Sunday, June 10, 2012

Fly Patrol

We have a new obsession around here and this one I do not mind in the least. Hanna finally figured out how to use a fly swatter. (Hey, actually being able to destroy a fly with a fly swatter takes some patience and coordination). She had been wandering around here for more then an hour trying to get a fly and when she finally whacked one dead she was so proud of herself. After that she caught on and had half a dozen of the obnoxious pests before lunch. After lunch she started looking for them again and got some more. Then she put the swatter away and paced around the kitchen. She got it out once again and went back to work on the task. She repeated this several times all afternoon. In the end she cleared out all of the flies in the house, but by tomorrow morning there will be more of them to keep her busy

This obsession will keep those flies from driving me nuts all summer long. I think I might have to reward her for this one, maybe we will have to spring for a new, hot green fly swatter.

Saturday, June 9, 2012

Cooling Off

We packed up plenty of ice water, sun screen, swimsuits, towels, buckets,shovels, trucks, PCAs, and kids and headed to the swimming hole. Everyone played in the sand and swam all afternoon. The place was packed since the MN Zoo was there having an animal show.  I figured that Hanna would freak out, but she held up pretty well until late, when everyone was tired and hungry so we headed home.

Swimming is a pretty good way to spend the afternoon when it is 94 degrees. That is pretty warm for June and I hope it cools down a bit for awhile.

Friday, June 8, 2012

Understand Or Not?

I spent yesterday afternoon trying to explain to a case manager how manipulating and comprehending work with a FASD/RAD/developmentally disabled kid.

There are many times when the kid simply  does not understand, just because she is not intelligent enough to do so.  For example she does know what a $5.00 bill is, however she has no idea what you can buy with that amount of money.There are also things that are to abstract for her such as telling time. She can read to numbers on a digital clock, but does not understand what 1:15 pm means in relation to the days events.

There are other times that she does understand and she chooses not to listen because that is just what a teenager does and when it is a teenager with RAD they amp it up to a level 1,000 times greater then the average teenager. Lets just say that the kid is very defiant.  For example she knows that she is not supposed to draw on the wall, but she does it just because she can. She also knows that you use toothpaste to brush your teeth, but if she thinks no one is watching she will not use it. The average kid grows out of these behaviors and becomes responsible for their own hygiene, money, meals, health care, education, etc as a young adult, however that is not going to happen in this situation. The kid will ALWAYS require cues and supervision in order to function in an appropriate manner.

There are also times when you really do not know if the kid does not understand or if she is just trying to rattle everyone around her. She can lie and look very convincing. She knows how to use tears when she needs to and she can suck unsuspecting bystanders into her drama.

Just why were we having this conversation? Well, it goes like this if the person does not have the ability to  understand they get service points and if they are just manipulating they do not.  We have a situation here where we have both so that cuts down on service points.  Things get a bit messy when people do not fit neatly into a standard set of expectations.

Thursday, June 7, 2012

Still Early Morning Here

School is out so we are getting into summer time routines, however no matter how late we let them stay up or how long they have run at the park, we still have the by 5:00 am Hanna and Paul wake up call. Of course that means that everyone else will also be up since these 2 have absolutely no idea what ''quiet'' means.
As soon as anyone is in the kitchen the cat is joining in the noise because he is looking for breakfast. Lauren and Hanna are right there digging out the cereal and milk, too. There is no vacation from getting up to watch the sun rise and going to bed before it sets.

Tuesday, June 5, 2012

Chairman Meow

 Paul, the kid who screams, crawls up your leg, shakes, and totally goes nuts as soon a he knows there is an animal around actually asked for a cat about 5 months ago. After making sure he was feeling okay and hearing it repeatedly from him we started taking him seriously. We had been sitting with him while he got used to Karre`s cats, Sven and Ole. After quite awhile he actually got off the chair and started playing with them. He had even asked to go to Karre`a house, more then once to play with the cats. We finally decided to get a cat, but it had to be a Mom approved cat so finding the right one took a while.

Introducing our adorable, baby,Chairman Meow, or Meow for short.  He is a Munchkin cat so he will stay little like he is now. He weights 1 1/2 pounds. He is all white except for one very, very tiny black spot by his eye, which you will not even notice unless you are really looking for it. He is famous, since the vets asked if they could put him on their Facebook. (of course that brings about a discount for us).
This cat likes to be held so he will come stand by you and rub his head on your leg and meow until he gets picked up. After he runs around and plays he just plops down and sleeps anywhere. Hanna and Paul should try that sometime.
This is Paul holding Chairman Meow for the first time all by himself. 

Tuesday, May 29, 2012

Purple Party

We had a "Purple Party" over the weekend to celebrate with Lauren all she has accomplished. She did not care what food was served or any of the other details of the party, the only request was that it be purple. We had everything from purple flowers, M&Ms, and cupcakes, to purple cauliflower. She was thrilled about all of this. It was nice to celebrate with many of the people who have been with us on this journey over the past 12 years.It is wonderful to have family and friends who care as much as we do for Lauren.

Everyone knew exactly what Lauren would like: purple nail polish, purple bracelets and earrings,purple socks, and a purple blanket.  There was also money for her to purchase an I-pad which Mom and Dad are adding a purple case too.

Monday, May 21, 2012

Crazy Days Of May

Just taking a few minutes to blog, really to much going on around here.  The kids will be done with school next week already. Am I ready for that? No, but it is going to happen anyway. I somewhat have PCA schedules figured out for the summer months.  I will get to the rest of it soon.

Last week we had an art show for Hanna, Allen, and Lauren to go to. This is a program they do often where kids with special needs get to do some "real" art as Hanna calls it. The only trouble with this art thing is that Hanna REALLY NEEDS to keep every single thing and that just is not going to happen since we don`t have room for it.

The state adaptive bowling tournament was last week also. Lauren and Allen participated. They did well. Hanna`s behavior kept her in school that day. After watching this event I am positive that Hanna will not be participating in the future. She needs a lot more structure then what was available.

Before school is done we have a party for Lauren this weekend. It is going to take some work, but all of her siblings will be here for a few hours. Hopefully I can round all of them up for a photo.

As soon as we are finished celebrating we have to get a moving truck loaded with Jared`s stuff so he can drive it to Georgia. We have gotten lots of moving practice in lately. I would really like to know what furniture is staying here and for how long? It seems our house gets fairly organized and then, wham we get hit with another round of moving.The best part of this round of moving is that he IS taking HIS DOG with him! I think Karre, Mom, and Dad have had that dog more then he has.  We have done our share of dog sitting.

There is going to be a small party for the 3 seniors in the special ed classroom. Karre is making some fancy star cake for that.

Trevor and I are helping a mom do the paperwork for conservator/guardianship some time this week. As Trevor says "after doing it twice it isn`t scary at all".

They have field day at Paul`s school. He is not excited at all about that so I figure he will spend the time entertaining his para instead.

Lauren is going on a trip to Valley Fair with her class. Rene` gets school bus riding and roller-coaster PCA duty that day.

I have 8 PCAs/respite providers working this weekend. Yes, I am very thankful that everyone is giving up all or part of a long holiday weekend to work.  We could not do this without them.

And now back to cleaning and organizing this place.

Tuesday, May 15, 2012

Celebrating And Moving

I got flowers for Mother`s Day. They were beautiful. I spent the day hauling 2 kids home from college, cuz that is what mom`s are supposed to do, right.
Before we hauled mountains of stuff Trevor graduated with degrees in Communications, French, and International Relations. What he is going to do with all of those degrees, I don`t know, but whatever it is it will be great.
Now we are both alumni of the University of North Dakota.

Tuesday, May 8, 2012

Enough Already!

It is Angie`s (our PCA) fault that Hanna pulled 3 brackets off her braces...

It is Angie`s Grandma`s fault because she gave her 2 cookies...

It is Dad`s fault that he didn`t tell me that she had broken them off...

It is Mrs. Teacher`s fault that she has not been wearing her bands on her braces...

It is the orthodontist`s fault that she has to miss school today to have this mess repaired. They could just be open on the weekend you know...

It is my fault that she has to wear braces...

And guess what we have all had enough of this ranting, VERY LOUD, tantrum already this morning because she wants to go to school to make a poster.

Enough already!!!

Monday, May 7, 2012

Update

Well we made it through the weekend.  Lauren was not doing so well at getting adjusted to the lower pressure in her brain. She was not eating, she was whining and cranky, her color was terrible, and she was in pain.  We pretty much had to shut things down to give her body time to do whatever it is it needed to do to adjust. She was doing considerably better late yesterday afternoon and she did eat dinner last night so I think things are looking up, at least I hope so.

Now we are back to something that we are all very familiar with, observing her and documenting the results.  We also need to schedule a shunt study.  As I understand things this is where we make the choices as to how and when to proceed with this.

We keep moving along, one thing at a time.

Thursday, May 3, 2012

Just Chillin Today

We are home and moving, but rather slowly at best. We got the loud bunch on the bus and Dad went to work so it is just Lauren hanging out with me today.

We had a lloooonnnnggg day yesterday, as in we did not even leave the hospital until 9:00 pm. After having her procedure Lauren needed to lay flat on her back for at least 6 hours. Now that may not seem like it should be to difficult to accomplish, but when you are telling someone who is feeling miserable that they are going to feel really, really miserable if they do not lay flat, and that all that someone wants to do is go home, go home, go home, it becomes more of a challenge.

We watched a couple of movies, I read to her, Karre read to her, we tried to play UNO, we listened to music, she feel asleep for about half an hour, and then we watched cartoons.

While we were hanging out there with her,I got a call from Dad telling me that we needed to stay put until some severe weather went through because he did not want us to have to stop some place with Lauren. It sounds like he and our PCA, Angie had a great time trying to serve dinner, and get kids showered, while being interrupted to go to the basement. I was okay with missing out on that adventure. Hanna told me this morning that she was mad at Angie because she made her take a shower 2 times. Apparently Hanna had just gotten in the shower when the sirens went off so she had not used soap and had not washed her hair so Angie made her get back in the shower for a second time to finish the job.

Well we are home, Lauren is whiny, we have had tears this morning, and she isn`t feeling all that great, so we will cover her up with her purple blanket, let her watch cartoons, and chill today.

Wednesday, May 2, 2012

Today Is The Day

It`s here the day we do the test run at reducing the pressure on Lauren`s brain. There are 3 things we hope to accomplish with this procedure. First we are hoping to make her feel physically better. She has never complained of being in any pain, however it is very likely that she is experiencing headaches or other pain. Secondly we hope to get her cognitive functions back to where they were before this all began at best. There may be some improvement or none at all. This area is quite uncertain in its out come. Finally in reducing the pressure the seizure disorder may also be resolved.

So here goes another day of signing papers, answering the same questions again, waiting and waiting and waiting. and I am sure to get some reading time in too.

Sunday, April 29, 2012

She Waited For So Long...

 She got the hair done...
 she got the nails done...
and then she got to wear the dress!  They danced, went bowling, played games, and won prizes. Lauren was up at 7:30 this morning with a smile on her face, now that is not typical teenage behavior after being out until 4:00 am. Prom 2012 was a success all around.

When I spoke with this young man`s mom at midnight she was still worrying about how late they were going to be out. I told her the PCA could handle this and I was going to bed. I suggested she do the same since she needed to be at work at 6:00 am this morning. I do remember the first time we had a kid going to Prom. We stayed up all night, too.

Friday, April 27, 2012

Papers, Kids, And The Weather

I am doing paperwork today, only because I cannot put off paying the bills any longer. I have organized about 3 months worth medical and school reports, PCA assessments, legal stuff for conservator/guardianships, and payroll info. It is now neatly piled on the corner of the desk ready to go into the kids binders. Once that is done this office will actually look presentable.

Paul is on a field trip today. It includes a little more then an hour of bus riding, a theater production, pizza party, and going to the history center. It seems like an awful lot for first graders. They were pre-warned that he may not be able to handle all of this. He told me this morning that he is glued to Mrs. B. for the day and he will tell her if he needs to be a little crazy sometimes. Mrs. B. is generally very good with him, but this is completely out of his routine. There is a plan in place for him along with some other students who have special needs to return to school early if needed.  So far I have gotten no calls about that.

Hanna had to call me because she ditched her papers again. We are going to just let this slide for a few days to see if she can calm herself down. She is very upset that the older kids in her classroom are going to Prom this weekend. We will get her back on track and then, guess what, there will be graduation so she will be a mess about that too. Hanna, you will get your turn, lets hope that you will not sabotage it when the time comes.

I need to get something warm in the crock pot for dinner. It is cold and wet today. Lets hope the weatherman is a little off about tomorrows forecast of 48 degrees, bur, Lauren is going to freeze in her dress. She is going to have to wear a coat.

I had better file these papers and get out of here before they all come home.




Thursday, April 26, 2012

Little Girls

Okay, they are not really little any more, but in our family Lauren and Hanna will always be the little girls. They are about as opposite as it gets.

Lauren is tall, has blonde hair, and light blue eyes. She is all about being a girl. This weekend is about her having fun. Karre has volunteered to take her to have her nails done. She has had every PCA, school paras, her sisters, and friends paint them whenever she gets a chance, but this is entirely new and she has let everyone know how excited she is about that. Karre is also taking her to get her hair done Saturday morning before the Prom. She gets to dress up, wear real dress shoes, earrings, bracelets, and carry a purse too. She is one happy little girl these days.

Hanna is short, has dark hair, and eyes and wants nothing to do with this girl stuff. Maybe the girl stuff would be a little bit okay with her if she were older and was getting to go to the Prom too. I am not even sure if it would be okay then because she does not like to dress up at all and she does not like to be at events where there are lots of people. It is just that she sees other kids happy and she can`t handle that. She is in sabotage mode now, not at all liking that her sister is doing something that she will not get to do. Her attitude has been pretty awful the last few days.  She has threatened to destroy Lauren`s stuff. She informed me this morning that she is not talking to me, but she sure is yelling at me.  Explaining to her that she will get a chance to do the same things Lauren is doing now when she gets older is getting no where. She doesn`t really understand what later means and when she wants something she wants it right now. That is so 2 year old, but that is where she is at socially.

I think we are going to have to get Hanna out of here, at least for a few hours this weekend or we will have a little girl fiasco to deal with.

Tuesday, April 24, 2012

The Cute Mom

Saturday when it was raining I was heading out the door to pick out a new refrigerator to replace the side-by-side, no room for anything, been annoying me for 15 years model that we have in our kitchen. Paul begged and pleaded to go with me. Finally I gave in, helped him get his shoes on and out the door we went.

When we got to the appliance store he was bouncing, sort of skipping, and clapping, and he very loudly hollers "mom you are the cutest mom ever, ever, ever, you bringed me to the bestest store".

The sales lady sort of chuckles and asks him what he and his cute mom are shopping for. He says "the biggerest fridge in the whole world cuz we got lots of stuffs".

Well, we didn`t get the biggest one on the market, but we did get one that should fit our needs much better. Today the fridge from our kitchen is going over to Karre`s house because she wants more freezer room and she is okay with the smaller fridge section. The fridge from her house is going in our basement because we always have more stuff then one fridge can hold, and the old one that is down there now is coming out of there to be sold. 

That means there is a lot of cleaning out and rearranging for this cute mom to get done this morning.

Monday, April 23, 2012

How Do You Do That?

The other day while having a conversation about the usual, Hanna, I was asked "how did you guys parent this kid without support"? It was not pretty, in fact for nearly 3 years every single day, it seemed was a battle. Mom and Dad were trying to keep things consistent, realistic, creating boundaries, and trying to keep everyone safe. The people who were supposed to be helping us to do this were being manipulated, ripped off, lied to, conned, and used. The kid was totally out of control, getting to do whatever she wanted to do, regressing significantly, attempting to destroy our family, and mainly in full blown RAD mode all the time.

During that time it felt as if no matter what we did or how we did it it was not going to work and it wasn`t because as soon as she left the house the kid was free to undo whatever had been done. We banged our heads on so many brick walls and maneuvered our way through so many obstacle courses it was ridiculous. This is when families give up on these kids because they are neither getting anywhere with the kid or the establishment. The parents are seen as the problem and you know there is only so much of that a person can take before they really do become what they are perceived to be, the problem. This is when moms and dads begin to disagree, when siblings get hurt (both physically and emotionally), this is when you go to bed exhausted, yet you can`t sleep because your brain is rethinking the events of yesterday while trying to figure out what to do about tomorrow. Living like this is just plain awful and I never want to go there again!!

Now we have the school, including teachers, paras, and social worker working with us. We have PCAs who are well trained and consistent. We have older siblings in agreement with Mom and Dad. We have a Grandma who gets it. We have friends who really do understand. We have a team that works together. There are times when the kid still tries to manipulate, lie, etc, but most of the time she gets caught and is held responsible for her behavior. There are times when the best plans do not work. There are times when we run out of ideas. The behaviors will never go away. The kid will always have an attachment disorder, but with a team working together we do have consistent boundaries, simple expectations, and a lot less behavior craziness.

Of course not everyone is on board. We just keep working on that. Of course there is a need for more PCA/respite staff (since this is a 24/7 job). They are out there somewhere and we will find them, too. Being seen as a part of the solution rather then the crazy mom makes my life doable. This is still very hard work, but it can be done if we all do it together. I don`t really know how we survived without our support system, but we did. We will still find ourselves frustrated at times in this journey, but as long as we communicate (that is a must), keep things simple and consistent, create appropriate boundaries and continue to care about the kid whatever happens will be okay. Even though the kid will not agree now, we can hope that she will some day  appreciate the stable community, friends, and family she has. It takes an incredible amount of effort from the entire team to provide that for her. I just keep reminding myself that she is worth it.

Friday, April 20, 2012

So, Hanna

Hanna came home with a paper that said "read Hunger Games". I asked her what that was all about. She said that her teacher was reading that to her and she was supposed to read it. Hanna has heard this and that and the other thing from kids at school and she likes to be part of the action so even when she has no idea what is going on she will do whatever she thinks the crowd is doing. She also has heard about the movie and she wants to see it.

I was pretty sure her teacher had more sense then to read that to her and I knew she was not able to read it herself. We have to stop to explain what is going on every paragraph or so when reading  Ramona books to her so The Hunger Games is clearly beyond her. As for her reading it herself, it is not going to happen because she can not read even the simplest material on her own. I emailed the teacher and about thirty seconds after I pushed the send button I got a call from her. No, she was NOT reading that book to Hanna and Hanna was not reading it either. They had read an article about it in their current events paper, that is as far as this subject matter will be covered.

When I told Hanna that I had talked to her teacher about this and I knew what was really going on she says "it mean I not go to the movie either".

Um---you got that right, kid.

Wednesday, April 18, 2012

Wild Start To The Day

It was a pretty wild morning trying to get Paul off to school, and just when we were getting him to calm down a bit the bus had to be ten minutes early. He was back in loud mode in about a half second so I am sure that is going to be a LOUD ride.

I have to take Hanna to the foot doc first thing this morning and then get her to school. The foot is looking fine and she is pretty much back to normal. After that I need to get payroll done and then get groceries. I have 2 freezers that I am trying to get completely empty so that I can clean them so stashing meals to bring out and finish up is not happening for another few days. I miss doing that so I am motivated to get this job done soon. Then I will have a cooking day and get things back on track.

After school I have to go to bowling to see what Miss Attitude will be up to. We have talked several times this week about being a team member so we will see if any of that sunk in.

Monday, April 16, 2012

Take A Hike!!!

It is one of those days when I would just like to tell all those "I know how to deal with your kid" know it alls, to take a hike and leave us in peace. No, actually you have no idea how to deal with my  kid, but I can not tell you to take that hike because you control the $$$$ that my kid will need for the rest of her life in order to keep her safe from herself and keep society safe from her.

She is who she is and that is okay with us. There is no therapy to fix her. The alcohol and trauma make her who she is. Maybe instead of trying to fix her you could just support the family that is out there working every day to give her structure, keeping her safe, caring about her even though she does not care about herself, along with all the other things a family provides.  We love her just the way she is, but she needs to be supervised 24/7 and we do need to sleep and we do need to cook and clean and take care of our other kids and work and go to meetings and appointments and maybe once in a while we need to take a break from all of this because we are human after all and we get tired of all this. We especially get tired of people who HAVE NO IDEA what our kid is all about, yet they seem to have LOTS of advice.

Have you ever had one of those people say "she is so sweet. I could take her home and she would do so well. I know she is mature enough to take care of herself if only you would let her". AAUUURRRRGGGGGHHHH!!!

Blah, blah, blah,yadda, yadda, yadda, and on and on and on. That went in one ear and out the other. I have got to get dinner on the table.

Sunday, April 15, 2012

Soggy Morning

It is a soggy morning. I just brought in my to soggy to read Sunday paper. It was to wet to read the comics at the breakfast table as I usually do on Sunday mornings.  I will let it dry and get to it later. We needed the rain so I will not complain to much, but looking out the window at the uneven, rather shaggy lawn which is strongly suggesting that I get Dad out their to clear out the garage so the mover can come out of hibernation, which means I have to mow soon.

While Paul ate his eatmeal (oatmeat) he chattered, bounced, clapped, and banged away as he always does before his medication kicks in. Some how the racket is less bothersome when we don`t have to attend to a strict schedule. He was telling me that we have to play inside today because the radio says it might funda (thunder) and he does not like funda because it is to noisy.

I think we are in for a soggy day and maybe there will be a little funda later.
I have enough paperwork to keep me busy in my office for most of the day. Meanwhile Paul will be driving his cars and trucks around and then he will line them up and rearrange there order many,many times. He seems to think the space under the desk makes the perfect garage and I am sure he will want to use his garage to keep his vehicles out of the rain today.

I might just have to order Hanna to build him garages with the Duplo blocks for awhile in order to get him out of my way. She WILL NOT play with him (or anyone else) unless someone in authority tells her she has to, but she isn`t doing anything else except sitting on the couch pouting and complaining about how terrible her life is so I might as well give her something to pout about.


Thursday, April 12, 2012

I Am Trying To Understand

I an trying to understand, really I am, but sometimes I just do not get it. Why is it that the kid who tells me every single day that she wants to be like the other kids works sssssoooooo hard to do just the oposite?

Yesterday they had bowling and Hanna has the ability to do very well, but no way is she going to do what she is able to do. Instead she stands there looking up at the ceiling and plops the ball down, walks back to her seat, has to be told to throw to ball again, is told many times to pay attention to what she is doing and just does not give a rip at all so she does it all over again and again and again. Then she is pouting because both Allen and Lauren had higher scores then she did. Lets just say that if she would even half try she could beat both of them every single time. After the pouting did not fly she said that she was just letting H. win. I explained that they were bowling as a team against another team who was bowling at their town. (She did not get that concept at all) and she should be doing her best to help her team win. She was mumbling that she did not like her team and so she was not going to do it right.

There is a lock-in for 7th and 8th graders so last night I went through the rules explaining them at her level, having her sign the contract,and then signing it as well. I also scheduled a PCA to accompany her to the event. I know there will be adults there, since I have done that in the past, but there is absolutely no way for her to attend without direct supervision. I had her put the paperwork in her folder, in her backpack, in the closet. It took lots of prompts to get that done. This morning the folder with the lock-in paperwork and the check to pay for it have disappeared. Is this just her way of saying I know I can`t handle this? Is she going to tell her friends that Mom lost her stuff so she can`t go? Did she even want to go in the first place and if she did not then why not just say so?

Whatever it is that makes a person do their best, whatever that may be, and be okay with what they have achieved and who they are that is what we are working towards. It is so hard to understand the trauma this kid lives every day. There is always the hope that some day she will wake up accepting who she is and all that there is out there for her to be part of. The beginning was rough but is that reason enough to destroy what you have now? I am trying to understand, really I am!

Wednesday, April 11, 2012

Dress Shopping

Dad had to go fix something at work, We had Hanna with a PCA from sun up to past her usual bedtime, and we left Rene` and Paul in charge of coloring some Easter eggs while Karre, Trevor, and I took Lauren Prom dress shopping last Saturday.

Dress shopping for Lauren is a bit tricky. She seldom wears a dress because her CP, AFO`s, and wheelchair are not very well suited for dresses. Lauren is our princess and if she had her way she would dress up all the time. I have found that we can generally dress her very nicely in slacks and a nice top or sweater, but for the Prom she will get to wear a dress. She gets to go without the AFO`s, too.  However, the wheelchair goes to Prom. Paul says he is going to give it a car wash. (He remembers helping Karre clean the car before Prom last year). The only requirement for the dress according to Lauren was that she wanted it to be purple. Mom had a few other things on the list. 1. It could not be floor length since she could not stand or walk at all in that and it would get messed up in the wheels of her chair. The best option would be a tea length dress.  2. It needed to have straps or sleeves or something to keep it where it belonged on top. 3. It needed to be in the budget.

There are lots and lots of dresses at the Mall of America. We looked at hundreds of them. There were dresses that weighted 20 pounds with all the rhinestones and beads on them. Most of them were floor length so they were quickly eliminated.  We had found six that we thought would work, lucky for us 3 of them were at one store so we went back there and had her try them on.The first one she tried on was the one Trevor picked out. She tried on the other two there as well, but the first one was going to be the one.

Now just for a little suspense I am not going to post photos until the big day. I will say that Lauren did not get purple and Mom did not exactly get what she had in mind either, but she will look gorgeous anyway.  She is so excited just knowing that she gets to go that I don`t think she really cares what she wears.

Tuesday, April 3, 2012

It`s A Date

The Prom date is set. He asked Lauren to go and you know what she said "I have to ask my mom".

That is predictable Lauren. Even though we have been talking about what to do when a boy asks you to Prom, even though she knew who was going to ask her, and even though we had already given her permission to go she thought she should ask her mom.

I have got to give the girl credit, she does have boundaries. She needed a little coaching, but she did say "yes" so it`s a date.

Prom Plans

It`s that time of year when things really get busy for the teenagers. The school year will be winding down in a couple of months, but before we get to that there has to be a Prom, right. Lauren is going, and she is sssoooooo excited about that! I don`t know if the boy asked her yet, but he was so sweet last night demonstrating how he was going to do that. He said that he was going to get his hair cut and wear a suit and Lauren was not going to wear a red dress.   
               
This year all the juniors and seniors in their special education classroom are going except for Allen (we will do this next year with him) and maybe one other kid. This is a great opportunity for all of them to practice social skills both in the classroom and out. They will practice doing the Grand March during the school day in the gym. We will have pizza at our house before Prom since going out to eat at a nice restaurant would likely send some of them over the top before the big event even started.

We have 2 PCAs who will tag team (since one of them turns into a pumpkin after midnight). One will go to the Prom and the other will go to the After Prom Party.

Last evening the moms and the teacher who has been communicating with the school personal and the committee chair of the After Prom Party, got together to go over the logistics of this. It takes a whole lot of planning to do things like this with teenagers like Lauren. My neuro-typical kids would be the ones telling me who they were going with and what they were doing, instead we need to make the plans for them.

Now all we have to do is get the dress figured out and decide what to do with her hair.Lauren will be on top of those details for sure.

Monday, April 2, 2012

Going To Celebrate!

We are going to have a party for Lauren since she does get to take part in commencement with her class! Okay, we had already decided that we were going to party no matter what happened with that because she deserves to have a party just as much as all the rest of the high school seniors do.

This does not mean that the drama of this affair is over though. It simply means that the school district has agreed to let her participate and we do have a transition plan that I think will work for her. We may need to make some adjustments along the way, but that is okay. We have a place to begin.

It has taken 10 months to get where we are now, that is far to long and she has missed out on things. When we decided to take on this issue it was not only for Lauren, it was for all of the students and families who will be in this place down the road. I do not want other students and their families to be stuck in limbo or having to choose between inclusion and transition services. I do not have anything in writing to help families, all I got was "we will have to look at this individually". That is not going to work here. This will all happen again so I guess I am going to have to look into getting the law changed in this state to deal with this. Getting that done is a long process so I guess I will have plenty to do for quite some time and then maybe we will have to have another party when we succeed.