Wedgie Free

I went underwear shopping for Lauren. She is very thin and weights ninety-eight pounds therefore she wears clothes in the 7-16 girls section,even though she is sixteen years old and certainly done growing. I am very thankful for the fact that she is so thin because hauling a stiff , uncooperative, CP body around is one thing but if that same body weighted twenty pounds more it would be a completely different thing altogether. Anyway I found the pretty, very girly, with flowers, lace, and cute little designs all over panties. One of the national name brands had printed in large lettering, on the front of the package "wedgie free guarantee". I think that Lauren with her lack of coordination, stiff fingers, and little resistance control can manage to give herself a wedgie with no problem and I am pretty sure that these panties will prove to be the same as all of the other ones she has had. I wonder if there is a money back guarantee that goes along with that statement here as well?

Paperwork

Paperwork is something that NEVER ends here. It is the end of the month so the bills have to get paid, then there is tax paperwork that finally went to the accountant yesterday, the profit and lose paperwork for Dad`s business needs to get done so we can pay some more taxes, and then there is the stuff that is always there to be done for the kids. I just figured out who is working when for the next month, however that may have to be changed depending on the outcome of two meetings that take place next week. I figured out payroll and got that ready to be signed and turned in.

I had to get all of this done this afternoon as Paul was gone to therapy therefore out of my office.

After I finished with all of that I looked at the schedule for the next three months and decided that I had better just take things one at a time otherwise I would be overloaded and nothing will get done.

To make my day even more fun Hanna has "girl issues" again, sigh. That means until about Wednesday I will have to try to get things done with her super nasty attitude in my face all of the time.

I am going to go help Karre make tarts for a birthday party she is going to. They are playing a mystery crime game where everyone dresses up as a character and they try to figure out who done it. The time period of the event is the 1920`s. It sounds like great fun four some sixteen and seventeen year old kids. Karre did some research and decided that tarts would be something served at a party during that time period so we make tarts.

PJ Day

It is PJ Day at Paul`s school. I do not find any issue with the idea of having that event when they are talking about bedtime in the classroom, but do they have to have it when it is -9 degrees outside?

I made Paul wear long johns under his pjs, but he was not happy at all with that idea. He does not understand why he is wearing two pair of clothes and he does not like the feel of it at all. The other thing he was all bonkers about is that I made him wear socks and shoes with his pjs and of course he never wears those things at bedtime.

Maybe they should learn about bedtime at the beginning of the school year when it is still usually warm outside.

Chilled Just A Bit

It is a little bit chilly here this morning, okay it is down right cold outside but the sun is shining and it will warm up in time. Two of my kids had chilly issues this morning as well.

Hanna ate a frozen croissant, yes it was really frozen, straight from the freezer. I have no idea why she did not put it in the microwave as she usually does. When I told her to stop eating that and warm it up she stuffed the whole thing in her mouth. Eating frozen croissants does a wonderful job of destroying the orthodontic work in the mouth, guess we will be making a trip to Gillette much sooner than I would like. Sometimes I think the mess in her brain rearranges itself every day.

When I took Paul out to wait for the bus he was trying to march on the ice. He fell down several times, he slipped and slid but kept right on trying, and then he says "this to hard for big boys I be little". I think he better just practice his marching in the gym at school until the ice is gone.

My Little Boy

Here is Paul talking to his new little buddy Baby Andrew. Andrew is our PCA Angie`s baby. He came into the world a little early and was tiny, but he is growing and Paul is still trying to figure him out. He is always telling him "it`s okay baby, don`t cry". and his way of saying he has had enough of the baby is "you go home with Angie, okay baby". I guess he still wants to be the baby around here..

Today when Dad came home from work Paul crashed into him asking if he wanted to play cars. Dad told him that he wanted to eat lunch and use the bathroom first.

Paul says "you a big boy daddy, you go potty, good boy now".

I guess I have given him the big boy potty talk enough if he is going to use it on his dad.

Awesome Kid

Yesterday I went and got groceries more then $500. worth so after spending all of that money and hauling all of that stuff around you would think that I would have everything here that I needed to spend the afternoon preparing meals to go into the freezer, not quite I forgot to buy corn.

After taking a really good look at my schedule for the next three months I decided that I had better get busy and get some meals prepared and in the freezer as things are going to get really busy. I was really on task and getting things done when I discovered that I did not have the corn for the hot dish I was making so I asked Karre to run to the store and get four cans of corn.

Karre being the awesome kid she is decided that she was going to take all four of her younger siblings along with her to the store. No one told her that she had to take any of them with her as she was not working and taking them along is a LOT of extra work.

She had to make sure that Allen and Paul had used the bathroom
get Hanna to put her shoes on the right feet
get shoes on both Allen and Paul
get leg braces and shoes on Lauren
get winter garb, coats, hats, and mittens on all four of them
get them all into the van seat belts, in car seats, and Lauren`s wheelchair
get them all out, take them into the store, load Paul into a cart, Allen pushes the cart, have Hanna hang onto cart so she does not steal anything and Lauren follows with her wheelchair.
get them all back into the van again
get wet shoes and winter garb off and hung up again

Then they all come traipsing into the kitchen Lauren, Allen, Hanna, and Paul each carrying one can of corn, and Karre says "I was not going to let them all have their own bags so I let them just carry the cans that way".

I had a good chuckle at that awesome Karre who took the time to make an adventure out of getting four cans of corn.

I Can Not Fix It

Hanna has done something that is socially not acceptable and then some kids were being rude and making fun of her for doing it, (of course they made sure there were no adults to catch the action). That is the way some kids are, they enjoy creating trouble whenever possible. Hanna has no boundaries and is not able to figure out the possible consequences of her actions until it is to late.

She is furious with Mom and Dad because those kids were mean to her. We were not there when this all took place and she certainly should be angry at those who hurt her feelings, but then again maybe it is better to take it out on us because she does not know when enough is enough.

This is an all to familiar situation with her and it is unfortunate that kids can be so cruel. There are also adults out there who will do the same things and because Hanna is different some of those people will always be out there to hurt her. Will she learn how to stop and think before she acts? Most likely not because she does not have that ability. This is why she always needs to have someone else to help her run her life, every single day of it.

I wish I could fix it so that she would not get hurt but I can`t do that so I will just have to let here scream at me for the rest of the evening. She will have forgotten all about this whole thing by morning, that is unless those kids bother her again, sigh.

It`s Busy

I have been hopping to keep up with the action here today. This morning I did laundry, nothing new there as I do that every single morning. I got half a dozen calls mostly from workers who are in the process of getting things organized for the kids. They needed price quotes to purchase Lauren`s communication and wheelchair equipment, they needed paperwork (lots of it) from my files so I copied papers for more then an hour, and they needed to schedule several meetings. That all being said and going well, in the process of getting all of this done, the referral for Paul either got lost in the shuffle or never got done so I had to get on that one. I think there might just be to much going on right now and I may have social services overload but when I have their attention I want to get things done.

Paul has been really, really busy today. He has a cardboard box that he insists is his car and he is pushing himself all over the house in the "car". While he is maneuvering himself from place to place he is crashing into everything and dumping everything out. Whenever I go some place to get away from him so that I can hear myself think while I am taking these phone calls he automatically shows up right under my feet. That "car" of his just has to go downstairs, and soon or it just may have an accident and wind up in the recycling.

Catching Up

It is amazing how far behind on laundry one gets when they go out of town for the weekend. I am catching up on that though. I have to take Hanna to the orthodontist this afternoon so the work day around home is quickly coming to an end. I will make a couple of phone calls that I need to make and then it is off the get the kid from school.

By the way my hockey team won 8-1 yahoo! My race car, the one that the people who think they know something about racing so they laugh at me for choosing this one, won the Daytona 500 this weekend too. Mom has some great luck going, I might want to play the lottery, not.

Making Babies

Hanna has been telling us for nearly two years that she is going to Wal-Mart to get husbands and babies and she is going to get many of both. We have been trying to get some sex education into her very concrete, not very intelligent, FAS brain for a long time now. We have resources that are geared toward teaching this stuff to people like Hanna but it is a very slow process and thus far she does not get it. One of her "friends" gave her the bit of information that if she has a baby then she does not have to live here. We immediately smashed that idea and we also informed her that if she had a baby we would be taking care of that baby because she can not. She was not very happy about this information and she pretty much tuned the conversation out after we clearly stated those facts. We want Paul to be our baby and will do everything within our power to make sure that happens!

This weekend Hanna told Rene` that people (yeah both girls and guys) can get babies in their tummies. We think she figured this out because one of our PCAs recently had a baby. Rene` being the curious big sister asked her how those babies got in the tummies and Hanna told her it was from eating cookies, so everyone out there who does not want to have a baby hold off on the cookies.

Later in the afternoon when we were eating some individually wrapped chocolate cookies that Trevor gave us Dad told Hanna that if she ate her cookies with the wrapper on them then she would not have babies because the wrapper would be protection from pregnancy. Needles to say Hanna has absolutely no idea what we are talking about here and I guess maybe she should just stick with her Wal-Mart plan at least for the time being.

Lets Just Keep Going

It is Friday afternoon and the work week will soon come to an end for some people who have been really getting things done for me the last couple of days. Right now I would like for the week to just continue since we are on such a roll and all of these things I have been working soooooo hard to get done for months and months now are magically getting there. I would like to see the day when all four of our special needs kids are in the right place, getting the right services, at the right time just once, okay I can dream can`t I? I am really, really happy with the work in progress and will stay the course to get some where near where I want to be.

Since it is Friday afternoon I am going to close up shop in the office, take a deep breath and relax for about five minutes and then I have to get moving on packing everyone up as we are headed to North Dakota (yeah it is even colder there) to spend the long weekend with Rene` and Trevor. While there we will watch my favorite hockey team, the University of North Dakota Fighting Sioux beat someone, I can`t remember who they are playing, order some pizza, go swimming, shopping (while Dad watches Nascar and supervises the non-shoppers), and have brunch some where before heading home. The cold won`t get in the way of some much needed family time.

I May Be Nuts But...

I may be nuts but after the Public Health Nurse got to listen to the monologue of what goes on around here and she get to watch Hanna go completely bonkers for nearly two hours yesterday the ball really must have gotten rolling in the offices of Public Health and Social Services because in less the twenty-four hours....

1. I have the funding to make repairs to one of Lauren`s wheelchairs. These repairs were requested in May 2009.
2. I have funding to pay for the software to run a communication device and to provide computer access from this communication device for Lauren. This process also began in May 2009.
3. They have already begun the paperwork to get services for Hanna and Allen. The usual wait time is to long to even think about.
4. Two more social workers and the PHN who was here yesterday are stepping in to help us fight a medical battle for Hanna. We began this process in earnest in March 2009.
5. I have someone trying to figure out how getting Lauren`s much needed orthodontic work is going to be paid for so that we can begin that work.

I guess in order to really get things done the Mom has to go nuts and the crazy kid going bonkers may have had its positives as well.

No Crying

There is a little boy in Paul`s preschool class who cries every day at school and on the bus. I am not sure what his disability is but he really has issues with the whole school thing. Paul talks about him almost every day. Today they are having a Valentines party in the classroom. They are playing games and making cards for military personal. I was talking to Paul about the day and I am certain that he does not understand what a party is but he does understand that this supposed to be a special day at school. When I put him on the bus he was chattering as usual and what he said to that little boy was a valentine treat for me.

"Don`t cry its okay to come to the heart party cuz you my friend, just don`t cry, okay, you can hold my backpack and have all the treats in there".

The little boy was holding Paul`s backpack and he was not crying when the bus left.

It Started Out Well

The day started out well but just as I was getting the snow boots on to retrieve Paul from the bus at 11:00am the phone was ringing. It was Hanna`s school, "girl issues" AGAIN, we just went through this less then two weeks ago, Hanna has only been in school two and a half hours this week, and there is no hope for the next two days, oh my goodness my headache is huge. They have a vacation day on Monday and then just to add to the fun she has an orthodontist appointment on Tuesday. Hanna is here going completely nuts while I and the Public Health Nurse are doing Paul`s PCA evaluation. The good thing about her going nuts is that someone who may be of some help with dealing with her behavior is getting to see it first hand so it is not just a crazy mom telling them that this is happening.

The results of that evaluation are that with the new rules Paul loses one and a half PCA hours a day and given his diagnosis we need to get the ball rolling to put him on waiver services. That means more paperwork, meetings, and of course a waiver spot needs to be found for him. I did not plan on doing this with a five year old, but here we are.

Meanwhile, since Hanna was demonstrating why we need ten hours a day of PCA service and because she does not have the diagnosis to get those hours we did a bit of brainstorming to figure out what to do with that situation. The options are very complicated and will require more paperwork, meetings, and a different waiver spot for her. This is much more urgent for resolution as her behavior is very stressful for everyone in the family and goodness knows what we will do without lots of help. Hanna is at high risk for out-of-home placement so someone had better start taking this situation seriously.

Then there is the matter of dealing with Allen`s needs as well, he is just hanging out there, sometimes I feel like we are putting so much time and effort into dealing with Hanna drama that he gets lost in the shuffle. We do get around to taking care of him as well. It is just nice to have a kid who takes things at a slower pace. That will be, yeah you guessed it more paperwork, meetings, and another waiver spot.

All of this is creating an overwhelming amount of work to be done. I am so thankful that I am able to stay home and do all of this stuff for these kids. If I had another job I would never be able to get this done. Before I can even begin to tackle all of this I have to deal with Hanna and all of her very nutty behavior.

On Schedule

Yesterday afternoon the sun came out so the kids and PCAs went sledding for almost two hours. That gave me time to make a couple of phone calls that I needed to make and get dinner figured out.

The sun is out again this morning and everyone else is off to school and work, oh yeah what a wonderful thing being on schedule! Usually I turn on some "Mom music" as the kids call it while I am working around here but this morning I just worked in the quiet. It was so nice to scrub the floor and be able to think at the same time without Paul chatter, Hanna loud, and Allen singing or is it talking, some sort of nonsense. They can not take turns so it is all going at once and it gets a little overwhelming at times.

This afternoon I have the first of four PCA re-evaluations to do with the county public health nurse. This ought to be interesting with the new rules in affect. I think that we are going to have to look at some long term options here especially for Hanna, who the rule changes will affect the most at this time. I am not even going to get into that matter today though as we are only dealing with Paul`s evaluation and I do not see much change there at least for the time being.

It Is Loud

Since 5:00 am when Hanna door alarm went off it has been LOUD here.. Shortly after that we got the automated message that told us there would be no school today, right then and there she blew up. She could not be quiet for another hour or more and let the rest of the noisy ones stay in bed. Karre is still in her room but I am sure she is not sleeping as that would be impossible.

They had all raced down here, were dressed, and had eaten breakfast before 6:30 am. and now Lauren and Paul are playing with some of Paul`s toys, Allen is hoping that I will turn the TV on soon, and Hanna is destroying something or other because she can not figure out what to do with free time. As soon as I get Karre moving she will get to find things for them to do as she wants to work today. At eleven Angie will come so between the three of us we will be able to divide and conquer them.

There is nothing is Hanna`s FAS brain that tells her how to think ahead or how to figure out what or how to do things. If someone is not right there telling her what to do and how to do it, all day long she just can not handle it. I have tried making lists with pictures of choices for her, I have tried verbally giving her two or three choices, and I have put things in a drawer for her to choose from but she just does not understand any of these. As long as someone is there kicking her in the behind with a new task for her as soon as she is finished with the one she is doing she can function without getting into to much trouble. I guess I had better go get her behind moving in the right direction before she implodes. Now how do you teach someone to chill for a little while?

Almost All Home

Everyone who is supposed to be home has gotten here safely except Jared who is working until about 3:30pm. I am not sure what he is up to but he is a big boy now and can figure that one out for himself. This mom still worries about them all the same.

The snowplow came by just as I was putting my boots on to meet the special education bus. Why couldn't`t they come by after the bus for once? The plowing dumped two feet of snow at the end of the driveway. Lauren`s power wheelchair got stuck in the middle of the street. I had to push and shove and do some snow kicking to maneuver it so that it would be parked behind our truck and out of the street. I then had to haul Lauren over the snow pile and get her into the house. Hauling someone who weights about a hundred pounds, is taller them me, and is stiff as a board is something I try to avoid doing alone but no one was here to help me so I didn`t have much of a choice about doing it.alone. Allen being the helpful sort came out with a shovel and started throwing snow on me and Lauren while I was hauling her through the snow. The more I told him to go away the more annoying he got. Then he went over and tried to push the wheelchair out of the snow pile. I told him that he was not getting that thing to move. Power wheelchairs and snow are not a good combination at all.

Karre had driven the mini van to school and after she picked Dad up from work she could not drive up the hill so they had to back down and go around the long way. They then got out the snow blower and cleared off the driveway enough to get the mini van in there and we shoveled Lauren`s chair out and got that into the garage. We are going to leave the rest of the snow clean up until some time tomorrow as it is not done snowing yet.

Will they have school tomorrow? I don`t have any idea but this morning was enough craziness for awhile.

Another Snow Day

Well we just got the call, they are coming home. There will be LOTS of drama around here, especially Hanna drama because there is just no explaining that when it snows to much there is no school.

Oh Maybe?

Well they are out the door, it is snowing, and oh, by the way maybe they will stay in school for the day, that is if the wind does not start to blow. It was snowing when we got up but now that everyone has gotten on the bus it is snowing with a bit more purpose. When looking at this winter at least all of the snow has been keeping everything looking nice and white out there.

I have a crock pot full of ham and bean soup going and will see what else I can get done before they got home. I told Karre and Lauren that if they stayed in school long enough I might have time to make some chocolate chip cookies today. Karre told me that she could handle staying in school for some cookies.

Chatter

It has been one of those non-stop chatter mornings, oh well they are all like that with Paul around. This morning it was getting to me after awhile though.

"Mom can Mickey Mouse dance with you"

"No I am trying to do laundry, I am trying to sweep, I am trying to cook lunch, etc, etc".

"Can I have bites, songs now, watch Elmo now, when is Angie coming, go to play with Katie, eat now, eat now, eat now, and on and on, and on.

All the while he is chattering he is banging doors, opening and closing drawers, unloading the fridge, dumping the Tupperware out, throwing toys, books, and shoes, and eventually he had pulled everything off the table. He is "hugging" me that is trying to choke me while jumping up and down on my feet, pinching me, and trying to climb up my leg.

We have always had this type of very hyper behavior but since he has been off Trileptal (a seizure medication), which we were told can have the side affect of slowing them down, the activity level has really increased a lot. I think we will be looking at another medication soon to slow him back down. School thinks he is doing fine, but being very busy in preschool is okay, now when the expectations will change as he gets older and he will need to slow down.

Now Angie has come to the rescue so I had better get something done while I have the chance. Are you ready for some Paul action Angie?

Fathers Day Cheeseburgers

Lauren had an assignment to tell what her favorite holiday is, how our family celebrates it, and what they eat on the holiday. Lauren chooses Fathers Day, now given all of the choices that she could have made she chooses this one. When asked why she explained that we could go out to eat at Perkins and she could have a cheeseburger and french fries. Now she is really thinking about her dad with this idea isn`t she. Dad would rather grill something and go to the lake to celebrate the day. When I told her that we would most likely go to the lake and grill she said that maybe we could stop at Perkins for a cheeseburger and fries on the way home. She is going to get that cheeseburger one way or another.

The other part of the assignment is to bring a recipe for one of the foods you would eat on your favorite holiday. Now I guess I have to help her put in writing how you would make those cheeseburgers.

These kids are certainly original aren`t they.

One Of A Kind

I am talking about that kid again, yeah the one who seems to get the most blog time lately, but this to varying degrees applies to all four of the kids with special needs.

Yesterday after school Lauren was doing her homework and since Hanna was doing nothing except chewing up her blanket I told her to join us. I then asked her to spell three words airplane, puppy, and house. These are words that she had gotten correct on her spelling tests recently so I figured she knew them and we could use them to write some sentences. She did not have a clue as to how any of the three words is spelled. The question then becomes has she really learned anything in school, is she gaining knowledge that can help her to function in society, and since she really does not know how to spell these words why is she being given credit for that skill? I also asked her to write me a sentence and she gave me that look, the one that says "I have no idea what you are talking about",(yet she can write sentences at school), and finally I asked her to write down any five words that she thought she could spell. She came up with four that she did spell correctly (a, cat, Hanna, and boy). Since we were not getting very far in the English, spelling area I decided to work of measuring. I got out a ruler and showed her several times how to measure six inches and then I asked her to measure six inches of string for me, she unraveled about five feet of string and told me it was right.

The point of this is that if the kid really has not mastered the skill they should not be given credit for having the ability to do it. It will do no good in the long run to give the impression that Hanna can do things that she can`t. What this does is set the bar beyond her ability. Now for those who say you need to be positive, give her hope, and everyone is a winner, lets just say that there is a reality here and she needs to live within that reality. She has abilities that are positive, She is a very hard worker, she is comfortable with tasks that require a great deal of repetition, and she can stay on a task until it is complete. Those are skills that not everyone has. I think I would go completely nuts if I did the same things every single day. It you let her do the things she does well at her level she will be able to function better because she will not be fighting a losing battle trying to keep up when she can`t. I am not saying that we should not have her try new things just get real about how well she does them because this mom will figure it out when that is not happening and I am not about to give her the impression that she is really great at things if she is not. I will give her credit for trying when she has given something her best effort, but I think that she figures things out and knows when she does not understand. She must feel really frustrated when she does not understand and people are giving the impression that she does. Hanna, just like everyone else is one of a kind and lets just let it be that way.

Quiet

It is finally quiet here, everyone including Hanna is off doing what they are supposed to be doing on a Monday morning and for a couple of hours, until Paul gets back from preschool it is quiet. I will enjoy every minute of it. I am even putting off the three phone calls I need to make until later. Now I had better get busy and get something done before the noise returns.