Now that it has finally warmed up and most of the snow is gone I have been sending the kids outside after school. Lauren and Hanna like to go for a walk. Well, actually Lauren takes her power chair and everyone else walks. Allen wanted to swing and Paul wanted to stay with Mom so Christine headed out with the girls.
It was Hanna`s turn to decide where they went so before they left I reminded her that they could not go over by her friend`s house. This friend (Miss Trouble) is one of those that gets Hanna in trouble every time they come in contact with one another. I said something to the effect that there is a road block on the road by her house and she should keep that in mind when deciding where to go so that she would not get herself into trouble.
They came back about forty-five minutes later and Hanna was fuming so I asked Lauren and Christine what had happened. They told me that they had walked on the sidewalk across the street from Miss Trouble`s house and then Christine reminded Hanna that they could not go over there so they went around the circle and went back the same way they had come from. Hanna then wanted to walk over there again so Christine decided that it would be a good idea to head home because she was getting worked up and whining because there was nothing on the road and they could walk over there for a little while.
Hanna was still stewing so I asked her what the problem was and she yelled at me "you lied to me there is no road block there". Well, no there was no physical road block there, but she needs to keep it in her head to stay away from there. When I explained this to her again she simply could not understand, or maybe she just did not want to.
Maybe next time I need to find the orange cones in the garage and put a road block there just for Hanna.
Thursday, March 31, 2011
Wednesday, March 30, 2011
A Day Of Appointments
I am going to get some chili in the crock pot this morning so that when everyone gets home dinner it will be ready to put on the table. Everyone might just starve if Mom does not plan ahead.
After that I am off to appointments with Lauren. She has her six month dentist appointment and then we have to check in with the neurologist, too. The dentist will be easy since I do not think that there are any issues there. The neurologist , well things are improving on that front as well, but we are still seeing times when there is seizure activity. I think this is going to be something to monitor forever, just one thing at a time.
I won`t get much of anything else done around here so tomorrow will have to be a day to catch up on all of the ordinary stuff. I just got a very large envelope of paperwork from Paul`s school to go through while the dryer is spins. Could life get any more boring then that?
Boring is better then chaos as far as I am concerned.
After that I am off to appointments with Lauren. She has her six month dentist appointment and then we have to check in with the neurologist, too. The dentist will be easy since I do not think that there are any issues there. The neurologist , well things are improving on that front as well, but we are still seeing times when there is seizure activity. I think this is going to be something to monitor forever, just one thing at a time.
I won`t get much of anything else done around here so tomorrow will have to be a day to catch up on all of the ordinary stuff. I just got a very large envelope of paperwork from Paul`s school to go through while the dryer is spins. Could life get any more boring then that?
Boring is better then chaos as far as I am concerned.
Tuesday, March 29, 2011
Adjustments
We have been making adjustments to Hanna`s meds for several weeks now and I think we are actually getting some where positive in the process. We have had only one minor losing her cool incident in the last seven days and that is a huge improvement from two or more mostly major such occurrences every single day. It is taking a cocktail of five different medications to manage her day. That sort of makes my head spin, because it is an awful lot of medication, but if it gives us some calm and keeps all of the rest of us from going crazy then we will go for it.
No, getting her behavior under control with medications does not change everything for us. We have a very long way to go in that department.
We have to have at least two adults in the vehicle whenever we take Hanna anywhere.
We have to lock our food, money, medications, phones, computers, toys, and anything else that may be valuable to anyone up.
We have to have an alarm system on to make sure she does not take off during the night.
We have to keep a very structured, routine, repetitious schedule for her.
No one in this family trusts her at all, and it is going to take an awful lot of time and work on her part before that can happen.
She still takes things without even thinking about what she is doing. She lies all the time, even about the most obvious stuff, like (did you make your bed, and I am looking right past her and see that the bed is not made). She tries to manipulate people and play one person off another.
Most important of all she still has an attachment disorder and likely always will. That has not changed one bit. No matter how stable she is she will always need a great deal of structure and supervision in order to be successful. When she does not have those supports in place to help her navigate a world that is very difficult for her she falls apart.
No, getting her behavior under control with medications does not change everything for us. We have a very long way to go in that department.
We have to have at least two adults in the vehicle whenever we take Hanna anywhere.
We have to lock our food, money, medications, phones, computers, toys, and anything else that may be valuable to anyone up.
We have to have an alarm system on to make sure she does not take off during the night.
We have to keep a very structured, routine, repetitious schedule for her.
No one in this family trusts her at all, and it is going to take an awful lot of time and work on her part before that can happen.
She still takes things without even thinking about what she is doing. She lies all the time, even about the most obvious stuff, like (did you make your bed, and I am looking right past her and see that the bed is not made). She tries to manipulate people and play one person off another.
Most important of all she still has an attachment disorder and likely always will. That has not changed one bit. No matter how stable she is she will always need a great deal of structure and supervision in order to be successful. When she does not have those supports in place to help her navigate a world that is very difficult for her she falls apart.
Friday, March 25, 2011
Cute
Paul has a new word "cute" mom is cute, dad is cute, the dog is cute,the chair is cute, and even the egg I gave him for breakfast this morning was cute. I am pretty sure he does not understand what the word cute means. I am also sure that someone at school has been telling him that he is cute. I will go along with that, he is a darn cute kid, but maybe, just maybe he should figure out what he is saying before he says it. One of these days Mr. Cute and inpulsive might just get clobbered for saying the wrong thing to the wrong person.
Wednesday, March 23, 2011
Can I Say This Enough
I just do not know if I can say this enough, if a kid who has experienced trauma is not ready to love or be loved you can not make them do it no matter what you do. There is not enough therapy in the world, not enough modifications made to the home and family, you can not give them enough "stuff", or care about their well being enough. You can not stop the manipulating, lying, stealing, hoarding, meltdowns, or any of the rest of their fake (the world is all about me ) behavior. Every member of the family will get trampled by this kid. It tares some families apart. For our family, the other nine of us have grown closer together. We want and need to be a united front, we want to celebrate life together, and yes, we really do love one another. You can love them, but they will not return it. you can provide for all of their physical needs and some of of what they want as well. You can not take their hurt away. That is something that they have to want to do for themselves. Then and only then, you can begin to work on the relationships of honesty, caring for themselves and others. and giving back to those who give so much of themselves for them. They will decide when they want to have a family and for many of them they will never choose to do so.
I wish there was a little bit of pixie dust to sprinkle and make things better, but I can`t do that. We as a family have done EVERYTHING for the kid. We will keep on doing what we have been doing and let the chips fall where they will. We are not going to take on the responsibilities of doing more because more is not better in this situation. If she is ever ready to risk being loved her family will be ready to give it to her.
I wish there was a little bit of pixie dust to sprinkle and make things better, but I can`t do that. We as a family have done EVERYTHING for the kid. We will keep on doing what we have been doing and let the chips fall where they will. We are not going to take on the responsibilities of doing more because more is not better in this situation. If she is ever ready to risk being loved her family will be ready to give it to her.
Tuesday, March 22, 2011
Keep It The Same
Yesterday morning I took Hanna to get cast forms made so that new orthotics can be made for her. She does not like the casting process at all. The wet slimy stuff. which has to stay on until it hardens feels weird to her and she repeats over and over again "done now, done now". They had two people making these things so they could do both feet at the same time so we only had to listen to her complain for about half an hour.
After the appointment I took her to school and she was not looking to happy when we got there. The teacher asked her what was wrong and she said that she did not like it that her schedule was messed up. It is hard to imagine that missing the beginning of the school day can be that difficult for this kid, but it is. She needs to learn that things are always changing and she is going to have to get used to that. Even in the most routine situations there will be changes. We can not keep things the same all of the time just because she likes it that way.
After the appointment I took her to school and she was not looking to happy when we got there. The teacher asked her what was wrong and she said that she did not like it that her schedule was messed up. It is hard to imagine that missing the beginning of the school day can be that difficult for this kid, but it is. She needs to learn that things are always changing and she is going to have to get used to that. Even in the most routine situations there will be changes. We can not keep things the same all of the time just because she likes it that way.
Monday, March 21, 2011
Yellow Boots
There is far to much going on here, but for the past couple of days anyway we have been soaking in spring time. We still have plenty of dirty snow and ice piles around and lots and lots of mud as the snow is melting quickly. The river is rising and soon roads will be closed so we will have to drive a long way to get any where.
It is international Down Syndrome day today and our DS boy could not be happier. He has on a pair of the girls flowered, yellow, rain boots and an orange and black plaid jacket. He has trudged through the mud to the swing set. He is swinging and singing to the entire neighborhood. You could spot that ear to ear grin anywhere and know that this kid is totally content with being who he is. Those yellow boots are flapping back and forth, back and forth. I don`t know which of us will draw the short straw and have to go retrieve him and get him to come in for dinner and a shower later. For now we will just let him enjoy swinging in the yellow boots.
It is international Down Syndrome day today and our DS boy could not be happier. He has on a pair of the girls flowered, yellow, rain boots and an orange and black plaid jacket. He has trudged through the mud to the swing set. He is swinging and singing to the entire neighborhood. You could spot that ear to ear grin anywhere and know that this kid is totally content with being who he is. Those yellow boots are flapping back and forth, back and forth. I don`t know which of us will draw the short straw and have to go retrieve him and get him to come in for dinner and a shower later. For now we will just let him enjoy swinging in the yellow boots.
Tuesday, March 15, 2011
No Quick Fixes
Since when is therapy, a new diet, behavior modification, more vitamins, more stuff, more love, or for that matter more or better of anything going to fix a person who has FASD and an attachment disorder. It just is not going to happen. That person is ALWAYS going to have FASD and an attachment disorder.
Yes, there is a time and a place for therapies of many kinds. They can and are helpful, but they do not take away the disability and they are not going to be the fix all.
Yes, eating in a healthy manner and taking the proper vitamins is helpful, but that is not going fix it either.
Yes, behavior modification does work to curb some behaviors, but it is not working at all with the two mentioned above.
As far as having more stuff, that is just craziness for a kid who is so wrapped up in having the stuff to hide the attachment issues behind. Stuff gives that person something to hide behind so they can ignore the issues they need to be dealing with.
Love, well this one makes me scream, ARE YOU OUT OF YOUR MIND!! If this family did not love this kid, do you really think we would do everything we do for her and put up with all the crazy we put up every single day? We are not doing this just for fun here, ya know.
Yes, we do want and need help here, but every time we get a plan in place, figure it out and make it work for our family it gets thrown out the window and we have to start all over again. Why is it that when something is working we have to take it away? FASD and attachment issues need to be managed for ALL of a lifetime. It is not going to go away and there comes a time when things are at a point when you just have to say, stop all of this, we do not need any of this, we have very capable, well trained staff, we do not want any more therapists, skills workers, or any one else in our home,just leave things the way they are and we will manage just fine. Do not tell us what our kid needs or that we do not love her, because you have no idea what you are talking about. We have seven other kids who we seem to love just fine.
Yeah, I am just a bit stressed this morning because here we go again, round number to high to count in the arena of craziness raising this kid. I will get myself together shortly, I hope.
Yes, there is a time and a place for therapies of many kinds. They can and are helpful, but they do not take away the disability and they are not going to be the fix all.
Yes, eating in a healthy manner and taking the proper vitamins is helpful, but that is not going fix it either.
Yes, behavior modification does work to curb some behaviors, but it is not working at all with the two mentioned above.
As far as having more stuff, that is just craziness for a kid who is so wrapped up in having the stuff to hide the attachment issues behind. Stuff gives that person something to hide behind so they can ignore the issues they need to be dealing with.
Love, well this one makes me scream, ARE YOU OUT OF YOUR MIND!! If this family did not love this kid, do you really think we would do everything we do for her and put up with all the crazy we put up every single day? We are not doing this just for fun here, ya know.
Yes, we do want and need help here, but every time we get a plan in place, figure it out and make it work for our family it gets thrown out the window and we have to start all over again. Why is it that when something is working we have to take it away? FASD and attachment issues need to be managed for ALL of a lifetime. It is not going to go away and there comes a time when things are at a point when you just have to say, stop all of this, we do not need any of this, we have very capable, well trained staff, we do not want any more therapists, skills workers, or any one else in our home,just leave things the way they are and we will manage just fine. Do not tell us what our kid needs or that we do not love her, because you have no idea what you are talking about. We have seven other kids who we seem to love just fine.
Yeah, I am just a bit stressed this morning because here we go again, round number to high to count in the arena of craziness raising this kid. I will get myself together shortly, I hope.
Thursday, March 10, 2011
Girls, Oh My
We have been conducting an experiment for the past few days. Lauren has been pouting, whining, not doing her school work, and just plain regressing in her behavior. She went on medication to try to control her seizures and about the same time we began to make her use her communication device every day all the time. this is because her ability to speak has declined considerably. At any rate we wanted to see if the behavior issues are a result of the medication she is taking or the fact that she has to use her device, which by the way she does not like to do at all. We had been told that the meds can make patients quite irritable and since they are helping to reduce the seizures we did not really want to take her off of them because seizures are not something that you want to leave uncontrolled if at all possible. We decided instead to take away the communication device. She just thinks that someone else at school needs to use it more then she does so she is not in on what is going on.
Guess what her behavior has dramatically improved with no issues either at home or at school the entire time we have been doing this. I am relieved that this has nothing to do with her medication. Now we have to work on an attitude adjustment which is going to take some time.
It has been more then a week now since Hanna threw everything out of her room and since I got tired of trying to get her to clean up the mess or cleaning it up myself I had her choose three outfits and confiscated all of the other stuff. Some of it was given to Lauren to wear since they wear the same size, some of it was given to a friend`s daughter, some was taken to the thrift store, and one basket was locked up so that she can earn it back if and when she chooses to. She does not seem to have any problem with wearing the same things over and over again. I heard a bit of talk about them going swimming for phy-ed soon so I wonder what kind of a scheme she is going to come up to deal with that? I did ask her about it and she said that she can just skip swimming (one of her favorite things to do). I told her that she would not get to take part in "fun Friday" if she did not swim and she said she would figure it out by her self. That Indicates to me that she is likely going to try to manipulate her way out of this mess. She has a swimsuit in the basket that she can earn back and we are not just going to feel sorry for her and give it back to her.
We have to be on the lookout for trouble ALL the time I guess. These girls are work I tell you. Lucky for me Lauren can usually get her act together and we can generally reason with her. Hanna, well she is just someone who does not get it and likely never will.
Guess what her behavior has dramatically improved with no issues either at home or at school the entire time we have been doing this. I am relieved that this has nothing to do with her medication. Now we have to work on an attitude adjustment which is going to take some time.
It has been more then a week now since Hanna threw everything out of her room and since I got tired of trying to get her to clean up the mess or cleaning it up myself I had her choose three outfits and confiscated all of the other stuff. Some of it was given to Lauren to wear since they wear the same size, some of it was given to a friend`s daughter, some was taken to the thrift store, and one basket was locked up so that she can earn it back if and when she chooses to. She does not seem to have any problem with wearing the same things over and over again. I heard a bit of talk about them going swimming for phy-ed soon so I wonder what kind of a scheme she is going to come up to deal with that? I did ask her about it and she said that she can just skip swimming (one of her favorite things to do). I told her that she would not get to take part in "fun Friday" if she did not swim and she said she would figure it out by her self. That Indicates to me that she is likely going to try to manipulate her way out of this mess. She has a swimsuit in the basket that she can earn back and we are not just going to feel sorry for her and give it back to her.
We have to be on the lookout for trouble ALL the time I guess. These girls are work I tell you. Lucky for me Lauren can usually get her act together and we can generally reason with her. Hanna, well she is just someone who does not get it and likely never will.
Sunday, March 6, 2011
A Sailor And A Soldier
It is official I am now the mom of both a sailor and a soldier.
Our Sailor, Rene` left home as a very young lady, she wouldn`t even be legally an adult for twenty more days. She was very organized as she still is. I guess you would want to be that type if you were going to live on a ship and have a space three feet by six feet in which you have to keep all of your personal belongings, uniforms, and then you have to sleep there too. She traveled around the world while deployed several times and while she was doing that we never knew where she was, how long she would be where ever it was that she was. or when she would be back on American soil. All the information we got was after the fact. We sent her care packages which we had to take extra care in packing because they would be dropped from a plane into the ocean and then retrieved and brought aboard the ship. She worked as an information tech (IT) and was very good at it.
Our sailor is now safely tucked away on the snow covered, soon to be flooded prairies of North Dakota where she is working on her maters degree in occupational therapy. If you ask her, she would tell you that being in the Navy was hard work, a eye opening, character building, life changing experience that she wouldn`t trade for anything. She had to make some hard choices when it came time to continue in the Navy or go to school.
Our Soldier, Jared did things quite the opposite. He worked, went to school, and worked some more and now at twenty-three he has gone off to the Army. Everything was last minute as he is not organized, neat, ant pulled together. Maybe he will learn some of that stuff along the way. We know where he is and will be able to communicate on a regular basis. He has living quarters that are actually room sized. He will be driving trucks loaded with who knows what. When he gets deployed we will know in advance where it is he is going and for about how long.
Being a military mom requires patience, more then I have some days, prayers, lots of them, hope for the future of the world, and an understanding that the people who commit to serving our country are strong, brave, caring, hard working, honest, intelligent,respectful, responsible people.
A Sailor and a Soldier are still my babies and my hero's, too!!
Friday, March 4, 2011
The Weather Report
I often relate Hanna`s behavior to the weather. It is either sunny,warm, calm, or more often then not we have tornadoes, blizzards, hurricanes, wind storms, and lots of rain too.
Since Tuesday afternoon it has been a good ole blizzard here. She spent thirty hours completely out of wackes melting down, trashing her room, destroying the alarm system, and slamming furniture into the wall, She threw EVERYTHING out of her room, so I claimed all of it except for three changes of clothes. She has not combed her hair for days and it looks like a regular birds nest, yet she claims that one of the paras at school says "it looks fine", if so someone needs to get their eyes examined. She missed school Wednesday, the day she trashed the place. She went to school yesterday and stewed all day. She had erased what I had written in her behavior notebook because she did not want anyone to know that she was in trouble, but the teacher noticed and so now she is in more trouble then she would have been if she had just left it the way it was. She then came home to pout, pinch and hit herself, and start the screaming nonstop until she got sent to her room because no one could put up with it any longer. She screamed in there until 10:40 pm. She had to be at school at 6:50 this morning to serve detention for skipping school which ticked her older sister off big time because that meant that she had to get up early to transport her. If there weren`t mountains of snow and ice everywhere I would have gotten up and walked her there myself, but I am in no mood to deal with the elements right now.
So where do we go from here? I don`t know, we will see how the detention and the speech about skipping school went. My guess is that she sat there and looked right past the teacher who drew the short straw and got to give that talk, as if she does not understand at all. We are working on medication changes, but this is not all about meds. It has a lot more to do with attachment and FASD and how to deal with that is a huge question mark.
By the way besides the Hanna blizzard we have had all week the weatherman is forecasting a real snow storm here next week. Please God, let there be school every day next week because Hanna will be with me on Monday for medical appointments and that is just about all I can handle of that kid for the time being, that is if we make it through the weekend first.
Since Tuesday afternoon it has been a good ole blizzard here. She spent thirty hours completely out of wackes melting down, trashing her room, destroying the alarm system, and slamming furniture into the wall, She threw EVERYTHING out of her room, so I claimed all of it except for three changes of clothes. She has not combed her hair for days and it looks like a regular birds nest, yet she claims that one of the paras at school says "it looks fine", if so someone needs to get their eyes examined. She missed school Wednesday, the day she trashed the place. She went to school yesterday and stewed all day. She had erased what I had written in her behavior notebook because she did not want anyone to know that she was in trouble, but the teacher noticed and so now she is in more trouble then she would have been if she had just left it the way it was. She then came home to pout, pinch and hit herself, and start the screaming nonstop until she got sent to her room because no one could put up with it any longer. She screamed in there until 10:40 pm. She had to be at school at 6:50 this morning to serve detention for skipping school which ticked her older sister off big time because that meant that she had to get up early to transport her. If there weren`t mountains of snow and ice everywhere I would have gotten up and walked her there myself, but I am in no mood to deal with the elements right now.
So where do we go from here? I don`t know, we will see how the detention and the speech about skipping school went. My guess is that she sat there and looked right past the teacher who drew the short straw and got to give that talk, as if she does not understand at all. We are working on medication changes, but this is not all about meds. It has a lot more to do with attachment and FASD and how to deal with that is a huge question mark.
By the way besides the Hanna blizzard we have had all week the weatherman is forecasting a real snow storm here next week. Please God, let there be school every day next week because Hanna will be with me on Monday for medical appointments and that is just about all I can handle of that kid for the time being, that is if we make it through the weekend first.
Wednesday, March 2, 2011
The Orthodontist Tells It Like It Is
Yesterday was a very long day around here. Lauren and Hanna had orthodontist appointments and we also had a lot of other stuff to deal with too.
Lauren was being a putts at school yesterday morning as she has been a lot of the time lately, but we are working on that situation which is not going to get resolved or resolve itself any time soon so that is just the way things are for now. She did fine at the orthodontist as usual. She never messes with her braces and except for being a careless brusher things are going well. She shocked everyone because she did not choose to have purple bands on this time and that is a first.
Hanna, has done everything she can think of to mess with her braces and the orthodontist, yesterday laid into her, very tactfully so mind you. I have given her this talk to many times to count already. She told Hanna that if she ever wanted to get her braces off she needed to stop tearing them apart and stop eating things like the Laffy TAffy she had stuck under her wire. The doctor said something about getting into things that did not belong to her and then Hanna lost it, completely.
She said that she had gotten into the stuff from Mom`s closet. Dad and I knew that she had climbed up the closet shelves and gotten into the Easter candy which was up there. We knew it was her because everything was open and ALL of the things which contain peanut butter were gone. They are her favorite things in the world. This is something that took quite a bit of work to get into because I have to get the kitchen stool in order to reach up there and she is shorter that I am. We had decided that we were not going to talk about all of this with her until later since we had enough going on at the time.
Well since she fessed up to the orthodontist we had to deal with this crisis. Since yesterday afternoon we have had a screaming, kicking, hitting, throwing everything, breaking the door, fit. She has not even calmed down enough to talk about it yet.
Just like every other time she will say that she won`t do it again and she really wants us to trust her and she really wants to be good and on and on and on. I am so tired of this speech of hers. It just makes me crazy. If you REALLY want to be trusted why on earth do you keep doing this stuff. It is not doing damage to us when you take our stuff because we will live without it and we will move on. It must be fun to hurt yourself or something, and that just boggles my mind that people will do this to themselves over and over again.
I am pretty sure the work they did in her mouth yesterday is already in a state of disrepair so we will be heading back to fix that shortly. Oh it is a pleasure to be Hanna`s Mom, on days like this I think that would be a huge, NOT!
Lauren was being a putts at school yesterday morning as she has been a lot of the time lately, but we are working on that situation which is not going to get resolved or resolve itself any time soon so that is just the way things are for now. She did fine at the orthodontist as usual. She never messes with her braces and except for being a careless brusher things are going well. She shocked everyone because she did not choose to have purple bands on this time and that is a first.
Hanna, has done everything she can think of to mess with her braces and the orthodontist, yesterday laid into her, very tactfully so mind you. I have given her this talk to many times to count already. She told Hanna that if she ever wanted to get her braces off she needed to stop tearing them apart and stop eating things like the Laffy TAffy she had stuck under her wire. The doctor said something about getting into things that did not belong to her and then Hanna lost it, completely.
She said that she had gotten into the stuff from Mom`s closet. Dad and I knew that she had climbed up the closet shelves and gotten into the Easter candy which was up there. We knew it was her because everything was open and ALL of the things which contain peanut butter were gone. They are her favorite things in the world. This is something that took quite a bit of work to get into because I have to get the kitchen stool in order to reach up there and she is shorter that I am. We had decided that we were not going to talk about all of this with her until later since we had enough going on at the time.
Well since she fessed up to the orthodontist we had to deal with this crisis. Since yesterday afternoon we have had a screaming, kicking, hitting, throwing everything, breaking the door, fit. She has not even calmed down enough to talk about it yet.
Just like every other time she will say that she won`t do it again and she really wants us to trust her and she really wants to be good and on and on and on. I am so tired of this speech of hers. It just makes me crazy. If you REALLY want to be trusted why on earth do you keep doing this stuff. It is not doing damage to us when you take our stuff because we will live without it and we will move on. It must be fun to hurt yourself or something, and that just boggles my mind that people will do this to themselves over and over again.
I am pretty sure the work they did in her mouth yesterday is already in a state of disrepair so we will be heading back to fix that shortly. Oh it is a pleasure to be Hanna`s Mom, on days like this I think that would be a huge, NOT!
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