Road Block

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.

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.

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.

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.

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.

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.

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.