I went ahead and published yesterday. I decided to start again fresh as I would have probably deleted the whole thing when I got home. And, I did see that the picture I used was the same as the last one I had used. I am guessing that is going to happen a lot as I don't remember what pictures I have posted and which ones I have not, so I will just look for a good one and use it each time. Assuming that I am going to continue this. I am still having the same formatting issues but I will ignore them.A lot has happened in the past year. Too much to go into and too much to really be in this blog. If you read the previous issues, you can see the tragedies that have occurred recently but this has been an ongoing issue for some time. What with health and financial and school and all the other things that go with life, it just seems we have been in a very rough spot for a long time and I am not sure how we get out of it. I am hoping for big changes but we are still talking about it and I don't want to put it in here and then not go through with it. Plus, if it does not happen, I will probably not continue this for a long time again. So, lets hope for the best.
I keep having to walk away, work again, so this might seem incoherent at times. I am not sure where or what I will go into but I'll try to get some interesting things in here. Mostly, this is just to try to get me started doing this again, so no matter what I type, at least I have made and entry. Fun for me, maybe not for you. But since when do I care about that.
I want to say, and I don't think I have ever said this in here, but since this is supposed to be to and for the kids, I will say it now and try to continue to say it. This sounds like something every father, mother or parent will always say and I know it is true for all, but for me, Maeghan and William, you are my life. You are everything I have ever wanted and everything I will ever need. I love you both.
Now that the sappy parts are out of the way, I can relate how crazy and weird you both are. For some reason, Maeghan seems to think I am weird. I don't know where she gets that from. She tells me I'm weird all the time. She even has her mother telling me I am weird. I think it reflects more on them than on me because I am just trying to keep them entertained. Since they have seen all my routines many times, I have to keep coming up with new things to do to make them appreciate what it is to be around me. I have to let them know that I am trying to have a good time and they should to. But, they just think I am weird. Guess it is something I have to live with.
William says they are all crazy and he is the only sane one in the family. I wouldn't call William funny, but he does try to keep you entertained. He is more the loving type than the do something silly type. Not that he doesn't do silly things, he just does them without meaning to. One thing you have to know about William that I have not mentioned. William is really tall. He has been for a while but he keeps getting taller. He is 13 years old and he is taller than me. I am 6'1", he is taller, by almost an inch now and still growing. I mention it because it makes him fairly awkward most of the time. He has never been an athletic type, my fault mostly, but with his height and his skinny-ness, he is kind of gangly. I have never used the word gangly so I am hoping I spelled it right and used it correctly.
Since William is more affectionate than most, his coming up to hug you is kind of intimidating at time, especially since he does it to everyone. Everyone seems to used to it now, but anyone new or anyone who hasn't had him do this to them appear to be very uncomfortable when he does it. William is on the autism scale, I have no idea what that is, but a lot of his behavior is blamed on that. I kind of scoff at that but the more he does it and the more he does some of the things he does, maybe he does have a problem. The doctors tell us he does but I think he takes advantage of it a lot and I don't really encourage him or his mother making that an excuse. He is still loud and insistent and opinionated so being affectionate and loving along with it is a real contract in dealing with him at times.
I have said or noticed that he laughs a lot more. I never used to notice him smiling or laughing a lot before but he does have that side of him. Not that he thinks anything I do is funny but I do see him smile when it happens. Mostly, he tries to imitate me and that does not go over well with anyone. He doesn't understand why. Mostly, because he thinks doing the same thing is what is funny and really, my humor is more situational than what I am actually saying or doing. So he does it at the wrong time and he doesn't get any appreciation for it. He can have his moments though. And he covers it all with giving you a hug and telling you he loves you. Doesn't really work but he tries.
Maeghan finally got her electric wheelchair a few months ago. A huge monstrosity of a thing that is fully mobile in that it can spin in a circle, raise up and down, and go really fast. It weighs about 1000 pounds. You cannot lift it. It requires ramps to get it in and out of the van and it requires a van to haul it around. It was supposed to be left at school so she could use it there but after arranging all that, we did not like where they were going to store it so he brings it to school and home again each day. Luckily, the bus she takes to school has a lift in it but the one in the afternoon doesn't leave school until an hour and a half after her last class so Juanita picks her up.
She had been waiting for this thing for over a year. Very long story about the incompetence of one of the 'new' government departments that was created to handle these types of things. I would go into it but I don't feel like it right now. I have heard good things about this agency, but mostly really bad things about them. One agency to handle all things that are related to people with disabilities. A good idea on paper but in practice, they are backed up for a couple of years and people never really get what they need or want. It just doesn't work. And I will tell you the biggest kicker about this whole thing, the cost of this wheelchair. Get ready for it. You're not ready for it. I'll tell you anyway and you are going to say no-way, but I assure you it is true.
It cost $27000. And yes, that decimal point is in the right place. Twenty-seven thousands dollars. For a wheelchair. The only good thing about that is we did not have to pay for it. It comes out of her 'budget'. They do an evaluation on her needs, set a budget for her and then take the money out of that for anything she needs. But there are two parts to it. Way too much to explain, but there are needs and there are expenses. This one came out of needs, so it is basically an unlimited supply. Expenses is another matter and we are dealing with that on an ongoing basis. Since it is so unlimited, they ordered the top of the line everything, for a wheelchair that she does not need all the time. There are really only occasions when she needs it, like getting from one class to another on the school campus, which is located on several hills so she has to walk up and down all the time. The wheelchair is good for that. Other times, it is just for when we go places, like the mall or something, where a lot of walking is necessary. We take it with us but not all the time and since it is so hard to get in and out of the van, we use Juanita's van when we want to take it because it is too much trouble to transfer it over to mine. But I hate using Juanita's van so it gets left behind mostly.
So, $27000 for this thing. They could have bought a new car for that, and she needs a new car. That's another story. She can't drive a 'normal' car. She needs special hand controls for any car she drives because she cannot reach the pedals. I have volunteered my old small car for this but now they are telling us it is too old and they will not do the modifications to it. They keep waffling back and forth about it, sometimes saying yes, sometimes saying no but I am guessing in the end, it will be no because the car is ten years old. There is nothing wrong with it, it only has about 50000 miles on it, because I never use it, so it is all working ok. It is just old and they do not want to make changes to a car that might fall apart at any given moment. I can understand that.
So you might say, but they spent $27000 on a wheelchair, why can't they buy a cheap small car for less than that and make it work. That is where the two different budgets come in. She needs the wheelchair, the car is an expense and that money is limited. The theory being, she can take the bus and does not need a car. But this is Tasmania and the bus service around here is good but not as good as it is in other places. Buses are ok but the ones she needs, that have a lift, don't really run at the times she would need them and it takes a couple of different buses to go across town so it is not very convenient for her unless she has help. And that is another thing. They do provide help, but again, that is also limited. She has a lady come in once a week for three hours just to see what she can do to help. Normally, there is nothing to do but she shows up anyway because it is paid for. If she had to get someone to help her when she rides the bus, that would be way too complicated to work out when, where and for how long but apparently, we are supposed to figure this out and ask for it. It's just all a big mess and I am tired of talking about it.
I think this entry is long enough. Things have calmed down at work so I have been able to do this with minimal interruption but I should probable do some other things now. Hopefully, I will continue to make entries into this. A lot of time has gone by and there are a lot of stories to tell so it would be a good idea for me to get back to this more often. We will see.
Until next time
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