Field Trips ARGH!

This week is just crazy with field trips and special activities coming up. These kinds of things make me crazy because my kids are not great field trip material.

Lauren and Allen are supposed to be going to an apple orchard to pick apples, check out the other activities that they have on an apple farm, and eat lunch . This trip is one that I am okay with as they get experience in the community where they can practice appropriate behavior. They also get to practice their eating out skills by ordering the food and paying their own bill. The problem here is that there is a very good chance that it is going to rain and then they will not be going. When schedules change it creates lots of issues when the kids are not able to change as well.

Hanna`s school, yes all of the fourth, fifth, and sixth grades are going to an all day event at the college here in town. They will learn math and science. This is going to be taught by college students, the kids will be supervised by the school paraprofessionals while their teachers go to a training themselves. This is a disaster in the making! The material being covered in geared towards kids far above anything that Hanna is able to understand. It is being taught by college students who have no clue that Hanna does not understand anything they are talking about. The most scary thing about this is that the kids are all being supervised by the paraprofessionals who are hired to help the kids with special needs. How are they going to be able to do their regular job as well as something that they are not trained to do? They Will be talking about this at school tomorrow so of course Hanna will know that they are going so if I her Dad and I decide that this will not work for her we will be the bad guys once again. I am not at all excited about spending the day with her here madder then a wet hen (of course Dad will be at work) but on the other hand I do not think that she can handle the situation that she would be put in if she were allowed to go. We will think on this one for one more day.

The junior and senior high are doing some homecoming activities on Friday. Allen will get to go to the movies which he will do fine with, just give him a bag of popcorn and a seat. Lauren will get to sit at school since her behavior has been pretty awful this week. I hope she does not pout to loudly.

I think I have had enough of this fun stuff for awhile, lets just do some school work in the classroom for a few days.

It`s Tuesday Again

Today I have to get as much of the laundry hung on the line as I can since the weather sounds like rain for a few days ahead. I like to keep that mountain of dirty clothes as small as possible. Then I need to feed Paul something for lunch and hand him over to a PCA for a few hours. Jared and I will pick Lauren up from school early this afternoon. Jared will go by his school to pick up his graduation things while I take Lauren to speech therapy. We are still working on communication devices. Then we will come home in time to quickly get some sort of hot dish into the oven for the gang. Finally Jared and I are going to the swim meet. He made a cake for the team. (This idea he thought up all on his own, I did not volunteer him).

That pretty much covers another Tuesday here. Hanna has had it stuck in her head that it is Tuesday everyday now for years. No one has been able to get any other days into her little brain. It seems that Tuesdays have been really busy lately. Maybe some of that chaos that Hanna so much craves is here to stay.

Military Mom Rant

In being the mom of eight ranging in age from four to twenty-four there are many roles to take on. One of them is being a military mom. Rene` enlisted in the United States Navy in August of 2003. She served four years active duty, most of that time out to sea or in places around the world where you really do not want to find yourself if you are an American. Since then she has been on reserve duty. I am not sure what she plans on doing when her tour of duty is up. It does not matter she is and has served this country well.

In a local news paper this week there is a complete section devoted to the local football team. They all have there pictures individually in there with information about themselves and the team. Why this paper does not devote this special treatment to all of the school teams including swimming, tennis, golf, etc, etc is beyond me. I have nothing against participation in such activities. My kids are in sports and I think it is good for them, but because they do not play football they are not treated as some sort of local heroes here. This football team is not special by any means, they have had losing seasons for many years. If there families had paid to have this section of the paper produced I would have no complaint, but they do not pay for this at all.

If I have not lost you yet and you are wondering how this football thing is related in any way to the military, well I will fill you in. In the mail the same day as the news paper arrived we go a letter from that same paper telling us that if we wanted to honor "our" veterans this November we could fill out the information, send them a photo, and pay $$$ to do so. Why should military families have to pay to honor Americas veterans??? Should not all Americans be honoring them since they are out there providing protection for all of us. There service is allowing ALL of us to live in this wonderful country with all of its freedoms and abundances. We sacrifice enough having our loved ones away and in danger as it is.

The priorities here are just a little bit messed up.

Picking Apples

Angie one of our PCA`s and Lauren made a pretty good apple picking team.

Paul the ever helpful guy finally got some apples down at his level. He wanted to bring all of them home.
Now here is a real professional apple picker, just let everyone else do the work while you relax in the chair, way to go Allen.

Out The Door

It`s raining, yippie, but not today of all days. I will be running until far past my bedtime tonight.

I need to quickly get Paul dressed and organized to spend the day with a PCA who will keep him safe and get him to therapy. Got your running shoes on Angie?

Then I have to take Lauren to Gillette for two appointments. First she has a dentist appointment there which will be easy. After that we meet with her team to re evaluate the therapy situation given the position the insurance people are taking,. We need to decide what to do next. I am learning some really good negotiating skills in this process.

As soon as I can get of those appointments I am headed to the fifth annual Pregnant Pause to help get the message out and bring healthy babies into the world.

After that I may get to visit for a few minutes with some of the people who have worked so hard on this event over the years. We really do have a great time doing it you know.

Deep breath.........and I am off.

Seeking Balance

The lady who will walk around the block with our mentally disabled son just because he is a willing walker and even though he chatters all the way,and she most likely can not understand a word he is saying is a gem.

The high school senior who when invited by a boy with multiple disabilities to go to the prom accepted and shared a memorable wonderful evening with him is amazing.

The couple who can patiently wait in line at the store behind us while our girls struggle to get their money out of their wallets, hand it one bill at a time to the cashier, slowly put the change back into the wallets and stand there wondering what to do with the receipt, and then have to take the coloring books out of the bag to inspect them just one last time are so appreciated. To top it off they congratulated the girls on doing a great job of paying by themselves.

Believe me living in the world of disabilities these things do not happen every day. There are so many examples of how normal people treat people with disabilities in such ugly ways out there. In reality I think there is just as much good as bad going on so they balance one another out pretty. well. It is that society has unwritten rules of what is normal and what is not. When you think about it what is normal anyway? The girl who never outgrows her dolls is thought to be abnormal, yet there are many women who collect dolls all of their lives. The difference might well be that one will carry hers along to the grocery store and sleep with it while the other keeps hers neatly stored away at home. The guy who has no arms would find it normal to use his feet when eating, and the people who can not hear may use sign language to communicate and consider that normal. It all depends on where we are as individuals. The disabled person is always trying to figure out how to fit into society and its normal and at the same time society is learning to accept the differences.

In order for society to grow more accepting of the disabled they need to be around them. The best way for the disabled person to be accepted by society is for them to live their lives out there in the community. If the disabled people are comfortable with who they are, feel good about themselves then that will be reflected in their behavior. Lets just say this for the disabled people, life just is not fair so get over it and move on. By that I mean there is always someone who has things better then you do and that is okay. This is true for those normal people, too. If you can be happy with who you are then there will be people in your life who will figure that out and they will then accept you for being you.

As a disabled person, whether you like it or not you will be educating society about your disability forever. That is okay, I would rather have someone be curious and ask their questions then for them to be talking behind my back not having a clue as to what is really going on. Being honest and open about the disability may make things easier for some other people with disabilities in the future. When I was out at a restaurant for lunch with a good friend who happens to be blind and have a maters degree in biochemistry we taught a waitress a valuable lesson. She came to take our order, I told her what I had selected, then she asked me what my friend would like to have. I told her that I thought someone with a maters degree in biochemistry could relay that information for herself. Just because she can not see does not indicate in any way that she is not intelligent. Given the response of the waitress I am sure that she will not do that again. There is no need to go out of your way to educate just do it when the opportunity arises.

Thee is a place for awareness of disabilities in the community. The bullying issue and mental health issue are two that come to mind here. Making people aware that there are people out here living with these issues every day can only be a benefit. That being said only those who are willing learners,who are open to different ideas, will use the new information in their lives. You can teach a kid how to put mittens on their hands to keep warm in the winter, but if they choose not to wear them there is not much you can do about it. They will keep them on when they are ready to.

It is a given that there are some people who can not cope with people with disabilities. Maybe they see themselves as the person with the disability, and it scares the heck out of them so their means of coping is to run away from the experience. That is just to bad for them because they are missing out on knowing some very unique, fun, creative, wonderful people.

Some of you writer types out there may have been able to make the points I am trying to make in a much clearer form, but here it is as I see it. We are seeking balance between what society finds to be normal and how people with disabilities can fit into that normal. We do not have a balance yet. Will there ever be one, not likely because things are always changing, but we can keep on trying, can`t we?

Good Ole Charlie Brown

I feel like Charlie Brown when he runs up to kick the football, Lucy pulls it away at the last second, and then he tumbles head over heels, landing flat on his back looking up into the heavens. I do not know what he is thinking when he is laying on the ground like that, but I am praying to God to give me an extra does of patience, stamina and the will power to move forward.

Today in the mail box I found the notice from the insurance people that told us that the twelve week physical therapy program, which they had given authorization for is no longer approved. Lauren has already completed five weeks of this and since they gave the approval before she began why stop in the middle of what we are doing?

Lauren has Spastic Quadriplegic Cerebral Palsy due to a severe traumatic brain injury which she received as an infant while in the care of her birth family.The spastic part of it is what we are dealing with here, Her muscles become tight, rigid, and fixed when they can not move properly so basically she would become very deformed if she does not receive consistent care and therapy with this. She has also acquired scoliosis as a part of the CP and this is getting worse over time. The physicians working on her team have come up with a complex set of therapies and treatments to keep this in check. It she does not continue on course here we are looking at a major back surgery or two, twelve to fifteen weeks in a body cast, and then a ton of therapy to follow.

The surgery route may or may not need to be taken with the therapy but as Lauren`s mom I would much rather deal with therapy and a short visit to the operating room for routine Botox and Phenol injections every few months then sit in the hospital for two to three weeks and deal with a whiny kid in a body cast. I have already done that once and if I never have to experience that again it would be just fine with me.

Lauren thinks this is really great because she does not have to go to therapy now, but she has no idea what she could be in for . The insurance people think they have saved themselves some money, but the cost of Lauren`s care will be much greater doing this the way they want to do it.

Since when do insurance people know more about complex medical conditions then the highly trained group of specialists who have been working with this kid for more then nine years? What are these physicians going to think when they find out what is going on? Do any of those insurance people plan on sitting with this kid while we do this the hard way? I hardly think so and as a matter of fact I really do not want to do that either, but since I am her mom I will do it if I have too.

Just like Charlie Brown I am flat on my back trying to regroup, but I will be ready to go toe-to-toe with those insurance people once again tomorrow. This will be round far to many to count with no end in sight for me.