update on hurricane

They have actually evacuated the buildings across the street from me.  The apartments across the street are much closer to the river.  I have not been ordered to evacuate.  We seem to have a new thing popping up.  Pet friendly shelters.  I LOVE this idea.  I think we learned a lot from Hurricane Katrina.  After that hurricane several pets had lost their homes and gotten separated from their owners.  Some were adopted by other people.  I am sure some had to be euthanized.  It probably cost more to find, hold and care for those pets than it does to have a pet friendly shelter.  I will stay here with my four legged children unless the evacuation becomes mandatory.  I hope that my cats will try to stay indoors.   They can sometimes act really weird during bad storms. 

I am worried about this storm.  Too many people are too alarmed.  I feel as prepared as I am going to get though I wish I had a radio.  Good luck to everyone.  Stay safe and work together.  Hope for the best, expect the worst.   Have a good day.

I am asking for a change.

We have a hurricane coming.  I hate this type of weather.  My life and my home is based on electronics working.  If my electronics do not work,  I am basically screwed.  I have no way to get to a shelter.  I also hate to leave the 4 legged children.  I do have peanut butter and some other food to eat in the event that I am unable to cook.  I may be without computer access for several days so If you do not hear from me for three or so days do not panic I am OK. After 5 days if I have not posted a blog contact theEpilepsy Association of the Eastern Shore.  They can tell anyone if I am OK or check on me if I cannot be reached.  We should do what they do in the Carribean.  In St Croix they have hurricane prayers.  Obviously the Caribbean Islands get hurricanes all the time.  Sometimes the prayers work, sometimes not but it can't hurt.

Emergency or disaster relief is a big deal for anyone but it's huge for some people with disabilities.  Everybody really does need to have a disaster kit.  The kit should contain water, food that does not need to be cooked, basic first aid stuff, and medicine you need at the least.  After that I would recommend flashlights and batteries, a pillow and blanket and anything you need to keep you entertained. Preferably not games that need charging or electricity.  If you need to evacuate please know pets cannot be taken to shelters with you.  If you need to leave your home leave enough food and water for a few days.  Tell someone that you trust know your leaving.  If you have a friend or family member that is able to, have them stop by your home and refill food containers.  Canned tuna or chicken can be used to feed cats and dogs if you run out of pet food.  (Just make sure you have enough for yourself)  Know that you will be uncomfortable for a few days or so but it will pass. 

I would be better off if I had a generator.  I really would like one but you can see that the price is a hefty one.  I sure hope the storm changes course. 

On a good note,  I am getting more enquiries about AVON.  I hope they lead to sales. Start the hurricane prayer.  Be careful and take care.

Long Frustrating day

I had a bad day today.  I had a Doc appointment at 12 noon.  I like my Doc.  He is young and cute and seems to know his stuff.  But I got there about 20 minutes early,  and waited and waited.  I hate waiting I am not good at it.  I had my care provider's company thank goodness. I was  brought back right at noon and given a temperature and blood pressure check.  Then I had to go back to the waiting room because no room was available.  I waited about an hour!  My transport home had come and gone.  I did talk to her and tell her this office was extremely busy.  Medical runs usually do take a lot of time.  There are often missed trips partly because of poor planning and partly because of too busy clinics and doctor's offices.  Knowing that my transport had left and will need to come back shoots my anxiety level way up.  This does not do my blood pressure well.  The house mess and all the other financial worries don't help either.  After another 15-20 minutes I was called back to see the doc.  My blood pressure was up.  With all my worries and a genetic component for high blood pressure, it does not surprise me that medication might be in order.  I also got new asthma meds (the other ones did not work)  We talked about getting some weights or a medicine ball for some exercise.  I hate having flabby arms.  And the diet issue came up though I think I am doing better.  With the care provider here there is much less fast food in the house.

Then I got home. (thanks to a transit driver who understood how busy it was and worked to fit me in)  I spent several hours on the phone trying to get information on the house mess and any utility help and got nothing.  Wait and call back next week.  Make sure that you give everyone the time to do what they need to do.  I get it I do.  There are thousands of people in the same boat I am.  All this takes time.  So I hurried, hurried, hurried to get paperwork in.  Now what do I do?  I wait.  Remember, I hate waiting.  It makes me anxious. There goes my blood pressure! 

When I got home from the doc, there were 2 boxes from Avon.  One was your basic Avon welcome kit and stuff that I ordered from my last order and one was a box of Avon books.  I am up to my ears in AVON!  If you know anyone who wants a catalog, post a comment or email me.  I mean it.  anyone HELP!

Not what I thought

Hit a homerun with your next site visit: contacting federal legislators during a congressional recess can be easy and successful with the right approach.(Advocacy ... Update): An article from: Parks & Recreation

Today's boring board meeting was not what I thought It would be.  I figured most people would still be reeling from the last round of budget cuts.  The report from the head of transit was that people seemed to understand why this happened and there was not a lot of decent once the process was explained and the options were explained.  In the end one of the routes was cut and another bus will cover that route plus the route it does.  Everyone agreed it was the best decision that could be made.  What really got the discussion going was the fact that transit covers 3 counties.  Yet not everyone helps shore transit.  They also talked about the fact that the services that are being cut help the poorest people out.  If you have money and a car there is no need for people to take the bus so why be concerned?  Several of the board members said that they have tried talking to government officials.  It seems that they don't listen.

This is where I got to speak.  From an advocacy point of view if you just work for transit and don't take the bus, you are only promoting yourself.  If you want the officials to see how much the buses are needed they have to hear from the people who ride them.  Ask the people who ride to tell you why they ride transit.  Believe it or not personal stories carry a lot of weight.  So write and phone your elected officials when you have these issues.  Things won't magically be made better.  You may not get everything you want.  Those elected officials are there to serve the needs of the community.  They may need to be educated about what those needs are.  Here are some tips.

• Stick to one topic.  If it is transit stick to transit.  Don't talk about all your problems
• Get right to the point.  In letters and phone calls or meetings whatever flowery greetings and a lot of small talk waste time.
• Be friendly even with people who may disagree with you.  You are only stating your issue not starting an argument.
• Be prepared to provide proof of your situation.  Sometimes it helps to show everything that has been done on your own.  You shouldn't be asking for a lot if you haven't tried programs that are already out there.
• Make sure to give the officials time.  Even local government officials have a lot on their plate.  They hear from a lot of people.  
• Keep talking.  If at first you don't succeed try try again.  Old politicians retire or get voted out.  There is always a new ear or another way to say it.

ACT UP and Speak up!  It's your life!    The transit people thought it was a good idea to get the riders involved.  I may have actually helped.  Gosh it made me feel good.

On a good note I may also have gotten a new Avon customer!!  Yea for pocket money!  Take care.

AVON

I had a better day today

Thank goodness for old movies on Turner Classic Movies.  It is Cary Grant day today.  I am a big fan of Cary Grant though Jimmy Stewart is my all time favorite.  It really does stop me from being sad to see North by Northwest or The Philadelphia Story for the 50th or 100th time.  I can recite most of the lines and remeber almost every scene in these movies.  Watching these movies is like talking to an old friend and having real fond memories.  Another favorite I hope to see before the Cary Grant day is out is Father Goose. When I get out of my chair tonight I will see if it is on the schedule.  Most of today has been boring.  Even the four legged children are acting up cause they are so bored.  This is the time when they fight each other and get in each other's faces just for fun.  They hunt when they are bored too.  I keep praying for no bunnies or baby anything to show up in the middle of the night.  It's not that I am not a good pet parent.  I would get my cats any toy they wanted but they get destroyed.  After all it's not like a cat can pick up his toys and put them away. Cat toys left on the floor around here tend to be either swept up, or victims of a 300 pound steel wheelchair.

Speaking of being bored, I have a transit board meeting tomorrow.  With the new $200,000 dollar cut in the budget no matter what I think seems to go in one ear and out the other.  Realistically its hard to expand or improve services when your budget gets cut so deeply.  I really toy with not going but it is a small chance to network a bit, and more importantly I said I would do this and I have to be true to my word .  Sadly, I have nothing else going on.  Oh well nothing much to say today.  Order Avon.  Take care

Today is a down day

I don't feel like myself today.  I am sad.  I am not sure why I am sad.  I have that I am a huge failure feeling today.  I have not been able to cheer myself up.  My care provider is here and she has been a big help but I still feel bad.  I am almost 44 years old and feel like I have done nothing of consequence with my life.  I think I started with the wrong advocacy group to be a true advocate.  This group has as it's biggest agenda to close institutions.  I quite agree that most institutions are out of date.  But you have got to support individuals with disabilities by making sure the community has the appropriate services to support these individuals.  This community definitely DOES NOT support individuals with disabilities well.  Those that are in institutions are protected but kept away from experiences.  People with disabilities within the community struggle day to day with jobs, food, and shelter.  You can forget any idea of a social life.  The system teaches you to beg not to do things or accomplish anything on your own.  I feel like when I do try to accomplish something on my own I get held back by attitudes and misconceptions.  I don't think I will ever break out the way I want to.  I don't feel I will ever get a job or be able to be off of public assistance.

I do know I like working with individuals.  I am sick and tired of systems.  I know I would love to give out whatever information I can to anyone who wants to help themselves to a better life.  I am creative. I am always thinking.  My mind does not rest even when I want it to.  I need supports to turn these talents into a career for me and I have no idea what to look for or ask for.  I think maybe I will contact my friend at the Job Market on Monday and get his ideas on what I should be looking into.  If I am doing something I don't feel as bad.  Avon will only get me a little money.  I need some kind of regular income and I need a career.  How do I get it?  If I could answer that question I would be much happier.  Take Care.

Thought I would have a good day but>>>

I had a great day yesterday.  A really great day.  I went to see The Help.  It was really a great movie.  You laughed you cried.  There were times to be scared and times to be nostalgic.  I wonder how much truth is in this stories.  (Like the secret ingredient in Millie's pie!) It was worth the money I had to pull out of the bank to go see it.  I also had a really good late lunch.  I was not completely full so I took a granola snack to bed.  I was all set to try and doze for a bit.  I had trouble sleeping.  I watched movies I have seen 100 times.  I like to do this.  It comforts me when my brain can't slow down.  Then just when I was falling asleep at around 415 am,  THEY TURNED MY CABLE OFF!!!.  So I'm not sure what is going on.  I sent a bank check to the cable company at least 2 weeks before. Let me clarify. I DID NOT SEND A PERSONAL CHECK THAT COULD HAVE BOUNCED.  I rode the wheelchair to the bank, took cash that my roommates give me for their share and I put cash into a bank check.  I then gave the check to my care provider who mailed it with her bills.  I then CALLED the cable company and told them I sent this payment in when I gave it to my care provider to mail.  Now the company got my care provider's bills.  The cable company told me they never got my check!  How did they not get it!  I am really beginning to hate snail mail.  Too many things get lost or go to the wrong place. 

A bank check works like a money order. You pay the cash, and you get a check made out to whomever.  You also get a receipt.  Before you give the check out, You tear the receipt off and keep it for your records.  I have paid big bills this way.  I don't have much money now so any bills I can pay I try to get out of the way.  Since I had the receipt I figure it should be easy to get another right?               WRONG!

I inform my care provider what happened and ask her if she would take the new check to the office.  She said she would.  I am now really anxious.  Not only do I not have TV, but I don't have phone or Internet either!  I love this blog and my phone line is connected to an emergency button like this one.  So no cable no Internet and no emergency connection!  I hate a quiet house.  At 9 am I go back to the bank show them the receipt, tell them what happened and ask them to stop payment on this one and issue a new one.  But it's not that simple.  I have to sign a paper, get it notarized, the bank manager has to sign, and it has to go to the cable company and someone there has to sign and get that signature notarized.  WHAT a NIGHTMARE!  I explained the situation to one of the bank managers.  She in turn goes to her boss and they agree to take the paper down to the cable company themselves.  I took about half of what was left in my savings to cover that bill in cash and figured I would put the money back when the new check came through or make a double payment and put the money back by skipping a month.  They stopped me on the way home and told me to give them the cash and they would take it when they took the paperwork.  They told me they were leaving right away and this should be done by the end of the day.  When I got home the cable was back on.  It was awfully quick.  Apparently while the people from the bank were there someone posted my bank check and it got my cable and phone back on.  The ladies from the bank say it must have posted today.  But I think someone screwed up and never gave me credit for a payment.  When all the hoopla started, someone found a note or something and finally gave me the credit for payment.  If I call on the phone my account still says well I have not posted a payment since July, an agent says they got the August payment.  Add too all this that my footrest is missing a bolt and nut and I can't use it and I caught my four legged child Minnie torturing a wild bunny.  (The bunny was rescued by my roommate.  It did not seem badly injured and was set free.)  All in all it's been a hell of a day.  A special thank you to the ladies who were so much help.  Thanks to their help, my cash I took out was never spent and has been returned to my account.  They really went above and beyond the call of duty.  I need more rest now.  Take care

Avon updates

I actually put in an order for Avon today.  It was not a huge order but I was excited.  It will maybe give me a bit of pocket money.  This is a big deal considering how tight things are right now.  Even if I can only buy a sandwich with what I make.  I did break down and sign up as an e rep for Avon.  I hope it does not end up costing me money.  If you like to buy Avon go to Avon.  I think the biggest problem with selling Avon is that you don't spend more than you sell.  I am trying to do whatever I can to help me gain sales.  Some of the products are really cool!  It's not just make up anymore.

I also figured out I spend more money without a care provider. When she was resting after her medical issue I went out to eat and had to visit the dollar store more often to get this or that.  With her  I can usually make it through the month without having to take out money.  I could not do that this month.  I did not take a lot out.  I just took out enough money to keep my promise of seeing The Help.  After all I need some fun and it looks like a great movie.  If I like it maybe I will read the book.  It was a bestseller.  I have it in my head that its time for something different though.  I hate when I think this way.  I usually do something or get into a bad deal.  It's that restless feeling that gets me every time.  I will try to make it go away until I have money to support it.  I am so looking forward to tomorrow.  I can't wait.  Hope I am not too excited to sleep.  Isn't it a shame when going with a friend to lunch and a movie makes me feel like a kid at Disney world?  :)
It's a short chat today.  Take care

Not your normal Sunday.

I did not like today.  I did not get to doze much cause my family came over to clean.  I like it when they come but they usually come later in the day.  I did not get to watch any good documentaries or movies.  I spent the day heating up ravioli in a can and eating hot dogs and doing paperwork.  I think I am being punished by God for all the paperwork I should have done and didn't.  from any missed work stuff to any college stuff I should have done but didn't do.  I am making up for it now.  I have all that paperwork from trying to do all the modifications to now the Emergency Mortgage Assistance to filling out applications for public assistance and energy assistance.  I also have any and all job applications and I still have to fill out the paperwork to get my property taxes exempt.  This is due Sept 1. Sometimes they extend the deadline if no one signs up.  If I get my paperwork in by the first deadline I won't have to worry about it. 

It looks like I will have to go to the bank to get monies to go to the movies.  I really hate to take money out.  I don't think I will get a job soon so I need to keep something in savings as much as I can.  I would really like to get going selling AVON but since no one is buying much of anything now.  I don't see that doing much.  I am not writing today to harp on the negative.  I just need to get all my ducks in a row.  I need to do all the paperwork, sit on the phone and beg if I have to to get my life in a better place.  Hopefully my care provider will come back tomorrow and a regular routine will help me feel more secure.  I have been anxious very anxious today. I am hoping I will calm down after a few hands of rummy and getting out of my chair for the night.  I hate to take them but I still have a few pills if needed.

I do have a bit of good news.  I spoke with a member of the faculty at SU.  She is getting her syllabus for her classes and is considering having me for more than 1 day.  She said something about a week. (two or three classes)  That would really be awesome!  If I feel like I am doing something I am always much better.  I hope it pans out.  Good wishes and prayers are needed.  If anyone wants to buy AVON send me a comment or email me.  (it all goes to the same place)  Take care

This is not Sunday

As you can imagine after yesterday's series of events I figured I would sleep pretty well.  I was really exhausted.  I had hoped that I could settle in quietly.  I did sleep for about 4 or 5 hours.  Then for some reason we lost power.  When you depend on electric for everything, losing power sucks.  It means you can't charge your chair or use the home phone and the cell phone needs to be watched.  Your electric bed won't move at all and there is no air conditioning so you are likely to have an asthma attack or at least be uncomfortable.  I always feel alone at this time because my thoughts get the better of me. I think about all the dumb mistakes I have made.  I think about the fact that I have no job and no money.  I wonder if my efforts are really going to change anything.  Normally I watch a movie or do cross stitch to deal with these thoughts.  I can't watch a movie without the TV and I can't cross stitch without light.  I play games on my phone, call the electric company and wait.  Try to stay still and not get too anxious.  In this case power was out from 330 am to 630 am so It was  not a total disaster.  After the power came back and the house cooled to a comfortable temperature I fell back to sleep and woke up around 11 am.  Normally My care provider would be coming in but she has doctors orders to rest a few days.  So I decided to doze a bit.  I turned to find my four legged child sleeping next to me.  She had the contented smile that cats get when they are safe and snuggled.  Just like this picture.

I also heard from my care provider today.  She was worried about ME.  She was worried about me?  I was worried about her!  I told her not to worry, just rest.  This is just like an extra Sunday.  I went out today and got sugar for tea, and food for a quick dinner tomorrow.  So I have no worries.  I thinks she worries because she did not plan to be gone.  She is worried I was not prepared.  Life brings you things that you aren't prepared for all the time.  This is just s few days.  Unless her doc says otherwise she will be back.  I can deal with it.  I spent more money than I wanted but I am prepared for tomorrow.  Not a bad day.  Take care all

Today has been a stress filled day

I have been excited about today for some time now.  I knew I was going to meet with the Avon person today to start selling AVON.  I was really excited because this would mean I was doing something while trying to find a job or start things in motion to go back to school.  The plan was that I would go to the dollar store to get sugar and other stuff in the morning and I would be home in plenty of time to meet with the Avon rep in the afternoon.  When my care provider came today she was not herself.  A bit absent minded she forgot a few things in our routine.  I went to go get the four legged children like I do every morning and came back because I could not find Minnie.  One look at my care provider's face and I knew something was wrong.  She was just sitting doing nothing.  This is unusual for her.  She always has a question or is doing something.  I asked her what was wrong.  She told me that she was feeling bad and that she was having pain in her arm.  I told her if it didn't stop to let me know.  About 10 minutes later, she was still having pain. I asked her to go to the doctor or the hospital.  I was afraid she was having a heart attack.  I knew that symptoms were different in women than men sometimes.  I was really afraid for her.  This is what Web MD says about women and heart attacks.  Women and heart attacks  She called me at 3:30 from the emergency room and told me she probably would not be back tonight.  I was not surprised.  At this point there was not a clear diagnosis.  I knew she needed to rest I told her not to worry go home and rest when she was done and we would talk later.  She talked to me after I met with the AVON person and ate.  According to the hospital, she did not have a heart attack.  She does need to follow up with a cardiologist.Thank God she is OK.

I met with my Avon person too and all is well.  I should be able to sell by the beginning of next week and I have to develop a strategy for getting customers if you consider that not every customer will buy every time.  I have my family member who sells AVON too.  She and I have decided to work together.  If someone lives closer to her and wants her that is no problem.  She in turn will send customers my way.  This way I don't feel like I am stepping on any one's customers.  We can all work together and support each other.  If you are interested in buying or know someone who is interested in AVON send me a comment or an e mail.  I wold love to hear from you!  All seems to have ended OK.  The care provider is alive and seems out of danger.  I am safe and excited to start something new and I did eventually find my four legged child Minnie.  She is safe and fed and sleeping in an old wheelchair.  Good night all  Take Care

Things you hate to do on a nice day.

It was a really nice day today.  Really nice! The sun was out. It was not too hot.  If you don't have a job today is a really good day to go for a walk.  I had to do some things today though.  I had to go see my counselor and talk to the IRS.  Yes what a way to ruin a really good day.  The counselor wasn't too bad.  This counselor is a substitute.  My other counselor had some kind of medical issue.  This one is here to replace her until she gets back on her feet.  The new counselor is young and has a degree in social work.  She has said things that can be taken as insulting.  I am sure she did not mean it that way and when I hear these things now I don't lose my cool like I used to.  I hate hearing them over and over.  The biggest insult I hear now is  Why don't I go into a day program?  Really? A day program?  I have more education than most of the people running that day program!  That is usually what I say to people when they tell me this.  Or that I will only go into a day program if they pay me to work there!! Have you ever visited what they call a day program?  Most of the ones I have seen are just big rooms where people sit all day and sleep or watch day time TV.  I have no problem with daytime TV but I will not get up to go to some room and watch it.  I pay my own bills (most of the time) I can watch my TV in my home.  That is what I mean when I say I am NOT to be put in a box.  I do not belong in any one's BOX.  I will make my own way.  Just because I am not working don't stick me in something you think I should be comfortable with just cause it is what is there.  I deserve better than just what is there. 

Anyway I told the counselor no day program and that that was insulting though I don't think she got it. I spent a lot of time today talking about my crazy family.  That always makes me feel very alone.  I miss my regular counselor. I left and had lunch.  I had a hot dog and chips at a local stand and stepped in to my local IRS office to deal with an IRS matter.  I got a notice in the mail that I owed for 09 taxes about $1300.  I worked all of 09 so while I am disappointed, I am not surprised.  This probably means I won't see a tax refund for some time.  I was really hoping I would get something back and be able to put it towards some important bills.  The IRS agent was nice.  I explained the situation.  I am sure he hears this kind of thing all the time.  After signing a few papers I agreed to making payments.  That is the best I can do under the circumstances.  It didn't seem like I had a good day but I think I am doing what I need to to get my life better.  How do I feel today?

Hopeful!  Take care

Not a bad day today.

I have had lots of worries lately.  Keep my house, get a job, find money for heat and homeowners insurance.  Do my paperwork for the property tax exemption for my state.  Still lots of worries but I am in a good mood today.  The four legged children seem happy.  None of them are missing all are safe.  I got nothing in the mail (That means no bills)  I am keeping close contact with two things.  The first thing is the agency that is supposed to be helping me with this house's mortgage is asking for yet another piece of paperwork but I had it and could fax it easily.  I also got a call from a agency working with the department of the Treasury.  They are looking into the fact that I got denied for a mortgage modification.  They are supposed to see if they can help.  They have asked for no money.  They are called HAMP solutions center.  HAMP stands for Home Affordable Modification Program solutions center.  They are supposed to take a look at what I have submitted and find out why I was denied.  I am a bit worried this is some kind of scam but I looked it up and it all seems legit.

I was the most impressed because they said they got the notification because I wrote the United States President.  I wrote the President because I know he is trying pretty hard to get us all out of this economic mess we are all in and he needed to know I thought his program for home modification was a good idea but it was not working for me.  That means that someone like me who has lived in their home for all of their 44 years may lose it.  With a disability and 3 four legged children, that thought is beyond scary.  What else could I do?  I requested an answer.  It took a few months but it was nice to know someone was helping or at least trying to help.  Now there is no guarantee that things will turn out in my favor.  All this does is put a new set of eyes on it. With new sets of eyes come new negotiations and new ideas. I am not as scared as I used to be.

To add to my upbeat mood I am going to start selling AVON on Friday.  I meet with the lady to put in my initial investment.  (It really is affordable even for me)  I think it will make me feel like I am doing something because things are down to nothing here.  I am also getting ready to go see The Help  I will see that next week.  My care provider got coupons to a restaurant near the movie so we can have dinner!  I have not been out for fun in some time so I am really excited.   If I like the movie eventually I will get the book.  And CHOIR IS GETTING READY TO START!! I am still in this house.  Choir is a real release for me and I can't wait to sing and see these people again.  I got the notice today.  We are also going to sing again in the Maji Concert.  This is a local concert with local choirs around Christmas and the money goes to a local homeless shelter.  I have sung in this concert before and it is long days and a lot of work but I love it.  Since I have been one step closer to being homeless, I understand the need.


Be happy today and take care. 

What are Sundays for

I think my Sundays are my thoughtful days.  Some people take their Sundays and attend church or rest or whatever they choose.  I seem to like to think.  This is the day that I watch most of my documentaries.  Sometimes I watch PBS.  Today I watched 2 sets of PBS's Nova Science Now.  I actually saw this one about how smart animals were.  I have been a fan of all kinds of animals for some time.  This one talk about drawing parallels between how animals learn and how people learn.  It was interesting and I am curious to see where science goes with this.


I saw another Nova Science Now show that had as one of the pieces a story about the scientists that are doing research to find the gene that causes Autism.  As I have stated in an earlier blog I don't know much about this particular disability.  When I speak to people such as students or any kind of public speaking,  I talk about disability in general since my main goal is to get people to look and think and teach outside of the social misjudgements known as stereotypes.  Occasionally though I do get questions that are specific to disability.  I then have to say that I don't have much experience with autism specifically.  I am sure I have worked with people who are autistic.  In my last job we never cared much about diagnosis.  My general rule of thumb is get to know the individual.  I was very excited to see what was going on in research about autism.  This piece did not disappoint me. 

This story started like most stories about disability do.  It started with a boy and his family.  When this boy was born he appeared not to be disabled.  This is very typical for children with autism.   Around the age of one he stopped looking at people in the eye.  After that he stopped speaking.  The diagnosis of autism was devastating.  But this family refused to give up or take the status quo.  She found scientists on her own willing to help research this.  The family helped collect blood samples from 1000 people with autism.  She found a scientist that isolated the gene for predicting Alzheimer's.  He is now working on finding the differences in the genes of people with autism.  The scientists have found out that if one child has autism a sibling is likely to have autism.  People with autism have missing genes and or mutated genes that may have an affect on development and behavior.  People with autism lack the ability to decipher social cues.

My favorite part was near the end of this story.  The parents had gotten their son supports and he began to use a letter board to communicate.  They found out he was highly intelligent and could answer most any question of a boy of his age.  He could also read.  When they figured out thir son could communicate, his parents asked him "What were you doing in there all this time?"  His answer was "Listening"    Never assume someone who can't speak isn't listening.  Always think outside the box even if you must work inside one to get things done.  Hooray for people who don't take no for an answer.  Sometimes it is the only way to accomplish your goals.  Have a good night take care

More of one of those days

Today my care provider came in with a huge smile and asked me how I felt about being treated to lunch.  I have not been out for pleasure in a while so I was thrilled!  Not only did I not have to pay for lunch, it was one of my favorite restaurants.  Today was also a beautiful day.  It was hot but bearable.  Just a great day to be out.  Here is one advantage to not working right?  Not today.

We arrived at the restaurant.  I ride my chair and my care provider drives and meets me there.  We sit down and she says I can order an appetizer if I want.  So I order one.  It's obvious the appetizer is home made.  For Mozzarella ticks it was a lot of cheese and not a lot of breading.  It was really excellent.  I ordered my favorite dish, Spaghetti and meat balls.  Now let me say that I have been going to this restaurant since I was in high school.  I have been with my dad. I have had birthday parties here.  I have convinced the choir to have their parties here on occasion.  When you have a disability and you can get in to a place, and get treated well even before the ADA laws passed, you stay loyal.  In all the days I have gone there I have NEVER gotten a bad tasting spaghetti and meat balls until today.  The spaghetti tasted like it had gone bad.  (I did not know spaghetti could go bad)  My care provider had ordered the same thing.  She said hers was fine.  I spoke with the waiter and nicely told him I did not think this was good.  He told me it came out of the same pot and was made the same way.  I agreed but I did not like it.  After some discussion he did take the spaghetti off of the check.  I was happy that he was so nice about it but I was disappointed after being so excited to go out.  I don't want to say what restaurant it was because I still don't know if the spaghetti was bad somehow or if it was prepared in some way that I did not like.  I have been a good customer of this place and I will go back again though I may not order spaghetti.

My bad day does not end there.  I went to bed early with a small sandwich.  My care provider had church play rehearsal tonight.  I figure I will sleep early, watch a movie or the replay of the last Project Runway and do cross stitch.  Just when I am not thinking about the fact that I am getting hungry,  My cat brings a bird in.  We have a cat door so sometimes this happens.  So I am up at 12 midnight on a Friday night/Saturday morning not because I had a date.  I am not up because I have to do something for work.  I am not up because I have been traveling to NY or for any fun or exciting reason.  I am up at midnight because my cat brought a bird in and tried to leave it in my roommate's room.   The cat behavior books say this is a gesture of friendship.  The cat is giving you a present or trying to help you care for yourself by bringing you food the way she would her kittens.  But she is not allowed in my roommates room.  My roommate does not see this as a present.  She sees it as a bad behavior.  So she yells at Minnie and throws her out and gets upset about the bird.  I tried to find the bird before she did but I did not.  I could only help clean up a bit and then try to calm everyone.  What a night! I am going to play some rummy and go to bed  Take care.   

Job interview updated

Have you ever had the worst day?  Today was up there among my worst.  I had a job interview today.  Or at least that is what I thought.  I had set up transit ahead of time.  To set up Job interviews with transit is tricky.  Normally I call and transit tries to get me there a few minutes early.  But you don't want to arrive at a job interview too early or too late.  Today the driver got lost and did not arrive at my home until 8:50 am.  That is TEN TO NINE to go half way across town.  To top it off the lift on the bus did not work.  So it took the guy longer to get me on.  There was also another wheelchair on the bus.  The driver said he was not going to strap me down.  THAT IS ILLEGAL!!  A Driver must be able to strap you in if you use a wheelchair.  To not do this is a safety hazard for you.  I told the driver for safety reasons he really should strap me down.  He told me because of the two chairs he could not do it.  I was free to wait for another bus.  In the end he did strap the front down.

All of this made me TWENTY MINUTES LATE for a job interview.  TWENTY MINUTES!!.  When I got to the office that was scouted out before hand to make sure it was accessible,  The ramp to the office was on a sidewalk.  I had a hard time finding the ramp to the side walk.  I got up the ramp and found out the interviews were upstairs in a building with no elevator.  What a mess.  I finally stopped someone coming out of the offices.  I told them what the deal was.  (But the wheelchair is a dead giveaway)  A staff member told me that there was a meeting room downstairs.  Had I gotten there earlier they could have switched rooms.  In the end this was just a recruitment for insurance agents.  I don't think I am interested but WOW!  I got up early so I could be dressed and ready.  Transit screwed up big time.  I have said before we should support transit.  They help get a lot of people around who truly do not have another way.  But here transit does not have a good reputation.  Things like this are the reason why.  I will write a letter and send it to the head of transit.  He is a nice guy and will hear me out.  Unfortunately I am sure something like this will happen again.

The other thing I noticed today is that people were really nice over the phone.  They pulled my resume off Monster.com.  As soon as they saw me their demeanor changed.  This tells me I am definitely not getting hired for jobs at least in part because of the disability.   In one morning I was reminded of everything I hate about where I live.

• Lack of opportunity
• Lack of appropriate supports
• Prejudice that runs deep

As time goes by I am losing more and more hope about a job.  I guess I was supposed to stay at a job that I hated and thought was going in a really bad direction just so I could have a job.  I know my former employers are glad I am no longer there.  I was happy that I did not have to be under that microscope anymore.  Should I have worked harder and stressed out more just to keep a paycheck?

How I feel today.  Thanks for letting me vent.  Take care

Well it is a Monday

Well it's Monday.  I really wish I had some type of job on these days.  I have a job interview at 9 am on Thursday.  I don't want to say anything about it for two reasons.  One.  They do not know yet that I am disabled.  My resume with 6 years of advocacy and 10 years of public speaking on stereotypes should give one a clue.  I really don't think they know.  Reason 2 every time I tell someone that I have a job interview with this company or that one, I never seem to get the jobs.  I expect this to be more of the same.  They pulled my resume off Monster.  It would not have dawned on me to contact them.  I honestly don't know what I think of their jobs.  I don't even know if I can get into their offices.  I am sending someone to scout that out.  I expect the door to be closed as soon as they find out I am disabled.  I will keep you posted.

I am also worried about this budget issue thing.  If the social security checks don't come out then I can't pay my bills.  NONE OF THEM!  Don't get me wrong I KNOW I am not alone in this worry.  Anyone who gets social security has to be worried sick.  That is really one of the biggest reasons why I hate being on disability and will try until I am dead to get off of disability.  When you get on disability the government gets to tell you what you can earn, how much you can save, and some of what you can do with your money.  If you earn over $1000.00 per month you will make too much money and get your disability terminated.  If you save over 2000.00 in your bank you will get your disability cut.  You are not allowed to invest this money.  If you get married your disability gets cut maybe terminated depending on what your spouse makes.  Since I don't like rules and boxes you can see I don't like this system.  However right now it is the only thing keeping a roof over my head.   So let's hope we get our checks.  I just know my life needs to change and I am the only one who can change it.  Anyway nothing else is going on.  I will write again.  Take care