Friday night's events passed more smoothly than I had expected, which is one of those surprising aspects of being an aspie parent.  Saturday went fairly well considering we were way behind our original schedule.
  On Sunday, Larry and I took a short road trip to Bardstown to attend the Second Sunday Jam.  I had left my phone at home, so I had no phone calls to manage until we returned home.  Even then, the phone was dead and had to be charged for a while.  It turns out he had CLS staff, Jamel, that afternoon which gave him something to do, although he did send me a copy of a text he sent to Andrew complaining that we were not answering his calls that day.  My phone was at home and Larry would not answer his.
    Monday morning came too early for me.  I was up into the wee hours of the night when I should have gone to bed earlier in order to be functional today.  We had a meeting at 11:30 am with Kristin, his case worker.  I barely arrived on time and I was too tired to bring Tim home with me afterward.  Jamel had a court date today so he had to spend the day by himself, something that is very hard for him to do.
   He began calling me mid afternoon wanting to come to our house to print photos. He is getting more interested in photography now that spring is beginning to appear.  But his actual motive is that he wanted time with us because we are going to the Ohio Valley Gathering next week and he wanted to trade today for Sunday, which we would otherwise spend with him.  His dad picked him up after work and they came in with a movie, "The Lone Ranger", to watch with us tonight.  I guess the trade off has been settled.

     I am over the virus I had last week but I really lacked energy today.  I spent about 40 minutes at the YMCA and did about half of my normal workout.  Our son goes to the Y also.  Jamel can go with him to help him navigate things like showering and privacy in the dressing room.  It has been very good for him and for me, even though I go separately, most of the time.  My trainer, Kaleb, spotted me today and asked where I had been and I explained the situation I had last week which kept me home.  I did feel better after working out but I needed a quick nap.
     Exercise is important for me for my breast cancer survival but it is also important for my caretaker sanity as well.  It helps in dealing with stress as well as burning calories!  I will not stay up late tonight.  That is just a stupid thing to do. 

    Today was quiet until I realized I had left my phone in the car and it was probably no longer charged.  I am feeling better but still weak.  I was on the couch most of the day.
     We are working with a behavioral therapist with our aspie and we have just begun a new plan to try to teach him to control his impulses to call us.  He has a limit of 4 calls a day to each of us and he also has a time limit on when he can call.  It actually is working fairly well, as long the therapist stays with him for a long while, it may stick for him.
   I was surprised when I checked my phone for missed calls.  He had not called at all and it was near 1:00 pm.  It was only a half hour or so until the first call did come and he told me that he was at my mom's and was going to work with my brother and stay the night with them.  That was good news.
  A couple of hours later, I received a call from Mom who told me that he had decided not to stay the night but he had worked with my brother.  I wasn't surprised by this because I figured he had gotten paid and wanted to go shopping.  He made his 2nd call when he arrived at his apartment.
    I was feeling isolated and antsy so around 5:15 pm I called hubby and let him know that I was bored silly and wanted to go out when he got home.  I also asked him to call our son to discuss tomorrow's activities because I had promised him I would.  It always helps him to know what to expect.  But a wrench flew into the works a little while later.
   I received a call from hubby around 6:45pm saying he had 2 flat tires, had pulled into the tire store lot, and they were closed.  I had to go pick him up and we left the car in the store lot.
   We went to dinner, did a short grocery store stop, and then returned home.  It was already 9:00 pm and our son did not know what had happened and that it will greatly change tomorrow's plans.  At 10 pm I reminded hubby to call him.  He will most likely have a difficult time dealing with the change and it greatly depends on how we break the news to him and how we respond to his reaction.  Hubby is avoiding the call.
   Avoidance is one of the worst ways to deal with an Aspie.  They need to know what to expect and it is very frustrating for them when things happen differently.  There are very few grey areas in his thinking, regardless of many past experiences to prove that things do not always happen the way we expect them to.  He will need lots of assurances that he will still be able to do some of the things he had hoped.  
   It does not help to tell him that our plans were also changed.  He does not see well beyond himself, initially. Many times he is able to understand our situation but it is after he has calmed down completely, which can be days later, nearly never at the moment that the change has ocurred, or, as in this case, when he learns about it.
    It takes patience, diligence, and planning to help him through these experiences and sometimes, it isn't enough.  There can be surprises that none of us could possibly expect.
   So, here I am, still not feeling 100%, with an aspie son who needs to know that tomorrow's plan has changed and a reluctant hubby who has not called to update him and discuss new plans.  It's 10:20 pm.  I just want to go to bed!

 

    I have not kept up with posting here for a long time but I think that today convinced me that I need to pick it up again because it also can help to relieve stress.  When I first started this blog, I was hoping it would be a help to other Aspie parents out there, but today was a totally Aspie day and my intentions are completely selfish.

  When I was diagnosed with breast cancer 1 and 1/2 years ago, I thought it was the most difficult thing I would ever face in my life.  At the time, it was.  But I have come to realize that the little events of daily life, when combined over time, can be very difficult too, especially the challenges of being an Aspie Mom.  One of the major factors in breast cancer recovery is learning to reduce stress and the effects it has upon you.  I have always found great comfort in my faith, but I have embraced several other small changes in my lifestyle in that endeavor.

     I have found yoga to be a great stress reliever, as is massage and Reiki.  I have drawn from some past experiences with physical therapy sessions to ease pain and increase restful sleep.  Exercise, diet and nutrition, although they are different factors in recovery and health maintenance, do bring a degree of stress relief, in that I feel better if I use them.  I also feel more hopeful, knowing that I am doing what I can to help myself to be a healthier person with less risk of a recurrence of the breast cancer.  And if it should return, at least I will know that I have done all that I can do to prevent it.  

   When I said today was an Aspie day, please let me explain.  Aspie days can be wonderful.  There are plenty of times full of surprise and laughter but there are days of stress and hardship as well.  This day was of the latter type.

   I have been fighting a GI virus this week, not the 24 hour type that make their visit and then disappear, but the type that linger for days to be sure you know they were there and they really did not like the way your body treated them.  This all began on Monday.  Maybe I should have called this an Aspie week????

   Anyway, today is Thursday and Thursday is "His day".  Thursday is one of the two days a week he gets to spend with us doing the things he wants us to do with and for him.  Being an Aspie, I don't think he has a clue that he could be doing things with and for us, it is all about him. 

     He has a  Community Living Services worker who came earlier in the morning than usual and brought him to our house around noon.  He had called me around 10am to ask me to take him downtown and I had already told him I was ill and could not do it, but when he arrived at our house, he was expecting I would change my mind.  I did not.  I explained that driving downtown would put me in a precarious position with the illness that I have and I did not want to run the risk of the possible repercussions.  I doubt I have to explain what a GI virus can suddenly do to you.

   However, my appetite is returning and I told him I would take him somewhere close-by  with foods that I could tolerate.  He realized he was not going to change my mind about the trip downtown, so he settled for lunch.  We found the place and ordered lunch but just as I was beginning to eat, the GI issue decided it was time to take me out.  I could not get out of the booth quickly and I barely made it to the restroom!  Just what I had feared!  I asked for my meal to be put in a box, paid the bill, and returned to the safety and closeness of my own bathroom!

     I guess when he saw litterally that I was telling the truth about what could possibly happen, he finally realized that I truly was not well enough to trek him downtown.  He decided that the bus was his better option and that a ride home with Dad from his work would be better for us all.  I just hope he doesn't catch what I have had! He won't want to ride the bus for a month!
     This is very typical of Asperger's Syndrome people.  They often are not able to see beyond themselves and understand the needs of other people.  He could not see that I needed to take care of myself, rather than him today.  And that is one of the most difficult things in life that we Aspie parents have to deal with.  It isn't the Aspie's inability to understand, it is our inability to know when we ourselves need attention first, more than they do!     
   Maybe someday he will learn to look beyond himself, but maybe not.  Therefore, I must learn to be aware of my own needs and be able to set his aside for a day or two, or however long I need, to heal and de-stress.  
    So he left on the next bus for his ride downtown and I am in the quiet, peaceful surroundings of my home with my laptop, de-stressing and writing about my day.   My gut has settled down and I may even go to the kitchen and enjoy some jello.  I hope you have had a great day too.

Autism Spectrum Disorders

   I recently heard that Asperger's Syndrome is no longer going to be diagnosis, that they are calling it all ASD.  I fear that it means that kids diagnosed with AS will no longer qualify for services that are provided for them because the diagnosis may not be specific enough or even recognized. 

   We only learned of AS in 1998 and it was not widely recognized then.   Prior to then he had been diagnosed as bipolar.  In fact, I  presented the information about AS I had found to his doctor.  The difficulty we have faced since then has been getting services as an adult.  Because his IQ is not below normal, he already does not qualify for the services he needs.  In Kentucky, you have to have a below average IQ in order to be considered developmentally disabled.   How many other Aspies out there face the same struggle?  Many, I am sure.
   I hope this change does not cause loss of services to anyone.

A New Direction

....We had a case worker for a year or so that was very affirming of our son in his interest in photography.  She encouraged him to pursue all that he could and he progressed while doing it.  Unfortunately, as has proven to be common in our lives, she was moved to another department and given a different job and we lost her.   That was about 2 years ago.  He has done very little with photography since then..
...She was the person who suggested that I contact Jackie Marquette.   I researched to find out who she was and what she did, but I did not contact her then.  I should have.  Now, at a time when things seem to be falling apart for our son, I contacted Voc. Rehab and they are going to support him having an evaluation with her this coming Friday.  I have no idea if it will help.  I can only pray that something good comes of it because our options are narrowing by the minute as we grasp at what seems to be straws in the effort to find the supports that he needs to live successfully on his own.  

 

NEW YEARS......finally!

     I haven't been here in a while and I thought it was time to catch up, so here we go.  The holidays are over.  Frankly, I am glad.  From Thanksgiving to Christmas is probably the most difficult time of year for us.  Our aspie becomes obsessed about money, gifts, food, and just about everything else relating to the time of year.  Money is the most challenging thing.  There are constants requests for more and more, white lies about what he will do with it, and unending demands for things that he "needs".   With hubby having worked only half of the past two years, money is something we do not have in abundance.  We have gone through the most difficult time of our married life financially.  But our aspie has no real understanding of what it has been like for us, only for himself.

    He has no real budget for clothing with his SSI income, which he can barely subsist on.  In the past 6 months, I have spent over $800 on clothing for him.  He is very tall and large and rough on them, especially pants, and needs new ones nearly every month.  His shoes last around 3 months.  He wears very large and wide shoes that run around $100 because they do not hold up well to the wear and tear he gives them.  He has ankles so thick I cannot find socks that will go over them. 
    Thankfully, he does have housing and food assistance which provides a roof over his head and about 1/2 of the month's groceries.  Here again, we pick up the slack when the food assistance runs out.  (Right now he is staying the night at his grandma's because the heat went out in his apartment and they did not answer the emergency calls to the maintenance people.)  I have all but begged his case worker to find help for him to learn to do simple things like budget, make a grocery list before shopping, and help him find healthier food.  These are things I have done in the past and I can do them again, but we want him to become more independent, so I am trying to stay on the sidelines. 
   He often gets angry with me because I pay his bills and manage his money.  He sometimes accuses me of misusing it when he wants something that he cannot afford and I have to tell him that there is no money for it.  He smokes, which is a very expensive habit, and I remind him often that he would have more to work with if he gave it up.  Usually, whatever is at the forefront of his mind at the moment is what he cannot let go of and such reminders go in one ear and out the other.
   In November, he asked me to purchase an electronic cigarette for him.  It is a tool that people are using to quit smoking.  It delivers the nicotine without the tarry smoke going into the lungs.  He used it well for a few weeks but as the stress of Christmas came on, it fell to the wayside and he began buying cigarettes again.  He stated he would go back to the e-cig on Jan. 1st, but it did not happen.  I would like to kick the person that introduced him to smoking.  I fear he will never give it up.
   He has been assigned a behavioral specialist and she has been helpful.  She is mostly a reminder of things he knows he should be doing, but when she isn't there, he relapses into his usual behaviors.  We have asked for an occupational therapist to work with him but that has not happened.  He has dyspraxia and that kind of therapy could help him with it.  All of these services are dependent or pending approval from Medicaid.  He does not qualify for all of the services that are available because he has a normal IQ.  If he had a low IQ, he could get many more services that would help him to live a better life.
   Frustrated?  Yes, very.  Looking ahead to the new year?  I have no idea where we will be a year from now.  I am realizing more and more the need I have to be taking care of myself and I hope to do better at it.  It sometimes seems that for every step forward we make, two steps backward follow.  I can only hope for better things to come.

After having a mammogram in August, I recieved a letter stating that something had shown up on the images and I needed to make an appointment for more tests.  I followed through and had that appointment on Oct. 20th.  Fortunately, all that was found were cysts that are not dangerous.  But in the ensuing days ....

  
    The day of my appointment was more eventful than I had realized.  While I was at the Breast Care Center, our AS son was doing other things.  You all know how he loves photography and takes great pride in his camera.  He decided to sell his camera because he wanted to purchase a bass guitar.  I found out about it the next day.
   I knew he had done this in reaction to what was happening to me and I also knew he would regret it.  He obsessed over the bass all week long and insisted on taking it to the LDS jam on Tuesday night.  Like a child with a new toy, wanting to show it off to the folks, he carried it in.  I had been warning him that it would not be welcome in our jams because we are all acoustic.  He did not listen to me but when he was told that he could not play it there, he proceeded to the parking lot and had a “melt down”.  I had been in the back room giving a lesson and when it was over, I was told that he was in the parking lot.  I won't go into all of the details about how I was told.  But I went outside to check on him, he was so upset I had to take him home.  He had taken it very personally, and was hard to console.
   On Wednesday morning, I knew that I would probably be spending the day helping him work through the ordeal and that is just what happened.  He called and said that he had decided to take the guitar back and buy back his camera but he had lost the receipt and could not get cash back.  He finally decided to exchange the electric bass for an acoustic bass.  I took him to the Guitar Emporium to do so.
   My greatest fear was that he would be told not to return.  He has been "asked out" of several organizations because of his melt downs.  I say “melt downs” because that is what I have heard other parents of AS kids call it.  It looks like a temper tantrum, but it really isn’t quite that.  It is the result of the frustration he feels due to his lack of expressive communication skills, which is the most difficult aspect of his disorder. 
   He has never hurt anyone, but people are sometimes afraid of him because when you mix a meltdown with his 7’ tall, 400+ lb. stature, it is intimidating.  He has learned to remove himself from the situation to calm down but Tuesday evening, the only place he had to retreat was to the parking lot where it was getting dark and people were trickling into the jam. 
    I don’t know if he will be able to play the bass guitar or not.  I hope he can play it.  After a talk with the society president, we agreed to ask him to come every other week.  He has lost only half of the priviledge, fortunately.