Hubby likes to stay up late which keeps me awake until well after midnight.  Aspie son has no help today.  That equals an earlier start to the day than we wanted.   It began with being awakened with a request to go out, then a counter offer requiring him to mow the lawn before being taken out.  That was followed by escalating demands for help to do the mowing......  and on it goes.   I am completely awake now.

Today is a hard day.  My mother and brother are staying with us at the cabin at Carter caves.  My brother is an early riser.  We are not early risers.  When our Aspie got up early to go outside and smoke,his uncle assumed that all of the cigarette butts on the ground outside the cabin were his and demanded that he pick them up.  They were cigarettes butts that other people had left there but his uncle would not hear it.  I got up about a half an hour before my alarm went off because l could not sleep with all the ruckus they were making.  While I was dressing and trying to get ready to go, his uncle started in on him again and I told his uncle that I had watched him smoke and I had seen him put his cigarette  butts in an ashtray and I had not seen him throw one on the ground.   That didn't matter, his uncle wouldn't listen to me. By then l was frustrated and l yelled at him and told him to clean them up anyway.  So here we are, almost to the funeral home.  What a day to start this way. 
  It was a very heavy day.  My cousin was only 50 years old and his parents, as well as his wife and sister have survived him.  He was one of the younger of our group of first cousins.  The older of us could not believe that one of the younger would go before us.  His parents and sister struggled with it also.  His mom, my aunt, said to me, "It isn't supposed to happen this way." 
   After the service and graveside prayer, we all gathered at the church for a meal and exchanged lots of hugs and kisses.    

   We are at the cabin by ourselves tonight, for which l am greatful.  There was too much
 Tension for all of us to be together.  Mom is with her sister, which is where she wanted to be through the whole ordeal of his sickness and death.  My brother is with her.  

Today has been good.  We traveled to Eastern Kentucky and we will attend my cousin's funeral tomorrow in Southern Ohio.  While traveling today our Aspie was quiet for almost the entire trip and there was no arguing between him and his dad.       
The cabin we have is very nice.  There are no other people in the other cabins.  We've seen deer, a fox, and a couple of stray cats.  Tim sat for quite some time outside on the deck, watching for wildlife to photograph.     
Tomorrow we will go early to the funeral home to gather with family and friends to pay respects and say goodbye to Lester.  It will be a very emotional time.   My aunt, his mother, is my mom's sister and both will be hurting badly.  
  We will stay here tomorrow night also.  It should be a peaceful way to end a difficult day.

Oncology Day Plus

I had an oncology appointment today which always makes me crazy even when things are fine because there is no way of being sure that everything is fine.  I had my mammogram last week and did not get the results until the appointment, so the anxiety was even more intense.  Everything was ok and I don't have to go back for 6 months.
   Along with this, we have been preparing to attend a funeral on Wednesday.  We all needed new clothes so Larry and I shopped over the weekend and our Aspie waited until today.  He left the house early this morning with his CLS worker and he began calling me around 8:30 am.  I was still in bed so I turned off the ringer and went back to sleep.  They were supposed to take care of all of his loose ends that he needs for the funeral and for an appointment with public housing tomorrow.  The clothing problem is that he is 7' tall and weighs over 500 lbs. so there is only one store in town that has clothes that fit him and their pants are not long enough for him.  His pants have to be ordered unhemmed.  They wanted $200 to order a pair of unhemmed pants for him.  He tried repeatedly to call his dad and dad would not answer his phone.  I was still asleep.  When I woke up, I discovered there was an issue and once again, I was all alone in handling it.  Needless to say, I was very angry with Dad for not taking his calls.
   After the Doctor visit, I was still anxious because I knew I had to find a pair of pants for him.  We met him and his worker at the DXL store and I found one pair of pants that would make do for him.  He had contacted his money manager and they had given him a check that covered about 2/3 of the bill for his clothing and I paid the difference.  I tried to talk him out of the ball cap, but he won out on that one.  Everything for big people has a huge price.
   I had planned on going to the Y this evening but we got home later than I expected so I did not go.  I needed it.   I finished up my laundry and will pack before I go to bed.  I may go to the Y in the moring, but the class is at 9am and I probably won't make it.  I will be glad when this week is over.
   

   The last two weeks have been a bumpy ride.  We were working on improving his compliance with the medications and not much was happening until the past few days.  The agreement was that if he improved and took the medications more regularly, we would take him to a festival next weekend.  He's just now taking it seriously but at least he is beginning to improve.  At the same time, I have had a first cousin who lives in Ohio who was diagnosed with sclerosis of the liver and it has been a roller coaster ride for the family, praying that he would get better, but eventually he went into hospice care and he passed away yesterday.  We will be going to his funeral next Wednesday.
   Today, was supposed to be the day that our Aspie got his money for cigarettes for the next month.  Yes, he smokes.  He picked that up at the first day program he attended as an adult.  His funds are managed by a care company.  They did not have the payment ready to be picked up today and this being Friday, and he did not have enough to get him through today, let alone the weekend,  I had to purchase his monthly supply for him.  I called the managed care people and told them that it put me over a barrel when he did not get the funds and I refuse to front him money, so I bought them and I want them to repay me, not him, so that there is no danger of my not getting repaid the $150.
   He was also planning to go to the state fair with us today but after not getting his money, he decided not to go.  He wanted us to take him to the sportmen's club and we would pick him up after we returned from the fair, and that is what we did.  While we were at the fair, he called me 17 times and probably made as many calls to his dad also.  He wanted us to leave and come pick him up.  We told him that he chose to go there and he understood that we would be late and managed to squeeze in a couple of more hours at the fair.  To ease the situation, we bought some fresh made fudge and took it to him when we picked him up.  He was tired and ready to go home, so there was little argument from him.
  As we drove into the club to get him, I asked hubby if he thought he might have gotten scared after dark.  I suspect that may have been part of it.  Most of his night fishing has been with one of his CLS workers.  They have stayed out there for long hours at night.  I think he was scared, but he would never admit it.  He wasn't alone.  There were other people fishing along the shoreline also.
   Anyway, another day in the life of an Aspie mom.  I worry often what will happen when Larry and I are gone, or when one of us goes, primarily me, because Larry is not equipped to deal with him, nor is he interested in becoming so.  Sometimes I feel that I am completely alone in this race,  in the middle between the two of them, both pulling with all their might, and me trying to retain my sanity.

Long time.....

...I haven't posted here in a long time and I think it is time to re-connect.  There are things I cannot post on facebook, or any other social media site, because our son sees the posts.  He does not know about this blog site.
   We have had a very hard 13 months.  In June of last year, he lost his section 8 housing assistance and moved back in with us.  We thought it would only be for a few weeks but it has turned into months.  He is back on the waiting list for housing assistance but we do not know how long it will take for him to receive it again. 
    We had many repairs done to the house while he was living on his own but now there are once again holes in the walls and things have to be cleaned every day.   We have about 30 hours a week that he is with Community Living Services workers but the rest of the time, he damands nearly all of our attention.
  Today was a prime example.  He left early this morning to help my brother with mowing and cleaning up the yard.  When he got home, we took him out to lunch and then brought him right back home because we had message appointments shortly after lunch.   We forgot to turn our phones off during the massages and of course, he called us repeatedly.  I just tuned it out the best I could.  When we drove up in the driveway, he was waiting for us to arrive and began to demand going somewhere as we got out of the car.  Neither of us wanted to get out of the car.  Hubby disappeared upstairs and I sat down to my computer and worked on some music downloads, transferring them to my phone.  All the while, he would banter back and forth between us, wanting to go. 
   His birthday is coming up in September and he already has told us what he wants and he wants it now.  We will try to make him wait as long as possible but we probably won't make it to his birthday.  Sometimes giving up is the only way to get some peace for a period of time.  A day or two, if we're lucky. 
   We are going to do some travel in September.  We have set goals for him to meet if he wants to go with us.  He is working at it slowly.  He has to be reminded because he does not keep anything at the forefront of his mind unless it is his current fixation.  He has little sense of time or the lapse of time either. 
   In October, I am going to have knee replacement surgery, and because of stairs, I will have to go to a rehab center from the hospital for about 4 weeks.  Hubby has little patience with him and I doubt that it will go well for them, or the house, while I am away.  I fear what I will find when I get home in November.  I will not be completely recovered for about 5-6 months.   I guess I will get a break from the stress at home but it will not all stay at home.  I will hear all of the complaints when they visit, I am sure.  
   I so want him to be more independent but it just isn't happening like we want.  He has become more dependent since living with us.  He may be able to get public housing in a month or two but he is justifiably afraid of it.  I am too.  The best places are not given to new applicants.  He would be placed wherever they have an opening.  Our city has a high murder rate in such areas.   There are many services he cannot get because he does not have an IQ below 70.  He is low/average on the scale and it keeps him out of the services he needs. 
   I try to keep my sanity with my music, friends, and lots and lots of prayers.  We get massages once in a while and I use yoga nidra, meditation, and relaxing music at night.  I try to exercise when I can.  I attend a water fitness class once a week and I have kept a small garden since spring.  I try to eat as healthily as possible and have really enjoyed my organic vegies this summer. 
    I am also a 3 year breast cancer survivor and I see the oncologist or her assistant every 4-5 months and a surgeon once a year.  I worry that the stress of living with my son will reduce my survival chances.  I try to keep up with recent research about medications and things that might improve my chances of a longer life.  I attend a nutrition support group once a month also.
   You may be a parent like me, with an adult autistic/Asperger's child and I hope we can share thoughts, ideas, vents, or whatever here.  I just ask that it not be too explicit!

In 'n out....

   He told me yesterday that there was a team meeting this morning at his place and I arrived to find out that the meeting is next Monday.  I took him to get a snack and tubes for his smokes and took him back home.  I am proud of him today for surrendering on an issue that we have been struggling with for the past week.  He stopped arguing with me about it.
  The phone thing is still up in the air, but hopefully his electric bill will be less and he will have the funds to have his phone fixed, or better yet, just use the cheap Cricket phone he already has and is using.  He is being more reasonable.
   I invited him to our house tonight.  I purchased some hot wings and chips and we watched half of the NCAA final tonight, KY and UCON.  He is a huge Cats fan!  He is going home during half time.  He was tired.  He usually conks out early and gets up early.  It went well.  He really is a good guy when he isn't being arguemenative or irritable.

NOT a good caretaker day....

   I spent a large portion of time this week taking care of  Tim's constant issues, always one right after another.  I know that Josh tried to keep him from badgering me, but he was alone enough that he kept me spinning. I am exhausted and I need to get away from him for a while.  I would love to have about 2 weeks on a warm beach somewhere, with no cell phone, so he could not call me. 
   Every call he makes is a plea for either money, a ride, or just time with him to do things he wants to do.  It is exhausting because it is never a two way street. He doesn't understand that there is any other part than his and what he wants.  If we give him whatever he wants, then everything is OK, for him, regardless of the cost, or the effect it may have on us. 
   The week began with demands about a his cell phone.  His phone was not doing everything he wanted it to do, even though he could call and text without a hitch.  What he really wants is a phone with internet capability, which we have had to guard very closely in the past due to some inappropriate behavior.    
   I am a pushover.  I admit it.  I can only tolerate so much badgering.  I gave in and loaned him the money to purchase a cheap phone with the promise that I would be repaid by the agency that manages his money.  The phone was cheap but the service is not.  He went with AT&T and the monthly fee is $65/mo.  His fee with Cricket was only $32/mo, a very poor decision on his part.   And my reimbursement was for the Cricket amount, not the new amount.
    He called this morning when we were on our way to the dulcimer class at Gilda's club, wanting us to pick him up, but we did not have time to pick him up.  He angrily ended the call with words that get him blocked from calling me, although he can block his phone # and it comes through as a private number.  A few minutes later, he called again, saying that he had "dropped" his AT&T phone and had accidentally broken it, thus he needed a brand new android phone and I should give him $60 to buy another one.  I stood my ground and refused.  He was really angry at that point.  I told him I was about to enter Gilda's and was going to turn my ringer off while I was there so as not to be interrupted.  I placed his number so that his calls would go straight to voice mail and set the phone on airplane mode so it would not ring at all.
    When we finished at Gilda's, he called Larry to tell us he had ridden the bus into the Highlands and wanted to be picked up and get lunch, which is what we usually do on Saturday.   We came to our house after lunch and Larry went straight upstairs to hide.  Tim went on again about the phone and still is harassing me about it, even as he exits through the door.....it is 3:45 pm.  3 hours of endless harassment is too much.  Now I have a newsletter to finish and get sent out.....  Oh, yeah, then there was the bedbug issue and the visit to the housing authority....  won't go into that right now.

The Phone Calls......

He has been without CLS help for a few days and has been demanding a lot of attention. His uncle helped him for a while today. He really hates being alone.    He called while I was in a an appointment with my oncologist and while I was at the Y working out.  I returned his calls when I was leaving. He wanted me to come to his place but I explained to him that I had a stressful day and needed to go home. He called repeatedly into the evening asking me to remind Larry to call him, which I did. He thought Larry was deliberately ignoring his calls because they went directly to voice mail, but his phone battery had died. I asked him to call him with my phone, which he did and I explained to Tim the battery issue.   We both forget to charge our phones at night on occasion and they run out of power the next day. I can charge mine in the van or at home but Larry can't re-charge his if he's on the bus in the evening. Tim does not think about those things. Just like he did not think about calling even though he knew I was at the Y and would not have my phone on me or when I was in the doctor's office and turned my ringer off.  Such is Asberger's Syndrome.

Ever wondered?

Here is a page that will answer your questions!
http://www.tonyattwood.com.au/index.php/about-aspergers/what-is-aspergers 

 

This was a tough afternoon.  He called me repeatedly while I was at the Y working out, which he knew I was doing, and when I was finally able to answer his call, by the time I got the headset untangled so that he could hear me, he had become frustrated and went off on me.  I told him that I would not talk with him again until tomorrow and that I would set up his grocery shopping funds with Jamal this evening when he was with him, which I did.  He is not a happy camper.  Lucky for him that it's only until tomorrow.
   Our plans for the Gathering have changed.  He is going to go with us, it appears.  His plan is for Jamal to bring him to Lexington on Saturday but my suspicion is that Jamal has not agreed to do this and he will end up going with us on Friday.  He wiggled his way into this through his dad.  I would not have allowed him to do that.  If he by chance reads this, he will not like it.
  How I wish that he could have someone to help him to progress with his photography and start building a life of his own that does not depend on us so heavily.   Everything that we do, he wants to be included and feels entitled to do so.  For instance, if we go out to dinner tonight he will feel slighted when he finds out that we did so without him.  Then he feels that we owe him something in compensation for not including him.  Most of the time a gentle reminder that we do lots of things for him will suffice, but the next time it happens, he has to be reminded again, and again...  It doesn't stay with him.  I suppose the feelings associated with it are so strong that he forgets the reality.
   That is the tell tale thing about Asperger's Syndrome that almost all Aspies share.  They experience life with intense emotion and it is often socially inappropriate emotion that is very hard for neuro-typical people to take in.  It is seen as deliberate but it actually comes naturally to an Aspie.  Some learn to compensate and find ways to choose another response, but others don't.
   My refusal to talk with him again until tomorow works fairly well, although today, he has continued to call by blocking his number.  I have no way to prevent blocked calls.  I wish I did.  He is anxious about the upcoming trip.     
   I don't mean for this to be a rant blog.  This isn't the whole of my life by any means.  I did not mention that I had a good workout and that my fight with diabetes is improving.  I am learning to better control my diet and medication so that I do not have lows when I work out.
I have reduced my need for the medication by half and my goal is to not need it at all.  The fact that a half dose can make me go low is a good sign.  I am getting closer to that goal. 
   I have many good people on Facebook who support me with their friendship, thoughts, and prayers, so I know that I am blessed.  And I am blessed with an AS son who never  provides a dull moment!  

     

   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.

More of Tim's photos.......For the beauty of the earth.......

I think these photos show the true heart of my Aspie son.

I think you will understand as you view them.

The times they are a changin'...

Always changing... it seems life is always changing....
and change is something Aspies have great difficulty adapting to, or at least ours does.  This story begins late one night in March when around 2 am, I heard the awfullest screeching sound I had ever heard.  I was up and hubby was asleep upstairs but he came running down the stairs.  I asked, "What in the world is that?"  He replied, "I think our van is being repoed."  Unfortunately, he was right.  They drug it away and we lost it forever.
  This is July and I am still angry at him for letting it happen.  It didn't have to happen.  He payed no attention to the warnings and they did what a business has to do to stay in business.   A friend of our AS son bailed him out and sold him an old car for $600.  He drives it to work and I sit at home with no transportation.  Yes, I am still mad.
    He started a new job in mid June.    It is a contract position that goes till Oct. and then he may be without work again.  He has not held a job for more than 2 years since 1994.  Most of them last about 3-5 months.  Contract to hire positions seldom result in hiring.  Why?  I won't go there for now. My suspicions are never par with his.

   Now we have a new housemate. 

 Not the Aspie, as most would expect, but his younger brother who lost his roommates and could not afford to keep the apartment without them.  So he is with us for a while. We hope he will finish college and get on his feet soon.
   Tim is adjusting slowly.  He has an aide who helps him with community outings who seems to tolerate him a little bit.  I subsidize his aide weekly for gas because I know he is not making much at this job, basically hoping he will not quit.  Two others have quit because he is so needy.
   My being without transportation has forced him to be more independent and use the bus system, which is great for him.  He does grocery shopping with his aid who also helps him keep his place clean.
  But good for him is not good for me.  I am stranded with no way to get out.  I have bad knees and I cannot use the bus system or walk very far without pain.  Hubby seems to like it, but I don't.  I'm stuck and he's set.  I am considering an exit strategy.