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!