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Monday, August 31, 2015

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.

Friday, August 28, 2015

   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.

Friday, August 14, 2015

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!

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Hi, I am Teri West, a wife, retired home schooling mom, 2nd year breast cancer survivor, crafter, musician, and primitive artist living and working in Kentuckiana, (the Louisville, KY and S. Indiana area). My family heritage is in the hills of Eastern Kentucky and Southern Ohio. I grew up in Louisville, Ky and attended Eastern KY University and the Southern Baptist Theological Seminary, graduating with degrees from both in education. I married in 1979 and have three grown children, one a degreed artist, one a techie/artist, and an autistic one, a photographic artist. Hubby is a techie. I work out of my home creating primitive items for friends, family, and you. My loves are American folk music, primitive crafting, and American folk art which all emanate from my devotion to my faith, family and friends. I belong to the Louisville Dulcimer Society and I play mountain dulcimer, guitar, violin, native flute, tin whistle, bowed psaltry, and ukelele as well.