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Wednesday, August 24, 2011

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.

Thursday, August 18, 2011

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.  

 

Sunday, January 2, 2011

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.

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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.