Just a quick note I am back on line and connected again. Because of  Ike most of the city and surrounding counties have been with out power for over a week now  We got power back yesterday and I feel as if I have gone from the Flintstones to the Jetsons in just one day.  I just wanted to send my prayers to those of you who are still recovering from Ike. I could not have made it through this past week if my son had been with us and for the first time I was so grateful he was 2 1/2 hours away. It was very stressful for us but for my son it would have been a total disaster Here in Kentucky we had wind damage and some are still without power. We were lucky we just lost all our food. Food can be replaced but homes and lives can not.  Change is so very hard for kids and for those who are still in the process of recovery my prayers and heart are with you all.

 For all of you who have been  having breaking glass issues. When my son was young he broke every window in our home at one time or another. I had the window repair people on speed dial. He also liked  throwing glass jars in the super market. He was so very fast that he could reach a whole row before we could stop him. After thinking and watching he really liked the sound of the breaking glass  Some times my son would respond to sound faster than anything else. This did pass in time and in time we were able to do shoping with Chris without having a worker follow us around with a mop. It is important to not only look at the behavior but maybe the reason for the behavior

 We had a great week with a visit from our adult son.  He had a good week very little outburst and we really enjoyed having him home. We had planed to let him spend the night with an old respite provider that still keeps in tough with our son.  Chris had a terrible blow up he ran out of the apartment across the street and ran into a mini mart. This is the day we are going to take him back to his group home 2 1/2 hours away. The reason for this major uproar was because the respite provider did not take him out to Home Depot. The provider took Chis back to say he was sorry for his behavior at the Mini mart, since he trashed a counter during the outburst.  Chris has a very hard time waiting for anything and he is obsessed with hardware stores and just seems to loose it when he does not get to go. We could deal with these outburst when he was little but now that he is a full grown young man it is not cute and can put him in real danger. He left just an hour ago and he left in tears because he was first going back and second because of his behavior. I miss him already and sorry that such a wonderful visit ended with such an outburst, but that is away it goes with autism. Just needed to vent  to all of you who understand the ups and downs of autism.

 Thanks for the comments. We have had staff bring Chris home. They have funding for transportation 3 times a year and we have visited him twice this summer. It just seems the more we visit the more difficult it becomes for him when there is a change at his group home. He just seems to loose it when he has a great deal of change typical  autistic behavior . The guys at his group home have more ability and parents closer to the home. He calls every evening and we are working on another visit next month and bring him home for a week. It seems every time he comes home for a visit we have to deal with the adjustment back to the group home. It seems sometimes as if the more we visit the harder it is for him.

I just received a phone call from one of my son's respite workers that our son Chris is having a difficult time. He is in a group home 2 1/2 hours away. He has three other house mates that live in the group home. As it turns out all three of theses guys are able to leave the house on weekends which leaves Chris alone with staff. He really does what to be home with us and does not understand that because of gas prices we are unable to visit or bring him home for a visit as often as we would all like. Some of the staff understand and try to get him out with activities while others just sit at home with him. He loves hardware stores and that is one of the rewards that he gets if he has good behavior. Since this change with room mates  his behavior has escalated and now he is stuck in the house. I feel very sorry for our son and have tried to communicate with staff that they are setting him up to fail. Chris gets very bored and that is when things get out of control. It is just so hard to parent from such a distance. We would like to get him closer to home. The group home is not the issue but the day program. Chris went through 5 day programs here and sorry to say his history followed him and people just wouldn't accept him. To parents some times people see stuff on paper about our kids and that follows them forever.

Thanks so much for the responses. Before I became a Mom of a special needs child, I worked for about 10 years for our local Parks and Recreation. We ran trainings for special needs kids and adults for Special Olympics. We would spend weeks putting the kids in age groups and then in heats depending on their abilities so that the groups would be fair and well matched. The state meets gave kids the opportunity to have a trip away from home. I guess some things have changed but I started Chris when he was about 6.

I also have a physical disability myself and I went to a summer camp for kids with special needs. The camp sessions we divided into groups of kids with physical disabilities and then those with more mental disabilities on different times of the summer. I went to school with "normal" kids so being with others like myself was very important. I went for two weeks every summer, made life long friends, got my first paid job there and met my husband of 34 years. Had it not been for my connection with my disabled peers I would have never felt equal. I went on to get my Masters in Social work and my biggest and greatest accomplishment was becoming Christopher Mom. I agree with mainstreaming kids as long as it treats our kids with respect and dignity and makes them feel a part of the group. When Chris was 10 we moved him to a special needs school. Mainstreaming just did not work for him.  It was the best move we made for us and our son. It was very important that our son have success. Most of the teachers he had before we moved him had little or no special education training. He had a aide and he spent most of his time on the side lines. He spent two years with limited goals on his IEP. I do not care if he can tie his shoes, thank God for Velcro.   read more »

As my son ages out of programs ( he is now 28) we are proud of Special Olympics. He is living in a group home 2 1/2 hours away from us. We had difficulty finding a day program to accept him due to difficult behavior. He called us to let us know he got a silver metal for 50 meter run. One of his workers talked to us to let us know how well behaved he was during the 2 day state events and how much he likes our son. We were so pleased that it brought me to tears. We had gone though so many workers and teachers and so called "professionals" that seem to bring out the worst behavior in our son. Chris has a unique ability to read people. You must gain his respect and let him know that when he has a melt down that you are in control and help him regain his composure. If you loose it so does he. The worker stated that he has great respect for our son and has had no difficulty with his behavior as other workers in the home have in the past. I was so please with the report and so pleased that others love him as much as we do. It is also nice to know that Chris can participate in Special Olympics as long as he is able and won't age out.

Our son lives in a group home 2 and a half hours away. He is now an adult and seems to be handling the move to the group home.  He will be there two years in April. He was more than we could handle as far as his behavior and we made the very difficult decission to place him in the care of others. I still worry about his care because he has limited verbal skills and he seems very aggitated on the weekends. I know my son well and know that weekends are hard due to no school or day program. He loved school and was heart broken when he could nolonger attend. We went through a number of adult day programs and due to the fact of both elderly and disabled were mixed  our son did not last long and was asked to leave.  We went through about 4 day programs and in home care.We had to move him out of our city in order to find a day program. Once I developed breast cancer I knew we had to find our son a place where we would not have the major task of his daily care. We have him visit at least three times a year but I still worry about his care. He calls every evening and sometimes I hear the anger in his voice. I would love to have him closer to home. I worry because he just goes into a rage when he feels that it is time for him to have a home visit.  We need more supports for when our children are adults and the numbers are growing. Will any of us have the needed private or governments supports for the long term care of our loved ones with autism ?  

 As my son goes into adulthood and we are getting older, I am trying to be a responsible parent.  I have set up our wills and have found no one to accept the overseeing of my son. I am an only child and my husbands family were not very supportive of our adoption of Chris so I know none would step forward. My son is an only child. He was a difficult child to raise and we thought of adopting again but, Chris took so much of our time we did feel it would  be fair to bring another child into that kind of turmoil.  Since my own battle with breast cancer I have become more aware of how time is passing . My mom has set up her will and since she is an only child everything has been left to me. I have gone to a workshop on setting up a trust. I have read that my son could lose all his important  supports if he received anything from my Mom's estate. I know it would be the same if we left him our estate. My main concern is that my son be well cared for when we are no longer here. We are not wealthy but have a home, life insurence ect.  I will find someone to help me with the trust but my only stumbling block is to find some one to over see the funds. We have some close friends but they have children of their own. I will continue to focus on getting things set up but I have great concern for my son when we are nolonger here to make sure he is being cared for.      Any one with any ideas are welcome

This is the first Thanksgiving that our son has not been home. He is living in a group home 2 1/2 hours away and we decided to have him home for Christmas longer. Holidays were always hard for Chris. He never played with toys ( took them apart yes but play with them not a bit ) He loved power tools but at a young age I Think he was about ten at the time we did not feel safe with him and a real power tool. We got him a tape of the New Yankee Workshop and we watched it at least 20 times. He also loved wallpaper books, so that was an easy gift. As the years went by we added to the wallpaper book collection. My son has a wonderful memory. I had run out of wrapping paper and took a page from one of his wallpaper books. He had about ten so I did not think he would miss it. ( boy was I wrong ) He came to me and had the book open to the page and asked " where is it " I told him I had to use it for a gift and he showed his discomfort by hiding all ten of his books under his bed. I missed him this Thanksgiving but understand that it is time for me to break the apron strings. My husband knew it was time a few years back but I did not feel anyone could care or understand our son like we could. I am pleased to say I was wrong. He is now a wonderful 28 year old young man doing well and learning to live as independent as possible. My best wishes for a wonderful holiday to all families here. Hug your kids they grow up very fast

 As a parent of a young man with autism, I can not tell you how many times well meaning adults made rude comments when our son was having a melt down in a public place. I think today it may be a bit easier as the word Autism is more well known. We adopted our son when he was four and when he was small it was a bit easier to get him out of the store quickly before things went flying. Now that he is 5'11 and 165 it is a bit of a challenge. We have had run ins with nurses who have written down our license plate and turned us into child protective services, police officers, etc. I am a firm believer my son has the same rights as anyone but with so many bad experiences we had become a bit gun shy at taking Chris out. We learned to scope out places before taking Chris. We would talk to the store managers and restaurant  workers about our son and when we would be bringing Chris.  We became more at ease and with us being more at ease  so was Chris. He loves to go to the big hardware stores and using this idea he has made some great friends. Our kids and  adults have a right to be out in public they and others just may need a little support along the way.

Just wanted to note that autism does improve with time and things get better but the autism really never goes away. Every child and adult is different. My son Chris is now 26 and living in a group home 2 1/2 miles away. He is doing well but it was a long journey to get where we are today. Our son has limited language and still has angry outburst where his daily routine is changed. It was not so hard to explaine when it was young but now that he is an adult we have had a number of run ins with law inforcement when he has been out of control. Too all you parents of young children please plan for your children with autism as you would plan for your other children who do not have autism. My son to this day says that he had a "very sad day for Chris" at his last day of school. We need programs for our young children but we also need long term programs for our adults.