Post by sue2ndtimemom on May 25, 2012 3:37:16 GMT -5
I feel weird posting here because of the circumstances surrounding my 9 yr old son's death. I need the relief of sharing it even though I'm afraid of negative feedback. My son David was 9 yrs old and all of his life we thought he had a severe form of Autism. He was found, in his autopsy, to have brain malformation which caused Autistic-like behaviors. He was non verbal, not potty trained and had no self care skills. He could look you in the eye and speak volumes though. He was so very sweet and cuddly and had a huge wealth of compassion 
. He had a lot of erratic behaviors and the last few years we couldn't take him out anywhere without him having a huge meltdown. He was very volatile and would brake things and put himself into unsafe situations. It required someone to be watching him at all times and was a definite "2 person" job. My husband and I adored our sweet David and his brother who is still with us. We loved to hang out with David and cuddle him and laugh with him. He loved the "Wiggles" (an Australian kids band) and would rock out every time we watched the videos or listened to the music. In 2009 my husband had a stroke and was in a nursing home for 16 months. He lost the use of his right side and is wheelchair bound. I had no one who could help me with David and I made tons of phone calls to see what help was available. Most of our relatives are out of state and my Father-in-Law is 81 yrs old and was unable to handle helping with him. After 5 weeks of trying to get help and being unable to get any, I called the Regional Center to help me place him in a group home till I could get some help. I was unable to care for him alone due to my many health issues, and the need for him to be watched every second of the day. I was also raising his older brother who didn't require non stop supervision. While my sweet son was in the 3rd group home (most group homes weren't equipped to handle someone with the extreme behavioral issues he had) his medications got changed around and he died of severe dehydration :,(. He was only in the 3rd group home for 6 weeks and lost almost 20 lbs!!! At the other group homes I would bring David home several weekends a month for 3 day weekends, but at this group home I wasn't allowed to see him for 5 weeks so he could acclimate to his new surroundings 
. I had him home for a visit a week and a half before he died, and I asked the Regional Center case worker if she didn't find it alarming that my son had lost so much weight during that 5 weeks. The lady who ran the group home said it was because they went hiking all the time and the case worker was satisfied with that response. After reading the autopsy report, I found out that she had likely locked him in the room the night he passed away and he was unable to get any water. He had almost no food in his system. She was a vegan, and I would bet she tried to feed him that food and let him starve when he wouldn't eat it!!! I'm so mad and sad by all this!!! My poor baby's last night was h*ll and he was alone!! I play over and over and over, in my head, the memory of how sad he was to go to the group home and how heart breaking it was to all of us. My husband hadn't seen him in 6 months before he passed away because every time I took him to the nursing home to visit his Daddy he would flip out and scream on the floor . I am suffering from horrible insomnia and huge anger issues. I just hate that I couldn't save him. I miss him so bad my teeth ache!!! I have never met anyone who has gone through anything remotely similar to this so I feel very alone in this. My husband was able to come home and now sleeps on a hospital bed in the living room. He misses David horribly too!! I have a million memories of his smile, his tears, his laugh, his hugs and all the times we spent cuddling. Thank you for letting me share this.
. He had a lot of erratic behaviors and the last few years we couldn't take him out anywhere without him having a huge meltdown. He was very volatile and would brake things and put himself into unsafe situations. It required someone to be watching him at all times and was a definite "2 person" job. My husband and I adored our sweet David and his brother who is still with us. We loved to hang out with David and cuddle him and laugh with him. He loved the "Wiggles" (an Australian kids band) and would rock out every time we watched the videos or listened to the music. In 2009 my husband had a stroke and was in a nursing home for 16 months. He lost the use of his right side and is wheelchair bound. I had no one who could help me with David and I made tons of phone calls to see what help was available. Most of our relatives are out of state and my Father-in-Law is 81 yrs old and was unable to handle helping with him. After 5 weeks of trying to get help and being unable to get any, I called the Regional Center to help me place him in a group home till I could get some help. I was unable to care for him alone due to my many health issues, and the need for him to be watched every second of the day. I was also raising his older brother who didn't require non stop supervision. While my sweet son was in the 3rd group home (most group homes weren't equipped to handle someone with the extreme behavioral issues he had) his medications got changed around and he died of severe dehydration :,(. He was only in the 3rd group home for 6 weeks and lost almost 20 lbs!!! At the other group homes I would bring David home several weekends a month for 3 day weekends, but at this group home I wasn't allowed to see him for 5 weeks so he could acclimate to his new surroundings 
. I had him home for a visit a week and a half before he died, and I asked the Regional Center case worker if she didn't find it alarming that my son had lost so much weight during that 5 weeks. The lady who ran the group home said it was because they went hiking all the time and the case worker was satisfied with that response. After reading the autopsy report, I found out that she had likely locked him in the room the night he passed away and he was unable to get any water. He had almost no food in his system. She was a vegan, and I would bet she tried to feed him that food and let him starve when he wouldn't eat it!!! I'm so mad and sad by all this!!! My poor baby's last night was h*ll and he was alone!! I play over and over and over, in my head, the memory of how sad he was to go to the group home and how heart breaking it was to all of us. My husband hadn't seen him in 6 months before he passed away because every time I took him to the nursing home to visit his Daddy he would flip out and scream on the floor . I am suffering from horrible insomnia and huge anger issues. I just hate that I couldn't save him. I miss him so bad my teeth ache!!! I have never met anyone who has gone through anything remotely similar to this so I feel very alone in this. My husband was able to come home and now sleeps on a hospital bed in the living room. He misses David horribly too!! I have a million memories of his smile, his tears, his laugh, his hugs and all the times we spent cuddling. Thank you for letting me share this.
