As shared previously I experienced a minor heart attack on New Years Eve. I am recovering slowly but the biggest issue has been getting and keeping my blood pressure stable.
There is nothing like a wake up call like I experienced to make you rethink everything about planning for a child or adult child with special needs. I will share more about that in my upcoming book Parenting An Adult with Disabilities or Special Needs which will be out in January 2008. I did want to share what happened yesterday.
As stated I am getting better everyday but somehow I am still a little nervous about being alone with Billy Ray for extended periods of time. I based that on the fact that I was feeling fine, watching the New Year celebration in New York on television when my husband when to bed at 11 p.m. Then at midnight the episode came out of the blue and I headed to the hospital in an ambulance. Thus, I feel pressure to have plenty of backup planning.
My husband is going to his daughter's graduation from college soon. It is about 3 hours away and he will will gone for two days. Friends of ours are going to be on call incase we need some help. They are true friends for Billy Ray but don't feel comfortable taking care of him for long periods of time.
Yesterday, I called the case manager to ask if I could give our friends his cell phone number the weekend my husband was going to be gone so that in the event of an emergency they could call him. It was my assumption that if something happened there would be "crisis beds" where Billy Ray could be placed temporarily in adult foster care until Larry got home or I was able to take care of Billy Ray again. He informed me that it would do no good to give the cell phone number to our friends. If something happened on the weekend or at night the police are to be called. They would pick Billy Ray up and put him in an adult nursing home.
That would be devastating to Billy Ray on multiple levels. First of all he freaks if a uniformed officer comes to the house. Once we had a "malicious child abuse complaint". An officer in uniform and a protective services worker came to the house. While the complaint was determined unfounded it still did damage to Billy Ray for a long tme. He thought that he was a "bad boy" and was going to jail. For years he and his deceased Dad had watched the television show Cops because it started out in our then city. The theme song "Bad Boys" has stuck in his head. Thus he believed he was going to jail and didn't understand the risk of being removed from me. He was frightened by that prospect for months afterward.
Secondly, a nursing home would not work for him even for a very short period because he requires one to one attention and would wander around. Additionally, his noise when he is confusion would like impact other residents.
That potential is very frightening. It means hastenng consideration of transition planning even if we can't get the most ideal situation for him. At least he would not have the risk of the above.
Until next time,
Peggy Lou Morgan
For a complete list of links to my other blogs and websites go to www.peggyloumorgan.com