Wednesday, December 03, 2008

Planning for and Protecting Your Child or Adult Child Who Experiences Disabilities or Special Needs

I have been thinking about planning for and protecting my son, Billy Ray, even more lately because of my recent health problems while I was writing my second book. The stress of the present economic situation adds to the concern. Budget cuts are threatened in many areas. That adds another dimension to “that nagging question” (what will happen to my child when I can’t be there for him). Funding for programs that are working for him may be cut, facilities and homes may close due to economic constraints. Even a more independent adult child may have difficulty getting the things he needs in bad economic times. I find myself wondering what if this economic downturn happened after I can’t change planning.

We are not the same close knit society portrayed in programs like Little House on the Prairie and other television programs or movies. Neighbors were there for neighbors and could be counted on to care for children if something happened to their parents. Families are more mobile and lead busier lives so they are not always close. We have learned to depend on the government rather than each other. As we explore what the government will really be able to do it gets scary.

Sometimes there is great resentment on the part of some taxpayers about spending money for special education and other programs for people with disabilities even when times were not as difficult as they are presently. I believe that is because so many of our children are never really known as individuals with strengths and weaknesses like everyone. The more community awareness is improved the more accepting society is of the need for programs and other assistance.

Community awareness that actually brings change is that which helps our children to actually be known and understood to become a part of the community and have others involved in their lives and vice versa. As our children are known and understood protests about their need for programs and other adaptations are reduced. Sometimes it is the community needs who needs training as I wrote here.

It would be easy to become paralyzed with fear for our children. There is peace in knowing that you have done everything you can do to assure a happy and secure life for him or her. In my new book, Parenting an Adult with Disabilities or Special Needs and in future blog posts and video blog, we can share the journey together to protect our children or adult children. There are so many things that we can do such as:

· Assuring that he or she has friends who will stay involved.
· If appropriate, training her to be a self advocate.
· Having various people involved in her life who will maintain different roles.
· Maintaining her “story” so that she can share her memories and history with new people and old friends.
· Appropriate estate planning documents.

That is only a few ideas but it sounds like it will take a lot of energy. Worrying about your child’s future takes a lot of energy too but the peace that comes from planning for and protecting your child is revitalizing and reassuring.

Until next time,
Peggy Lou Morgan
For a complete list of my websites and blogs see

Thursday, May 01, 2008

Frightening Realities

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

Monday, January 07, 2008

That Nagging Question Reappears

I have been working on my new book about transition planning. One of the chapters is titled That Nagging Question (what happens to my adult child after I'm gone?)

On New's Year Eve I started having breathing problems and had a horrifying ambulance ride. Needless to say no matter how prepared I thought I was that nagging question haunted me all night. They think I had a small heart attack and may have some blockage. As a result, I have been thinking more things through and making notes which I will share with you here as I can and in my new book.

At noon today I have a stress test and another test tomorrow. I will try to post how we are doing on my Lighthouse Parents Blog. If I end up having surgery my pastor is going to post on that blog to keep folks updated on how we are doing.

Until next time,
Peggy Lou Morgan
For a complete list of my sites go to