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 www.peggyloumorgan.com

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 www.peggyloumorgan.com

We're Still Here 11/09/07

While it may not seem obvious, because I haven't posted for a while, I am working on support for parents of adults with special needs. AMACOM Books has given me the go-ahead on a new book, tentatively titled The Never Empty Nest, which deals with adults. More to come on that later.

In my last post I talked about the importance of having someone to "hold the story". I mentioned one of my step-granddaughters who seems to have a close relationship to Billy Ray. Again, I want to say that he has good relationships with others in the family but this one just seems a natural. Elora is also older.

Elora was here for a long weekend so I got a chance to talk with her about my thinking that she would hold Billy Ray's story and what that would mean. She loved the idea and I thought showed great understanding of it. I noted that she involved Billy Ray in activities even more than usual. He is very responsive to her and it works well. Above are two pictures of them making ice cream punch together.

I am working on an article about teaching younger kids and adults to simplify housekeeping tasks using products like Swiffer. I will post a link here when it is on my website.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Establishing Relationships That Last for Your Adult Child When You Can't Be There

You may have noticed I haven’t written much since starting this blog. To be honest, I am struggling a bit trying to decide what to put on this blog and what to put on Parenting a Complex Special Needs Child. My big thing has always been preparing for adulthood and I have written about it extensively. However, sometimes you have to start where you are. Thus, today’s blog.

As parents we expect to around to be a support when our adult children go into an apartment or program. We may not be able to do that. I have a whole chapter on estate planning in my book because I often became guardian or trustee after the parent had died or became too ill to advise in the care and planning for their adult child. I created a form for medical and development history, visuals and documents about the routine and care required for my son so they are available to someone in the event I am no longer able to communicate his needs to the appropriate person.

However, last summer I had the privilege of sitting in several of Dr. David Pitonyak’s sessions at a conference where I was speaking. It gave me real pause to take another look at planning. Dr. Pitonyak kindly puts the handouts for his various presentations on his website. You will find them great reading.

One of the things that hit me hardest was Dr. Pitonyak’s statement “Imagine if the only relationships you had were people who were paid to be with you?”

I don’t mean to imply that every family who has a member with disabilities is isolated; however, many are. Some marriages become real teams and others fall apart when confronted with parenting a child with special needs. Long-term friendships are hard to maintain with the responsibilities we carry. Depending on your child’s situation it may seem overwhelming to go out in the community so isolation becomes the norm.

If your adult child is in a group home or some kind of facility it would be easy to say he or she has plenty of friendships among staff or fellow residents. In The Importance of Belonging, Dr. Pitonyak says: “Although paid staff can be friendly and supportive, they frequently change jobs or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone.”

Fellow residents may also be short-term or your adult child may be moved to another placement. These relationships are not necessarily enduring.

Friendships for your child or adult child can be established in much the same way you develop friendships. You meet someone with similar interests or background. If he or she loves to bowl spend time at the bowling alley. Other people there doing what they love get used to see you and your child there. Comfort level usually increases and sometimes relationships ensue. Whatever he likes to do spend time in a regular setting that enables him to do what he loves and to meet others with that same interest.

Some relationships may come from within one’s family. An example for Billy Ray is one of his “neeses” (nieces). He has good relationships with many of his step-nieces and nephews. One is especially close – if I am talking to this step-granddaughter on the phone and she hears Billy Ray in the background she will say “is that Uncle Billy Ray? Let me talk to him, it will help.” It does help calm him to talk to her in person or on the phone. I have noticed that he interacts with her more than with most people. You can tell he makes an effort to do that because she is important to him.

I was reminded of the importance of common ground in relationships recently when we spent a weekend visiting at my brother and sister-in-law’s house. My brother remarried a few years ago but we haven’t had a lot of opportunity to get to know his wife, Meri. She is a social worker so responses to Billy Ray were probably more natural than they might be for some. However, besides being very good with my son, they clearly shared a mutual interest in dogs. The picture shows Meri sharing her dog with Billy Ray.

Dr. Pitonyak also talks about the importance of having someone who holds a person’s “story”. I plan to write on that in another post. However, I wanted to say that having relationships that endure after parent(s) are no longer available, especially if that person understands what life was with parents and really knows a person is vital to their security and happiness.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting A Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Share Your Adult Placement Success Stories

A comment on the last post must have been reading my mind. I have gotten several email from parents who say that their adult child’s group home are very caring and try very hard. I have also gotten email with horror stories. I admit that I can be a little bias on out of home placements. I was just thinking to request your success stories so we were fair and balanced, as they say.

The success of placements seem to have to do with not only the competence of the facility but the ability of the complex adult to tolerate a group type setting. Billy Ray has been in two different settings that didn’t work. I have been wanting to share that experience but don’t want to imply that all placements result in horror stories. So as the commenter on the prior post asks let’s hear about some success stories. You can either email with them and I will post with or without your name (let me know which you wish) or you can leave them as comments to this post.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

What Empty Nest

It seems only yesterday that Billy Ray came to us as a bouncing, bubbly 15 months old. Next week he will 24 years old. The "nest" as they say is not empty by any means. He still needs as much daily care and advocating as he did as a child. He still can't be left alone.

In my blog, Parenting a Complex Special Needs Child, we talk about children and many issues apply to adults too. However, it seems important to separate them now as we transition in adulthood. You may want to check out that blog as well because there may be helpful things for your situation and you can see how we got to this point.

It is my hope that we as parents of adults with special needs can chat about our experiences and support each other in this exciting and difficult time. Please do comment and share how your experiences differ from Billy Ray's and mine. That is not only interesting to me but may help other parents at this juncture in the journey with their adult child.

Not all adults can function within existing systems for adult support. Some can function great in assisted living programs, others can live independently or in group homes and still others will not tolerate a group living situation. Whatever the situation there are challenges that we as parents must assist with. In addition, there is the giantic question about what happens when we as parents are no longer able to assist our adult child.

Let's share our journeys and be a support to each other along the way.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group