Interview with Billy Ray on AM NW

I was looking through some things this morning and found the video of an interview I did on KATU's AMNW program in September 2007. This interview is the only one that Billy Ray has participated with me and I thought you might like to see it. We couldn't get it to upload on the blog but put it on youtube here if you want to watch it.

As some of you experience with your children, sometimes you just never know how he feels about things. KATU is the station we used to watch when we lived in the Portland area so he was familiar with most of the news anchors. One of the hosts for AM NW used to be the anchor of the early morning news and he called her "Red" because of her red hair. He was so spellbound that he didn't say a word in the interview and wouldn't talk to anyone else the whole time we were waiting.

He called my first book that "damn book" I guess because when I was working on it I couldn't do everything he wanted me to do. One day we were in the bank drive up window and he wanted to know where we were going I told him what he was going to do with Dad and that I was going to go work on my new book. He said "tv" so I asked if he wanted to be on tv again. His response was "tv- go puter, work" and he repeated it daily until the new book was finished. Apparently he liked it.

Until next time,

Peggy Lou Morgan

http://www.peggyloumorgan.com/

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 www.peggyloumorgan.com

Wellsphere - a Valuable Resource on the Net

I am so pleased to invited to participate in the Wellsphere internet community. There is so much for everyone on this site. I urge you to take the time to review the various communities and resources available there. Resources include blogs on many different topics as well as communities on more topics than imaginable.

This blog will now be carried on the Autism Spectrum community. There also communities for Down syndrome, Adhd, bipolar and many more.

Many types of experts are available for you to inquire from depending on your particular interest. You can set goals for you or for your child and they will send you tips and encouraging reminders if you wish.

Wellsphere has a new Health Maven program where you can ask questions re your various interests for you or your child. They describe Health Mavens as: “Health Maven is the term we use to describe the carefully-selected, knowledgeable, health and healthy living experts who volunteer their time to help support community members by answering their health questions and concerns. Health Mavens include doctors, nurses, psychologists, personal trainers and nutritionists, as well as patient experts and opinion leaders. Health Mavens are wonderful, caring people who are committed to helping others live healthier, happier lives.” I was very pleased to be asked to be a Health Maven for the Autism – Autism Spectrum Community. You can read more about this program here .

I'm so humbled by Wellsphere's award to me of the Top Health Blogger Badge (displayed on the sidebar).

Take a look at their site for yourself - there is truly something for everyone there.

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

We're Still Here - 12/1/08

Hi All:

I feel a bit out of touch with a lot of you. It has been hetic. For those of you who have written I'm recovering pretty well and back in the groove more and more. We are learning to deal with Billy Ray's chronic pancreatitis and doing better at managing his pain so that he is able to enjoy life so more.

Hard to imagine that Parenting An Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child’s Future (AMACOM Books) is finally coming out in January. It seemed as if it was never going to happen and now it is next month. I am even more excited because several of the ideas are even more important than I knew when writing it because of all the budget cuts and economic things going on everywhere.

I have wanted to start video blog conversations with you for a long time. In the process of figuring out how it would work we had a computer crash and had to replace a computer and now Larry is trying to figure out how to get the video editing software to work on Vista - the new computer. I'm bugging him because I am anxious to talk to you.

While the new book has much to do with adults and transition planning there are many things that you can start soon. For example, I wished I had started the form of Chronological History that I talked about in Parenting Your Complex Child (AMACOM Books 2006) much younger. The same applies to many of the skills I am teaching Billy Ray now to have his own home (as soon as we can get him more medically stable). I hope to video blog him learning new things when we get the video working.

Finally, I have gotten opportunities to communicate with lots more people through other communities on the internet which is thrilling. I am going to do posts introducing those to you within the next couple of days.

Until next time,
Peggy Lou Morgan
for a complete list of blogs and websites check out my primary website

Who Needs Training Children or Adults with Special Needs or the Community

Most parents who have children with special needs understand all too well what happens when there is confusion over “what we doing” or “where are we going”. Many of us spend hours preparing schedules or visuals to help prepare our kids for understanding what is expected. Changes can create such confusion for our child that he or can have a meltdown, sometimes in a public place, or in refusal to go or to do what is necessary. Some parents have said it feels like being held captive to our child’s reaction.

It seems there is a misunderstanding between everyone involved at times. A child may seem to be unreasonable about his need for consistency. To the outside world a minor change in schedule is a part of life. Flexibility to go with the flow of life is a good trait to survive in this hurried up world but it is not something that is natural to many of our children. A pediatric neurologist once explained to me that when you change the routine of a small child they will get hyper but if you change Billy Ray’s routine it is like taking him to a foreign country where he doesn’t understand the language. The confusion is overwhelming to him so he might flop on the floor unsure what to do next. He can literally get stuck.

Inconsistency from all parties involved impacts the situation greatly. If parents don’t adapt the plan to what will work for our child as an individual and prepare them for an event or task, it is less likely to work. I have been more aware of the fact that Billy Ray lives in a world of people who are less regimented than he needs to be and have their own lives full of demands and details. If he is waiting 30 minutes because someone is late they may have little concept of how confusing that is to him.

I wrote about the temperamental mismatch that Billy Ray and I experienced relative to organization here. Having worked through that with him substantially it has become obvious that he has somewhat of a mismatch with other significant people in his life and the community as a whole.

Maybe it is just me but it seems that the lack of understanding and actual intolerance is growing rather than the community awareness we advocate for. We have a Catholic Church getting a restraining order to keep a 13 year old boy with Autism away from their services. I have written about that on my other blog here. If even churches fail to adapt to the needs of members who have special needs how can we expect family, friends and the community to.

To compound it we have radio talk show host, Michael Savage describing Autism as "A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out". See here for more details on his comments.

Thus, the question of the post title who needs the training, the child or adult who experiences special needs or those who don’t experience special needs. The sad thing to me is that it is sometimes easier to adapt and teach people with special needs than to teach tolerance and acceptance to some who don’t have that experience.

Until next time,

Peggy Lou Morgan
http://www.peggyloumorgan.com/
http://www.lighthouseparents.com/
http://www.parentingyourcomplexchild.com/

and blogs at:
http://parentingacomplexchild.blogspot.com/
http://parentingacomplexadult.blogspot.com/

Fireworks and Autism

Hi Everyone:

Happy 4th.

I was thinking that probably many of us have loved fireworks and had to forego the tradition if our child experiences Autism.

As a child, it was great fun to go to my Grandma's in Weiser, ID because we could sit outside in her yard and watch the fireworks. It was a family tradition both for me and for Billy Ray's Dad. However, after we adopted Billy Ray we found he couldn't tolerate them at all. We thought it scared him. Since he didn't get the Autism label until later in his childhood than most we didn't understand that the noise is intolerable for many who experience Autism.

One year Billy Ray and I went to spend the day with my secretary and her family who were camping on the Oregon coast. They begged us to stay and see the fireworks from a ship on the ocean. I said that Billy Ray couldn't handle it. They told me that the noise was muffled by the water so I decided to try. We loved it. If you ever get a chance to try it for your child who can't handle the noise, it's worth the effort.

Until Next Time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/

Comments - So Embarrassing

I just came on Blogger to write a post on fireworks and found I had 14 unapproved comments. I don't know why I haven't received notices on on them and some of them are really old. I am so sorry about that. I have been recovering from my little episode on New Year's Eve (see past posts) and finishing my book so I have gotten behind on blogging but normally Blogger sends me a notice when I have comments to approve.

When I was checking them off I came as approved and came to one I wanted to reject and when I clicked to reject just one it apparently rejected the ones checked. They have changed the system on me. If I rejected your comment accidentially I am sooooo sorry please comment again and I will watch Blogger better.

Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/

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

World Autism Day

This morning I turned CNN on and discovered a program in process titled We Have Autism. We do have a tivo but I was not able to rewind to the beginning. Additionally, our satelite feed for CNN was not working well so I missed a lot with the fuzz. However, I loved what I saw and it struck me that it was very positive in terms of showing treatment and hope. There were none of the desperate feelings expressed in video such as Autism Speaks. This presentation gave real hope for meaningful lives for children and adults who experiene Autism.

A comment made by one of the mothers that once you become the parent of a child who experiences Autism you become a parent of all children who experience Autism really struck a chord with me. That has been my experience to a substantial degree. Once I became Billy Ray's Mom I found a deep concern for the acceptance and oppportunities for all children who experience special needs. We become one in so many ways.

I am thrilled that we have a World Autism Day. I hope that somehow we can spread that not just to Autism but to all who experience disabilities.

I am sorry I have been so delinquent in writing. I am physically improving from my New Year's Eve episode and getting stronger. My blood pressure is responding to medications. I am getting anxious to get out there speaking and meeting all of you again.

I will do an update on Billy Ray in the next day or so. Also on my writing and my new book.

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

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