Communication by Behavior (Reading the Signs) Revisited

This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.

I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.

When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.

Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.

Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.

As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.

Until next time,

Peggy Lou Morgan
For a list of my blogs and websites see http://www.peggyloumorgan.com/

If Only I Could Be More Like My Son

Looking at Billy Ray, now 26 years old, this morning I was thinking if only I could be more like him. He is full of life and dressed in slacks, white western shirt, and blue sport coat wanting me to help him with his belt and tie. That’s been his favorite attire since this little picture at 3 years old. On the other hand, my attire this morning consisted of a warm bathrobe, slippers.

Everyday is an adventure from the time he arises in the morning until his eyes finally close at night. While I am trying to get my acid reflux meds down and survive until I can have coffee to get my eyes working to do his blood sugar test and read my email, Billy Ray is raring to begin his day. If only I was more like my son.

I love the piece by Dr. Dennis McGuire of the Adult Down Syndrome Center in Park Ridge, Illinois, called If People with Down ’s syndrome Ruled the World. Things would surely be different if that were the case. Take a look at it here – hopefully it will give you a chuckle and a better understanding of people who experience Down’s.

Until next time,

Peggy Lou Morgan
For a complete list of my sites http://www.peggyloumorgan.com/

Don't Worry, Be Happy

I was struggling with what to title this post. Technically, I had written some of what this post covers in a prior post; however, there have been lots of news about program cuts, etc. and I felt like I needed to post again. The title I might of used sounded like the prior post. This title kept coming to mind. Can't remember if it was a song or a commercial but I remember it was a slogan from a few years ago.


In his recent program Geraldo Rivera called “The Waiting List”, Geraldo at least twice mentioned that he has been hearing folks talk about returning to institutionalizing people with disabilities. In a video on his Fox News website Geraldo talks about why he made this program and he also provides clips from his famous expose` on the Willowbrook. You can view that video by clicking here.

I know that news and talk about budget cuts is scary. The anxiety of “the nagging question” of what happens to our children when we are gone is why I wrote Parenting an Adult with Disabilities or Special Needs. With the concerns expressed by Geraldo and others we need to be proactive in terms of having people who will understand your adult child’s needs and be strong advocates when your voice is less available to your adult child.

There are things you can do in the meantime to protect your adult child. Instead of being stuck in anxiety over what might happen to your child, expend that energy on planning for him.

Some adults with disabilities are high enough functioning they could live independently but still need someone to check in occasionally. Generally, that service is provided by semi-independent living programs. If funding for those services were cut you could easily have a backup from your church or circle of friends. Instead of worrying about what might happen, think about who could provide a piece of what your child needs. It is amazing how much relief comes from being proactive rather than worrying.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)
http://www.peggyloumorgan.com/ for a complete list of websites and blogs

Great Article re Siblings of Children with Special Needs

The New York Times Well blogs had a piece on a report done by National Public Radio on Marissa Skillings, a 15 year old whose 11 year old brother, Andrew, has Asperger’s syndrome.

It is great to see stories like this one that bring out the struggle Marissa (and many others) experience as siblings yet clearly show that she loves her brother as he is. It is not easy to live with his noise and meltdowns but as she says if he was different he wouldn’t be the Andrew she knows and loves.

Since so many people with disabilities were housed in big institutions for decades society really doesn’t have much understanding about what life is like for the person or her family. As we share with the media or just friends what we experience, including the joy, it so enhances awareness and acceptance by the community.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)http://www.peggyloumorgan.com/ (for a complete list of websites and blogs)

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