Parenting Your Complex Child (the Book) is Finally Available

We have talked about it and dreamed about it for some long (or so it seems) but today Amazon and Barnes and Noble both say they ship in 24 hours. It feels a lot like having a new baby.

I just met with Alandra Johnson of The Bend Bulletin for an interview. She asked me why I decided to write a book. The truth is it was never my intention to write a book.

Nothing was working for Billy Ray. We had tried a residential treatment program to re-establish meds. School didn't work . The story is told more fully in the book but basically I just needed to go to a very specialized school (where Billy Ray was the head teacher and I was the only pupil in the beginning).

I remember saying to Billy Ray as though he could understand fully "it seems like no understands but we are going to figure this out if you help me." After much experimentation and frustration for both Billy Ray and me we began to discover things that made day to day life better for the whole family especially Billy Ray.

Then we had to learn how to regroup in terms of advocating so that we could demonstrate what we had learned about Billy Ray to those in a position to help educationally and the medical professionals. It was another phase of trial and error.

As Billy Ray made progress, I began to get encouragement from many of the professionals involved to write a book or speak to parents. I was initially hesitant because of the time involvement in just taking care of Billy Ray day to day. However, I started writing on his old computer at night when I had to be in his bedroom so that he would stay in there until he hopefully went to sleep.

I knew that with my time constraints I would have to have an agent. We subscribed to Writer's Market online to figure out how to do that. I read that it is harder to find an agent than to find a publisher. It took six months and a lot of polite (or not so polite rejections) to find my agent, William Brown.

William helped me hone a book proposal which he editor shopped for over a year. He found me a wonderful publisher in AMACOM Books. They have been so patient and shared my goal of sharing with other parents.

It started out to be only for parents but amazingly there is interest from some professionals as well. I was honored by comments from Billy Ray's medical provider in an email the other night: "I read two more chapters...very informative. Many things I really never thought about. I think the strength of your book is the perspective it delivers. It is truly impossible for people to consider the challenges you face."

The most rewarding comment so far was from Kate Crow, a genetic counselor, who wrote the foreword. She told me that she read the manuscript through twice because it helped her to understand the families she worked with better.

The most important thing for me in writing it was that I not tell other parents exactly what to do for their child. Books that told me exactly what to do seldom worked for Billy Ray. Each child is unique. I wanted to share methods for adapting and customizing a life for your child.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Billy Ray "Made My Day" (of a Stranger)

Yesterday Billy Ray went to see his medical provider, Brice Stanley, because of another case of folliculitis (described on my website). While I was registering him at the desk, Ron, his support staff, noticed that the picture I had taken for a prior blog post was up on the wall of the reception area. Billy Ray, not feeling too well, was not very impressed but did eventually get up to look.

As you can see here, it is not the best picture of either of them.

As we were walking out after having Brice work on Billy Ray's folliculitis to drain several of them, a lady tried to stop Billy Ray to make him look at the picture. "That's you" she said. "Did you see they have your picture up with your doctor."

Billy Ray was not his usual social self. He called "Mommie" but did go with the lady and me to see his picture with Brice. I then hugged him and told him to go with Ron while I dropped off his presription to be filled.

The whole interaction between Billy Ray and the lady was only a minute or two but she was elated. She said "it just made my day to meet him". It pleased me that even on a bad day he can touch the lives of those he meets.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Website
Lighthouse Parents Website
Yahoo Group

Thanks to Temple Grandin and Others Who Shared

It is another one of those mornings – the kind that used to totally freak me. Billy Ray has been yelling, bouncing and sometimes screaming for an hour. Sometimes it seems that my head sends off signals when I have a migraine and that stirs the reaction in Billy Ray (smile).

Yesterday I mentioned another mother’s reaction to her child’s noise in my Amazon blog. This morning listening to Billy Ray and trying to deal with my own headache I was thinking about the time when Billy Ray changed from a quieter child. As shared before, even the noise from an air conditioner or fan bothers me at times. Adjusting to the ear piercing sounds Billy Ray now makes has been an adjustment.

A search on Amazon this morning revealed 1,467 books for the key word Autism. That wasn’t the case when we first needed to learn about it. We found Temple Grandin, Ph.D. first in articles on Autism Research Institute’s website and then we found her books. I told Dr. Grandin that I felt like I had been educated in the school of Temple Grandin because it was the starting point in helping me to understand Billy Ray.

Eventually we found other writers who write about their own experience with Autism such as Sue Rubin and other writers who can share their personal experiences. The library on Autistics.org has multiple articles that are very helpful.

Billy Ray is not exactly like any of these writers but the insight they bring has helped me to get a glimpse into his thinking and needs. It has been the jumpstart we needed to get started adapting to Billy Ray.

This morning thinking about how much easier it is to tolerate Billy Ray’s noise and to work through it (figure out whether he needs something or just needs to get it out), I just felt like expressing appreciation to Dr. Grandin and all those who have shared.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group

Feeling Sorry for Myself...Snow, Snow Go Away

I try to keep the focus of this blog on parenting a special needs child. I know that this is why you came. Today I am too busy feeling sorry for myself to have much to share about parenting.

Yesterday when Larry and I went to Bend for a Costco trip to pick up all the things Billy Ray was out of, it was nearly 60 degrees according to his truck. Most of the snow was gone from our yard and driveway. It was spring and I even wore sandals for the first time.

It is March 25th. You are not supposed to see this view from your front door. Yes these pictures were shot this morning.

My parents moved to Portland, Oregon from Weiser, Idaho when I was seven years old. We had experienced snow in Idaho so I didn't get all excited about not having it in Portland like the natives did. Portland was not as experienced at dealing with it when it did show up and it would freeze more easily. It became more of anonyance to me than the fun from childhood.

Larry loves the country and the mountains and Billy Ray and I love Larry so guess where we have lived since being with him. Billy Ray loves the outdoors and animals but hasn't been very impressed with snow. Larry has turned Billy Ray into a country bumpkin. This city girl has come along kicking and screaming.

Billy Ray loves the country but is not impressed with the snow. It doesn't bother him but it is not something he wants to go out and play in.

I love the people of Central Oregon so much. You couldn't ask for a better place to live from that perspective but I hate the snow!!

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Life is What Happens..That You Didn't Plan

I am working on a post for Monday’s Amazon Blog on acceptance being a process. I don’t want to give away the post but I can’t resist sharing part of my mind’s ramblings with you today.

Billy Ray tends to have one movie at a time that he will watch over and over so I memorize them too (because I am in his bedroom while he watches as he goes to sleep). The one he is watching most right now is my old copy of Mr. Holland’s Opus with Richard Dreyfus. I loved that movie partly because it was filmed in Portland, Oregon, my hometown. Billy Ray loves it because of all the “oldies” songs and because he directs the orchestra with Richard Dreyfus (Mr. Holland).

In the movie Mr. Holland is singing the John Lennon song “Beautiful Boy” to his son. There is a line in the song that says “life is what happens to you, when you are busy making other plans.” I think that is true of most of parents of children with special needs.

Raymond and I did ask for a child with Down Syndrome when we adopted Billy Ray. Thus, I can’t say that his special needs were not a part of my “other plans.” However, I wasn’t prepared for him to experience ADHD, Bipolar and Autism. His experience of that has definitely changed our life. Had his experience been different I wouldn’t have had anything to share with you here or in my book.

I recently had some contact with Marty Omoto who shared how he went with his older sister as classroom assistant in her special education classes during junior and high school. Marty is now Director of California Disabilities Community Action Network. His sister’s experience surely had an impact on his career.

In her endorsement to my book Ruth Crist Sullivan, Ph.D. refers to her self as “parent-cum-professional”. Dr. Bernard Rimland, founder of the Autism Association of America and Director, Autism Research Institute is the father of Mark who experiences Autism. Charlie Fox, Special Ed Law Blogs, is the father of child with special needs and specializes his law practice on special education law.

I could give many more examples of people whose lives have been changed because of their relationship with someone who experiences special needs. Plans are changed and life takes on different meaning.

I can’t speak for anyone but myself. For me, being Billy Ray’s Mom has changed me to a profound degree.

Until next time,
Peggy Lou Morgan
Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog

Dual Diagnosis - Down Syndrome and Autism

I have been getting email lately from parents who are having difficulty getting professionals to accept the dual diagnosis of Down Syndrome and Autism. We had that same problem; however, our situation was complicated by the fact that Billy Ray experienced a series of severe seizures believed to be caused by a medication side effect.

The Down Syndrome Association of Victoria has a very good article on Autism in children with Down Syndrome. The article explains why it is difficult to diagnose Autism in Down Syndrome and gives suggested approaches. Two points in the article hit home relative to our situation.

While I had worked with many persons experiencing Down Syndrome prior to adopting Billy Ray, I had never worked with anyone as young as he was (15 months old). As a first time mother and without experience what babies with Down Syndrome experience, I assumed most of the things Billy Ray manifested were primarily related to Down Syndrome. I knew little about Autism at the time. Thus, I did not report changes to his developmental pediatrician. Additionally, he was experiencing multiple ear infections and other childhood illnesses which could have masked our recognition of Autism.

When the Autism evaluation was done on Billy Ray at 16 years old, questions about his early years revealed that early Autistic symptoms had been there but unrecognized.

The article suggests that once the diagnosis of Autism is established education and treatment approaches for Autism should be adopted and Down Syndrome should become secondary. I absolutely agree with that.

In the early years when Billy Ray was thin and an a sick little guy he was thin. The physical characteristics of Down Syndrome were not as apparent. When he began putting on more weight they were more obvious. Thus, when we go out in public people stereotype him as a person with Down’s. I like to say Down’s is the least of his problem.

That may sound as if I am minimizing Down Syndrome. That is not intentional. It is just that I have known and loved so many people who experience DS. While those I have known are all unique individuals, overall I have found the ability to love unconditionally and accept life as it comes, a common trait.

Autism as Billy Ray experiences it brings substantially more challenges than we had before the development of increased Autistic symptoms. I think the biggest thing I notice is the need to be on guard that things are set up for his comfort level, routines are maintained and communication tools used to the fullest extent possible. Gone are the more relaxed days that I experienced when Billy Ray was younger or with my former foster children who experienced Down Syndrome without Autism.

The stereotype that people with Autism can’t experience relationships or show affection is wrong. Many of our Autism Bloggers have shared photos on their blogs of their children making eye contact and having relationships with special people in their lives. I think it is easier for someone who experiences Down Syndrome to have those special relationships with people. My experience with Billy Ray is that he loves and bonds deeply but probably does less of it than other people I have worked with who have the single diagnosis of Down Syndrome.

Both disabilities are challenges without the combination. My observation is that the combination adds to their uniqueness. Some who experience the dual diagnosis will have traits more common to one diagnosis and some to the other.

Frequently when people ask me about Billy Ray’s diagnoses I like to laugh “Billy Ray is Billy Ray”. I am joking but very serious too. Because of the multiple diagnoses Billy Ray experiences including, but not limited to, Down Syndrome and Autism Billy Ray is a very unique person.

Until next time,
Peggy Lou Morgan
Yahoo Groups
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Amazon Blog

We are Family... Our Common Bond

Families who experience disabilities are not limited to our little rural community or even the metro areas of the United States. In her post My Favorite Blogs , Kristen (Mom to Mr. Handsome) writes:

“These are the current blogs that I try to read everyday. I guess you could say that they are the best support, outside of my family, for the world that I live in called motherhood and also the world of Autism. Thanks to all for their continued wisdom, incredible insight into each of your lives and beautiful stories about your children. I don't know what I would've done without all of you.”

I hear from parents in other parts of the world that they having some of the same struggles to get services for their child as we did for Billy Ray who is now an adult. It is a pleasure to have something to share that might make their struggle less than ours was.

In many ways our “family” of bloggers and internet buddies who may never actually meet each other understand more than our closest family members.

As I shared in my book, one of my favorite uncles came down on me pretty hard one day because he felt I sacrificed my life for Billy Ray. Not every family member can put themselves in our shoes and understand the choices we make for our children. They may see the sacrifice and not the joy we experience in little ways with our children.

Family is not just about DNA and common last names. We are family because we understand each other better than others could possibly understand.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog

Rapid Cycling of Another Kind

Billy Ray is experiencing an interesting kind of rapid cycling. You usually think of rapid cycling in terms of bipolar. It can be from one extreme (highs and lows) to the other quickly – thus the term rapid cycling. In the past few days we have noticed a type of rapid cycling that I am not sure is related to Bipolar.

The weekend started out with morning agitation, which is usual for a Saturday morning because his support staff has days off. We got past that, did his blood sugar test and gave him his first set of meds (Nexum for Acid Reflux has to be given separate from the medication for his Bipolar and before he eats).

He choked on his very first bite of breakfast. Choking is a pretty regular occurrence but this was more severe than we generally experience.

Billy Ray’s Ear, Nose and Throat specialist taught me to do the Heichlein if I ever had to. However, I am not sure I could ever do it. Some children cry and run to Mom when they are sick or hurt. From the time, Billy Ray was a toddler he got mad if he fell or got hurt. He is not able to understand pain as coming from within. If he hurts someone is hurting him and it is usually believed to be Mom. If I try to rub his back or wipe his face while he is choking I generally get punched. He may take off in anger because he is choking. I am not sure even a burley EMT could do the Heichlein.

After we got past the choking, he finished breakfast and I gave him a Nebulizer treatment. He was watching a movie in his bedroom while I went to the bathroom. When I came back he had incident made his bed and placed his stuffed animals on it. He was very proud of himself and I praised him enthusiastically.

About 10:30 a.m. there was episode of agitation/behavior that had no obvious cause. We have learned that when it comes on that quick and doesn’t seem to be about anything it is generally physical.

That afternoon we took a ride to the little town of Sisters, Oregon. There is a discount leather shop there where nothing is over $20.00. Billy Ray enjoyed the ride and the shopping.

He has been going from those cycles and back and forth. One minute he is sharp as a tack, doing activities that are very independent and the next he is clingy or agitated or can’t remember that he has eaten or is confused as to time of day.

We are enjoying those special moments of independence and success. Overall he seems to be in a good place with momentarily lapses.

We did have to put him back on antibiotics for more of the skin issues he seems to be getting with increasing frequency.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog

Alzheimer's Like Dementia in Down Syndrome

I didn’t talk a lot of about the dementia in Parenting Your Complex Child because it is not our main focus in the book. Since some have asked but Billy Ray’s high degree of medical issues and behavioral changes, it seems important to discuss it now.

The first time I heard of a possible connection between Down syndrome and Alzheimer’s, Billy Ray was 9 or 10 years old. It was a scary possibility but he was fairly high functioning and a happy little boy. A year or so later he handled the death of his adoptive father better than I would have ever expected.

As I have shared here and in my book he probably experienced the dual diagnosis of Down Syndrome and Autism in his early years. I was not as familiar with Autism in those days and related much of the functioning and behavior to Down Syndrome. I didn’t report it to the developmental pediatrician or we might have gotten the dual diagnosis much earlier. However, after he experienced a series of severe seizures (believed to be a medication side effect) at 14 years old more severe Autistic like symptoms manifested within the next few months.

It is possible that those symptoms also masked symptoms of dementia. Our first awareness of dementia were pretty severe to have been the start. His adoptive father died when he was 11-1/2 years old. We met his stepfather about a year and a half later. At 16 years old, he totally transferred all memory of his deceased father to his stepfather. He called Larry by his deceased Dad’s name and talked to him about working on the highway (his Dad had been a highway construction inspector) even he knew very well where Larry worked and had visited his job. Other functioning deteriorated.

It has been a bumpy process. He lost some skills but we have been able to restore at times. About six months after the period where he didn’t know his stepfather, his memory just improved without notice and his relationship with Larry went back to where it had been initially. There are times his memory is sharp as a tack and other times he can’t remember that he has had lunch or dinner and wants to eat again.

In the beginning medical providers didn’t want to acknowledge the possibility of Down’s related dementia because of his young age. His pediatrician said that it was not unheard of that young but very rare. Various specialists evaluated him. The MRI and CT scan did not show deterioration in his brain. We were told sometimes it could not be confirmed except by autopsy and symptoms increasing. Also that the seizures he experienced at 14 years old might have brought it on earlier.

In the beginning there wasn’t much available on the topic. There is much more available now. Basically, the only consistent thing I read in the various literature I found was that unlike Alzheimer’s in person without Down Syndrome, there are immune system issues and increased medical problems. It is not the “Long Goodbye” Nancy Regan describes with her husband, President Ronald Regan. In the beginning, the literature usually suggested ten years from onset. In the past few days I saw one article that suggests an average survival of 8.2 years from first onset and another that said 3-5 years.
Billy Ray is 23 years old. As stated above the first awareness that we were dealing with dementia may have been masked by Autism because it was pretty advanced. He was 16 years old. The dementia continues bumpy but the medical issues increase consistently. His behavior seems more connected with his medical issues than it used to be.

Where we go from here is not a surety. However, the adapting to his needs and documentation prepared for the professionals involved has become even more important.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog

Back Online

If you came to the blog yesterday you may have wondered what was going on. There may have been a message that said “access denied” or “under construction”. Apparently something called a “filer” went out and Blogger had to transfer all the files that were stored on the “bad filer” to the new one.

Before the filer went out I discovered that several of my past posts had somehow disappeared. I went to the blog to get the link to quote in current posts and the link was there but the post has somehow disappeared. I am going to have to take a look now and see if everything is still there.

I wanted to tell you that if that happens again to try reading the Blog on my website. There is a feed to there. Sometimes it will work when Blogger is down.

I wanted to also give you the link to a calendar page I created on the website so you will know where I’ll be.

My Amazon Blog is now up on the book detail page. I will be writing on there every week or so until I see how much interest there is. I am still learning about how it is supposed to work.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog

Adapting Activities and Programs

Just as not all persons without disabilities will be comfortable in a college environment, some children and adults with disabilities are not able to sit in a classroom or participate in a sheltered workshop. Some will need specially devised activities. Instead of complaining about how much is spent by school districts maybe it is time school districts and governmental agencies look at less expensive ways that things could be done to meet the person's needs without having to send them out of state or into ill fitting program.

This post is not intended to present what we do as appropriate for your child whatever his or her functioning level. Rather it is intended to give you a glimpse into the thinking process we use to adapt to Billy Ray's needs. He is out of school. When he was in school the Director of Special Education and I worked together to provide skills training and customize a program to Billy Ray's needs. This meant some community activities as well as at the School District Office.

It seems important to note that we did that after the school our district was sending Billy Ray to decided that they could not accommodate the structure that Billy Ray would need. Interestingly enough the structure we asked for was to bring Billy Ray out of the classroom part of the time to do activities within the school. Our school district would provide a one to one aide to enable him to do these activities but the program didn't feel they could accommodate it. The activities involved were things like greeting the school office staff, doing tasks like putting the chairs in the conferences rooms back after meetings, watering plants, playing basketball, etc. They were not activities that would have cost the program anything other than the one to one aide that would be required anyway. This could be in addition to appropriate (to him) academic skill building.


The activities we ended up creating included such things as putting away shopping carts in the Safeway parking lot. I mention this activity because it had several benefits which might not be obvious. It got him out of a sedentary environment, gave him a chance to be active which he requires, gave him the sense of accomplishment and most importantly, it helped to make him a recognized member of the community. It didn't take long for people who saw him putting away carts for 15-20 minutes three times a week to recognize Billy Ray when they saw him at the local restaurants or supermarket. It was a win-win situation for Billy Ray.

Billy Ray has funding for support staff during the week, part of which is from Vocational Rehab. Those funds would normally be used for a vocational program after school eligibility ends (usually 21 years old). Billy Ray would not be able to handle that type of program so he is allowed to use the funds for support staff and adapt activities to his needs.

As I am out and about getting use to our relatively new community my mind is always focusing on various businesses, organizations, leisure activities that might be appropriate to him. I have driven past the Humane Society in Bend (27 miles from us) several times. My mind keeps pondering volunteer activities or visiting the animals because he loves animals so much.

I like to take him into a new setting to test his reaction to the environment especially noise before I approach anyone about an activity for Billy Ray there. Yesterday was a case in point. We were in Bend for other reasons and had Billy Ray visit the Humane Society and Healing Reins (an organization which has horses as therapy for the disabled).
















As you can see in the pictures he is especially drawn to the cats and is eye to eye interacting with this one. The other picture is a visiting room that the Humane Society.

Billy Ray was quite comfortable with the environment at the Humane Society environment. We have ascertained that. The next step will be to contact the Society to determine if there are some volunteer activities Billy Ray and his support staff might be able to participate with. Additionally I will ask whether or not Billy Ray might actually interact with some of the cats in this wonderful visiting room.

These pictures are of Billy Ray's visit to Healing Reins. Studies have shown that interactions with horses are great therapy for persons who experience disabilities. Billy Ray loves horses and used to have two of them.








Presently he visits a horse named Cloud here in LaPine most weekdays and takes him a carrot. This has become a great experience for Billy Ray and for Cloud who was a little hesitant about visitors in the beginning. He now comes up to the fence to Billy Ray most days. I have previously posted a picture of Billy Ray and Cloud.



One thing that we always have to consider in creating a workable schedule and Billy Ray's activities is the absolute need for flexibility. He has only one activity a week that is necessarily firm as to time. That is delivering Meals on Wheels on Wednesdays. Billy Ray loves his interactions with the folks on his route and they him. However, it is an effort to assure that every condition is perfect for him to be willing to participate when he needs to go.

The tasks he does on other days have more flexibility. For example, he vaccuums the sanctuary at our little church. If he has a meltdown and needs time to become calm and responsive, sleeps late because he didn't sleep at night, has a doctor's appointment, etc. we can easily rearrange the time.

In comparing the two possibilities from yesterday (Humane Society and Healing Reins) there is probably more flexibility to go to the Humane Society whereas Healing Reins are scheduled classes. Another issue that we have to consider is cost factors. If we were able to work out volunteer activities or visits to the Humane Society it will likely cost nothing but the gas to get from LaPine to Bend. There is a cost involved with Healing Reins. In making those decisions you have to also consider which will be more satisfying to the person.

There are many ways to benefit both the person and the community (including the school and taxpayers) by being creative in customizing the life experiences provided to a person with disabilities. This is a glimpse in our method of operation presently. The key thing is Adapt and Communicate.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog

Our Children's Right to the Pursuit of Happiness

My mind been stuck on our children’s equal rights since my response to the recent SF Chron Article and the prior post on government red tape.

Thomas Jefferson said “We hold these truths to be self evident: that all men are created equal; that they are endowed by their Creator with certain inalienable rights; that among these are life, liberty, and the pursuit of happiness.”

Mr. Jefferson said nothing in there about equality and rights being based on the level of functioning. Shouldn’t our special needs children have the right to the pursuit of happiness as much as any other person.

It is wonderful when government tries to help. If only their help didn’t come with so much red tape. The pursuit of happiness seems blocked so often by policies and conditions to receive needed services.

One example is the difficulty in marrying for persons with disabilities. Not everyone would wish to. However, if a couple with disabilities wished to marry they would have to look long and hard at what absolutely vital benefits they would lose. Most can’t do that even though they may be able to help each other somewhat and not require as many taxpayer funds for their daily living. Billy Ray loves to look at wedding pictures of his stepbrothers and wants to know when he is going to have a wedding. How can I tell him he can’t?

It is time for government to look at the red tape not just adding dollars. Maybe there is a way to change policies and make exceptions that would assist persons with disabilities in their pursuit of happiness without actually costing the taxpayers more money. Flexibility based on our children’s uniqueness needs to be built into government policies. Governments are not naturally flexible but they are not a bottomless wallet either.

I shared recently that because our state is going to require my son to pay about half the Social Security benefits he receives based on his deceased father’s claim they may force my hand to place him out of my home. If they do that taxpayer dollars (state and federal) will pay out probably an additional $15,000 per month to save $500. Where’s the logic there?

The reality is that we can’t count on government to meet every need. With Autism and other special needs increasing rapidly we have to look at how to give our children their equality and pursuit of happiness without total dependence on the government. If conditions were changed to allow creativity without losing important benefits such as medical care maybe it would take less dollars.

I must say that I have a new found appreciation for Congressman Joe Pitts (R-PA). Being from Oregon I know very little about Congressman Pitts. Today I was doing an internet search for the Thomas Jefferson quote and found a couple of Congressman’s Pitts comments that I really like.

In a Commentary about Martin Luther King, dated January 15, 2000, Congressman Pitts ends with the following paragraph quoting Dr. King.

“He said to the crowd, “In a sense we have come to our nation’s capital to cash a check. When the architects of our republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir. This note was a promise that all men would be guaranteed the inalienable rights of life, liberty, and the pursuit of happiness.”

"Martin Luther King wanted America to make good on its promise.”

Where is the promise to Billy Ray and your kids. It takes more than money.

The other comment I found from Congressman Pitts was from the hearings Congress held on the Terri Schiavo matter. Whether or not you agree that Congress should have been involved in that matter the Congressman’s statement below is profound:

“Have we, as a Nation, become so callous that we have bought into the “quality of life” argument that some people simply are not worth the effort to protect and rehabilitate? I hope not.”

In Ramblings of a Sleep-Deprived Mom I said: "While watching several of the clips from the funeral of Coretta King yesterday it occurred to me we need leaders such as the Kings who will fight to bring to light the needs of our children to the those who can change conditions. "

I still think that is exactly what we need.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog

The Hard Part - Deciding When to Worry

We create all kinds of visuals and cues to help our kids know what to expect and answer the question “what’s next”. If only, there was some system by which our kids could let us know what is coming next, especially with their health. For me the hardest part of being Billy Ray’s Mom is the “what’s next?” question that I have when it is clear his behavior is about some physical problem not his schedule or environment.

We have dealt with health issues since the day of his adoptive placement at 15 months old. However, it has been mostly things like ear infections and viral things. He has been blessed with reasonably good health until the last few years.

The documentation system in Parenting Your Complex Child was created mostly to help adapt to Billy Ray’s needs for schedules, environment, and advocating for his needs. It is becoming more important to his medical needs than expressed in my book. We had not experienced this many medical issues at the time I wrote it.

This weekend we had things occurring that could just be the flu. On the other hand, the medical folks have been sort of watching gallbladder since this summer when Billy Ray had surgery for appenditius. I am always left wondering if this is something routine (cold, flu) or should I call the clinic.

I am so thankful that we have Brice Stanley, PA-C, as Billy Ray’s medical provider, because he doesn’t treat me as a worry wart. I know that he will explain things to me and that he will be very thorough with checking things out.

My husband keeps saying what we need is a computer system to hook Billy Ray up to – like they do cars. Then the computer would tell us when Billy Ray can’t what is going on with him. Any inventors out there?

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child YahooGroups List
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

That Face - Billy Ray's Bowling Expressions

Yesterday while I was taking care of myself in an afternoon with my husband, our consultant friend, Keddie Wanless, went with Billy Ray and support staff, Ron, to the LaPine Bowling Alley. Ron said that Keddie has caught my camera bug. She has been helping me update Billy Ray's visuals and snapping lots of pictures.

Yesterday she got lots of shots of priceless expressions from Billy Ray that I can't resist sharing with you today. He seems to intense about his bowling.

He is very proud of his accomplishments too. He is actually doing very well - an amazing number of strikes and spares.

Keddie and I have been trying to instruct Ron on enthusiastic praise. The week before I modeled it for Ron. As you can see he appears to have gotten the idea now.

I am in the process of preparing a slide show to use with my projector and run when I am at booksignings, etc. to show examples of adapting. Let me know which one of these you think makes my point best.

Okay, Blogger you have me whipped for today. I have four times "fixed" it so that it didn't break up my signature - half beside the picture and half below. If it does it again I'm going to leave it that way and hope my blogger friends will understand.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Just for Today -- Idle Chit Chat

Just for today, I’m going to take care of me first. It’s hard for me to do that sometimes. Life tends to focus mostly on Billy Ray’s needs.

We have been in this area for over a year. There has been no plus-sized fashion shop. Today one of my favorite shops, Dress Barn, is opening in Bend (27 miles from us). I am going to allow myself to go shopping and to have lunch with my husband.

I am going to start with the best treat of all – a long soak in the tub. I tend to do that when Billy Ray is otherwise occupied which might not be that first thing in the morning that most people do. Not everyone could understand the joy of an uninterrupted bath. Those of you will have kids, whether special needs or not, probably do.

I am obsessing on the wonder of technology this morning. When I was writing Parenting Your Complex Child (AMACOM Books April 2006) I so longed to be able to interact with my readers. I would have never imagined that Amazon would have an ability to put a blog to talk to readers on their website. My publisher, AMACOM Books, let me know about it yesterday and I created one. Eventually it will be on the book detail page – once they confirm that I really wrote Parenting Your Complex Child.

Who would have dreamed that I could meet and learn from all of you too. If it wasn’t for my agent, William Brown , I would have never started the website and this blog. He is so smart about these technologies and I’m coming into the computer world (kicking and screaming at times) with total amazement.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Preparing for Emergencies

Thanks to Liz Ditz who sent me a link to what will surely become of one of my new favorite blogs because it reminded her of our situation.

I would encourage every parent of a special needs child to read and reread Mary’s post “Does Anybody Know Anything About This Kid” about the risks in emergency room for our kids. There was so much in her post that I considered pasting here to peak your interest to go to her blog. It is all very important.

Mary starts by saying that children with extraordinary health care issues are at risk when they go to emergency room. She hit the nail on the head with: “However, even those children who could benefit from ordinary emergency treatments are at risk from clinicians who don't understand the intricate complexities of their little individualized extra-ordinary lives.”

As I shared in Seeing the Light at the End of the Tunnel we went to the emergency room for what I would think was pretty common – appenditius.

Parenting Your Complex Child was in the hands of my editor by the time this situation occurred. With the strong encouragement of my editor we added the emergency room nightmere to my book. Here are excerpts from Chapter 13, Parenting Your Complex Child (AMACOM Books April 2006) :

“Doctors who see your child regularly know more about your child's credibility relative to pain. Emergency room doctors have seldom seen your child before. Your child may be sincerely in pain or simply be a complainer. You may be a parent who has good insight into your child or one that exaggerates. The doctor may have difficulty understanding the situation.”

*****
“I could feel the anger welling up inside of me. Having had a similar experience before, where a different emergency room called the security guard at the first sign of anger, I knew I had to stay cool. I also knew that Billy Ray was more ill than I had ever experienced. I sensed that how I handled the next few minutes was a matter of life or death for my son.”

*****

“After regrouping, I walked back into the emergency room and tried to establish some common ground with the doctor. I recognized that he had an emergency room full of patients and that Billy Ray was hard to diagnose because he couldn’t communicate what was going on with him. I explained to the doctor that there are two kinds of agitation Billy Ray exhibits; one when he has mental confusion and another when he is in pain. Finally, I told the doctor that a surgeon who had lanced a cyst on Billy Ray’s leg had stated that Billy Ray must have a high tolerance for pain in order to endure the pain of that cyst.

“Following our conversation, doctor ordered a CAT scan of Billy Ray’s abdomen, which showed an enlarged pancreas and appendicitis that was leaking bacteria into his abdomen. He also had some major gastritis and the beginnings of an ulcer. A surgeon was called in and Billy Ray was taken to emergency surgery late that Saturday night.”

I shutter to think that the result could have been different than bringing home 13 days later.

Reading Mary’s blog, I thought about a recent post Being the Eyes and Ears for Your Complex Special Needs Child and the case manager’s comments that not everyone has family who could be the eyes and ears for their complex child.

In Parenting Your Complex Child I give an example of a form I created to track Billy Ray’s medical, development and history treatment. This form was not given to the emergency room physician that night because we had just moved at the same time I was finishing the book. There was no time to dig for them in unpacked boxes. This history and the brief summaries I also do would have been helpful in demonstrating what I was trying to explain to the emergency physician. No he probably wouldn’t have had time to read in detail but I could have referred to them.

The documentation system can survive parents/family in being the eyes and ears for their complex child. The last chapter in Parenting Your Complex Child suggests ways to use the same visuals and documentation necessary for day to day life now as an estate planning tool.

This is one of those posts where I could go on and on but I hope you will use this post and Mary’s post to be prepared for emergency situations.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Communication by Behavior - Messages

When my husband was telling my mother-in-law about getting the advanced copies of Parenting Your Complex Child , signing and mailing to special folks she teased that the hat she made for me is stretchy but if it won’t stretch enough she’d make another one. No need of that Billy Ray will keep me humble.

I shared how Billy Ray had not had aggression for 10 days. The medical and dental issues seemed to be stabilizing so we could do our thing to get things working best for him now. Yesterday morning he clearly communicated by difficult behavior that it isn’t there yet. In the morning he was aggressive and by evening he clearly didn’t feel well.

Sometimes it feels as though we will never “be there” but we are so much better at reading the signs than we used to be. Now we can look at his “communications” and come to solutions quicker. We were able to ascertain that he wasn’t feeling well and give him something for pain. He slept well and is back to being the usual Billy Ray (noisy and bouncing) this morning planning to deliver Meals on Wheels.

I discovered the website David Pitonyak, PhD yesterday. Dr. Pitonyak writes: “My practice is based upon a simple idea: difficult behaviors result from unmet needs. In a sense, difficult behaviors are messages which can tell us important things about a person and the quality of his or her life.”

Dr. Pitonyak goes on to discuss the need to support the support systems (families and support staff). It is very interesting reading. I felt like I had found a kindred spirit reading it. His “messages” are pretty much what I refer to as communication by behavior.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Where's the Rest of the Story..My Response to 2/19/06 SF Chronicle Article on Special Education

Blogsphere is ablaze with comments on the San Francisco Chronicle’s February 19th article on Special Education . See the follow up post by Charlie Fox on Special Ed Law Blog and his initial post, Progranda War Carried Out in the Press .

My first reaction to the SF Chronicle article was that the war has a new battlefield. In the preface to Parenting Your Complex Child I described parenting a complex child as a war with many battlefields: home, dealing with school and other agencies and going out in public. The media has been covering mostly high functioning children but I have never read a piece that attacked parents until this piece. Will the media now be a new battlefield for parents to deal with?

My second reaction to the article is that it was very one-sided. Very little was included from the parents’ prospective. I found myself wishing for Paul Harvey’s “rest of the story”. Here’s the response I sent to the San Francisco Chronicle this morning:

“Reading your 2/19/06 Special Education piece I wondered where’s “the rest of the story”. As mom of a special needs adult, I know the other side of the story. Lawmakers tried to provide for disabled children. Unfortunately, red tape and combat zones came with their good intentions.

Explaining your child’s needs to “the team” and being treated as “only the dumb parent” makes it difficult to create an appropriate plan that is also cost effective for the district. I agree that parents need to get real in their expectations of what a district can and cannot do but a possible compromise can only be reached if both sides are listened to and respected.

All special needs children are unique. Many cannot be pushed into existing systems. They need individualized systems created for them. Much of that can be created at much less cost if the district is willing to look at doing things the way the child needs rather than the way it has always been done before. To accomplish this requires team building advocacy on both sides.

My book Parenting Your Complex Child (AMACOM Books April 2006) came out of our struggle with these very issues.”

The rest of the story is long and most of us have experienced chapter and verse. We can experience “the dumb parent treatment” whether communicated in words or attitude says to us “what do you know, you’re only the dumb parent.” We may be accused of not seeing our child objectively. It is unquestionably a battlefield.

The problem is when the war is going on the casualty is our children. Until we can start negotiating a peace plan nothing changes for our children. Programs don’t get started, IEP goals aren’t ever agreed on and things do not get better for the child.

It was impossible to tell the rest of the story in 200 word response but it was surely missing for the article.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Let's Talk - YahooGroups List

I have had a YahooGroups list for a while but haven't done much with it. As Parenting Your Complex Child gets out to more parents after its' release next month, this list seems a good place to talk to me and with other parents reading the book about your thoughts and questions.

The link to should take you to it and you can sign-up. If you don't have a YahooGroups membership it will ask you to create one. If you have problems subscribing email me and I will try to help.

Until next time,
Peggy Lou Morgan
parentingyourcomplexchild@yahoogroups.com
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Seeing The Light at the End of the Tunnel

The past year has been a confusing one read Billy Ray’s “communication by behavior” because there were so many things to untangle. Parts of these events have been shared partially in prior posts. It will be easier to follow the chronology and share our joy at making progress to be a bit redundant.

Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.

In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.

Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.

Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.

After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.

In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.

His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.

This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.

Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.

Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.

It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.

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

Sample Chapter is Online

Today is a two fer blog. I had already written today's blog when I learned that my publisher, AMACOM Books has the information for the book on their website. You can click here to go to AMACOM's listing for the Parenting Your Complex Child. On the right it there is a place to click for the table of contents and to read a sample chapter.

The "Look Inside" feature is now activated on Amazon so that you can read a sample chapter there (different from the one on AMACOM) and click on the "surprise me" button which brings to you to various parts of the book. I checked it out and was amazed at how much you can see doing that.

I am really glad to have that much online because I know that not every book works for everyone. I once told my editor that I wish I had a dime for every book I spent big bucks on that didn't help. I hope people will like my book but that they have an idea what they are getting. I made every effort to help parents decide what to do for their own child based on their knowledge and experimentation instead of telling them what to do.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Fighting Government Red Tape

The old Billy Ray (before all the medical issues) is reemerging rapidly. Last night was a case in point. He woke up at 4 a.m. content to stay in his bed as long as I was in the room. Believe it or not, a lot of Parenting Your Complex Child was written from his computer in those nights.

I started a new book proposal last night about creating a life for lower functioning children and adults. As I worked the gnawing question was how will government red tape frustrate parents in trying to use my suggestions. The proposal was set aside and a letter drafted for a Congressman I think might be interested in trying to overcome some of that red tape.

If you have examples of how policies prevented your child or adult child from being able to do vocational or other things for fear of losing the medical care or other supports and would like to share with me for that letter to the Congressman please email me.

If we could work together to alleviate some of the red tape it would be better for taxpayers as well as people with disabilities. Maybe people with disabilities could contribute more to their own care if they were allowed to receive certain things without losing urgent medical care, etc.

Perhaps it is naïve to expect Congress to cut through red tape. On the other hand, they cared enough to create Americans with Disabilities (ADA) and the IDEA educational bill. Maybe they care enough to clean up some of the well intentioned but tangled in red tape government policies, which effect our children. It seems worth trying AGAIN.

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

Evaluating Risks

I have been contemplating this post in many ways for months. There is often controversy about the risks and decisions we face with our children whether or not they experience special needs.

The first time my late husband and I were faced with a decision relative to medication use for Billy Ray was very stressful. Billy Ray was seven years old. The word Autism had not yet entered our vocabulary. We were just learning about Bipolar and ADHD. His behavior could sometimes take three of us to control.

“Dr. Ron” (Ronald R. Roy, now deceased) whom I refer to as my mentor from the grave and dedicated Parenting Your Complex Child (together with Billy Ray) was our first pediatric psychiatrist. We talked a lot about risks in those days. The risk of side effects as opposed to the risk of doing nothing. The latter risk is a very real thing to consider. Quality of life issues are always an important consideration.

That first decision was whether to use a anti-seizure drug as mood stabilizer. One of the risks associated with it was a blood count issue that could be dangerous. We struggled with it. Then one day I was talking with my own psychiatrist, asking his opinion about using it for Billy Ray. His statement set the course of my thinking in many other decisions. He assured me Dr. Ron was very cautious about regular testing and could discontinue it quickly enough to minimize the risk.

In discussing risks, a longtime pediatrician once went over the risks of using plain aspirin as an example. If people realized all the risks of aspirin, no one would probably use it. It is such a common part of our culture that no one really thinks about the risks involved.

These, then, are questions we must ask about most decisions relative to our children who experience special needs:

• What is the risk involved in doing nothing?


• What is the risk involved with the treatment suggested?


• Is there anything that can be done to minimize the risk?

At that time, it appeared the risk of doing nothing meant placing Billy Ray in the state institution (now closed). It would clearly impact the quality of his life. The additional reality was that placed in that kind of setting, he would be medicated anyway. The risk would be minimized by regular blood tests and the medication stopped immediately.

We took the risk. Billy Ray stabilized for several years including the last five years of his father. It enabled him to have a very special time with his Dad. We have considered other medications over the years that the risk seemed just too much.

There are many other risks in life than what medication to use. For example, various support staff have questioned the degree of involvement we also Billy Ray to have in preparing meals. The stove is hot. He could get burned. So could you! So could I! Life is a risk we take each day we wake up. The alternative is risky too.

Billy Ray loves his service dog. If he is experiencing communication by behavior he is mostly likely to express it to someone he feels most secure with – Mom and service dog. The risk is always there that he will get a dog bite. We discussed the benefit of the dog and the risk with the pediatrician years ago. He has never been bitten but he has gained much benefit from having his dogs over the years.

While we should never assume risks haphazardly, it seems so important to always look at both sides including the risk of not doing anything.

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