The Dream is Reality/Update on Us

We might as well be honest, I am just too emotional to write much today. My wonderful editor, Ellen Kadin, sent me an advanced copy of my book so I’d get it faster than the author’s copies which are coming slow route. It has been so long in the making that it has seemed a bit unreal. It seemed a dream. Holding it in my hand makes it real.

I feel as if I have a whole new family at AMACOM Books who have been so patient and kind with me. Based on the experience shared with me by a couple of authors I’ve become acquainted with I realize how blessed I was to have AMACOM as my publisher.

Billy Ray is unimpressed. I showed him his picture in the book and he said "damn book". I think he may have been told too many times that I had to write the book when he wanted to go somewhere (smile).

Parenting Your Complex Child will come to stores in April and but can be preordered now on Amazon in the U.S. and U.K and Barnes and Noble .

As a bit of an update on us, Billy Ray has been more back to normal (for him) in the past few days. To the people from AMACOM who heard Billy Ray’s noise in the background this morning, it might seem strange to that we are back to normal.

Noise and mania are a part of Billy Ray that we have learned to accept over the years. The extreme “communication by behavior” is not normal for him. He might throw things or punch on when something is not working but if we adapt his environment and schedule it doesn’t happen much. The aggression and out of control is really rare. When his behavior became so aggressive this summer it was clear we had something medical going on.

Dr. Hester finding the dental problem that didn’t show in the x-ray may have been the change. He was also fighting skin infections that were not responding to the prior antibiotics. Brice Stanley, his medical provider, lanced one and changed the antibiotic. Either or all of this could be responsible for his improved behavior.

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

Reflections On How Far We've Come

It is late and an I am in one of those reflective moods again. It has been weird week, not entirely because of Billy Ray's issues. Our family is going through the kind of thing all families experience at one time or another in their lives whether or not they have a special needs child. It just seems to have come all in one week this time.

I wanted to lighten up a bit for the blog today and pertend I was Lori Miller Fox. In looking through the massive picture and visual files for Billy Ray for a picture I had in mind, instead I found myself reflecting on the stages of our life together as mother and son.

Too often we get so stressed by the present we forgot the fun moments. Here are a couple of those memories from our life together.

This little picture of Billy Ray in his crib always brings me so much joy. There is another picture taken the first day of his adoptive placement before his haircut that shows the transformation he made in the first day he was home. It is too old and worn to scan for you.

At fifteen months he didn't walk and was evaluated at about 4 months developmentally. Two months later he was running as if trying to catch up on life.

One year my attorney and Billy Ray's best buddy, Doug Harrison bought Billy Ray this race track. He loved to play with that toy more than any toy he has ever had. It is fun for me to see him being all boy before the Autism became more severe following a series of seizures at 14 years old.

We also did Challenger Little League. If you have a change to get your child involved in that program or just to go see a game it's something you won't want to miss. Challenger teams are little leaguers with various disabilities including children in wheelchairs and developmentally disabled children. Buddies from the other teams are assigned to assistant each Challenger team member. It is always a tie game and just for fun. Many team members will run to third base instead of first and receive just as much applause. It gives the kids a great sense of accomplishment as well as a lot of fun. Here is Billy Ray the "catcher" .

It is hard to imagine the mature young man delivering Meals on Wheels with his support staff, Ron below is the same little guy in the crib above.

You really have a come a long way Baby and I am so glad you let me come along with you.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

No T.G.I.F. for Parents with Complex Children

This morning I realized that T.G.I.F. (Thank God It’s Friday) no longer holds the same meaning for me. We just came from the clinic where Billy Ray had lab work. I heard some folks saying T.G.I.F. I mused to myself that for me it is more like O.N.I.F. (Oh No It’s Friday).

We have help with Billy Ray weekdays. The transition from having another person doing the routine things like brushing teeth and assisting with his bath or taking him for community activities is confusing to Billy Ray. Each weekend we are asked “where’s Ronnie” about every five minutes. He cannot accept “it’s his day off”.

I enjoy having Billy Ray to myself on the weekends but they can be a bit exhausting. If he is having a difficult time I am ready for T.G.I.M. (Thank God it’s Monday) when Ron returns to spell me for a few hours each day.

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

Life Issues Beyond Our Complex Child

Thanks for the email from my fellow bloggers and blog readers that worried because I didn’t do a blog yesterday that something is wrong with Billy Ray. It was just one of those busy days yesterday.

Yesterday we met with the psychiatrist for medication review. Then I went to meet with the local Arc Chapter President who also runs a residential program about 27 miles from us. I walked out of there with the sense of meeting a kindred spirit, which is always wonderful. We then made a Costco trip for all the special things we have to replenish for Billy Ray constantly.

We can get so hung up on the care and needs of our complex child that we sometimes forget life goes on for our extended family and friends too. We got three different pieces of bad news from both sides of our family.

It is difficult to support others while trying to survive our day-to-day experiences but it must be done. Despite our efforts to keep everything running smoothly for Billy Ray there are times we must expect him to co-operate with the need for us to be there for others we care about.

We had just sat down for dinner, which was late because of our day yesterday, when a call came in from one of my stepsons about his wife’s new cancer diagnosis. I anticipated that Billy Ray might get upset. My first thought was to say I would call back. Then the thought crossed my mind that Mark is just as important as Billy Ray. If he got upset, we would deal with that. Billy Ray was amazingly calm as I talked to his brother.

Since he is often preoccupied with his own needs we expect Billy Ray to be insensitive. He is not. Obviously, we do not give him details he can’t understand. However, he was quite accepting of our reminder that Larry is Mark’s Daddy too and sometimes Mark needs his Daddy and stepmother.

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

Some People Who Have Helped Billy Ray So Much

I have been thinking a lot about Mary Kimsey the past few days. Mary taught the structured learning center program Billy Ray attended for kindergarten through second grade. I can still hear her saying "these kids are not a job to me they are my life" in that first meeting we had.

Watching Billy Ray take his tee shirt off the other night I realized at 23 years old he still does that task the way Mary taught him. Despite the medication reaction that changed Billy Ray so much later in his life, he has retained much of the wonderful training he received in Mary's classroom.

In the picture he is at the front of the class with Mary. Each of the students were called to the board to find their name and repeat their address. This simple activity has had a profound impact on the rest of his life.

There have been other teachers in his life who have made a difference. Some of them have already been shared with you in other posts.

Chone Fields was Billy Ray's teacher only a part of seventh grade but her creativity has made such a difference not only in Billy Ray's life but also by enabling me to believe things could be better for Billy Ray. The activities she developed for him and her ability to help him feel a real part of the whole school increased his self esteem to a point I didn't know possible. I used a lot of her activities and ideas in trying to restart Billy Ray following seizures he experienced with the medication reaction. I wish I had a picture of them to share with you.

Heidi Ostrom had a special relationship with Billy Ray from their first meeting. That is demonstrated in the eye contact in this picture. Billy Ray doesn't favor many people with this intense gaze.

Heidi would be the first to tell you the program we created for Billy Ray was not perfect. This is partly because we came to her school district following a traumatic period in his life and he was experiencing multiple health problems the bulk of the time in her program.

Due to the struggle that was necessary to create a program for Billy Ray, Heidi and I spent a lot of time together. Now that Billy Ray is out of school I consider her our friend. As friends do we have disagreed from time to time but we have grown by working through those disagreements. Billy Ray is better because of what I have learned working with Heidi.

It was Heidi who gave me the Amanda's Story video we talked about in Parents Who Make a Difference and brought Dan Hobbs into our life. The video done by Dan
helped me to see that a lot of what we were already doing made a real difference. Dan (pictured playing with Billy Ray) helped me to see that we needed to have fun with Billy Ray and that he could still have relationships with others but needed our help to establish them. Dan worked with Heidi and me to create relationships with the folks at Silver Falls School District Office where Billy Ray went to do activities several times a week. Some of those folks are still on Billy Ray's mind though we live three hours a way now.

We have talked before about Mr. Koger. Every white western shirt and western slacks are still named "Koger" and there is not a day that goes by that we don't hear about "my principal". This two years after he is out of school.


There were many people in that school district Billy Ray became very fond of. It would take far too much space to picture and mention all. He still talks of them everyday.

My husband, Larry, will shoot me for including this picture but it shows the difference in Billy Ray's life he has made. Being a city girl I have not always enjoyed Larry's need to be out of the city. Billy Ray has bloomed with it. He loved mini farming from the time we met Larry.

It is a little hard to see from the picture but they are riding in an older John Deere Gator we had in our prior property. Billy Ray loved to go for rides down the back hill and all over the property will Larry. From "Dadgert" Billy Ray learned to appreciate the outdoors and it is special for them to do together. I may prefer to be in city but Billy Ray and his stepfather bloom out of it.


Kevin Loyd and Billy Ray had a special bond from the start. Kevin is probably the only employee Billy Ray ever selected himself. Kevin was hired to help with some projects on the property not to work with Billy Ray initially. However, Billy Ray was immediately attracted to his personality and the outside activities.

While Billy Ray has had other support staff who have made a difference the relationship with Kevin was unique. I think that it was because like Larry, Kevin is most at home working outdoors. Like Larry his only experience was being a pretty good Dad to his own kids who did not experience special needs.

I changed the title of this post to "some" because there is no way I can write about everyone who has made a difference in Billy Ray's life.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Adapting...Doing What Works for Your Child

In Susan Senator’s book, Making Peace with Autism , I discovered a good example of adapting to what works for your child. Susan shared how her son Nat had experienced a meltdown at a family holiday gathering – he refused to go into a family member’s house. Thanksgiving was coming. She and her husband dreaded the likelihood of another meltdown ruining the holiday for the whole family.

The label Autism and the massive education that parents must experience once they get the “label” had not yet happened for Nat and his parents. However, Susan knew her son from observing his responses. Nat responded to books especially ones that told him what to expect out of an event. She wished there had been a book on Thanksgiving so Nat would know what to expect. She began making “crisis storybooks” which helped Nat to get through a family gathering without the insecurity and over stimulation that can ruin such gatherings for a family.

As parents of children with Autism and other complex special needs we often know what works by instinct and observation. In this example, Susan was using some of the basic purposes Carol Gray gives for her Social Story Program.

In Parenting Your Complex Child (April 2006) I shared that we were doing “floor time” as Dr. Stanley Greenspan recommends long before we heard the term. We were using the little program “Sweet Pickles”, advertised every time you turned on the car radio or television at the time of Billy Ray’s adoption. Sweet Pickles were activity cards to do with your preschooler. Some were about counting. Others were sorting by color, shape, and size. A new set of cards would come approximately every two weeks. We would work the new cards together a few times on the table or sitting on the floor together. After being sure, he understood the concept we applied it to everyday tasks. For example, we counted silverware as we loaded the dishwasher together. We talked about sizes and shapes doing laundry or grocery shopping, etc., etc., etc.

Susan shared how reading Temple Grandin’s books gave her confidence to trust her own ability to help her son. It is my hope that reading what other parents’ books will encourage you to trust your own instincts.

Saturday’s mail brought book jackets my editor sent me for my book. I was thrilled to see that they pulled a couple of lines from Kate Crowe’s Foreword to Parenting Your Complex Child for the back cover. “This book is so much more than a list of suggested responses to particular behaviors. It’s a detailed guide to understanding your child and building a place in the world for him or her from the ground up.”

Your child will respond differently to things than Billy Ray and Nat. It is my hope that by reading how Susan and I (or multiple other parents who write their experience in books and blogs) adapted life to our children’s needs you will feel empowered to adapt what works for your own child.

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

Joy and Satisfaction, Sadness and Frustration

Life with a child or adult who experiences some form of special needs is one of extremes – joy and satisfaction, sadness and frustration. I understand why many see it as a tragedy because I used to feel that way. There was hopelessness of wondering what each new day would bring and being afraid to get up (as if there was a choice when my son wakes raring to go at various stages of moonlight and sunrise). Other nights when tucking Billy Ray in bed and having him say “I luv you Mommie” in the most precious little voice there is a sense of “okay this is going to work”.

In the post Autism the Other Member of the Family, Kristen refers to the "bottom of the barrel feeling", that nameless panic that comes over you all day long.” We have experienced years of that “bottom of the barrel feeling” with Billy Ray partially because he is so complicated that most of the professionals involved with him were as frustrated at trying to help him. I remember screaming “is there any hope for Billy Ray” from the back deck of our former house in the middle of the day when no one was home but me. It must have been really loud because I could hear deer running down the back hill.

Reading book after book that said do this or do that for Austim or ADHD or Down Syndrome or Bipolar (none of it worked for Billy Ray who has been labeled with all those diagnoses) began to make me more angry.

A combination of factors including returning to my faith, stubbornness, anger, and probably my infertility issues created a person that never existed in me before. Giving up was not an acceptable option to me. In that stubbornness I made a lot of foolish mistakes eventually starting all over again to find out what would work for Billy Ray and me. That process is shared in Parenting Your Complex Child, this blog and my websites.

Life has become one of reading signs and evaluating communication by behavior . We found out a lot about what was causing Billy Ray’s frustration with his life and changed everything that we could. This reduced his behavior. The sense of satisfaction at making a difference in Billy Ray’s life is as extreme as the “bottom of the barrel feeling”.

We are not allowed to stay at the elation of making things better for long. Something new has a way of creeeping up without warning. Communication by behavior is now primarily because of his changing medical issues. That doesn’t make it less frustrating to deal with.

Changing what we can, accepting what we can’t fix and praying for wisdom will likely be a part of our lives as long as Billy Ray and I are together. We probably will never be “fixed” but we sure are better and that is satisfying beyond description.

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