Happy New Year

Some of you have written me that you wish you had our snow so I am sending you a picture as our New Year's card to you. The little pointed ears to the right of the tree (before the half buried covered wagon) is a deer figure. It is so deep that you can't see much but ears. The sundial my mother gave me is on the far left. Not very needed at this point in the year.

I am reflecting on the last year while Billy Ray is taking an unexpected nap and I am trying to capitalize on it by getting laundry running, writing to you and working on a writing project to hopefully increase understanding for families with complex children.

This time last year was filled with excitement. We sold our house and my manuscript was accepted in a two day period in November. We moved to LaPine on December 20, 2004. Boxes filled the house and I was trying to finish the Parenting Your Complex Child (AMACOM Books, April 2006) for a March 15th deadline. We could have never anticipated then what this year would bring.

Billy Ray's health crisis this summer caught us totally off guard but we got through it and learned so much in the process. One of the things I learned is that each day Billy Ray is with us even the days he breaks special things or pulls my hair is special. There is nothing that brings that reality closer than nearly losing him. The other thing I learned is that you can count on your support system if you swallow your pride and let others help.

It has been exciting in terms of all the new contacts and friends I have made. I got to talk to Dr. Temple Grandin and laugh with Dr. Bernard Rimland both of which was a thrill beyond descriptions.

At the beginning of this year my literary agent, William Brown, suggested I do a blog. I didn't even know what a blog was. I was more than willing to try because his advice to do my website has brought opportunities to talk to folks all over the world about their complex children. True to form his advice has opened a thrilling experience to get acquainted by email and comments with many of you.

I just have to confess that I am a child at heart at Walmart. Thus, when we found that my book is already available for preorder through Walmart I was so excited. It was thrilling to see Amazon and Barnes and Noble adding it to their sites especially since I buy so many books at both sites every year. Don't know why I was so excited to see Walmart carrying it but I was.

Hope the new year brings steady progress for your complex child. You will note that I didn't stay big milestones. Savor each baby step as if it were giantic because it is.

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

Ten Random Things About Billy Ray

A few weeks ago I was "tagged" by Lora to tell Ten Random things about myself on my blog. I thought I would continue the tag by telling Ten Random Things about Billy Ray (written after a night of little sleep – sorry) and tagging Lora, Tina, Suzanne and Kiralea to share ten random things about their Autistic child or otherwise complex child.

1. Billy Ray will wake up several times during the night (even with sleep medications) and nap for long periods of time when his paid support staff is here and I can’t go back to bed.


2. He is most likely to request whatever food item I am out of and not accept that the store is closed at the moment.


3. His repetitive questions require the same answers even if the answer is illogical. For example, he has been asking me half the night of last night where Heidi. Heidi (director of special education at his old school district in Silverton, Oregon) was probably home sleeping (at least I hope so) but he had to be told she was in her office. In a sense, my son forces me to lie to him.


4. He has his own time clock. He can’t accept that appointments won’t wait, stores won’t stay open or church services keep singing until he gets whatever he wants dealt with at home.


5. He is going to be the most noisy when I’m on the phone. I can make calls when I think he is occupied with support staff. Somehow he knows and will come into my office drowning out the phone conversation.


6. He names his clothes. Just when we adjust to what item of clothing he is talking about he changes the name.


7. He is happiest wearing three ties (a tie with a lighthouse friends gave him, a blue clip on that he calls “Raymond’s tie” because it reminds him of his deceased Dad and a bolo western tie).


8. His favorite music is the “oldies” and the Bill Gaither Vocal Band (religious).


9. He can rearrange the sequence of his activities but if family or support staff change the sequence it doesn’t work.


10. He is only aggressive towards those he trusts.
11. Oops. I can't resist an 11th one -- he can melt his mother's resistence with his smile and he knows how to use.

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

Update on Regrouping

If you have been reading this blog you know that since Billy Ray's major health crisis (2 surgeries in 47 hours and 9 days on a ventilator) in July we have had some issues major behavioral change. Aggression has been more severe than we have ever experienced. Major regrouping has been necessary.

The documentation system to get the doctor a clear picture of what Billy Ray was experiencing helped a lot. New medication was added. It was bumpy at first and necessary to have repeated conversations with the psychiatrist. However, we have made significant progress in that regard.

It is easy when you are already tired that the visuals and documentation are not important now. In the past few days it has become more obviously that a combination of medical and psychiatric interventions with the things we do at home (visuals, schedules, routines and community activities) is the only way to create a life that works for us. Consistency is so important. Once the schedules and visuals are done there is training of support staff and family so that everyone involved with Billy Ray does things the same way.

Last night Billy Ray was moderately manic (silliness, laughing and active). I was thinking how nice it is to be back to his old self. This is more normal for him. So much better than the sound of breaking glass and furniture being knocked over. It felt so good, I just went with his mania (took his hands and bounced up and down with him for a minute).

As I have been recreating visuals and schedules for Billy Ray in the past few weeks we have snapped a lot of pictures. They aren't family portraits by any means. Nevertheless, sometimes you get shots that show who he is as a person and give insight into his life and relationships. Just for fun I'll share some of them with you.

These pictures are everyday events that wouldn't seem significant unless you know the circumstance surrounding the task. I love the intense way Billy Ray is washing his hands in this picture (taken to make a symbols for wash hands) because we have worked hard to get him to do a thorough job allowing warmer water because he has a tenancy to scratch which adds to his infections issues and because he now has to have the finger stick blood sugars done daily. The scrambling eggs picture is from a visual I did so that support staff knows the sequence required for Billy Ray to make his breakfast.

This is Billy Ray with Pastor Richard Lighthill at Grace Fellowship. He goes on Tuesdays and Thursdays to do a few chores that he enjoys doing similar to the ones he did at the School District Office when he was still in school.

A highlight of these community activities is greeting anyone and everyone at the church. He literally interprets the Men's Bible Study on Tuesday mornings. I told staff to stop allowing him to interrupt but was quickly put in my place by the men in the group. Somedays Billy Ray will shake hands around the table and other times he hugs everyone. His "my men" love it.

On Wednesday Billy Ray and his support staff deliver meals on wheels through the Senior Center. The picture on the right is with one of the ladies on his route. His people are always glad to see him.

I think we may be on the road back to where we want to be. There is a great deal of satisfaction in knowing that we are adding quality to Billy Ray's life by this planning and enabling him to give back to the community in doing things he loves to do.

I am working on adding pages to my website with more of his visuals and the forms that will be in my book. I will give you links when they are ready.

Hope your holidays are going well and you are having some fun with your children.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Your Child's Best Expert..His Parent(s)

Did you see Susan Senator on MSNBC this morning? It is always great to see parents in the media. I wish they would have given her more time but thought she got as much as she could in during the limited time she had.

When asked what why she wrote her book Making Peace with Autism and what her message was, Susan said that parents needs to trust their gut and recognize that they are their child’s best expert. Exactly!! I said the same thing in my post Doing Your Own Clinical Trials.

We need more public awareness of the reality we live with daily. This is difficult because each of our children are unique. Susan’s Nat is not my Billy Ray or vice versa. Each of us has to evaluate what works for our own child as an individual and create a life that works for the whole family as well as our child with Autism or some other disability.

In the foreword to my book, Parenting Your Complex Child, (April 2006) Kate Crow, Genetic Counselor, says of the book “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.”

I think that we need to enable parents to build a life for their own child from the ground up. Hopefully those of us who are now sharing our stories with other parents can encourage parents that you can take your rightful place as leader of your child’s team.

Good job, Susan!!

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

Dealing with Disappointment

I am starting this just a couple of hours after posting Monday’s blog. I will finish it sometime today and post it on Tuesday. It seems important to share what might seem silly to some but might help others accept their own disappointment.

I just reread several of the posts where I hinted about my feelings but don’t believe I actually shared my own disappointment realistically. In Regrouping AGAIN..More Communication by Behavior I shared that he was knocking over furniture, etc. on Thanksgiving Day. I didn’t share that he broke an entire set of Thanksgiving things. They were only Walmart cheapies of salt and pepper shakers, gravy boat and sugar and creamer set. He had been good with them for three or four years so I felt safe to set them in the shelf between the base of the china cabinet and the hutch top.

In the 10/20/05 post Communication by Behavior, we talked about the rejection and betrayal you feel when someone you love punches or abuses you. While we understand and accept that our children can’t control the behavior without our intervention, it still hurts both physically and emotionally.

Saturday we had a brief episode where Billy Ray knocked the pepper shaker that goes with the lighthouse dishes that he and my husband got me for my birthday a few years ago. Monday morning he had an incident during his chores where he knocked everything off the counter he could including the last lighthouse sugar bowl (he broke the other one a few weeks ago) and a spoon rest that I like. They are only a cheap set but they were meaningful to me.

I rarely allow myself to go with my disappointment but today it is there. There is the realization that these things are going to happen from time to time. I can choose to allow the house to become institution like which is very depressing for me or deal with the disappointment when these events occur.

I know why the incident happened Monday morning and we can fix it. I have tried to teach his relatively new support staff not over “rapid cue” or “over cue” Billy Ray. It agitates Billy Ray because he does not have time to process the first command or respond to it before the next one comes. Processing time is slower for him since the seizures at 14 years old. Maybe it was just one of those things you have to experience for yourself to understand. It is natural for this staff (one of the best we’ve had) to want to guide Billy Ray to do the best job possible so he over cues. This morning he realized that he caused the problem by too many cues about which slot to put the silverware in the drawer when unloading the dishwasher. It was really a good thing because he learned from the event and I am glad for that.

As parents we can’t get stuck in our disappointment but sometimes we have to allow ourselves to experience it in our own way before we can go on with creating a life that works for our complex child and the family.

I love a new blog I found through Griffin’s Mom, Lora, Jordan’s Life with Autism, especially her recent post I Think I Have Aliens in My House where Jordan’s Mom is able to share the humor in her difficult day with the kids. Read it. Great for comic relief.

For me, allowing myself to feel the disappointment and getting a break from Billy Ray, if possible, helps. Then I rant and rave to the Lord as I try to follow the lighthouse concept. I can always vent to Him. Then I ask for wisdom to make things work for Billy Ray and the family. I get strength from admitting my disappointment and asking for that help.

I don’t want to close without making a point that could have been missed above. The life we create, including schedules, visuals, etc., has to work for the family as well as the child. That is something too easy to forget. As long as your child is not endangered by your needs you have to consider family needs to. For example, while I do get disappointed if Billy Ray breaks things I am not going to put them all away because I need them for my comfort. I buy cheap trinkets (spoon rests, sugar bowls, etc.) and don’t go with all plastics which bother me. If Billy Ray had pica behavior where he would put broken glass in his mouth I would have to reconsider that because it would be a safety issue more. Where possible family needs are given equal weight. That always has to be re-evaluated by the child’s need for health, safety and development. If there is another way to do things that don’t jeopardize family needs we do that. If it is imperative to his development and safety that’s another matter.

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

Reading the Signs in My Complex Son

When I wrote a Change is Coming on November 13th, it was clear something was on the horizon but it is always hard to be sure what. By Thanksgiving Day we had increasingly out of control behavior. Having ruled everything physical out it was clear that we were in a manic phase. His Bipolar meds had to be changed.

We are reading the signs again this morning. Billy Ray slept long nights several times last week. His support staff had to wait as much as a couple of hours several mornings to start his schedule. Of course, that changed on Saturday the one day we could sleep in because we don’t have to get up to let support staff in. He woke up at 6 ish.

Saturday we had some confusion/agitation probably because of Christmas and having people in and out during the day. He did okay when our consultant/friend, Keddie came with one of her special friends and brought Billy Ray a bouquet of balloons. Of course, he didn’t show his excitement with the balloons until after she left so Keddie didn’t get so to see how much he liked them. Later Ron, his support staff and Ron’s niece came by. He enjoyed their visit but was agitated when Ron left.

Sunday he was great in the morning. Co-operation with allowing Mom to get ready for church after getting him ready is rare but it worked this week. He has been too manic to go to church for several weeks. It was a treat for both of us to go.

A favorite part of church is the music especially songs that he can clap to. When he can get into the music like he does it calms him enough that he can sit through the rest of the service without too many incidents. Yesterday there were Christmas carols during the main music part of the service. I expected we’d have problems with him during the sermon because he hadn’t had the kind of participation in the music he needs to stay calm. Didn’t happen. He was quiet and calm during the entire sermon. He was thrilled when a song after the message was something he could clap to. He enjoyed himself and the congregation enjoyed watching him as always.


Instead of just appreciating the good times, it is always necessary to ask “what’s up with this” because exceptional calm can be a sign of something coming too. Further “signs” came later. He fell asleep at 2:30 p.m., waking up for half an hour about 8:30 p.m. and going back to sleep until 5:45 a.m.

So, as always, I am reading the signs this morning. Is this the end of his manic phase and he is catching up or is something physical coming? I thought I would share this sign reading experience with my blogger friends to help you learn to read signs in your own child.

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

Our Support System

My thoughts are going over the events of the last year and wondering how we got through. There is so much to be thankful for. This is by no means a complete list of all who made a difference this year but I want to say thanks to all of you who made a difference.

We are truly so blessed Billy Ray is here with us. During the 9 days on the ventilator in Critical Care this past July I really wasn't sure he would be here by now. People prayed that I didn’t even know and he is here enjoying Christmas. Of course, having great doctors made a big difference. I can't begin to explain the strength I felt increase when I saw my brother, Jim, walking down the hall. Jim and my sister-in-law were with us through the first few hard days. My mom kept people updated and returned phone calls that I couldn’t possibly do.

I was horrified when they started letting Billy Ray wake up with that thing down his throat. The doctors told me they wouldn't do that when I agreed to let them put it in. His father's description of the terror he experienced waking up on the ventilator was clear in my memory. If it so terrorized my late husband, how would Billy Ray feel. My stepson, Michael and his wife, Rebecca were there when that happened. I had noticed his restlessness and tried several things telling him to blink for yes. He didn't blink until I asked him if he wanted me to go out so "Bubba Mike" could come in. I knew then that his cognitive ability was not damaged from the incident when he blinked so quickly at that cue.

In the picture on the right Rebecca, my mother--in-law and father-in-law are in the front row. Larry and I are in the back row with Michael.

I know I said it before but I have the best mother-in-law you could ask for. She does special things for me personally that I can't possibly describe. I may have shared before that she made unbreakable coasters for the coffee table and put them in a nice basket so that WHEN (not if) Billy Ray throws them they can't hurt anyone. Mom Luci makes it a point to try to understand what Billy Ray can handle and what he loves. She is a constant encouragement about my writing too.

Here is another example of Mom Luci's effort to do something special. She knows that I love music boxes and lighthouses. My Christmas present this year is a mirrored music box with a lighthouse and dolpins. It makes me feel so femine winding it up and looking at it on the top of my computer credenza. She also knows her son and my son well. Larry loves racing especially NASCAR and Billy Ray wants to be just like his stepfather. Pictured are Billy Ray and Larry this morning in the matching teeshirts they got from Grandma Luci.

Our church family has been right supporting us all year. I shared in my previous post how one family even loaned us an RV and another hauled it when Billy Ray was in the hospital so I could stay right there with him. The cookie lady, Donna, making cookies every week to aide with constipation issues for Billy Ray and so many other things from the “family” I couldn’t even hope to list.

Dave Peters has been my assistant in the Lighthouse Parents ministry and a real friend of our family.

I feel like I have another whole family at AMACOM Books who were so supportive of me though they were trying to get my book in print during Billy Ray’s crisis.

The new consultant and friend, Keddie, has helped me with staff training according to my methods so that I could focus on writing. Our county case manager has been there everytime as has his supervisor. I am so glad we were in this county when the crisis hit.

Hope it is going well for you and your sunshines. There are so many stresses but hopefully you will have some time to reflect on the blessings and even baby successes your child has achieved.

Merry Christmas,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com