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

How Do You Do It?

The subject question is a constant for parents of complex special needs children. People who don’t experience what we do with our kids really don’t understand what our day to day life consists of. They know it must be difficult but are clueless about what it entails.

This became even more real to me, when Kate Crow, genetic counselor who wrote the foreword to Parenting Your Complex Child (April 2006), told me that she read the manuscript through twice because it helped her understand her families better.

In her recent post, Suzanne writes about her first experience with “A [Autism] discrimination”. This kind of discrimination occurs in most disabilities. People don’t understand what they don’t know. Media coverage and movies about higher functioning children which don’t include some lower functioning children or adults actually add to the problem. Society expects our children to be Dustin Hoffman in Rain Man or Chris Burke as Corky in Life Goes On.

I have been telling my literary agent that we need a movie to help society know what living with a low functioning child is like. I don’t know that anyone would be interested in it but it would be a real eye opener. I’d be interested to know if you feel like it would help.

This past week I got an invitation to submit a proposal to speak at a conference whose theme will be “Get Real” with several subtitles. This fits somewhat with the 11/29/05 post Unrealistic Expectations.

I have rambled a bit in presenting the problem and not answered the question. There aren’t complete answers to the question. Here are a few thoughts:

Prioritizing even important things helps. Accepting your limitations and those of your child is necessary. We want to go to every doctor’s appointment suggested and every meeting relative to our child. The reality is that there are just too many. Each appointment disrupts our child’s routine, which makes life even harder. If you are trying to maintain employment, several appointments a month threaten your continued employment. Sometimes I have to say to the doctor who wants to see Billy Ray once a month that it would be easier to do every three months and call if there is a problem in between.

Support systems help. See 11/3/05 post Stress and Support Systems for Families of Special Needs Children . Following the lighthouse concept is probably the best answer to how I do it. Without my relationship with the Lord I was making stupid decisions for my son and for myself. Knowing that I can go for wisdom and comfort when neither the professionals or I know what to do for Billy Ray is vital to our survival.

Hard as it is sometimes I have to put my own needs in front of Billy Ray’s. I don’t mean significant needs that pertain to his health and safety. However, if I am going through a tough time with him and we both need a haircut and can’t do it together, there are times that it is better to get my hair cut which refreshes me so that I can hang in there with him better.

This is intended to be a talk back post. What you have the most difficulty with and what helps the most. Maybe we can support each other here.

I hope to write a post tomorrow on Christmas Eve but I don’t have support staff. So if I don’t talk with you tomorrow, Merry Christmas.

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

How Would Grandma Have Accepted my Complex Son

I always miss my maternal grandmother when I am preparing things she taught me to make or enjoying being a step-grandma to my husband’s grandchildren.  It is intensified today because in addition to having just made the yeast rolls she taught me to make when I was so small she had to have Grandpa find me just the right stool to stand on, I have been writing about her in the past few days.  In writing about Grandma the question runs through my head how would Grandma react to Billy Ray?

Grandma was in a nursing home in her small Idaho town at the time we adopted Billy Ray.  He was about two when we were able to take him to visit her.  He danced to music playing in the gathering room of the nursing home.  The residents including my grandmother thoroughly enjoyed that.  Grandma commented that he was full of life.  That was the only time she saw him.

At 23 years old he is still full of life but in a different way.  Now that might mean hyperactivity, throwing himself on the floor in confusion or anger, punching his Mom or support staff and even knocking over furniture.  Would Grandma accept the Billy Ray he is today, I wondered.

The answer came in a strange way on Billy Ray’s birthday.  We had invited the niece of our support staff to join us for his birthday lunch.  Ron was sitting between Billy Ray and his niece.  Quietly observing the higher degree of patience he exhibited with my complex son than with clearly bright niece, I saw myself in his responses.

Comments from people about what a saint or how patient I must be to take care of Billy Ray used to make me angry.  Now I have come to see that my tolerance for Billy Ray’s problems is far greater than it is with “normal” kids.   Acceptance of what would be misbehavior on the part of a normal child comes easier when it is Billy Ray.  Sometimes I shock folks who are trying to compliment my patience with my son by telling them I am no more patient than they are just different.  I would not have the same patience with their children that I do with my son.  Some people could handle teenage rebellion better and some could handle special needs children best.

So back to Grandma.  I wrote the other night that Grandma and I were a lot more alike than my mom and I.  Grandma had 13 kids and lots of grandchildren.  I remember her yelling at some of the kids.  I can’t ever remember Grandma yelling at me.  As a child I had some emotional issues of my own and was very needy.  Grandma understood me and loved me unconditionally more than any person in my entire life.

She would have accepted Billy Ray as he is.  Why did I even ponder that for a moment?

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

Anticipating Your Complex Child's Reaction to Stress

After just losing our furnace for two days last week, a tree fell on my husband’s pickup today bringing the power line down with it. While we were waiting for the power company to arrive I instructed support staff to give Billy Ray some of his as needed medication for agitation because it was clear once they turned the power off we were going to have agitation big time.

Though his “Papa” is a retired electrician Billy Ray does not understand why the VCR doesn’t work when the power is off. Flashlights are kind of fun but that VCR or his boombox better be available on demand or we have issues.

When I was talking to someone about Billy Ray’s reaction, she said “oh I’m sure he just goes with the flow”. NO!!! A tree coming down and losing electricity is stressful on any family but when your child doesn’t understand what is happening to his world all of a sudden it can multiply that stress many times over. He is confused by the change in circumstances and picks up on the stress even if he doesn’t understand. He can become totally out of control and agitated it if we don’t deal with it quickly.

For all you young parents, important skills to cultivate are anticipate reactions, communicating what is going on to the child and adapt as much as possible. I knew he was going to be bothered by service people in and out and the noise involved so we prepared with extra medication and by having him listen to his walkman which toned down the noise at least. Additionally, we took him outside to show him the tree and try to help him understand as best we could. Later we took him out for an early dinner to get him out of the situation for a while.

We still got agitation by nearly seven hours without electricity but we were able to reduce it because we have learned to know what will trigger it.

The ability to think ahead to how your child may react to stressors becomes second nature after a while. When you have a little more warning than we got with the tree coming down you can do things that don’t require medication to deal with the stress. Planning for situations helps your child adjust.

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

Billy Ray and Penny Lane, Service Dog

After several days (and sometimes weeks) of mania with Billy Ray's Bipolar we tend to sort of catch up. This picture was taken a few months ago but demonstrates what is happening in our house this morning. Billy Ray has woken up put his hat on, interacted with his service dog and then covered her up beside him.

Some will think this is corny but I count this dog as a blessing. We haven't been able to take the bark out of her so she hasn't been able to be out in public as much as his last service dog. However, Penny Lane is a wonder in terms of detecting his moods and comforting him. I can safely go back to sleep when she is with him and catch up on some of my own sleep. If he is having breathing issues or wakes up she has proved herself credible to watch him (she comes to get me consistently).

Hope you are having a good day in this busy Christmas season.

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

Reflections on Billy Ray's Birthday

I confess that we were having a bit of agitation as we were getting ready to go to Billy Ray's birthday lunch and I forgot to take the camera. Thus, I thought I would share a few of pictures of times I am reflecting on tonight.

On the right is the picture taken the day of the adoption hearing in 1984. It is scanned from an old photograph and I can't get it straight no matter what I do.

I have been thinking a lot about those days on Billy Ray's 23 rd birthday today. Pictures of precious Daniel on Suzanne's blog and beautiful Griffin on Griffin's Mom's blog lately remind me of the sweet times with Billy Ray and the realization of how far we have come.

Who could have known in 1984 that life would take us in the turns it has. We have learned so much together and I have learned so much from Billy Ray. Sometimes there was no other way to learn but by our bootstraps.

I shared in my book that a special uncle was feeling sorry for me because he felt I had made so many sacrifices to be Billy Ray's mom. It has been a different life than I might have experienced but I wouldn't have missed it for anything.


This is a picture of Billy Ray and I taken a couple of years ago. We really have come a long way baby, as they say. I don't know what I would have become or what Billy Ray would have become if we hadn't gotten together. We are probably both different as a result. All I know is that I wouldn't have missed it for anything.

I promise I will get some recent pictures of my own sonshine real soon.

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

Billy Ray's Birthday

It is freezing rain and slick roads between here and Bend where we had planned to take Billy Ray for his birthday lunch at his favorite, Chinese buffet.  It is too dangerous to make the trip.  Expecting him to understand when plans don’t work out is expecting more than he is generally able to give.  Nevertheless, it is not as bad as I feared though he is agitated.

There is a Chinese restaurant in our little town but it is closed on Mondays.  There is a truck stop that has good food but it is like a noisy cafeteria.  The noise can set him off.  The other choice is Mexican restaurant which can set off his gastritis.  Given the choice this morning he decided on the truck stop.  We will have to give him extra medication to help him stay calm.

I will try to get some pictures of him later today to share with you.

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

Bipolar and Autism as Billy Ray Experiences It

Bipolar is basically mood swings from high to low. It is cyclic with big highs (mania) and desperate lows (depression). Thus bipolar is often referred to as manic/depression as well. Some folks who experience this have what is called rapid cycling. Billy Ray can be calm one minute and then manic the next. He doesn’t experience as much depressive state.

It is interesting that Griffin’s Mom wrote in her blog a few days about bipolar because I have been doing internet research on Bipolar because it has been suggested by the psychiatrist that the out of control behavior Billy Ray is experiencing maybe a worsening of his bipolar. I have been told there is a link between bipolar and autism and I am hearing of more children who have both diagnoses. Thus have been trying to understand where one comes in and the other one comes in.

I don’t talk as much about Billy Ray’s experience with bipolar. Maybe that is because it has been controlled with medication a lot of the time since his diagnosis. There are things that occur in Bipolar that could also be symptoms of Autism or ADHD.

When he was seven, he had already been diagnosed with ADHD and was using stimulants for that. We had experienced a family trauma. My late husband had been in the hospital for two months with lung problems. A few weeks after his return home he drove the little Mazada pickup that was special between father and son to observe the highway construction project he had been working on before his hospitalization. An 18 wheeler pushed a car across the median into Raymond and he was back in the hospital. The combination of Dad being back in the hospital and their little truck being totaled set in motion Billy Ray’s first manic episode. The psychiatrist explained that bipolar can be brought out younger than it normally would if there is some sort of trauma.

It was clearly different than what he had exhibited with ADHD. He was literally a wild man and incredibly strong. The developmental pediatrician sent us to a pediatric psychiatrist. It didn’t take long for the psychiatrist to make the diagnosis of bipolar. Once we had established that he was able to control it with meds for a number of years. Billy Ray had not been diagnosed with Autism at that point though I now understand that he had symptoms of mild autism I didn’t recognize then.

I wanted to find links for you which would explain how bipolar manifests in an Autistic child. That was difficult to find. I did find a MSN group site Bipolar and Autism. The beginning of it is fairly detailed and a bit hard to read, however, when you get to “Mania” it has specifics about mania in an Autistic child might. It is not clear who this group is so I am not going to quote it as authority. Here’s the link, you can decide for yourself. http://groups.msn.com/TheAutismHomePage/bipolardisorder.msnw.

Here is how Billy Ray experiences hyperactivity and mania (which can be combined but aren’t necessarily):

Hyperactivity: A basic inability to sit still or remain focused on anything. It includes bouncing up and down in place or running and throwing behaviors. Note that some of these behaviors are also a part of mania as we experience it. The main difference is the degree of excitement involved. Hyperactivity can quickly escalate into mania for Billy Ray.

Mania: Similar to the mania in adults with bipolar disorder (sense of being invincible, no impulse control, sleep issues, irritability, etc.), but it also includes the following:

• Hitting, kicking, pushing.


• General silliness that is out of control.


• Running from us, both outside or taking off across the room to grab something.


• Throwing things down the stairwell or just aimlessly across the room. This can be anything he sees sitting on the kitchen counter, clothes from his hamper, his shoes, garbage, etc., particularly something that is out of its normal place. We had to take his wastebasket out of his room because it seemed he couldn’t stand even small amounts of trash in it. Now he is beginning to do the same with kitchen garbage.

That old question of where is this coming from is a constant source of wondering for me. I pray a lot and review his journals repeatedly to try to figure how to handle each new challenge. In Billy Ray’s case, I have basically come to understand that Autism responds to the programs and schedules that I have learned works for him. For the most part when he is not responding to things that have worked in the past, we have tried to adapt and communicate with him and he is still manic it is most likely coming from bipolar and we need to call the psychiatrist. Usually the only thing that has worked for bipolar in Billy Ray is medication no matter how much I would prefer to avoid it.

Billy Ray recently started on a new medication. He is not perfect but he sure is better (sigh).

I would love to hear from others of you who have children with the dual diagnosis of Bipolar and Autism especially if they also have Down Syndrome.

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

Change in Plans

I am writing this late Thursday evening because things could get crazy around my house.  The motor in our furnace went out tonight.  According to the cable company it was 18 below zero last night so it could get cold tonight.  My husband has it temporarily running for the moment.

It got slightly smoky in the house when it happened and, of course, the smoke alarms went off.  Fortunately, Billy Ray sleeps hard when he first gets to sleep and he has his headphones on listening to the oldies so he actually slept right through the noise.  The last time the alarm went off it escalated him a lot.

Billy Ray does not understand changes in routine or being woken up once he is asleep.  I was thinking how hard it would be to get him out of the house in the event of a fire.  He gets made if we wake him before he is ready.  Fortunately he no longer has school buses to catch.

We are waiting for the furnace man to call.  I am going to go ahead and post this since I promised the bipolar post and some of you may be looking for it in the morning.  It could be a long night.

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

Billy Ray and Cloud (Horse)

I am working on post about Autism and Bipolar for you. It is getting late and I have lots more to do on it. I will finish it for tomorrow.

For today here is an example of Billy Ray's community activities. He went to the church to do some volunteer tasks and out to lunch with his support staff. Then as a treat he goes to visit a horse named Cloud owned by a waitress we met here in LaPine. Most days Billy Ray goes to visit Cloud and brings it a carrott. Cloud really seems to enjoy the visits as much as Billy Ray does now.

Billy Ray is going to be 23 on Monday. I will try to get a picture at his birthday celebration. We will see if he co-operates.

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

Ten Random Things About Me

I was tagged by Lora, My Beautiful Child Griffin & Autism, who was tagged by Christina, Mommy Guilt to tell ten random facts about herself. Here goes:

1. My favorite thing is to soak in a hot bathtub. Of course, you never know what time it will be because I to do it when support staff is here with Billy Ray or my husband is available. Sometimes it is 2 in the afternoon when I get in there.


2. This blog is usually written in my bathrobe with my morning coffee right after support staff arrives to be with Billy Ray.


3. I have a great mother-in-law.


4. I love lighthouses and angels. My house is full of them on rugs, dish towels, etc., etc.


5. I am such a kid at heart when I get email from exciting places like Australia and the London.


6. I hate Beef Barley soup.


7. I miss my longtime secretary, Linda, who was the only person who could find anything on my desk except me. (Of course, after she was there I couldn’t find anything on my desk.)


8. I love to walk in the storms on the beach. Maybe that is because I was born on the Oregon coast.


9. My grandmother had 13 children and I was the only one in her family who wanted that many. Now that I have Billy Ray, I’m glad I stopped at one.


10. I love tea parties with my granddaughters, Elora and Alena, when they visit.

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

Sleep Deprivation

Sleep deprivation has a way of affecting every area of life.  Many children and adults who experience Autism or Bipolar and other special needs have issues surrounding sleep.

Sometimes when Billy Ray is experiencing a manic phase with his Bipolar he will not sleep for 40 hours or more and is active the entire time.  Other times he is up and down most of the night.

Once a case manager wrote in a report that I didn’t want to give Billy Ray additional medications to lived our life sleep deprived.  WRONG!!  Nothing that works for Billy Ray long term.  If he takes a sleep medication longer than a few days or a few weeks, at most he builds up tolerance to it.

Reactions to routine events change when you are tired. You do and say things you would never do if you were well rested. If someone calls on the phone you may sound like a drunk when really you are just catching a nap while your child is napping.   For example, yesterday I was trying to take a nap in my recliner before support staff left.  I woke up to the sound of the phone ringing.  It was my editor.  I didn’t really remember calling her and rambled on for a minute totally out of focus.

Then, of course, there are mornings like this morning when you feel “hung over” because of actually sleeping.  Billy Ray lost his covers at midnight and 3 a.m. waking up until I covered him up again and went back to sleep.  We actually got several hours of sleep.  My head is foggy, not being used to so many hours of sleep.

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

More on Behavior Medication

Dare I hope that this is for real and not another “honeymoon”?  As I have been sharing Billy Ray has been experiencing a change in functioning and behaviors.  His near fatal illness this summer that landed him on the ventilator for 9 days probably has not helped.  Then there was the question we talked about the other day “where is this coming from”.  Could it be the dementia he experiences or Autism or something else we haven’t figured out.

We are truly blessed to have brought together a great medical/psychiatric team who listen to what is occurring and value the documentation that we do.  I know that this is not always the case for many families so appreciate it very much.

I would prefer that Billy Ray never have to take additional behavior medication.  However, with his confusion increasing and his behavior becoming too risky we had to relook at it.  Last week he was started on a new medication.  I don’t share the drugs he is taking much because they work differently for different people.  I discussed in this my prior post Behavior Medications – Friend or Foe, http://parentingacomplexchild.blogspot.com/2005/10/behavior-medicationfriend-and-foe.html.

This past week we have Billy Ray back to where he can respond to things like schedules, visuals and in home approaches.  Past history would imply I shouldn’t get too excited because honeymoons on new medication don’t always last.  Cautious optimism is warranted.

I continue to believe that maintaining Billy Ray on the lowest amount of medication and using the highest degree of non-medical methods at home is the most desirable approach.  We strive to do that but there are times you have to work with medications in order for the other methods to work.

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

Where is this Coming From?

Time after time, we have to ask the subject question.  Multiple diagnoses can have similar symptoms.  When there is a change in behavior or other responses, it is important to get an idea where the issue is coming from.

As most of you know, Billy Ray, almost 23 years old, has the dual diagnosis of Down Syndrome and Autism as well as Bipolar and ADHD.  Additionally it is believed he has early onset of the Dementia that some Down Syndrome people experience.  It usually occurs in the mid thirties but Billy Ray began to show symptoms at 16 two years after a series of major seizures believed to be from a reaction to medication.

The “clinical trials” we have been referring to in the past couple of days make a big difference.  For us clinical trials are mostly documentation that we share with his medical and psychiatric professionals.  It helps the doctor to see what is happening and make informed recommendations for treatment.

It may also be that his schedule or sensory stimulation needs to be adjusted.  I am so grateful to have the journals I have been keeping to look back and glean patterns to help answer the question “where is this coming from?”

Until Monday,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.ligthhouseparents.com

Doing Your Own "Clinical Trials"

I have been thinking more about Dr. Sanghavi’s criticism of the family he profiled in The Secret Truth (Boston Globe Magainze 12/04/05) for performing “their own clinical trials”. Families of complex (more complicated) special needs children have few options except to become proactive by doing their own “clinical trials”, live in survival mode not really being able to get anywhere in terms of making things better for their child or place their child out of their home.

As Dr. Sanghavi says in the same article “autistic people are like snowflakes: No two are alike, and the clinical spectrum ranges from severe disability to near normalcy.” That is certainly true with only one diagnosis. Adding the dual diagnosis of Down Syndrome and Autism makes the uniqueness even stronger. Each child will manifest the symptoms of each diagnosis differently than if he experienced a single disability. When you add mental illness diagnoses or other medical and developmental disability diagnosis, it really muddies the water.

The late Dr. Ron Roy, Billy Ray’s first pediatric psychiatrist used to say that it would be impossible to cover every possibility in medical school. Combinations of diagnoses change the way any one disability plays out in an individual. In a recent conversation with prominent medical schools, I asked how much training in dealing with developmental disabilities was provided to the average pediatrician (who do not go on to become a developmental pediatrician). I was told that it was “touched on lightly”.

In the Foreword to my upcoming book, Parenting Your Complex Child (April 2006) , Kate Crow, Genetic Counselor writes: “Perhaps the most valuable parts of this book are Ms. Morgan's suggestions for observing and keeping records. Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”

You are the most important expert in your child’s care. Don’t let disrespect for your position or expertise relative to your child defeat that.

I did want to make a side note because I am getting emails when I don’t do Sunday blogs. We do not have support staff on Sundays and I try to do as much Mommie time as possible with Billy Ray. If we are able to go to church (meaning BR is calm and the roads aren’t too icy) I can’t get to the blog until late afternoon. If he is having a bad day I might not get it done at all. Thus, I am suspending Sunday blogs at least for now.

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

Our Children are like Snowflakes...Unique

Yesterday I was reading a blog I like (Susan Senator’s).  Her post The Mythical Autism Beast (http://susansenator.com/blog/2005/12/mythical-autism-beast.html) caught my attention for a number of reasons.  This post begins by quoting an article from The Boston Globe Sunday Magazine, 12/4/05 by Darshak Sanghavi, titled The Secret Truth.

Dr. Sanghavi’s comment “AUTISM FRIGHTENS PARENTS more than almost any disorder, since it implies that the child can never function independently in society and may never fully reciprocate, or ever fully appreciate, the expressions of love” which “got under my [Susan’s] skin also bothered me.

Any diagnosis is frightening if you don’t know what it means.  For example, when Billy Ray was diagnosed with pediatric bipolar the psychiatrist provided me with literature which said that the diagnosis of pediatric bipolar was more undesirable than a diagnosis of cancer.  I asked the pediatrician about that statement.  She replied that pediatric bipolar will go on and on and treatment is more difficult.  Cancer can be cured or will, unfortunately, end at some point.  I think many parents may see the diagnosis of Autism similarly because there are so many unknowns.

Susan ends her post with “What we need is more honest and positive accounts of living with autism. Parents need facts that help them strategize and advocate for their kids, not horror stories and hopelessness. They need hugs and encouragement. Autism need not be a death sentence. Our children were not stolen; we just have to look a bit harder to see them.”

I couldn’t agree more.  In prior posts herein, we have discussed that the best way parents can support each other is by being open about what we experience.  Disabilities have been considered a stigma of sorts and just not talked about unless necessary.  Parents are frightened by the diagnosis more because so little is known rather than the disease itself.

After reading Susan’s blog post and going to The Globe to order the article, there were other things that I want to comment about too.

The article by Dr. Sanghavi is basically about the vaccine-autism controversary.  He profiles a family whose sons experience Autism, the beliefs they have established and the choices they have made in doing what is best for their sons.

In the same paragraph, that Susan quoted the first sentence (quoted above), Dr. Sanghavi writes: “Though portrayed in the public imagination by characters such as Dustin Hoffman in Rain Man, autistic people are like snowflakes: No two are alike, and the clinical spectrum ranges from severe disability to near normalcy.”  Absolutely!!

That is exactly why I wrote Parenting Your Complex Child (AMACOM Books April 2006).  I devoured all the literature I could on Autism when Billy Ray first demonstrated symptoms and we finally got the diagnosis.  Some books were helpful and some were not.  Many told me what I should do for Billy Ray specifically.  Those generally didn’t work for us.  The ones that helped the most, such as Temple Grandin’s books and articles, told what she experienced.  I could then glean information and apply it to help find out what worked for Billy Ray.  My book recognizes that all disabled children are unique whether they have complex issues or not.  It seemed more helpful to encourage parents in methods for determining what worked for their own child than to tell them what to do because it worked for my son.

Dr. Sanghavi is somewhat critical of the family for performing “their own clinical trials with a study population of two, or sometimes one.”  That statement got under my skin more than the one that got to Susan Senator.  As Dr. Sanghavi acknowledges there are not many larger studies to help doctors help parents.  To make matters worse developmental disabilities are not taught extensively as a part of medical school.  Parents must do their own investigation, sharing results with the doctor involved, of triggers, problem areas and what works for their own “snowflake”.

I don’t know where to come down on the vaccination and dietary issues.  I highly respect the work done by Dr. Rimland and Autism Research Institute.  I have devoured his materials and tried many of his suggestions.  Again, complex children are unique.  What works for one may not for another.  The fact that they didn’t work for my son at the stage of his life when I learned of such things doesn’t mean they are not good suggestions for your child.

I agree with Susan that Autism is not a death sentence.  It is a life changing experience.  Nothing will be the same as we expected.

I was reminded of  the article “Don’t Mourn for Us” by Jim Sinclair I read years ago and recently found again at http://www.autistics.us/library/dontmourn.html.  Mr. Sinclair eloquently makes the point that when we grieve for our child who has Autism we are wishing that we had the child we hoped for (the perfect one that rarely exists) and want the Autistic one to go away.  He states that without Autism the child would not be the same person as he is with Autism.  According to Mr. Sinclair “Autism is a way of being. It is not possible to separate the person from the autism.”

See my recent post thanking Billy Ray’s birth parents where I compared his life to the classic movie “It’s a Wonderful Life”.  Our mission, should we chose to accept it, will change our outlook on everything about life.  As we accept our child for who he is and help him do what works best for him including but not limited to medical care, educational and home programs, a quality of life happens that cannot be described fully.

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

Complex Child/Messie Mom

In my October 31, 2005 post, Temperamental Mismatch, I talked about being a “messie” and how that bothers Billy Ray since Autism is a part of  his life.

It is a Catch 22 of sorts.  Billy Ray’s ability to tolerate clutter is reduced during times he is experiencing confusion or agitation for other reasons or even unknown reasons.  When he is having a difficult time he generally sleeps less and requires even closer supervision.  My energy level as well as my ability to spend enough time on household organization and cleaning is reduced during those times.

To the degree possible involving Billy Ray in the solution is the most desirable.  When he is determined to march around the house to get rid of excess energy (I only wish he could share some of his energy with me), I am suggesting that we put one item at a time away.  Maybe it is a paper or mail left on the breakfast bar.  Instead of my following him while he marches around the breakfast bar, I suggest that we carry the papers to my office.  We are involving him in all the household projects that he will participate in.  For example, I bought a lightweight cordless vacuum from the Black and Decker outlet store.  He is able to vacuum throw-rugs (sometimes with my hand over his hand to guide him).  He may only have a tolerance to do one or two a day but it is progress.  Billy Ray and I can unload and reload the dishwasher together.

As a “perfectionist messie” (see www.messies.com or multiple books by Sandra Felton including The New Messies Manual) it is hard for me to do small projects, I want to get it all done at once.  Ms. Felton teaches “baby steps”.  That is the only way it works for us.  I am learning that I can sweep or mop the kitchen floor using the Swiffer type disposable dusting or wet clothes while I am making Billy Ray a bag of microwave popcorn.  I can file one or two items from my desk while Billy Ray is on the toilet because I can hear him and see the bathroom door from my desk (my office is next door to the bathroom).

Billy Ray’s impulse control issues are a problem.  He will throw things that are used for decoration or things that are out of place.  My wonderful mother-in-law helps so much with this problem.  Despite vision issues of her own, she made coasters out of materials that won’t hurt anyone or break WHEN (not if) he throws them and put them in a basket with a silk flowers woven around the handle.  They are lovely on my coffee table, which makes me feel better and safe for Billy Ray.

Adapting is the key to this problem as well as other issues with Billy Ray.

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

Parents Who Make A Difference

I showed Billy Ray’s support staff a video that I like because it is proof that all the documentation, schedules and visuals we do work and can make a difference in the life of a person with Autism and various special needs.   I love that video done by Dan Hobbs called Gentle Teaching (available at http://www.nau.edu/ihd/positive/vids/video.html) because it gives me hope.  I am in no way associated with the Positive Behavior Support Program at the Northern Arizona University but I wanted to give you that link.  Mr. Hobbs shared the story of Amanda and his involvement in helping achieve her mother’s dream for Amanda

I recently read Eustacia Cutler’s book A Thorn in My Pocket (Future Horizons 2004) about her life as Temple Grandin’s mother.  In case you don’t know, Temple Grandin, Ph.D. is a well known expert in Autism.   She has authored numerous books including, but not limited to, Emergence: Labeled Autistic, Thinking in Pictures. Ms. Cutler struggled to help her daughter find her way despite a earlier time when services were not so prevalent.  Dr. Grandin has been called a national treasure because for the first time society has been able to understand Autism from someone who experiences.

I have been devouring the writings of Sue Rubin recently.  I just read where she said that facilitative communication was the key to her success and the key to success at facilitative communication was her mother’s persistence.

The above-referenced mother they kept on struggling.   Not all parents do that for years on end to reach their best potential.  Parents who do stay with the task make a major difference in their child’s life.  You might say behind every successful disabled person is a parent with commitment.

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

Documentation is Not a Dirty Word

Documentation seems overwhelming especially when you are chasing a busy complex special needs child.  Just this morning I am printing out the summary that I create from the more detailed journal.  It clearly shows the trial of a new medication not only didn’t help but worsened the problems.  Two hours after taking the medication behaviors increased.  It shows his changing behavior and similarities of when behaviors occurred so you catch triggers.

Billy Ray’s present psychiatrist and I work well together.  It is not necessary for me to impress him that I know my son.  However, when you are trying to get professionals in various fields to listen to you having this documentation system helps a great deal.

The documentation system I use is contained in Parenting Your Complex Child (AMACOM Books April 2006).  When it comes out in April I will put the forms that I created to use for Billy Ray on my parenting website.  As I make updates in my system or create new visuals they will be on the website for your use.

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

Thanks to Billy Ray's Birth Parents

I starting writing this post Thanksgiving morning and struggled with whether to just go ahead and post it or to be honest about what our day turned out to be before it could be published.  It seemed the best way to support parents and caregivers with their complex special needs children is to be honest about our experiences.  Often parents feel so alone because they think no one can understand.  That is because those of us with the most complex children can’t or don’t always share our experiences.

What follows is the post original started Thanksgiving morning:

There is something else I have wanted to say for all these years since Billy Ray’s adoption in 1984.  I have contemplated how to do it so that it would get to the right people.  Would an open letter to Billy Ray’s birth parents in the newspaper be actually seen by them in such a large metropolitan area if they are still there.

William (the middle name Raymond was added at adoption for my now deceased husband and we call him Billy Ray) was born in December 1982 in southern state.  During that time, we were on a waiting list with a doctor in our state for a newborn child with Down Syndrome.  The year and a half we were number one on waiting list did not bring us a baby.  Abortion was a more common to mothers who had prenatal testing and realized they were carrying a child with Down Syndrome.

Since Billy Ray came to us at 15 months old, I have often thought of his birth parents who felt they could not handle his Down Syndrome.  I have wanted to hunt them down and say thanks for giving society the blessing that he is and thanks for giving our family the joy and, yes the sorrow, which has made the joy greater.  Billy Ray is so much more complicated than they could have known when he was born, experiencing the dual diagnosis of Down Syndrome and Autism plus bipolar and ADHD.  Still he has joy in life and shares it with us all.  I am so thankful his parents gave him a chance to experience life.

I realize the likelihood of Billy Ray’s parents ever seeing this is slim.  Somehow, I just needed to express it anyway this Thanksgiving morn.

Since filing that post away for another day, we have had our challenges with Billy Ray including physical aggression.

A discussion about the classic movie It’s a Wonderful Life on one of local television programs the other day made me think about another wonderful life, Billy Ray’s life.  In the movie, an angel takes George Bailey (played by Jimmy Stewart) around to many people and shows him how their lives would have been worse if George had never been born.

Raymond, my deceased husband, was changed dramatically by Billy Ray’s love for him.  Because of his past experiences Raymond had difficulty relating to some people.  During the last five years of his life Billy Ray became his reason to survive.  Raymond’s older son said that Billy Ray was the best thing that ever happened to his Dad.

It would take a book by itself to explain the changes Billy Ray has made in my life.  People frequently say how patient I am with Billy Ray.  The truth is he has demonstrated a great deal of patience in teaching me what he needed me to be as his Mom.  I am more tolerant and patient now than ever before but it is only because I have had the love of my son all these years.

The things that I share in my book Parenting Your Complex Child (AMACOM Books April 2006), my websites, this blog and the support that we have been able to offer other parents would have happened if Billy Ray hadn’t trained his Mom first.

He touches the lives of people unexpectedly.  Former clients of mine with dementia who couldn’t remember me somehow remembered Billy Ray and he brought joy to them.  Every week he delivers Meals on Wheels and touches people.

On behalf of all the people, Billy Ray has touched including but not limited to me, thank you to William’s birth parents for giving us this wonderful life.

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

Maximizing Independence for Low Functioning Special Needs Children

Self esteem is important to all of us whatever our functioning level.  It is important to note that low functioning children and adults pick up on our attitudes and it impacts their self esteem greatly.  Little things that we may not even think about makes a big difference in how a task or attitude will effect a disabled person’s self esteem.

I cringe when I hear support staff say to Billy Ray “help me make your bed”.  It is his bed and his job to do it to the degree he is able.  The cue needs to be “it’s time to make your bed, I’ll help you if you need help.”  There is nothing wrong with needing help.  Taking ownership of his responsibilities instead of helping him gives Billy Ray the sense of needing to be taken care as opposed to being able to take care of himself with a little help.  It has an definite impact on how he feels about a task.  You can see it in his reaction to the task.

Considering the abilities of low functioning Autistic or other special needs person is an important first step to helping them feel good about themselves.  When evaluating a task or activity allow your child to have the highest degree of independence reasonable for him.  Allow him to feel good about himself for doing what he can do independently rather than more dependent than he needs to be.   If he can participate in one part of an activity independently he can feel good about that one thing.

During the absence of his pediatrician Billy Ray was seen by the medical provider for my husband and myself.  Since both my husband and I have arthritis I had discussed with her which of us was in better shape to carry 40 pound bags of pellets upstairs to the fireplace insert to heat of our former house.  After meeting Billy Ray, the doctor asked why Larry and I were carrying the pellets upstairs when Billy Ray was part of the family.  I had concern that he would lift wrong, etc.  He is quite strong but doesn’t understand the concepts of picking up heavy items and also how to sit them down safely. After clearing the idea with his pediatrician when he returned, we created a three way team to deal with the problem.  My husband would assist Billy Ray in picking up the bag of pellets, Billy Ray would carry them up the stairs where I would meet him to guide him through easing the bag to the floor by the fireplace.  He took pride in knowing that he was doing something Mom couldn’t do and it hurt Dad’s back to do.

There is a tendency to be so protective of our disabled children that we don’t allow them to do what they can do.  Everyone in the family needs to do what they can do.  Your child will feel a part of the family if allowed to participate to the fullest degree he can as a team.

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

Regrouping...It's Working...Yes!!!

Elation seems an inadequate word to describe the sense that you get when some trigger to difficult behavior becomes clear through your observation and documentation or find a new method that works better for your child.  As I have been sharing with you Billy Ray is changing.  We have been regrouping using the same system to design a new schedule and sequence within activities to find what might work best for him given recent changes.

We have been working on it just a few days.  Already I’m beginning to see improvement in Billy Ray’s self esteem and comfort.  For example, as I shared a few days ago, I did a visual showing the process required for Billy Ray to prepare his own breakfast.  I modeled assisting him with the process to a concerned support staff who was concerned about Billy Ray getting burned (a valid concern).  Sitting at the table with Billy Ray while he ate the meal he just prepared Ron said “you made your own breakfast”.  The grin on Billy Ray’s face showed his staff the importance of the activity to his self esteem.

I listened to them going through the sequence in this activity this morning.  Yes!! It worked.  It was worth the effort on my part.  Additionally it reduced stress for Billy Ray and everyone involved with his morning routine.

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

Some Things Don't Change Because of Disabilities

Teens and young adults have this thing about parents’ cars even when they have their own.  Why should a low functioning person with Down Syndrome and Autism be any different?  Billy Ray has an old van (my former car which I kept when I bought a little station wagon several years ago).  His support staff drives and they use it for his community activities.  Billy Ray still loves to use Mom’s “station” every chance he gets.

This morning we have lots of snow.  That makes the perfect excuse for him to borrow Mom’s car.  The all wheel drive will be best to deliver Meals on Wheels to seniors.  He saw my keys on the breakfast bar a little while ago.  “Snow” he said, then “keys.”  Yes Billy Ray you can borrow Mom’s car today.

It is nice to know that disabilities do not have to take away all the normal mother-son things.

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

Unrealistic Expectations

We can get frustrated as parents when no one seems to understand our children.  I spent years being defensive and angry with lack of understanding for Billy Ray.  It felt like people who did not have clue what we experienced were judging Billy Ray and me.

One day in a conversation with a friend, I tried to explain why Billy Ray is often dressed well and I am in jeans with wet hair and no makeup when we get to church on a Sunday morning.  Doing my makeup, hair and getting dressed before giving Billy Ray’s bath is a waste of time because he splashes water and I get lotions and toothpaste, etc. all over me getting him ready.   Once he is ready to go, he thinks it is time to go.  To make him wait too long for me to get ready will likely agitate him to the point he may flop on the floor in confusion or agitation and be unwilling to go out the door.   Sometimes it is a choice to go without the primping I would like to do for my own appearance or to stay home.

I was hurt by her seeming lack of interest in my explanation. Later as I thought about the conversation, it was like a light dawning.  How could she absorb what I was so laboriously heaping on her.  Would I have been able to do that before Autism came into our life?  Probably not.

During my husband’s recent visit to his sons in California, my consultant friend, Keddie, came over to spend the evening and night with us.   She left the guest room door open because she said she wanted to get a better picture of what our nights are like.  The next morning she told me that while the journal we maintain on Billy Ray’s computer show the times we are awake in the night she would never had realized what the nights are really like had she not come for the night.  Keddie is a skilled consultant who has many years of experience with people who experience of variety of disabilities.  If she needed to see it to grasp the bouncing, noise, and interrupted sleep how we expect the general public to comprehend it.

The same is true of professionals or people we meet in the community.  They see our children as they are when they meet us.  What we experience everyday alludes them because our children may behave one way in one environment and another way in a different place.

One of the biggest jobs we have as parents is to educate those involved with our children.  It is just as unrealistic for us to expect them to understand as it is for them to expect our children to act in certain ways.

I just wanted to add too that the our children have a big job in educating us as parents.  On occasion when I will instruct Billy Ray to be a little quieter in the morning he will say “I can’t”.  My lack of understanding must frustrate him at times as much as society frustrates us as parents.

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

Using Other's Experience to Adapt for Your Child

In her article KILLING AUTISM IS A CONSTANT BATTLE, Sue Rubin talks about the morning routine she experiences. She relates waking up screaming and the need to run around the house fast – impulses she can’t really control.
Literature relative to Autism and other special needs provide methods for working with our children. What I find the most helpful is articles like Sue Rubin’s and much of Temple Grandin’s work where they share what happens in a day to day experience. That understanding of why Billy Ray may behave the way he does rather than just what to do about it gives me something to build on.
In redesigning Billy Ray’s schedule this weekend, I thought about his apparent need to just run and pace in the morning. Instead of fighting it we just put a place for it in his schedule right after testing his blood sugar and taking some important medication. We encouraged him to put his walkman on and do his “circle” (running around the breakfast bar and through the kitchen and living room). This acceptance of his need to do this seemed to make him feel more comfortable. When he was finished, he was able to settle down and stay more focused on making his breakfast and the rest of the activities of his morning.
The writings of those who are willing to be open about their experiences makes such a difference in our ability to understand and adapt to our children.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/

Regrouping AGAIN...Day 1

Today was the first day of starting over to find out what is bothering Billy Ray and causing his increased agitation/aggression. I am exhausted but it seems important to share this process with you.

Billy Ray was awake at 4:30 a.m. having fallen asleep early last night and only waking once during the night. We did get some sleep albeit in two parts. I am thankful for that.

Keeping him in his room so as not to wake up my husband, I put a movie on for him and sat reading his journal (on the computer in his room). It does appear that we have a conflict going on inside of Billy Ray that I suggested yesterday, he wants to be busier, is more confused than normal and is not physically back to normal from the health crisis he is trying to overcome.

I think I figured out at least one small thing that may help and created a visual for it.

I learned a hard lesson for our long time developmental pediatrician, Dr. Mary Lynn O’brien. That was to evaluate the risk in letting Billy Ray do an activity opposed to the loss in the quality of his life if he does participate.

His present support staff is a caring man who is very protective of Billy Ray. He is worried if Billy Ray comes near a hot stove he will get burned. That is certainly a risk.

In teaching Billy Ray to do as many independent tasks as possible I try to teach him to do them safely. See the above picture. It is not the best quality picture but I think you can see what I am saying. He is taught to hold onto the handle of the skillet while scrambling his eggs and to stand slightly back. He is able to do a pretty good job of it. His self esteem is enhanced by cooking his own breakfast. It is probably worth the risk of a burn, as long as we minimize the risk as much as possible.

I am sure this is not the only issue. I looked at the schedules before we moved (just before Christmas) and before he got so sick early summer. There is a long ways to get him back to normal for him. Baby steps and adapting will be necessary. Communicating with Billy Ray and with the professionals involved are also going to be needed.

We started again today. We will keep you posted how it goes.

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

Regrouping AGAIN...More Communication by Behavior

Yesterday was a contradiction in many ways. It started out by getting my grandma’s recipe for scalloped potatoes in the oven and making the stuffing for the turkey. I was thinking of what I am thankful for. When I got to a stopping point in dinner preparations I came into my office and started writing a blog post relative to something I have always wanted to express…my gratitude to Billy Ray’s birth parents for giving him life and placing him for adoption when they didn’t feel they could handle a disabled child.

Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.

Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.

When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.

We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.

After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.

Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.

While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.

In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.

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

Autism Acceptance and Cure

Today is one day I wish there was a way to upload the smell coming from our kitchen. Today is the day to make the yeast rolls my grandma taught me to make before I started school. I taught Billy Ray to knead the bread, probably far too young, because I was so anxious to pass along this tradition in my family.

As this day of family traditions in proceeding, I was thinking about a couple of articles I have read this week about acceptance of Autism versus the struggle find a cure, Sue Rubin’s article Acceptance versus cure and Susan Senator’s blog on The Autism Divide.

All this talk about cure for Autism creates a hope that it is possible and a yearning to do everything we can to bring it about for our child and every other child who struggles with Autism. At the same time our children are alive now and we want to accept them unconditionally and help them to be who they are. Today my son experiences Autism (and other things), that is who he is.

True acceptance is a hard to define. Accepting our child as a person who experiences Autism does not mean that you forget about trying to help him become the best that he can be or working towards finding a cure.

It is a balancing act between unconditional acceptance and wanting the very best for him, a cure for all his disabilities including Autism. I strongly believe that we as a society, not just parents of Autistic children, should do everything in our power to advocate and contribute financially as much as we can to research and seek a cure for Autism. At the same time we need to help our children achieve a life that is as comfortable and fulfilling an individual and to accept them as the individuals they are today.

Happy Thanksgiving,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

The Sky Is Not Falling...It Just Feels That Way

I shared my thoughts relative to the Supreme Court's placement of the burden of proof in two recent posts The Burden of Persuasion and Parents Have the Burden of Proof...What Else is New. I have been reading many comments on various blogs and in the media about this decision. I wanted to share one encouraging one with you. It was titled The Sky is Not Falling by Attorney Charles Fox, also the father of a disabled child, on Special Ed Law Blogs. I think you will find it informative and encouraging. I have this blog listed in my links (on the right side of this blog) because I found it informative and thought it would helpful to parents.

I was thinking about the title of Mr. Fox's post, the Sky is Not Falling. As parents disabled children everything seems more overwhelming to us than it might otherwise be. For example, yesterday we met with my son's county case manager and talked about the new Medicare prescription coverage. The process of exploring which insurance provider who works with that program that will work for my son's individuals needs seems a daunting task in light of other things I am trying to accomplish right now for my son and in my work.

In those of us who experience sleep deprivation because of our children's issues with sleep, even small problems seem major mountains when they might be molehills if we weren't dealing with others things at the same time. I wrote earlier the elation of success is higher because our children (and therefore parents) have to struggle harder for milestones. The same applies to problems and stresses, everything seems harder.

We can do this.

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

Another Lesson Learned from My Disabled Son

Recently I wrote about the R Word..Retardation.  I won’t go into it all again since it is still available in the archives.  However, I mentioned that I teach Billy Ray we are all retarded in some ways and strong in others.

I have also shared with you that I am a “messie” a term used in Messies Anonymous to describe someone who has difficulty with household organization.  I try to do too much at one time and can be distracted easily.

This weekend Billy Ray gave me a reminder of his strength and my weakness in an area.  I was puttering around the house trying to get ready for a meeting with a consultant I had asked to do some staff training with one of the support staff and for the monthly support group I conduct, Lighthouse Parents.  I was also trying to get this blog written and straight a few things around the house.  I was running around like a chicken with my head cut off.

Billy Ray, on the other hand, was quite focused on what he wanted to accomplish.  He was determined to have a milkshake (made with diabetic ingredients) and he repeatedly stayed on focus to remind me of that.  Normally his constant demands might irritate me.  This time it occurred to me that, I need to be like Billy Ray.  He was focused on what he wanted to accomplish and stayed with it until it got done (by asking me for it repeatedly).  If I stayed focused on one thing at a time instead of trying to do so much multi-tasking I would probably accomplish more.

Another lesson learned from my son.  Thanks, Billy Ray.

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