Billy Ray's Day...Tuesday..2/28/06

It has been one of those busy days for us. After a minor meltdown because he couldn't find some clothes he was looking for, we started our day at Central Oregon Radiology for an ultrasound of Billy Ray's thyroid.

Then we went to one of his favorite restaurants in Bend, China Sun - a Chinese buffet. I haven't taken him there in months because of his newfound diabetes diagnosis. His favorite thing is the Chinese donuts and I worried it would send his blood sugar through the roof. However, his blood sugar has been very stable lately and Brice Stanley, his PA-C, has told us to give him an occasional treat.



It's almost time for tomorrow's blog so I am going to give you a few sights of Billy Ray's day instead of try for something profound which I don't have to share tonight.

Our friend and consultant, Keddie Wanless, joined us at the Chinese buffet and snapped these pictures. Then she suggested we take Billy Ray bowling which he thoroughly loved.



Billy Ray and Ron bowling. He bowled a 90 the first time and 102 the second. That's better than his Mom ever does.



















Go in there!!


















Yes!!



















Goodnight everyone and for our east coast friends, good morning.

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

The Dream is Reality/Update on Us

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

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

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

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

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

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

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

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

Reflections On How Far We've Come

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

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

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

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

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

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

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

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

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

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

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

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

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

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

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

Life Issues Beyond Our Complex Child

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

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

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

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

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

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

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

Some People Who Have Helped Billy Ray So Much

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

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

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

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

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

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

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

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

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

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


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

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

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


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

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

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

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

Adapting...Doing What Works for Your Child

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

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

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

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

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

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

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

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

Joy and Satisfaction, Sadness and Frustration

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

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

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

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

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

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

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

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

A Bit of Comic Relief Thanks to Lori Fox

I have been thinking about a couple of posts I have read on other blogs while I was researching the links I included in yesterday’s post. It seems important to present the balance between the agony and joy of parenting a complex special needs child. I am working on a post to talk about the various places I experience in being Billy Ray’s mom. Depending on how Billy Ray is tomorrow I maybe able to post it then. Otherwise, I will post it on Monday.

For today it seemed like time to share some comic relief. Last night we had a bit of a rough evening with Billy Ray who is recovering from dental work. After he was finally asleep, I went to one of my favorite blogs hoping that Lori Fox had written one of her wonderful humorous pieces. I was not disappointed. See Boy Meets Goal by Lori Miller Fox.

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

The Diversity Within Finding Understanding and Acceptance

You know what they say about smart minds think alike or something like that. Yesterday was one of those days where several of my favorite blogs and my email messages were thinking along the same lines. Most of us want to find understanding for our children who experience special needs but it is interesting the difference in the way we go about it.

According to my blog stats, there was a lot of visitors from a post on Neurodiversity’s weblog, One for the Times. In that post Kathleen Seidel is commenting on a book review by Polly Morrice for the New York Times on the book A Mind Apart by Susanne Antonetta. Kathleen found the review condescending toward people with various neurodiversities. I have not read the book A Mind Apart though I am eager to after reading Morrice’s review of it.

Kathleen writes: “Increasingly, many publicly assert that their lives are not overwhelmingly tragic, however great the troubles they or their families face due to their “off kilter traits.”

I wrote to Kathleen to thank her for links to this blog. Reading her reply, I stepped further on the soapbox I started yesterday before I read her blog and email. Kathleen wrote: “I hear from a lot of people who assume that the only parents who can feel good about parenting a kid on the autistic spectrum are ones whose kids are relatively "high-functioning." Thank you for making it so clear that that's hogwash.”

Society strives for excellence. There is nothing wrong with trying to be the best we can be. I want that for my complex special needs son, Billy Ray, as well. He will not be a Rhodes scholar and president like Bill Clinton but he has value to contribute to the world. He does not have to do the things road scholars do. He is entitled to have the opportunity to the best he can do.

In addition to the striving for excellence, there is a major striving to end all suffering. That is certainly an important effort. The problem is that disabilities which are preceived as suffering are not always understood enough to make informed choices. I am not talking about abortion here though some of the quoted articles reference that. There are many other choices to make relative to our children such as whether to bring them into our home, school programs, the effort we will put into their care and education, etc.

In The Problem With an Almost-Perfect Genetic World article in the NY Times 11/20/05, Andrew Imparato, president of the American Association of People With Disabilities, is quoted as saying “We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us.”

Susan Senator’s post Disability Baggage Check comments on the upcoming book A Different Kind of Perfect, by Cindy Dowling, Neil Nicoll, and Bernadette Thomas. Susan uses humor (which she does so well) to make the point about doctor’s who give their opinion along with the news that a newborn has one disability or another.

It seems important to remember that until the last decade or so large governmental institutions were home to a large percentage persons experiencing disabilities. The trend to close those institutions and bring their residents into the community is still evolving. Communities have not necessarily been familiar sure how to be accepting.

Even doctors and other professionals may not have had the opportunity to care for as many neurodiverse persons because they were not part of the average practice. I created the documentation system in Parenting Your Complex Child (AMACOM Books, April 2006) to help Billy Ray’s doctors see him as he really is before they treated him.

The more we as parents talk about our children, advocate for their needs and bring them out into the community (even the smaller community I recommend in Parenting Your Complex Child) the greater chance the winds of change will occur.

George F. Will, well known columinist and media person, writes of his son in Jon Will’s Aptitudes . The last line of his article comments that Jon was born on his father’s birthday and that he is the gift that keeps on giving.

Being Billy Ray’s Mom is without a doubt the greatest challenge of my life. However, being Billy Ray’s Mom is absolutely the greatest joy in my life too. I wouldn’t trade him what we have had together for the 13 kids (like my grandmother had) that I dreamed of.

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

Getting the Message Out is Becoming More Urgent

We have frequently discussed the difficulty at finding understanding as parents of complex special needs children including the posts Unrealistic Expectations and Feeling Misunderstood . It is difficult for those not walking in our shoes to know how uncomfortable they can be.

How can we expect some mother who tells her son or daughter to go get dressed while she gets dressed to understand what it feels like to actually have both her child and herself somewhat dressed to go out. It felt so good to accomplish that on Sunday that I actually had Larry snap this picture of Billy Ray and me.

Public awareness is becoming more urgent. It is not just about the warm fuzzy of feeling understood by those in the community anymore. Times are tough worldwide. It seems every time we turn on the news there is something about how our state doesn’t have enough funding to keep regular education going. Fighting for care and education for our kids is much more difficult. Based on what I hear from Australia and the United Kingdom similar experiences occur there.

If society sees all of our complex children as Corky from Life Goes On or the Rain Man nothing is going to change for them. We need to communicate about our children in every possible way we can to everyone who will listen.

Advocating as described in Parenting Your Complex Child (April 2006) will help. I am not so naïve as to believe that is enough. We need to bring our children in the community so that they are known and accepted.

There is another issue, while difficult to bring up, that will make a difference. Parents need to unite. Frequently there is division between those who are doing “the diet” or “alternative” approaches and those who are just trying to do what works. We must stop fighting among ourselves so that we can unite to get the message out that our kids are people first and need acceptance and programs to help them.

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

What He Does Today, He Expects to Do Always...No Matter What!!

Sometimes it is impossible to protect Billy Ray from himself.  For example, yesterday he had three teeth pulled and some fillings as well.  The dentist said he shouldn’t drink with a straw for two days.  The sucking action could dislodge the clot and cause additional bleeding.

He does not need a straw to drink with.  We use a glass with a lid because he tends to walk all over the house tipping the glass and leaving trails of juice.  Thus, he routinely gets a straw in his glass.  You don’t change routines with Billy Ray.

Billy Ray was probably communicating pain by his behavior as well; however, he became quite aggressive with support staff and with me when we tried to get him to drink his juice without a straw.  No amount of explanation was going to work for him.  We finally had to call the dentist to ascertain how serious the risk was if we let him use a straw.  He said to go ahead.

We cannot change some things.

Peggy Lou Morgan
www.parentingyourcomplexchld.com
www.lighthouseparents.com

There Was A Reason for Billy Ray's Communication by Behavior

Billy Ray’s credibility has been proved again!! Many times he communicates pain by extreme behavior and nothing in the medical procedures explain it. Eventually we find out he was having some medical issues going on that weren’t obviously.

Today was another case in point. When his behavior began to deteriorate in June, I investigated dental issues first. There was nothing in the x-ray or exam that showed he should be having major pain. There were some things to deal with but not believed emergencies. We scheduled an appointment to deal with needed work. However, that appointment had to be cancelled. He was hospitalized with leaking appendix and other issues. Then both the dentist and the medical provider felt he needed to be medically stable before pursuing the dental work.

Recently he went back to the dentist for an emergency appointment because he seemed to be having dental pain. X-rays were taken and Dr. Hester, a very kind and thorough dentist, put pressure on anything that might be causing pain and found nothing to explain the pain Billy Ray seemed to be communicating by his behavior.

Today he went back to Dr. Hester to have the work completed. Sure enough, a tooth with an extraordinarily difficult root and decay did not show on the x-rays. That is probably partially because it is very difficult to x-ray Billy Ray. Dr. Hester said that it had to be causing him extreme pain.

There are other issues involved in his communication by behavior such as the hypothyroid and difficulty maintaining appropriate blood level on his mood stabilizer. However, removing this source of pain will surely help.

I have been saying to several people involved with Billy Ray that I knew there was something we could not find. I didn’t know what but just knew that I knew. There was nothing else to do but practice the lighthouse concept. This morning I prayed that if the problem were dental he would help Dr. Hester to find it.

My advice is trust your gut for such things. When you have adapted his life to what works for him or her so you know it isn’t something at home or at school, keep searching for the answers.

I think about Billy Ray’s behavior when his appendice was leaking and the difficulty in demonstrating it to the emergency room doctor and this situation. Then remember the situation we talked about in My Outrage…Mother Gets Suspended Sentence For Killing Son and wonder if Patrick was trying to communicate something to his mother by his behavior.

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

Blog Block

I have been joking about blog block.  Kind of like writing in general there are all kinds of ideas running through my head until I sit down at the computer to write.

Today I have blog block in reverse - there is so much on my mind to share with you.   In line with Billy Ray’s law (which fits with Murphy ’s Law so well) I have so much to share but Billy Ray is active and raring to go.  We don’t have a Saturday support person anymore.  Will have to save it until next week.

We are off to Barnes and Noble in Bend and probably a hamburger.

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

Billy Ray's Law...2/10/06

Billy Ray’s law is playing out again today. The dental office called a couple of days ago to say they had a cancellation and could get me in earlier if I could take an 8 a.m. appointment today. We knew that would mean we would leave soon after support staff got here at 7 a.m. to be with Billy Ray because we are out from Bend (where the dentist) is a ways.

I got up at 5 a.m. hoping to have time to curl my hair and get ready. I noticed that Billy Ray had kicked his comforter on the floor. I struggled a bit with the conflict of being a “good mother” by covering up my son or not having time to get ready for my appointment if he woke up. I lost the gamble. He woke up raring to get on with his day.

It occurs to me when I write about his sleeping late in the mornings some of you must think how lucky I am that he sleeps so late. As stated before the earliest day he wakes up is staff days off – the only day I could sleep in. What might not be clear is that he often wakes up several times in the night – generally at midnight at least and frequently at 3 or 4 a.m. as well.

If I meet you at a book signing or a convention somewhere this summer and my hair is curled and I have make-up on you will know that Billy Ray is not with me that trip. Somehow the time to get myself ready loses out to Billy Ray’s law pretty regularly.

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

More Interesting Reading

I wanted to tell you about a website I have recently discovered thanks to Charlie Fox at Special Ed Law Blog who gave me the link.

It is Special Needs Future Planning. The site belongs to Attorney Bryan Rubin, specializing in special needs families. Mr. Rubin understands what we experience well because his son, Mitch, 25 years old, experiences Autism and other special needs diagnosis. Whether you are in Illinois near Mr. Rubin or not I think you will find his site very informative.

I could identify with the following statement by Mr. Rubin so much with all that Billy Ray has been going through medically: “BUT... we wish, we pray that we live at least one day longer than our child, and that we will not have to place the "obligation" or "burden" upon others. We hope, we pray, that we will always "be there" for our child.”

We all hate to admit it but long to survive our son or daughter who experiences special needs. See Open Letter ot My Fellow Parents for the rest of the article.

While you are surfing the net you might take another look at Special Ed Law Blog if you haven’t been there in a while. Charlie and Lori Fox have expanded topics. It is a very helpful blog.

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

Ramblings of a Sleep Deprived Mom

It’s morning although somehow it doesn’t feel like it. Billy Ray was awake briefly at 11 p.m. and several other points where I was up with him briefly. At 4 a.m. he came into my bed for a while and then went back to sleep for a couple more hours.

It occurs to me that when I write blog posts after nights like this I need to put a warning: “Content written while sleep deprived”. Then in my goofy, sleepy mood I am thinking we need bumper stickers than say “under the influence of a complex child”. However, I am not sure anyone but another parent of a complex special needs child would understand what that means.

Last night while I was waiting for Billy Ray to go to sleep I was composing a letter to a media a person I hope will consider helping bringing to light the life of complex special needs children. In Autism in the News we said that much of the media coverage is about High Functioning Autism and other higher functioning disabilities.

It seems important to help society as a whole get a glimpse into our experience not so that they will feel sorry for us. Understanding will go a long ways to change acceptance in the community and maybe even remove change of the governmental illogics I talked about in yesterday’s post.

Domestic abuse in spouses and child abuse is understood more because we have heard about trials in the media and had movies made about it. Very few people understand what it feels like when your child or sibling beats you up because they are confused or agitated. We hear about parents of disabled persons who murder their children without enough detail to hopefully prevent future occurrences of such cases.

While watching several of the clips from the funeral of Coretta King yesterday it occurred to me we need leaders such as the Kings who will fight to bring to light the needs of our children to the those who can change conditions. Lawmakers have made steps to change laws to benefit our children but they can’t regulate community acceptance.

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

Government Illogics Are International

Kiralea in Australia has been writing about issues they are having getting funding to care  for Jordan who experiences Autism. See http://jordanpowell.blogspot.com/2006/02/what-is-going-on-with-our-australian.html. I have been hearing from several in the United Kingdom that they are having difficulty getting their government to recognize the dual diagnosis of Down Syndrome and Autism so appropriate school and other programs are not available to the child.

Now it is happening to us AGAIN for the umpteenth time.  In the United States a program called SSI (Supplemental Social Security Income) is available for disabled persons. Well somewhat available for disabled persons – it can be a struggle to demonstrate eligibility for some children and adults.  It is not big bucks.  The last time I knew it was about $500-600 a month.

I should clarify for those of you not in the U.S. that there is a difference in SSI and regular Social Security benefits.  SSI is an entitlement based on disability not drawn on a claim that someone has paid into.  Social Security benefits is based on a claim which some employee has paid into.  For example, Billy Ray’s father was a state employee for 35 years so Social Security was withheld from his earnings.

Billy Ray has never received SSI because while my late husband was alive we had too much income.  Then after his father’s death he drew as a survivor under Social Security.  At 18 years old, he was declared disabled by the Social Security Administration.  He still draws off the claim, which Raymond had paid into all those years, but it is now based on his own disability.  He also gets Medicare (health coverage) through this claim including the new drug coverage.  It is better than SSI monthly benefits but it is not nearly enough to support his needs which are not covered by other programs.

I will not go into detail about how the information was provided to us in the method most likely to upset me and therefore, Billy Ray, which it did.  However, the state has now put Billy Ray on a list that means he should start paying a co-payment for his in-home supports which sounds like nearly 50% of his benefits.  The reason for this is that he is not on SSI.  The only reason he is not on SSI is because he draws on his father’s claim.  Without that he would be SSI eligible.

The reality is that because of his special diets to try to keep his diabetes under control while dealing with the thyroid problems which are increasing his appetite and thirst, we spent more on groceries in the last month than the benefit from his Dad’s SS claim.  In addition thereto we provide funds for his community activities including lunches out that he thrives on, his clothing needs which are extraordinary, diaper wipes, obsession about laundry that ruins machines, property damage, etc., etc.

Billy Ray is one to one care and supervision 24 hours a day 7 days a week.  If he were placed in a facility in addition to the specialized type of facility it would be necessary to hire one on one staff round the clock.  The figure of $20,000 per month has been thrown out regularly.

We do the visuals, create a schedule and environment that works for him and would be difficult for a facility with more than one resident to provide.  Without it his behavior would be unmanageable.  I closely supervise weekday support staff or provide direct care for him 24-7. Presently the budget for in-home supports during the weekdays is less than $5,000 per month.

If they jeopardize my ability to keep him at home, it would cost the state four or five times the amount they are presently paying to collect a few hundred dollar offset.  In addition, because his behavior will be impacted by the difficulty of trying to create the customized environment that has taken us years to create and continual readjustment, he will require more medications with side effect risks and will be at risk of hurting someone else or being hurt.

Somehow that doesn’t seem good business sense even if you overlook the impact on Billy Ray.

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

Slogans

KC’s Mom found the mug I referenced in Saturday’s post that says “I survived the IEP”. Thanks Tina that is the one I had seen on the web.

When I was first drafting my manuscript my agent William Brown asked me to think of how I would explain my message if I were trying to put it on a mug, key chain, etc. I wrote the book but I never did come up with the slogan for mugs and key chains. Somehow the message of Parenting Your Complex Child seems too big to summarize in a slogan.

On the other hand, I love mugs and key chains that inspire me to keep on keeping on in some area of my life. I'm curious whether you fine that kind of thing helpful in reminding you to try new ideas. Looking at the link for mugs which Tina found my mind has gone back to slogans that might be useful.

My blogger friends are invited to join me in the pursuit of the perfect slogan. We could have fun with it and make it a contest. If I use your suggestion I will give you an autographed copy of Parenting Your Complex Child. Email me your suggestions or just leave them as a comment.

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

Disappearing Posts

Don't You Just Love Computers and The Internet - Ya Right!

I was awake this morning at 5 a.m. Given Billy Ray's recent Saturday history I thought I better do the blog before he woke up. I wrote in Blogger for Word like I always do and clicked "view". It was there no problem.

There is probably a way to create the links in a blog posts in Blogger for Word but I haven't figured it out so after I post I go into Blogger and put in any links I want. The Post was on the blog but not in my "edit posts" file on Blogger. I verified that it was actually posted on the blog itself even though it wasn't in the file.

We had some errands and a bit of a tough afternoon/evening with Billy Ray. In the midst of that my friend called to say the blog was not up at all. She couldn't get it to load. Larry checked it out and got to the blog but this morning's post is now totally gone. Fortunately I had the file saved in Blogger for Word and did it again. Hopefully it stays put this time.

Just a couple of days ago I did a search for what I have said on a certain topic so as not to repeat and just link. I found a 10/26/05 post in the search but it is not in my edit posts file or on the blog. It is just gone.

Maybe blog posts are like the socks that never make it out of the dryer when you know you put them in the washer.

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

Billy Ray Was Born Too Soon

I was talking with my friend, Irma, from Texas the other day. Our conversation stirred my thinking to the difference in what special needs children are offered now than what they were as Billy Ray was growing up.

I wonder if Billy Ray was in school now as opposed to when he started school would he be reading now? I remember so well trying to get the IEP team to accept that he could count to 14 and sight read some. Instead they wanted to put goals in the IEP for “sorting” various objects so that he would be able to work in a sheltered workshop as an adult.

If I had created the advocacy methods I used by the end of his education would he have gotten further in school. Probably. If only we could go back to the multi handicapped preschool and deal with what I call “only the dumb parent treatment”.

I recently saw a mug advertised on a website that said “I survived an IEP”. I wish I would have bookmarked that and shared the link with you but I didn’t. It does make the point that they can become a battle. When that happens the real victim is the child because nothing gets accomplished while the team is fighting.

It is my hope that the methods I learned a little late but share with you in Parenting Your Complex Child will help many of you avoid “only the dumb parent treatment” and become the rightful leader of your child’s team.

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

One Benefit of Creating a Community for Your Complex Child

We have talked about creating a community in several posts herein and in some of my speaking events. See She Isn’t Typical She’s Trisha for more detail.

I like to think of it as creating a small community within the larger community. Your child gets a chance to know those he meets regularly and they know him better than if you frequented several establishments of the same type. When there are problems he is accepted where he might be kicked out if they didn’t know how he is normally.

A good example of this happened Wednesday at Gordy’s Truck Stop, a restaurant in our little town of LaPine, Oregon.

We avoid going out when he is agitated and more likely to have behavior problems. Additionally, we have an as needed medication that can be used if we have to go out. It works pretty well to take the edge off when needed. However, Tuesday he was in a calm mood so we didn’t use anything and felt totally safe to take him to an early dinner.

Billy Ray chokes easily and when it does occasionally it can agitate him. He has from time to time thrown himself on the floor but he has never exhibited the out of control behavior in public that he does at home.

Wednesday he had a minor choking incident at Gordy’s and got irritated but not agitated. We aren’t really sure if that set him off or what it was. He started hitting me and got up knocking all the things off an empty table next to us, knocked over the chairs then threw himself on the floor. It took a while to get him out of the restaurant and made quite a scene.

I was humiliated by this experience, sure that he would be barred from Gordy’s forever. After we got him to the car, my husband stayed with him and I went back to apologize. The waitress was concerned that they had done something “because he is always so good”. She said that he is absolutely welcome to come back.

I called the owner the following morning to apologize again and he was just as understanding and accepting.

This acceptance even in such difficult times comes when the folks in the community relationships you have created know your child. They know that this is not the norm so are less likely to reject him if he has a bad time.

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

Doctor-Patient Relationships and Documentation

I felt really affirmed by Billy Ray's medical provider, Brice Stanley, recently.

Yesterday he came in just before seeing Billy Ray to get a business card to give to another parent. It made me feel good to think he values the documentation methods so much he would suggest them to other parents.

Additionally, in a recent email he made comments about my documents which I think support the benefit of doing them. I also think they say a lot about Brice as a person and as a medical provider. I am sharing them here with his permission.

"I am excited to see** your son. Why? Because... despite the enormous challenge he presents each and every visit I find a unequalled satisfaction in seeing him trust me. I feel content to see your well-done behavioral logs that make my job so much easier. I also have a strange satisfaction in knowing that we have made some difference in his perception of daily quality of life when he smiles in the exam room."

"Each day that I see Billy I learn something new. A better way to communicate, or a more intuitive way to observe his behavior, or how important it is to read reports you bring. Each of these things presents a new challenge and satisfaction in my career. I look forward to seeing him because I get to partake in his well-being and LEARN at the same time."

In prior posts we have discussed the importance of the relationship with your child's medical provider. See Trusting Your Gut and Doctor-Parent Relationships and Developing the Right Doctor.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Why Journal

In the imagined perfect world, you could walk into the office of a professional with your special needs child and they would have all the answers you need to your help your child. In the real world, that you and your child live in that is probably not the case.

I love the theme of this years Arc of Oregon conference “Get Real”. When I started writing my book I thought about calling it The Real World Your Child Lives In. Expectations of help and services can be very different from reality. Just because there are laws that grant services to your child doesn’t mean your child will get those services.

The U.S. Congress created the Americans with Disabilities Act (“ADA”) and the Individuals with Disabilities Education Act (“IDEA”). They did not necessarily fund the programs sufficiently to provide the services they mandate. A child must be proven eligible for specific services as well as able to benefit from a service.

In Doing Your Own Clinical Trials we quoted Kate Crow, Genetic Counselor from foreword to Parenting Your Complex Child (April 2006) that medical researchers don’t do many studies on “complex children”. We also shared that when asking several medical schools how much training on special needs patients medical students received the phrase “touched on lightly” was a frequent answer.

How do we wade through the frustration of getting help for our children. I will share my struggle and the approaches I created in detail in Parenting Your Complex Child. For now I want to share you with you the foundation of my system so that you can get a head start.

The foundation is the journal. It will include the quick notes – sometimes only one of two words to jog your memory because you are too busy to write much when your child is in a meltdown or you are involved in something else with him. Other times you will note observations in more detail when you are able to write.

It is like your study notes for a class in school. Your child is your professional and you are taking notes from his presentation. Because it is for your eyes only you can do it however you need to. The data gleaned from your journal can be used to demonstrate your child’s needs in documents for medical, educational, and governmental professionals. It can also be used for transitional planning and estate planning documents.

I like to say the journal is the detail. Presenting the journal itself to the busy professional does not work because it is too long for them to read in a short appointment. I create documents from Billy Ray’s journal that are in a format a busy doctor, for example, can absorb in short visits. I take the journal along so that if he or she has more specific questions than given in the summaries I provide we can refer to the journal for more detail.

The journal can be in any format that works for you. Billy Ray has a computer in his room and it is the one thing he doesn’t throw. He enjoys the screensaver pictures of his activities, family members and friends, etc. thus he is protective of “my puter”. I am able to keep the journal minimized on his computer at all times. When I am in his room while he is going to sleep, while he is dressing or other activities in his room, I am can make quick notes.

What to put in your journal depends on your child’s needs. If sleep is an issue track the naps and night sleep. If he suffers from constipation, etc. you could track bowel movements. Note any issues that a professional is likely to ask you about later.

Behavior issues are helped a lot by the journal. It will enable you to catch “triggers”. Note what was happened before a behavior, what the behavior actually looked like and how it was resolved. When you review the journal later you are able to see that if something was happening (for example, noise or unexpected visitors) it routinely triggers a behavioral. It will help you to avoid triggers to the degree possible and reduce some of the negative behaviors that result.

In a very real way you become the eyes and ears to help professionals understand and treat your child. In a recent email from Billy Ray’s medical provider he mentioned the importance of the documents I bring. I will share those with you tomorrow and hopefully get of a picture of Billy Ray and “my Dr. Brice” when he sees him this afternoon.

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