The Ramblings of a Sleepless Night - More on Awareness

We are at St. Charles Medical Center in Bend, again. Billy Ray is continuing to have pain and weird lab results that keep the whole team hopping. "Dr. Brice" had him admitted this morning.

I am writing this in the middle of the night when BR is sleeping but I can't. This time the hospital put us in a slightly bigger room that a rollaway bed will fit (barely) in but I can't seem to relax on in.

Like Sue Rubin wrote "The argument dividing the autism community regarding the need to cure autism as opposed to accepting autism as a natural emission of diversity has been on my mind lately."

I wrote about Awareness my prior posts and also asked for your input relative to why people were somewhat critical of the Autism Everyday, a video by Austim Speaks. The feedback received seems to suggestion that much of "awareness" is really protraying autism as a death sentence leaving no room for joy and satisfaction together with the frustration.

I saw a bumper sticker yesterday. It said "Think Autism, Think Cure". It seems to me there is one main problem with the cure goal, it may take years and probably won't have an impact on some of our kids. Of course, we should fight for a cure but not because so focused on the cure that we lose the good in today, helping our children to be the best THEY can be. It goes back to an article I have loved and quoted for many years, "Don't Mourn for Us" by Jim Sinclair.

Mr. Sinclair recognizes the natural grief a parent experiences when they get the dreaded diagnosis. At the same time he suggests: "But this grief does not stem from the child's autism in itself. It is grief over the child the parents had expercted.*** But this grief over the fantasized normal child needs to be separated from the parents perceptions of the child they do have; the autistic chidl who needs the support of adult caretakers and who can form meaningful relationships with those caretakers given the opportunity."

In a real sense the idea of cure needs to be put in that same perspective. We should give every dime we can spare to places like Autism Reserach Institute and other reputable organizations seeking a cure, advocate for research but make helping our individual child to have the highest quality of life possible.

Thanks for your best wishes through comments, email and my Yahoo list. Billy Ray is actually a little better tonight. I will try to keep you posted.

Please note that the links file is at home on my own computer and I tried to cut and paste the link for my Amazon Blog but the computer in the hospital family room will not left me cut and paste. If you want to see the Amazon Blog scroll down to a prior post to click on it.

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

The Importance of Chosing the Right Medical Provider

I have talked a lot about Brice Stanley, PA-C, Billy Ray’s primary medical provider in terms of the importance of Doctor-Parent relationships. The relationship with your child's provider is important; however, I want to reinforce the importance of the thoroughness and attitude of the provider. I hold Brice out as an example to all medical providers whatever their degree because of his compassion and because of his thoroughness.

The only doctor I ever fired had Harvard Medical School degrees all over his offices and was a well-respected specialist. He refused to look at the documentation I prepared with Billy Ray’s history, etc.. He would say “just tell me” but then cut me off in the first sentence. Examinations were minimal but he kept writing prescriptions. I could not trust his judgment because he didn’t have a true understanding of Billy Ray.

In an exam a few weeks ago Brice mentioned that one thing he has learned from Billy Ray is to never stop at the “usual” but to look for the “unusual” as well. That is so important. Over the years, I have heard the word “usual” so many times, I have come to hate it. There is nothing usual about Billy Ray.

If our complex special needs children have multiple situations going on, findings and examination can be masked by other things going on. It takes the patience of Job to stay in there looking for answers.
The reality is that not all providers have had adequate preparation to work with a complex child. As Kate Crow, Genetic Counselor, stated in the Foreword to Parenting Your Complex Child (AMACOM Books, April 2006), there are not as many studies done on complex children. This complicates their care for the provider and the parent(s). Thus, the finest medical education may not cover a child just like yours.

Attitude, listening skills and a desire to check every detail for the unusual are probably the most important traits you can look for in your medical provider. I am so thankful we have found that.

Another role of the "primary" that is so important is in effect case manager. The primary must pull together appropriate specialists and maintain communication with them. Many times you don't know the specialists so your trust must be in your primary to interpret data and find an appropriate specialist. Brice is especially good at admitting when he needs another opinion and staying on top of communication with other professionals. I think that is an important part of the job but not always present in all doctors.

This past weekend I realized that if Billy Ray survives all the ever changing medical issues it will be because of the thoroughness of his "Dr. Brice". I take great comfort in knowing that if we lose the battle down the road, we will have done everything that could be done for Billy Ray because of the team headed by Brice Stanley.

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

Quiet is Scary

As I said before knowing when to worry and when not to is the hardest part for me.

Billy Ray has been struggling with a sinus infection on top of everything else for a few weeks. He started the second course of antibiotics on Tuesday. He has been whiney and having lots of pain but he still was eager to be somewhat busy, albeit less than normal.

While he went to his Thursday vocational activities yesterday, I posted yesterday with pictures from the day before about how he was playing even sick the day before. The post was no more than published to Blogger than Billy Ray and his support staff returned home. He had refused to go to his favorite restaurant following his activity and had been irritable. He remained irritable and complained of pain until 11:30 p.m.

At 5:30 a.m. he woke up very wheezing and congested and quiet. When he is quiet, in the morning, something is up and that is always scary to me because it is hard to read. We don’t get quiet often first thing in the morning.

I talked to his primary medical provider who is going to try to get Billy Ray into an Ear, Nose and Throat specialist today.

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

Billy Ray is STILL Amazing

As I have said before Billy Ray is amazing!! He can’t feel wonderful with a sinus infection, pancreatitis and constant struggles with acid reflex. He won’t let it keep him down. He can go from sitting in his recliner taking his nebulizer treatment for his congestion, whining and groaning to wanting to go out.

My husband, Larry and I are both sick with summer colds. I was working on a major unrelated project but moaning and groaning about how rotten I feel yesterday. Billy Ray who is more seriously ill than we are, went to the playground. Here are some pictures of Billy Ray and his support staff playing yesterday. They were taken by our consultant friend, Keddie Wanless.







This wonderful playground is courtesy of the First Conservative Baptist Church in here LaPine kindly allows Billy Ray to use it even though it is not our church.

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

Reasonable Chores..Training for Transition

I learned years ago (when I did not have in-home help) that if I don’t involve Billy Ray in housework it isn’t going to get done. Consequently he loves to do it and prefers to it to many activities that other kids might do. He especially likes mopping as you can see by the picture. He used to spill water intentionally so he could mop.

As I wrote in Keep Him Busy or Else we have learned that if we do not have constructive things for Billy Ray to do he will fill the time though not necessarily with acceptable things.

Support staff seem to react to his love of housework in various ways. Some think it is their job to do it if it is scheduled and go crazy cleaning our house while trying to get him to watch a movie or follow them around while they do the task. One former staff refused to do it because he said that we were only having Billy Ray do yard work or housework so that staff did it. Both miss our point. It’s Billy Ray’s home too and he should contribute to its’ maintenance to the degree he can.

I have gone round and round with former staff about not doing it for him. Additionally, it is not “Billy Ray help me make your bed”. It is his bed he should make it and he can. The cue should be “It’s time to make your bed. I’ll help you if you need it.” The bedspread may not be straight and smooth every time but he needs the satisfaction of making his own bed.

It is my dream that Billy Ray will have his own home someday. I know that he will always have to have staff but I want him to be able to do as much as possible to make it feel like his own home. I want him to have support from staff only the degree he needs it. Thus, tasks should be appropriate to what he is able to do with assistance. I have made a list of what he can do with assistance and what he would need to do if he had his own home.

In choosing tasks we take a look at the following:

• Is it something that he needs to do as an adult in his own home?
• Is it something that he is able to understand and participate?
  
  For tasks while he lives with us we ask:
• Does it benefit his personal needs?

For example, we wouldn’t have him clean the master bathroom but the main bathroom is the bathroom he uses so it would be appropriate for him to assist in cleaning that bathroom. He contributes to the messes made in the kitchen, living room, etc. and the garbage accumulated so assisting with that would be appropriate.
His bedroom is just that his bedroom so he should maintain to the degree he is able to do with assistance.

We could go on and on with examples. I think you get the idea.

When I don’t have help with him such as on the weekends, I do have him participate with me in activities that are not as specific to him because I can’t supervise him on a one to one basis and get needed things done at the same time otherwise. For example, I help him with his laundry and he helps me with general family laundry.

Until next time,
Peggy Lou Morgan
Amazon Blog
Yahoo Group

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Father's Day 2006

Billy Ray and his stepfather generally celebrate Father's Day on Saturday because if we go out in the big crowds it can be a little overwhelming for Billy Ray. Yesterday we went to the Mexican restaurant in our little town for lunch. After we ate Billy Ray proudly took cash to pay the bill and wanted everyone to know he had taken his "Dadgert" out for lunch.

Then we went to Dairy Queen to get an ice cream cake that both love but we haven't been able to allow Billy Ray to have it for at least year because of the various diets he has had to be on for medical issues. The clerk asked Billy Ray if he was going to go eat cake and he told her "for Dadgert".

I regretted not taking the camera so I could share it with you. Here is a picture of Larry and Billy Ray that I took earlier in the day yesterday to make a new symbol for emptying the garbage.

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

Need Your Input

Sorry I have not been as regular with this blog as normal. I have been fighting a flu bug and working on a big project.

In a prior post I wrote about my sense that awareness of what we experience in day to day life would help bring about acceptance and better support for our families. I was surprised by the reactions to the dvd Autism Everyday by Autism Speaks. I am trying to understand this controversy.

I did an interview recently with a reporter who is doing a piece about how the media can do a better job of covering disabilities. My position was that the media could help bring about awareness and acceptance. With the above controversy, I am not sure that would be desirable to all parents.

I would like to hear what you think. Please either comment to this post or email me privately (if you prefer).

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

Billy Ray and the EMT/Fire Department

Reading a post by Griffin's Mom yesterday, I remembered that I may not have shared our planning for dealing with emergency personnel.

There have been numerous media reports of children and adults who died during conflict with police and fire personnel. The fear of the unknown by a child with special needs as well as the fear of being held down can stir multiple problems and increased aggression. I was very alarmed by that when Billy Ray's behavior was worsening (primarily because of medical issues that hadn't been discovered yet) and his repeated choking. The likelihood of having to call emergency at some point is high.

Our wonderful "Dr. Brice" (Brice Stanley, PA-C, Billy Ray's primary medical provider) had some very good suggestions. He said that if the EMT's were familiar with Billy Ray they were less likely to need to use force.

I contacted the supervisor of the EMT staff through our local fire department. We planned that Billy Ray will visit the fire house at regular intervals and various times of day so that he gets a chance to meet most personnel. As luck would have it, the fire house in our little town recently held an open house. Billy Ray and I attended together with his support staff.

We were able to introduce Billy Ray to the fire chief and he introduced us to three EMTs just coming back from a call. Billy Ray was able to wonder around with his support staff looking at the fire trucks and life flight plane while I discussed my concerns with the EMT's. We were also able to give them my business card which has links to this blog and my websites so as time permits they can read about Billy Ray. I felt very good about the interaction and plan to establish some relationship for Billy Ray with them.

There are numerous advertisements on the net about signs that say an Autistic person is in the house or the car. I asked if this would be important to do for our house. I was told that personnel don't pay a lot of attention to those signs because people move or situations change but signs are not removed.

I also had some concern about emergency medications because given without knowledge of Billy Ray's regular medications. We had experienced this problem in the emergency room on one occasion and in a lab where they just gave Billy Ray meds before a procedure without even checking about other meds we might have given him. It was suggested in our meeting that the most helpful thing we could do is have an accurate list of Billy Ray's meds easily available to emergency personnel.

We update his medication schedule regularly so it is available. We plan to print out a copy everytime there is a change and to include a copy of Abbreviated History (as described in Parenting Your Complex Child) in a file that is in the table just inside the door. It will be readily available to EMT's and to take to the emergency room.

Planning reduces risks as well as reducing the worry about emergencies.

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

Just for Fun...6/12/06

We just got back from seeing Dr. Masterangelo. Billy Ray is getting better. No issues to report. He hasn't been sleeping as well and my mind is wearing down so I don't have a much to share on this blog today. However, I can resist sharing the pictures I took this morning.

He came into my office this morning after his bath. He had his uniform (like "Bubba Mike") and both the radio hat and walkman on. He doesn't have the radio on in the hat but he loves the antenna on.

My mother-in-law is so creative as knowing what Billy Ray likes and finding things in catologs, etc. Several years ago she found these radio hats and Billy Ray loves them. He doesn't always wear them with the walkman but when he does it is cute.






As I snapped the picture on the left he put his head down. I am putting it up anyway because you can see the hat better.

He is still having some pain. Dr. Masterangelo said the pancreatitis maybe chronic - he may have days with no pain other days where he needs to take pain medication and some days he will be hospitalized with it. However, the charming little boy that left us at 14 years old when he had a series of seizures, is re-emerging pretty often in the past couple of weeks.

I suppose that what is cute to me may not be cute to all but I must share. After we got back from speaking at The Arc of Oregon conference at the end of April we were sitting at the dinner table with him. He was especially noisy and I asked him to be quieter because I had a headache. He looked over at me and grinned. He said "I pay you back". I asked him if he was paying me back for being away and he grinned. That little imp!!

Yesterday he and I were making a casserole and then he and his stepfather took the kitchen garbage out. While they were gone a heavy thunder hit. When they returned I asked Larry how Billy Ray had handled it. Billy Ray piped up with "farted" and laughed. He wasn't upset about the thunder at all.

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

Newsletters

We have always planned to do a regular newsletter but haven't gotten many out. Beginning with a July issue we will send out one via email. We will probably do them at least quarterly.

It is planned that the next letters will include my schedule when I am traveling, new materials added to the websites or links to special blog posts, articles, etc. that I think you might find interesting. From time to time there will be some articles as well.

If you have already noted in the guestbook for either of my websites that you want to receive a newsletter you are on our mailing list. If you haven't signed the guestbook on the sites you can just email me to be added to the list.

Hope everyone is having a great weekend. Billy Ray is doing fairly well today. He has played with his service dog more than he has in a long time. As I write this he is asleep and she is on the floor beside his bed. They are both tired out.

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

Reflections of a Different Kind..6/9/06

The email from some of you worrying if I don't post everyday is humbling. Yesterday, Blogger was having some issues and everytime I tried to do a post it said they were having having technical difficulties.

Billy Ray is doing fairly well. He is getting over the sinus infection gradually. Still having some pain in his stomach but it is more manageable. He is continuing to be interested in doing more things and we are revising his schedule to accommodate him.

As a general rule, I try to stay focused on topics relative to special needs children specifically. I am aware that readers with differing opinions and from many different areas of the world visit expecting posts about parenting a special needs child.

However, if I would have been able to get on Blogger to post yesterday I would have written about my stepson, "Bubba Mike" (Billy Ray's name for him). I was missing Mike so much yesterday with the news of the capture of the terrorist in Iraq.

Yesterday CNN showed more of the beheading of Nicholas Berg (believed to be done by Al-Zarqawi peronsally) than I have seen before and I wasn't prepared for the horror of it. I felt a real surge of appreciation for Michael and all the troops internationally for helping to keep our children and all of us safe from terror.

Michael is in the reserves and called to active duty for a special project. He is not in Iraq but that doesn't mean he is in no danger. He has already done one tour in Iraq. Not only is he sacrificing by being away but his wife Rebecca contributes by keeping their home together for Elora, Alena, Hans and Oren.

I wanted to say thanks to Michael and all his colleagues as well as to the families.

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

So Much Fun

It is fun for me to see Billy Ray emerging as his old self. In addition, hearing Ron, his support staff (pictured here giving Billy Ray high five following a strike bowling) marvel at the difference in Billy Ray is great. He keeps saying I guess all we needed to do was get rid of the pain. Probably more involved than that because we have changed meds too but he is right Billy Ray's old charm is returning with rapid speed and without nearly as much agitation.

I looked through a lot of the childhood pictures to try to find one that would capture this charm (that I haven't already posted here). Probably my favorite one that shows his little impish type personality is already posted here. But here is one taken when he was four years old that shows the charm I am trying to describe too.

We need to call his barber today and get his haircut. He has been so sick that he has gotten shaggy. I will try to take some current pictures after that.

This newly re-emerging Billy Ray is keeping us busy reinventing schedules to keep him challenged at just the right level. His timing is not wonderful because I am also involved in publicity for Parenting Your Complex Child and writing some articles for Club Mom. Nevertheless, we have to capitalize on his need for new challenges while we can.

My consultant friend, Keddie Wanless, is helping me by contacting some of the community resource possibilities for adding activities and assisting with the schedules.

It is worth every effort to see our Billy Ray enjoying his life more.

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

Then and Now..6/6/06

With joy we realized Saturday that what that we were seeing the Billy Ray, not just from a year ago before he had his most major health crisis but glimpses of his higher functioning before the seizures which changed him so completely at 14 years old.

I haven’t shared as much about what life was like before that. This is probably because the present, or at least the recent past, becomes so consuming it is like a separate life. It has been touched on in Reflections on How Far We’ve Come .

Billy Ray could go with the flow most of the time as a young child. He became hyperactive young but overall was able to do many things independently and didn’t require the structure he needs today. For example, his before school activity might look like this:

• Wake him up with the help of the dog because he was hard to wake up.
• Tioleting, independently except that he would call me if he had a bowel movement to wipe him. He was able to wash his hands by himself but would sometimes fail to get them totally dry.
• Hygiene required minimal assistance with his teeth but he washed face, put on deodorant, etc. without help.
• Give him a snack with his pills. He would eat breakfast at school but needed something with his medications.
• He would select his clothes and dress independently. I would be sitting at the dressing table in my room across from his getting ready for work. He would come to be buttoned or have his shoes tied which he has never been able to do.
• He made his bed and feed his dogs with little coaching.
• He gathered backpack by the door and put his coat on.
• If he were ready before bus time, he would watch cartoons for a few minutes.

Today, at 23 years old, he is no longer in school and requires a lot more assistance in most steps of his acitivities. We need to use a lot of visuals for him to understand what is expected of him and follow the same sequence as consistently as possible. We use a picture schedule and symbols. I tried to upload one into this post but can't figure out how to do that on Blogger. I managed to get the pictures and text columns on my website so you can see a sample of what we do. It is not the form because the website wouldn't let me upload tables or spreadsheets which I normally use.

You can clearly see the difference between the Billy Ray of those days and now.

After the seizures, the developmental pediatrician told us that most kids return to what was normal for them before the seizures within about six months. It had been nearly 10 years and he hasn't returned to the level he once was. He is showing signs of trying which is great.

I am comparing notes for you as well as myself because of the things we are starting to see but also because I am a bit worried about a decision we just made. The Depakote was used for years as a mood stabilizer and worked well but as I have reported recently he had to come off of it because it caused pancreatitis and diabetes. It was replaced with Trileptical which has now made his white blood count danagerous low.

Billy Ray does not have a seizure disorder but meds for his behavior can lower his threshold for seizures and that is always a risk. Since he needed to have a mood stabilizer I always felt safer if one of the seizure meds was used for that. We have nearly run out of choices except one that has side effects which we know he is prone to and are just as scarey too. We have decided to take the risk of a seizure rather than the risks with that drug. The drug he takes for his behavior (not the same one believed to have caused his prior seizure) does list seizures as a risk but all the doctors we have talked to say they have never heard of anyone having a seizure from it.

I have been stalling on getting him off the Trileptical but his white blood count is dangerously low again so we are going to have to get him off of it faster. It is again time to trust our instincts and do make best decisions we can with the information we have available.

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

Morning Again, Regrouping 6/2/06

It’s morning or so the clock says. It doesn’t feel much like morning, more as a continuation of the night. When I wrote But its’ Still Dark Outside Billy Ray was having lots of sleep issues. A new behavior medication was added last fall when we were having the most difficult behaviors and his sleep actually improved. I was beginning to think that we had hit on something because it has lasted longer than normal. This is a common thread we have experienced for years. He will have periods where it looks like whatever we were trying for sleep is going to work but a few months later we are right back into being awake a lot at night. Now he is waking up earlier and earlier. We have been up since 4 a.m. today.

We probably have to start over more than many of you because of Billy Ray’s medical issues. Many times in the last couple of years we have had him doing well with a routine only to get sidetracked with some form of health crisis and have to start again when it is over. We are again, where we were when I wrote about seeing a change coming and about regrouping here and here . It may take a while to get back to the elation of getting him back on track but we are headed in that direction.

As we discussed sequence is very important to Billy Ray and many complex children. It is a hard concept to explain to staff and family members. As long as the activities or tasks are done some find it difficult to understand why it matters which order we do them in. It certainly does matter to Billy Ray. He demonstrated that to his staff this morning in that he tried to put coffee cups in the dishwasher before his regular routine.

Last night I experimented with reworking his evening schedule. There were two reasons for this. First, past history demonstrates that the closer to dinner he goes to bed the more likely that he will get to sleep. He gets sleepy soon after dinner but later he gets his second wind and will stay up all night. However, it seems everything I have been reading about GERD (acid reflex) lately talks about the need to separate dinner and bedtime by at least two or three hours. The normal procedure could be contributing to his problems with GERD. Second, he has been giving me static about brushing his teeth and part of his evening routine lately.

Last night he had an early dinner. He went into his room and started putting his sweats on as he normally would do after dinner. He has been showing considerably more independence in this process except for the hooded sweatshirt so I tried not going into his room until he was at that point. He seemed pleased to be allowed more independence and privacy.

His normal routine would be to ready for bed including teeth brushing before he gets his popcorn. We know it’s not great to let him eat after teeth brushing but he had frequently fallen asleep during his popcorn and/or refused to brush his teeth after it pretty regularly so we kept the routine that way. Last night, instead of doing the teeth brushing after he toilets I waited until he had finished his popcorn with his movie. Then I cued him “let’s go brush your teeth and get the popcorn out of them”. It took him a couple of minutes to respond because it was a different sequence but he did respond and let me brush his teeth longer than he does sometimes.

We were able to get the recommended time between dinner and bedtime and he actually did go to sleep. I made notes in the journal (on the computer in his room) and we will see how it goes over the next few days before actually changing his schedule permanently.

Billy Ray is working his morning routine and getting ready to go bowling today with his support staff. I think I’ll take a nap.

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

Not Well But Much Better..6/1/06

Billy Ray is marching with his walkman this morning. Our house has a great room which is basically living room and kitchen combined. In the corner where the kitchen is, there is a breakfast bar with the sink and dishwasher on the backside of it. The loop between the breakfast bar and stove and through the kitchen around to the other side of the breakfast bar makes a nice circle for him. He loves to march around and around each morning. It is good to see him have enough of his energy back to march.

We used to hate his need to be so active and noisy in the morning. Finally discovered that if we put his walkman on and just let him march to it until he gets his energy out it makes the rest of the day better.

I am reviewing his schedule and trying to modify it, working on what additional training we will need to give support staff as we change schedules. He is keeping us hopping with his improving health and need to be busier.

Ron, his support staff, said that Billy Ray really enjoyed his Meals on Wheels route yesterday. I don’t accompany them on the route so have never seen the interaction with folks but I got the chance the other day when we were at the clinic and a couple from the route were there at the same time. It was nice to see the relationship that Billy Ray and Ron have established with folks he meets.

His sinus infection is still there. He is sneezing some but each day he seems to improve a bit. His energy returning a good sign.

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