Moms Just Know These Things..5/31/06

It amazes me how we know things that we do about what’s going on physically with our kids. In yesterday’s blog I was suspicious of the quiet morning Billy Ray had. After support staff came he was whining a bit and I asked him in he needed some pain medication. His staff said “I don’t think he is in any pain”.

Until someone gets used to the difference in Billy Ray’s sounds it would be easy to mistake the difference. He is often noisy especially in the morning. Mania and hyperactivity usually includes noise for Billy Ray. However, it is boisterous and accompanies lots of activity. Quieter whining is entirely different.

Other signs were there too - he was grinding his teeth, chewing on his fingers, not as energetic as normal.

His “Doctor Brice” is at a conference so Billy Ray saw his colleague yesterday afternoon. He has a sinus infection. I can’t identify with his experience with pancreatitis but I sure can understand what he is experiencing with a sinus infection because I have experienced those many times. He certainly has a right to whine and not be his normal high energy.

I once wrote that Billy Ray is a trooper because he co-operates with most of the treatment he needs like daily blood sugars and nebulizer treatments. It is the same this morning. He slept from 8:30 p.m. to 5 a.m. last night but it can’t have been restful because he was clearly congested and wheezing. He tossed and turned most of the night being on the verge of waking up everytime I checked on him. Nevertheless, he was awake and completely focused on getting dressed at 5 a.m.

He is following his routine with some modification. For example, instead of pacing with his walkman to get the early morning energy out, he is listening to it in a recliner. He fed his dogs and is planning his day to deliver meals on wheels. I checked with the clinic to assure that he is not contagious and was okay to do that. No matter how sick he is his routine is important to him.

His acid reflex (GERD) and pancreatitis seem to be improving well. Dr. Masterangelo changed some increased his Nexum, moved all the Zantac to evening and added some pancreatic enzymes recently. We are able to add a little more fat to his diet including the fiber cookies that help so much with his regularity. As his assistant said yesterday, Dr. Masterangelo is a miracle worker. I would have to agree.

Regarding my work, I have been asked to become a Club Mom Expert. I am in the process of writing articles to be placed on that site and will provide the link to them when they are available for review. This new chance to interact with other Moms is very exciting.

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

What's Up with Billy Ray Today...5/30/06

Billy Ray is fairly quiet and calm for the most part yesterday and this morning. It is nice in that it reminds me so much of the times when he was younger before the Autism became his main issue.

This morning he was sitting on the loveseat listening to his walkman and smiling as he sang with it every once and a while. I looked over at him reflecting. I realized I have lived with Billy Ray longer than any other man in my life including my Dad and Billy Ray’s Dad who died after 17 years of marriage.

During the time after his Dad passed, before we met Larry, Billy Ray wanted time to wake up just as I did. He was cuddling intermittently but also occupied in his own activities to a substantial degree.

Today when we have mornings like that we have to wonder what does it mean? He is normally bouncing and active and generally noisy until he gets it out of his system.

It could be that he is coming down with some sort of cold or infection. He has been doing some sneezing. There indication that it could be an ear infection. It could also be that we are weaning him off his mood stabilizer because it has been negatively impacting his blood count.

He still wants to participate in his normal activities but just has much less spunk and energy. He is off with his support staff to take a carrot to his horse buddy. We are taking him into see the nurse practitioner who is filling in for his regular medical provider this afternoon.

Reflecting on his mood today, it seems a bit sad that when he was normally quiet and calm we didn’t appreciate it more. Now we can’t relax and appreciate it because we have to wonder what it means.

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

Keep Him Busy or Else!!

A consultant told me years ago that if we didn’t keep Billy Ray busy he would find ways to fill the time. It might not be what we wanted him to do but he would fill the time (getting into things he shouldn't, etc.). It has been difficult keeping his schedule current in the past year because he has experienced so many medical issues. The signs be read to know if he is well enough to be busy again.

Saturday, he was giving me signs that he needs more to do. I had just finished sending in the proposal for a new book and a cup of coffee and a rest sounded wonderful. Billy Ray was watching a movie and seemed content with his Saturday morning routine. Within a minute after I sat down with him, Billy Ray got up and went into the guestroom bringing the vacuum out saying “vacuum”. He wanted to vacuum the hallway that he had just done the day before as a part of his schedule.

His schedule was modified a bit this week in that they ask him to deliver Meals on Wheels Thursday as well as his normal weekly delivery on Wednesday. On Thursdays, he normally does some activities at the church, which could easily be moved to Friday morning. We weren’t sure how he would handle the change in schedule but he was thrilled. He genuinely loves delivering the meals.

On Fridays, he goes bowling in the afternoon. Most of his activities start earlier in the day but the bowling alley doesn’t open until noon. Last Friday he went to the church to shred papers, vacuum hallways and empty trash which he would normally do on Thursday mornings. Then in the afternoon, he did his normal Friday activities. He seemed to tolerate the extra activities on Friday, still got his activities at home done and was looking for more to do by the end of the day.

Needless to say I will be looking at his schedule this week.

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

Billy Ray's Progress..5/25/06

It has been a while since I brought you up to date on Billy Ray. Again, he is not totally well but getting better with each day.

With Billy Ray, as with some of your children, it seems we are always starting over. My friend, Keddie, who has helped me arrange his vocational activities mentioned yesterday that everytime we have set something new up he develops medical issues. That hasn’t always been the case but certainly for the last year.

People often confuse mania in Billy Ray with being happy. I don’t always correct them because most people enjoy the sound of his laughter and even slight hyperactivity. However, I know that this is not what happiness is in Billy Ray. When he is truly feeling good and enjoying life he will smile quietly and crack jokes with amazing wit and charm. We are seeing much more of the quiet smiles and charm in the past few days.

A sign that he is getting better, is the lessening of difficult behavior and increase in constant movement. For example, he lets me know he needs to be busier when he tries to take on tasks that aren’t normally a part of his schedule or doing regular tasks multiple times. For example, he is trying to fill the dogs’ water repeatedly and is doing many little things that say “give me more to do”. It is time to take a fresh look at his schedule.

He seems to be really getting into his activities as you can see by the pictures from his Meals on Wheels route. He is becoming increasing independent . The other pictures are of going bowling with the bag, ball and shoes he recently got from his step-grandfather. Last week he bowled 3 strikes in a row. Too bad we didn’t catch the picture.

One progress that Billy Ray is thrilled with is that he can now begin incorporating a little more fat in his diet. Also his blood sugar has been so good lately that we don’t have to be as cautious as we were for a while. Thus, with permission from his doctor I could make him cookies last night that are high in fiber. They have helped with his regularity in the past when multiple laxatives didn’t work. This was a part of his routine until the diabetes and we had to decrease both sugar and fat. Billy Ray was glad to be able to have his cookies again.

We are learning a lot about that magical organ, the pancreas. I had no idea that it controlled so many functions necessary to be well. Dr. Masterangelo ordered some pancreatic enzymes, which we will start today because the pharmacy did not have it on hand yesterday. Hopefully this will make things work better for Billy Ray.

He will have surgery at the end of July to help with his Acid Reflex and severe choking problem. In the meantime things are getting better.

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

Another Autistic Teenager Has Been Killed

Yet another disabled person has died, allegedly at the hands of his parents. You can read the news report here . There is an option to view the video of the story, which has more details. I am trying to find out more and will write again if I can.

According to the news report his parents are charged with arson and manslaughter for alleging locking in 19 year old Christopher Degroot, setting fire to the apt. and leaving him there to die. The report said the charge was not first degree murder because it hadn’t been proved that the fire was set intentionally.

This is worse than the case I blogged about previously where the mother sedated her son and put a bag over his head. Neighbors heard Christopher screaming during the fire and tried to rescue him but dead bolts and screwed shut windows made it impossible. If I understand it right (given missing part of it because of Billy Ray's noise) it happened on Mother's Day and he didn't die until Friday, he must have suffered a lot before he died.

According to Christopher’s sister in the interview last night but not shown in the video, her parents kept Christopher locked up to protect them from him and to protect him from others in the community that did not understand him. She alleged the fire was from the furnace. That doesn’t justify leaving him alone.

I can’t help but wonder what was Christopher trying to communicate to his parents if his behavior was that dangerous. Surely, there were other answers than leaving him locked up alone whether or not they set the fire and killed him.

Somehow our recent discussions about awareness seems more important. If we can get the message out to the public that families need help and to parents that there is a better way than killing their kids, maybe no more disabled persons will be killed.

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

Community Building and Awareness

I have been thinking more about the Awareness Controversy discussed in my prior post. Maybe the creating a community concept is a better way to bring about awareness. As I bring Billy Ray into the same community settings frequently enough for him to feel comfortable and people there to get to know Billy Ray as a person, awareness happens in a very special way.

Billy Ray with his wonderful smile (when he is comfortable with those around him) is an expert making people aware of what people with special needs can give. We can point to several settings where others with special needs have been more accommodated and accepted after Billy Ray was brought into that circle for a while. I like to tease him that it is sort of his mission in life. He does it so well. It is probably the same with your children.

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

The Awareness Controversy

It’s amazing how much diversity in thinking there is about what is educating the community by awareness so that our children will be more understood and accepted, what is invasion into privacy and what is griping about our children.

In Awareness..Not a One-sided Issue on my Amazon Blog, comments about awareness quoted from Cal Montgomery's review of Autism is a World gave me pause to take another look awareness.

With the recent circulation of a 13 minute video Autism Every Day on the Autism Speaks website the awareness controversy seems to have come again. Some seem to appreciate it very much and identify with the statements. Others see it as whining and hurtful to the children involved.

My initial reaction to the video was that it would bring about more understanding for families who experience Autism. Families need acceptance and support but awareness provides more than support.

Not that many years ago some of our children would have called large state institutions home. Most of these institutions have closed. The residents of those institutions have been brought into a community that wasn’t necessarily adequately prepared to accept them. At the same time the occurrences of various disabilities, especially Autism, is increasing rapidly. The “community” does not always keep up with these changes.

Awareness helps bring acceptance. Of course, there are those who will never accept people who are different and will never understand. We will have to be prepared for that. However, many people would accept our children if given the chance to know them.

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

Austim Everyday

I was reading some blogs with my morning coffee today. When I came to Tina's blog, she provided a link to the Autism Speaks website for a 13 minute video Autism Everyday. Even though many people reading this also read Tina's blog I wanted to share it as well.

In this short video day to day life with child with Autism is shown in a way that you will rarely find. It would be good for family members and friends as well as parents of special needs kids because it will create understanding.

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

Watch Your Toes - Time to Get Out Billy Ray's Bike

Summer is nearly here and it is time to get out Billy Ray’s bike. He loves riding it. Unfortunately a lot of the surfaces available for him are dirt or gravel. He needs help with those. So we have to remember to watch our toes because he can get going without notice.

Don't know how he sees with his hat pulled down but he won't pull it up no matter what.

It is always so much fun to have the warmer weather because Billy Ray is such an outdoor person.

When it is warmer he takes the service dog outside. They play with the outside dog as well. Actually, the outside dog is more able to keep up with BR’s energy than the service dog. Seems to always take two dogs to keep up with him. One that is too active for a service dog doesn’t work but he loves to play with an active dog outside.

He loved the trampoline until one winter the wind literally sat it on the other side of the fence. We need to try to get him another one but I have heard so many horror stories about them I am a bit nervous about replacing it.

Hopefully, he will stabilize physically so he can enjoy the outdoors. Last year was our first summer in LaPine but he was sick most of the summer so didn't get to enjoy it much.

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

Penny Lane's Purpose (Service Dog)

Penny Lane came to us from Heartland Weimaraner Rescue. It would have been easy for them to pass over her because she had major infections in her ears which required four surgeries and left her substantially deaf. In effect she is a special needs dog.

According to the foster parent for Heartland, Fred Linn, most folks who called about her were not interested because of her hearing loss. Then a friend of ours saw her on a Weimaraner group. It mentioned her friendliness and potential as a therapy dog. We received the forwarded email from our friend on the same our then service dog was deteriorating rapidly and could no longer make it up our stairs.

Penny Lane (named for the Beattles song by her foster parent) came to us in June 2004. She was a bit aloof at first – not unfriendly but bonding took some time. Now she grunts like a cat purrs when we pet or scratch her and is quite loving.

I could go on and on about problems with that dog (smile) and how difficult training is. What is important is that she is exactly what we need for this time in Billy Ray’s life. The most important things she does are not something I could not have trained her to do.

She seems uninvolved at times but is constantly aware of what is going on. Here’s an example: The other night Larry was in the living room with Billy Ray who was occasionally falling asleep in the recliner and Penny Lane was asleep on the couch. I was in my office. When I came out Larry said "you better keep this dog" (not that I have ever considered getting rid of her). He explained that he observed Billy Ray (who has bronchial problems and pancreatitis in addition to all his other difficulties right now) who would be breathing fine and then miss a breath or two. He said each time he did that Penny Lane would raise her head from being sound to sleep and then when Billy Ray would take a big gasp breath she would return to sleep until he did that again.We don't know how she knows because it is a big room and seems too far apart for her to smell and her hearing has deteriorated even more than when we got her. We have seen her jump down off our bed in the night (clear in the other part of the house) and go check on him and come get me. She just knows that is all there is to it.

She is such a comfort to him as he experiences the physical issues right now. She will go sleep on the couch and take a break from him but comes back very often to check on him. When things are particularly hard for him she never leaves his side.

Truly this dog was meant to be available for just such a time as this. Thanks Heartland for rescuing the perfect dog for my son!!

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

Professional Parent

In a recent appearance on Good Morning Central Oregon, I heard myself use a term that I haven’t used before Professional Parent. In Parenting Your Complex Child I talked about working with professionals more as a professional to professional but never really used that term.

I have been thinking about it since then. It is possible that unknowing encourage the “dumb parent treatment” by walking into a setting with various professionals in awe of their expertise. We should respect their effort to gain expertise and expect respect for our expertise with our children.

Doctors and educators, for example, have education and experience working with children with special needs. However, they don’t have the same opportunity to know our children as we do. Our job as professional parent is communicate our child as he or she is to the professional.

Thus, in a real sense it is professional to professional not the parent in awe of the doctor, etc. Both roles have some important things to add. You as parent can give important information to the doctor about your child so they can use their expertise to the best advantage. When they know our child best, recommendations will be the most appropriate for the child.

In the course of a child’s life he or she will deal with many professionals. The longest lasting relationship will be with the parents. Thus, it is the most important role in a child’s life.

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

Catching Up...5/09/06

I wanted to share a little of the past week with you and try to catch up. Several of you have written to me wanting to know how Billy Ray is so I wanted to update you on that too.

Billy Ray has been recovering somewhat from the pancreatitis but still complains of pain. Apparently part of it is the pain medication adds to his irregularity so he has been more constipated than normal. He also caught a cold and has been choking more with his acid reflux. I took him to see his medical provider, Brice Stanley, on Thursday. The cold seemed substantially better but his breathing was rattley and he was complaining of headache. Sure enough he has an ear infection. I was concerned about pneumonia so Brice ordered a chest x-ray based on my gut even though he couldn't hear it in his chest. When he showed me the x-ray he said "here's the bronchial stuff, you were right". This is one more example of how important it is to have the kind of relationship with your child's medical provider where he will listen to your "gut".

We have been treating him with an antibiotic and increasing the nebulizer treatments. He continues to be amazing. We know that he doesn't feel well but often wants to continue with his normal activities. Brice said that he isn't contagious so we have been able to allow him to do what he feels like doing.

On Saturday our church LaPine Grace Fellowship hosted a reception at the Fireside Room of Bend Nazarene before my book signing at Barnes and Noble in Bend. I asked the specialist, Dr. Masterangelo, who is treating the pancreatitis what to do about Billy Ray's eating at the reception. He said that Billy Ray could have some of his favorite oatmeal cookies and light other things that day even though we are trying to keep him low fat to help the pancreatitis.

Donna, who we will lovingly call the "cookie lady" made them special for Billy Ray. There was a sign posted that said "Billy Ray's favorite". She used to make them for him every week to help with his regularity because they are so good in fiber. The work better than laxatives for him. We had to stop that because of his diabetes and now they are too high in fat for his pancreatitis. You can see by the picture he is very surprised to see that he can actually have one of his favorite cookies.


















I was pleased that he was able to attend the reception because this was the first of my events that he was able to attend.

We are going to be home for a while as far as I know.

When I did the interview with Alandra Johnson, for the article that appeared in the Bend Bulletin last week, I was surprised at how long it took me to answer her question about what is the best part of being Billy Ray's Mom. I wrote about that in today's Amazon Blog if you want to read it.

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

What Have I Done to My Son..When You Regret Decisions

As parents there are so many decisions to make for our children. We make them with the information we have available to us at the time. Sometimes that information changes and hindsight shows it was not a perfect decision. When that happens it is so easy to beat ourselves up with the choices that we have made.

We have talked about medication for behaviors, risk of side effects in several posts. See Behavior Medication Friend or Foe and More on Behavior Medication for prior discussions on behavior medications. I also did a post called Evaluating Risks .

I have been agonizing about decisions relative to even simple meds like antibiotics because of the impact they have had on Billy Ray’s recent pain. On the prescription bottle, Brice Stanley, PA-C, refers to it as “extreme pain”. This is pain is from pancreatitis, which is believed to be caused by his years of using Depakote for a mood stabilizer and antibiotics for various infections, especially skin infections.

We always check out medications cautiously before agreeing to them. My husband researches them on the internet and provides me with links or massive printouts. We think something is safe to find later that more information is available and it is not as safe as we thought.

It is very upsetting to see his pain and know that my decision to use Depakote has caused him pain. At the same time, there is joy in seeing the quality in Billy Ray’s life while using that drug.

It would be easy to blame the drug companies entirely and some of that is reasonable. I find myself saying that they don’t evaluate drugs for disabilities as they should because their return might be less. Then I remember drugs that were recently pulled off the market, thought to be wonder drugs for arthritis but believed to be connected with heart attacks, strokes and even deaths.

Alternative natural approaches are generally safer. We have tried many, which didn’t help.

What is a parent to do? It would be easy to get stuck in grief over poor choices. I have certainly been there and done that. Eventually you have to go on in order to maintain as much quality in the present life of your child as possible.

We use as many non-medical approaches as possible. Arranging Billy Ray’s schedule and environment in the most comfortable way possible reduces difficult behaviors and frustration. Thus, less medication is necessary. Documentation so that the professionals have a clear understanding of what he experiences helps to make sure the recommendations by professionals are informed recommendations.

The quality of a child’s life must be weighed against the risks. It is a constant juggling act and must be looked at over and over. Having done that sometimes you have to allow yourself to say “I did the best I knew to do” and live with it. That’s the hard part.

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

Readiness and Acceptance is a Process

In the past few weeks, I have had the opportunity to talk to several parents who seem seem to be in various stages of acceptance. It made me think more about advocating in terms of readiness and acceptance.

The law provides various services to our children. We have every reason to expect that those services will be provided. When that does not happen, we want to kick butt and sue the authorities. However, when we get into those kinds of conflicts the real victim is a child because nothing is accomplished toward achieving appropriate goals.

That sounds simple but it is not. Everything within us as parents says we have to fight for our children. It is very difficult to let go and try it another way. That takes being ready to accept that we aren’t getting anywhere in the fight and negotiation needs to happens in a different. The idea that we should have to document and put ourselves in the position of those who hold the keys to the services our child needs, is a hard pill to swallow.

I understand that well. Billy Ray was in his late teens when I finally accepted that and started trying to regroup. Things might have been different for Billy Ray if I had used the advocacy methods in Parenting Your Complex Child sooner. I wasn’t ready.

It is a part of coming into acceptance. Just as with acceptance it is a process.

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

What Ya Doing? 5/1/06

The title of this post is again Billy Ray's favorite question that we hear all day everyday almost as much as "where are we going". I thought I would try to catch you up on what we have been doing.

It seems as if the last two weeks have run together. It started with the San Francisco trip that I wrote about in a prior post. We were home for four days, part of which included taking Billy Ray to the doctor in Bend on Tuesday and trying to clean as much of the house as possible before the Bend Bulletin reporter and her photographer arrived on Wednesday. Not to mention finalizing the Power Point for my presentation and finalizing preparation for the Arc of Oregon conference.

We left Thursday a.m. and went to Portland where we picked up my parents and drove to meet my mother-in-law and Larry's daughter, Lori for lunch. We hadn't seen Lori for a long time since she lives in Indiana. Then after we returned my parents to their apartment we headed for Hood River for The Arc of Oregon conference.

It was a wonderful conference. I enjoyed the sessions I attended especially the keynote speaker, Cathy Ficker Terrill. I wrote about her presentation on my Amazon Blog today. It was about social capital and very interesting. I also enjoyed the interaction with those in my own session. We had a few parents but mostly self advocates. I love hearing the perspective of self advocates - it is so refreshing and enlightening.

We had a gorgeous view of the river and the Hood River Bridge from our room at the Hood River Inn. There were a pair of Canadian Geese who visited daily and seemed to enjoy watching us as we enjoyed watching them.

We are home for several weeks but we do have some events going on in Bend this week. If you are reading this on Bend Blogs be sure to check the Bend Bulletin tomorrow (Tuesday) for the article by Alandra Johnson on Parenting Your Complex Child and Billy Ray. They took lots of photos and I'm anxious to see what they will use.

Then on Friday I will get up early and appear on Good Morning Central Oregon, Channel 11, at 6:58 a.m. The interview will be repeated several times throughout the day including the PM Edition of Good Morning Central Oregon.

Billy Ray handled our absence better this last week than the prior week. He seems to be improving physically gradually. Yesterday was his first day off the meds that are believed to have caused the Pancreatitis. Apparently it will take a few more weeks for him to be back to normal but he is requiring less pain meds already. He does have a cold which doesn't help a whole lot.

Last night he started laughing and said "I pay you back". I asked him if he meant for leaving him. We always joke that he is so good for support staff but saves all his noise for us. He laughed and agreed though he didn't give us too much trouble. He was actually in a pretty good mood.

Anyway we are home and I will try to get back on schedule with my blog posts soon.

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