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
http://www.parentingyourcomplexchild.com/
http://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
http://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 breathing, whining and groaning to wanting to go out.

My husband, Larry and I are both sick with summer colds. I am working on a major unrelated project but moaning and groaning about how rotten I feel. Billy Ray who is more seriously ill than we are, went to the playground. Here are some pictures of Billy Ray and his caregiver 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

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
http://www.lighthouseparents.com/