I am writing this late Thursday evening because things could get crazy around my house. The motor in our furnace went out tonight. According to the cable company it was 18 below zero last night so it could get cold tonight. My husband has it temporarily running for the moment.
It got slightly smoky in the house when it happened and, of course, the smoke alarms went off. Fortunately, Billy Ray sleeps hard when he first gets to sleep and he has his headphones on listening to the oldies so he actually slept right through the noise. The last time the alarm went off it escalated him a lot.
Billy Ray does not understand changes in routine or being woken up once he is asleep. I was thinking how hard it would be to get him out of the house in the event of a fire. He gets made if we wake him before he is ready. Fortunately he no longer has school buses to catch.
We are waiting for the furnace man to call. I am going to go ahead and post this since I promised the bipolar post and some of you may be looking for it in the morning. It could be a long night.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, December 15, 2005
Billy Ray and Cloud (Horse)
I am working on post about Autism and Bipolar for you. It is getting late and I have lots more to do on it. I will finish it for tomorrow.
For today here is an example of Billy Ray's community activities. He went to the church to do some volunteer tasks and out to lunch with his support staff. Then as a treat he goes to visit a horse named Cloud owned by a waitress we met here in LaPine. Most days Billy Ray goes to visit Cloud and brings it a carrott. Cloud really seems to enjoy the visits as much as Billy Ray does now.
Billy Ray is going to be 23 on Monday. I will try to get a picture at his birthday celebration. We will see if he co-operates.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Wednesday, December 14, 2005
Ten Random Things About Me
I was tagged by Lora, My Beautiful Child Griffin & Autism, who was tagged by Christina, Mommy Guilt to tell ten random facts about herself. Here goes:
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
- My favorite thing is to soak in a hot bathtub. Of course, you never know what time it will be because I to do it when support staff is here with Billy Ray or my husband is available. Sometimes it is 2 in the afternoon when I get in there.
- This blog is usually written in my bathrobe with my morning coffee right after support staff arrives to be with Billy Ray.
- I have a great mother-in-law.
- I love lighthouses and angels. My house is full of them on rugs, dish towels, etc., etc.
- I am such a kid at heart when I get email from exciting places like Australia and the London.
- I hate Beef Barley soup.
- I miss my longtime secretary, Linda, who was the only person who could find anything on my desk except me. (Of course, after she was there I couldn’t find anything on my desk.)
- I love to walk in the storms on the beach. Maybe that is because I was born on the Oregon coast.
- My grandmother had 13 children and I was the only one in her family who wanted that many. Now that I have Billy Ray, I’m glad I stopped at one.
- I love tea parties with my granddaughters, Elora and Alena, when they visit.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Tuesday, December 13, 2005
Sleep Deprivation
Sleep deprivation has a way of affecting every area of life. Many children and adults who experience Autism or Bipolar and other special needs have issues surrounding sleep.
Sometimes when Billy Ray is experiencing a manic phase with his Bipolar he will not sleep for 40 hours or more and is active the entire time. Other times he is up and down most of the night.
Once a case manager wrote in a report that I didn’t want to give Billy Ray additional medications to lived our life sleep deprived. WRONG!! Nothing that works for Billy Ray long term. If he takes a sleep medication longer than a few days or a few weeks, at most he builds up tolerance to it.
Reactions to routine events change when you are tired. You do and say things you would never do if you were well rested. If someone calls on the phone you may sound like a drunk when really you are just catching a nap while your child is napping. For example, yesterday I was trying to take a nap in my recliner before support staff left. I woke up to the sound of the phone ringing. It was my editor. I didn’t really remember calling her and rambled on for a minute totally out of focus.
Then, of course, there are mornings like this morning when you feel “hung over” because of actually sleeping. Billy Ray lost his covers at midnight and 3 a.m. waking up until I covered him up again and went back to sleep. We actually got several hours of sleep. My head is foggy, not being used to so many hours of sleep.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Sometimes when Billy Ray is experiencing a manic phase with his Bipolar he will not sleep for 40 hours or more and is active the entire time. Other times he is up and down most of the night.
Once a case manager wrote in a report that I didn’t want to give Billy Ray additional medications to lived our life sleep deprived. WRONG!! Nothing that works for Billy Ray long term. If he takes a sleep medication longer than a few days or a few weeks, at most he builds up tolerance to it.
Reactions to routine events change when you are tired. You do and say things you would never do if you were well rested. If someone calls on the phone you may sound like a drunk when really you are just catching a nap while your child is napping. For example, yesterday I was trying to take a nap in my recliner before support staff left. I woke up to the sound of the phone ringing. It was my editor. I didn’t really remember calling her and rambled on for a minute totally out of focus.
Then, of course, there are mornings like this morning when you feel “hung over” because of actually sleeping. Billy Ray lost his covers at midnight and 3 a.m. waking up until I covered him up again and went back to sleep. We actually got several hours of sleep. My head is foggy, not being used to so many hours of sleep.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Monday, December 12, 2005
More on Behavior Medication
Dare I hope that this is for real and not another “honeymoon”? As I have been sharing Billy Ray has been experiencing a change in functioning and behaviors. His near fatal illness this summer that landed him on the ventilator for 9 days probably has not helped. Then there was the question we talked about the other day “where is this coming from”. Could it be the dementia he experiences or Autism or something else we haven’t figured out.
We are truly blessed to have brought together a great medical/psychiatric team who listen to what is occurring and value the documentation that we do. I know that this is not always the case for many families so appreciate it very much.
I would prefer that Billy Ray never have to take additional behavior medication. However, with his confusion increasing and his behavior becoming too risky we had to relook at it. Last week he was started on a new medication. I don’t share the drugs he is taking much because they work differently for different people. I discussed in this my prior post Behavior Medications – Friend or Foe, http://parentingacomplexchild.blogspot.com/2005/10/behavior-medicationfriend-and-foe.html.
This past week we have Billy Ray back to where he can respond to things like schedules, visuals and in home approaches. Past history would imply I shouldn’t get too excited because honeymoons on new medication don’t always last. Cautious optimism is warranted.
I continue to believe that maintaining Billy Ray on the lowest amount of medication and using the highest degree of non-medical methods at home is the most desirable approach. We strive to do that but there are times you have to work with medications in order for the other methods to work.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
We are truly blessed to have brought together a great medical/psychiatric team who listen to what is occurring and value the documentation that we do. I know that this is not always the case for many families so appreciate it very much.
I would prefer that Billy Ray never have to take additional behavior medication. However, with his confusion increasing and his behavior becoming too risky we had to relook at it. Last week he was started on a new medication. I don’t share the drugs he is taking much because they work differently for different people. I discussed in this my prior post Behavior Medications – Friend or Foe, http://parentingacomplexchild.blogspot.com/2005/10/behavior-medicationfriend-and-foe.html.
This past week we have Billy Ray back to where he can respond to things like schedules, visuals and in home approaches. Past history would imply I shouldn’t get too excited because honeymoons on new medication don’t always last. Cautious optimism is warranted.
I continue to believe that maintaining Billy Ray on the lowest amount of medication and using the highest degree of non-medical methods at home is the most desirable approach. We strive to do that but there are times you have to work with medications in order for the other methods to work.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Saturday, December 10, 2005
Where is this Coming From?
Time after time, we have to ask the subject question. Multiple diagnoses can have similar symptoms. When there is a change in behavior or other responses, it is important to get an idea where the issue is coming from.
As most of you know, Billy Ray, almost 23 years old, has the dual diagnosis of Down Syndrome and Autism as well as Bipolar and ADHD. Additionally it is believed he has early onset of the Dementia that some Down Syndrome people experience. It usually occurs in the mid thirties but Billy Ray began to show symptoms at 16 two years after a series of major seizures believed to be from a reaction to medication.
The “clinical trials” we have been referring to in the past couple of days make a big difference. For us clinical trials are mostly documentation that we share with his medical and psychiatric professionals. It helps the doctor to see what is happening and make informed recommendations for treatment.
It may also be that his schedule or sensory stimulation needs to be adjusted. I am so grateful to have the journals I have been keeping to look back and glean patterns to help answer the question “where is this coming from?”
Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
As most of you know, Billy Ray, almost 23 years old, has the dual diagnosis of Down Syndrome and Autism as well as Bipolar and ADHD. Additionally it is believed he has early onset of the Dementia that some Down Syndrome people experience. It usually occurs in the mid thirties but Billy Ray began to show symptoms at 16 two years after a series of major seizures believed to be from a reaction to medication.
The “clinical trials” we have been referring to in the past couple of days make a big difference. For us clinical trials are mostly documentation that we share with his medical and psychiatric professionals. It helps the doctor to see what is happening and make informed recommendations for treatment.
It may also be that his schedule or sensory stimulation needs to be adjusted. I am so grateful to have the journals I have been keeping to look back and glean patterns to help answer the question “where is this coming from?”
Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
Friday, December 9, 2005
Doing Your Own "Clinical Trials"
I have been thinking more about Dr. Sanghavi’s criticism of the family he profiled in The Secret Truth (Boston Globe Magainze 12/04/05) for performing “their own clinical trials”. Families of complex (more complicated) special needs children have few options except to become proactive by doing their own “clinical trials”, live in survival mode not really being able to get anywhere in terms of making things better for their child or place their child out of their home.
As Dr. Sanghavi says in the same article “autistic people are like snowflakes: No two are alike, and the clinical spectrum ranges from severe disability to near normalcy.” That is certainly true with only one diagnosis. Adding the dual diagnosis of Down Syndrome and Autism makes the uniqueness even stronger. Each child will manifest the symptoms of each diagnosis differently than if he experienced a single disability. When you add mental illness diagnoses or other medical and developmental disability diagnosis, it really muddies the water.
The late Dr. Ron Roy, Billy Ray’s first pediatric psychiatrist used to say that it would be impossible to cover every possibility in medical school. Combinations of diagnoses change the way any one disability plays out in an individual. In a recent conversation with prominent medical schools, I asked how much training in dealing with developmental disabilities was provided to the average pediatrician (who do not go on to become a developmental pediatrician). I was told that it was “touched on lightly”.
In the Foreword to my upcoming book, Parenting Your Complex Child (April 2006) , Kate Crow, Genetic Counselor writes: “Perhaps the most valuable parts of this book are Ms. Morgan's suggestions for observing and keeping records. Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”
You are the most important expert in your child’s care. Don’t let disrespect for your position or expertise relative to your child defeat that.
I did want to make a side note because I am getting emails when I don’t do Sunday blogs. We do not have support staff on Sundays and I try to do as much Mommie time as possible with Billy Ray. If we are able to go to church (meaning BR is calm and the roads aren’t too icy) I can’t get to the blog until late afternoon. If he is having a bad day I might not get it done at all. Thus, I am suspending Sunday blogs at least for now.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
As Dr. Sanghavi says in the same article “autistic people are like snowflakes: No two are alike, and the clinical spectrum ranges from severe disability to near normalcy.” That is certainly true with only one diagnosis. Adding the dual diagnosis of Down Syndrome and Autism makes the uniqueness even stronger. Each child will manifest the symptoms of each diagnosis differently than if he experienced a single disability. When you add mental illness diagnoses or other medical and developmental disability diagnosis, it really muddies the water.
The late Dr. Ron Roy, Billy Ray’s first pediatric psychiatrist used to say that it would be impossible to cover every possibility in medical school. Combinations of diagnoses change the way any one disability plays out in an individual. In a recent conversation with prominent medical schools, I asked how much training in dealing with developmental disabilities was provided to the average pediatrician (who do not go on to become a developmental pediatrician). I was told that it was “touched on lightly”.
In the Foreword to my upcoming book, Parenting Your Complex Child (April 2006) , Kate Crow, Genetic Counselor writes: “Perhaps the most valuable parts of this book are Ms. Morgan's suggestions for observing and keeping records. Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”
You are the most important expert in your child’s care. Don’t let disrespect for your position or expertise relative to your child defeat that.
I did want to make a side note because I am getting emails when I don’t do Sunday blogs. We do not have support staff on Sundays and I try to do as much Mommie time as possible with Billy Ray. If we are able to go to church (meaning BR is calm and the roads aren’t too icy) I can’t get to the blog until late afternoon. If he is having a bad day I might not get it done at all. Thus, I am suspending Sunday blogs at least for now.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
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