I have been getting email lately from parents who are having difficulty getting professionals to accept the dual diagnosis of Down Syndrome and Autism. We had that same problem; however, our situation was complicated by the fact that Billy Ray experienced a series of severe seizures believed to be caused by a medication side effect.
The Down Syndrome Association of Victoria has a very good article on Autism in children with Down Syndrome. The article explains why it is difficult to diagnose Autism in Down Syndrome and gives suggested approaches. Two points in the article hit home relative to our situation.
While I had worked with many persons experiencing Down Syndrome prior to adopting Billy Ray, I had never worked with anyone as young as he was (15 months old). As a first time mother and without experience what babies with Down Syndrome experience, I assumed most of the things Billy Ray manifested were primarily related to Down Syndrome. I knew little about Autism at the time. Thus, I did not report changes to his developmental pediatrician. Additionally, he was experiencing multiple ear infections and other childhood illnesses which could have masked our recognition of Autism.
When the Autism evaluation was done on Billy Ray at 16 years old, questions about his early years revealed that early Autistic symptoms had been there but unrecognized.
The article suggests that once the diagnosis of Autism is established education and treatment approaches for Autism should be adopted and Down Syndrome should become secondary. I absolutely agree with that.
In the early years when Billy Ray was thin and an a sick little guy he was thin. The physical characteristics of Down Syndrome were not as apparent. When he began putting on more weight they were more obvious. Thus, when we go out in public people stereotype him as a person with Down’s. I like to say Down’s is the least of his problem.
That may sound as if I am minimizing Down Syndrome. That is not intentional. It is just that I have known and loved so many people who experience DS. While those I have known are all unique individuals, overall I have found the ability to love unconditionally and accept life as it comes, a common trait.
Autism as Billy Ray experiences it brings substantially more challenges than we had before the development of increased Autistic symptoms. I think the biggest thing I notice is the need to be on guard that things are set up for his comfort level, routines are maintained and communication tools used to the fullest extent possible. Gone are the more relaxed days that I experienced when Billy Ray was younger or with my former foster children who experienced Down Syndrome without Autism.
The stereotype that people with Autism can’t experience relationships or show affection is wrong. Many of our Autism Bloggers have shared photos on their blogs of their children making eye contact and having relationships with special people in their lives. I think it is easier for someone who experiences Down Syndrome to have those special relationships with people. My experience with Billy Ray is that he loves and bonds deeply but probably does less of it than other people I have worked with who have the single diagnosis of Down Syndrome.
Both disabilities are challenges without the combination. My observation is that the combination adds to their uniqueness. Some who experience the dual diagnosis will have traits more common to one diagnosis and some to the other.
Frequently when people ask me about Billy Ray’s diagnoses I like to laugh “Billy Ray is Billy Ray”. I am joking but very serious too. Because of the multiple diagnoses Billy Ray experiences including, but not limited to, Down Syndrome and Autism Billy Ray is a very unique person.
Until next time,
Peggy Lou Morgan
Yahoo Groups
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Amazon Blog
Showing posts with label Dual Diagnosis. Show all posts
Showing posts with label Dual Diagnosis. Show all posts
Thursday, March 23, 2006
Tuesday, March 21, 2006
Rapid Cycling of Another Kind
Billy Ray is experiencing an interesting kind of rapid cycling. You usually think of rapid cycling in terms of bipolar. It can be from one extreme (highs and lows) to the other quickly – thus the term rapid cycling. In the past few days we have noticed a type of rapid cycling that I am not sure is related to Bipolar.
The weekend started out with morning agitation, which is usual for a Saturday morning because his support staff has days off. We got past that, did his blood sugar test and gave him his first set of meds (Nexum for Acid Reflux has to be given separate from the medication for his Bipolar and before he eats).
He choked on his very first bite of breakfast. Choking is a pretty regular occurrence but this was more severe than we generally experience.
Billy Ray’s Ear, Nose and Throat specialist taught me to do the Heichlein if I ever had to. However, I am not sure I could ever do it. Some children cry and run to Mom when they are sick or hurt. From the time, Billy Ray was a toddler he got mad if he fell or got hurt. He is not able to understand pain as coming from within. If he hurts someone is hurting him and it is usually believed to be Mom. If I try to rub his back or wipe his face while he is choking I generally get punched. He may take off in anger because he is choking. I am not sure even a burley EMT could do the Heichlein.
After we got past the choking, he finished breakfast and I gave him a Nebulizer treatment. He was watching a movie in his bedroom while I went to the bathroom. When I came back he had incident made his bed and placed his stuffed animals on it. He was very proud of himself and I praised him enthusiastically.
About 10:30 a.m. there was episode of agitation/behavior that had no obvious cause. We have learned that when it comes on that quick and doesn’t seem to be about anything it is generally physical.
That afternoon we took a ride to the little town of Sisters, Oregon. There is a discount leather shop there where nothing is over $20.00. Billy Ray enjoyed the ride and the shopping.
He has been going from those cycles and back and forth. One minute he is sharp as a tack, doing activities that are very independent and the next he is clingy or agitated or can’t remember that he has eaten or is confused as to time of day.
We are enjoying those special moments of independence and success. Overall he seems to be in a good place with momentarily lapses.
We did have to put him back on antibiotics for more of the skin issues he seems to be getting with increasing frequency.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog
The weekend started out with morning agitation, which is usual for a Saturday morning because his support staff has days off. We got past that, did his blood sugar test and gave him his first set of meds (Nexum for Acid Reflux has to be given separate from the medication for his Bipolar and before he eats).
He choked on his very first bite of breakfast. Choking is a pretty regular occurrence but this was more severe than we generally experience.
Billy Ray’s Ear, Nose and Throat specialist taught me to do the Heichlein if I ever had to. However, I am not sure I could ever do it. Some children cry and run to Mom when they are sick or hurt. From the time, Billy Ray was a toddler he got mad if he fell or got hurt. He is not able to understand pain as coming from within. If he hurts someone is hurting him and it is usually believed to be Mom. If I try to rub his back or wipe his face while he is choking I generally get punched. He may take off in anger because he is choking. I am not sure even a burley EMT could do the Heichlein.
After we got past the choking, he finished breakfast and I gave him a Nebulizer treatment. He was watching a movie in his bedroom while I went to the bathroom. When I came back he had incident made his bed and placed his stuffed animals on it. He was very proud of himself and I praised him enthusiastically.
About 10:30 a.m. there was episode of agitation/behavior that had no obvious cause. We have learned that when it comes on that quick and doesn’t seem to be about anything it is generally physical.
That afternoon we took a ride to the little town of Sisters, Oregon. There is a discount leather shop there where nothing is over $20.00. Billy Ray enjoyed the ride and the shopping.
He has been going from those cycles and back and forth. One minute he is sharp as a tack, doing activities that are very independent and the next he is clingy or agitated or can’t remember that he has eaten or is confused as to time of day.
We are enjoying those special moments of independence and success. Overall he seems to be in a good place with momentarily lapses.
We did have to put him back on antibiotics for more of the skin issues he seems to be getting with increasing frequency.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog
Saturday, December 17, 2005
Bipolar and Autism as Billy Ray Experiences It
Bipolar is basically mood swings from high to low. It is cyclic with big highs (mania) and desperate lows (depression). Thus bipolar is often referred to as manic/depression as well. Some folks who experience this have what is called rapid cycling. Billy Ray can be calm one minute and then manic the next. He doesn’t experience as much depressive state.
It is interesting that Griffin’s Mom wrote in her blog a few days about bipolar because I have been doing internet research on Bipolar because it has been suggested by the psychiatrist that the out of control behavior Billy Ray is experiencing maybe a worsening of his bipolar. I have been told there is a link between bipolar and autism and I am hearing of more children who have both diagnoses. Thus have been trying to understand where one comes in and the other one comes in.
I don’t talk as much about Billy Ray’s experience with bipolar. Maybe that is because it has been controlled with medication a lot of the time since his diagnosis. There are things that occur in Bipolar that could also be symptoms of Autism or ADHD.
When he was seven, he had already been diagnosed with ADHD and was using stimulants for that. We had experienced a family trauma. My late husband had been in the hospital for two months with lung problems. A few weeks after his return home he drove the little Mazada pickup that was special between father and son to observe the highway construction project he had been working on before his hospitalization. An 18 wheeler pushed a car across the median into Raymond and he was back in the hospital. The combination of Dad being back in the hospital and their little truck being totaled set in motion Billy Ray’s first manic episode. The psychiatrist explained that bipolar can be brought out younger than it normally would if there is some sort of trauma.
It was clearly different than what he had exhibited with ADHD. He was literally a wild man and incredibly strong. The developmental pediatrician sent us to a pediatric psychiatrist. It didn’t take long for the psychiatrist to make the diagnosis of bipolar. Once we had established that he was able to control it with meds for a number of years. Billy Ray had not been diagnosed with Autism at that point though I now understand that he had symptoms of mild autism I didn’t recognize then.
I wanted to find links for you which would explain how bipolar manifests in an Autistic child. That was difficult to find. I did find a MSN group site Bipolar and Autism. The beginning of it is fairly detailed and a bit hard to read, however, when you get to “Mania” it has specifics about mania in an Autistic child might. It is not clear who this group is so I am not going to quote it as authority. Here’s the link, you can decide for yourself. http://groups.msn.com/TheAutismHomePage/bipolardisorder.msnw.
Here is how Billy Ray experiences hyperactivity and mania (which can be combined but aren’t necessarily):
Hyperactivity: A basic inability to sit still or remain focused on anything. It includes bouncing up and down in place or running and throwing behaviors. Note that some of these behaviors are also a part of mania as we experience it. The main difference is the degree of excitement involved. Hyperactivity can quickly escalate into mania for Billy Ray.
Mania: Similar to the mania in adults with bipolar disorder (sense of being invincible, no impulse control, sleep issues, irritability, etc.), but it also includes the following:
That old question of where is this coming from is a constant source of wondering for me. I pray a lot and review his journals repeatedly to try to figure how to handle each new challenge. In Billy Ray’s case, I have basically come to understand that Autism responds to the programs and schedules that I have learned works for him. For the most part when he is not responding to things that have worked in the past, we have tried to adapt and communicate with him and he is still manic it is most likely coming from bipolar and we need to call the psychiatrist. Usually the only thing that has worked for bipolar in Billy Ray is medication no matter how much I would prefer to avoid it.
Billy Ray recently started on a new medication. He is not perfect but he sure is better (sigh).
I would love to hear from others of you who have children with the dual diagnosis of Bipolar and Autism especially if they also have Down Syndrome.
Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
It is interesting that Griffin’s Mom wrote in her blog a few days about bipolar because I have been doing internet research on Bipolar because it has been suggested by the psychiatrist that the out of control behavior Billy Ray is experiencing maybe a worsening of his bipolar. I have been told there is a link between bipolar and autism and I am hearing of more children who have both diagnoses. Thus have been trying to understand where one comes in and the other one comes in.
I don’t talk as much about Billy Ray’s experience with bipolar. Maybe that is because it has been controlled with medication a lot of the time since his diagnosis. There are things that occur in Bipolar that could also be symptoms of Autism or ADHD.
When he was seven, he had already been diagnosed with ADHD and was using stimulants for that. We had experienced a family trauma. My late husband had been in the hospital for two months with lung problems. A few weeks after his return home he drove the little Mazada pickup that was special between father and son to observe the highway construction project he had been working on before his hospitalization. An 18 wheeler pushed a car across the median into Raymond and he was back in the hospital. The combination of Dad being back in the hospital and their little truck being totaled set in motion Billy Ray’s first manic episode. The psychiatrist explained that bipolar can be brought out younger than it normally would if there is some sort of trauma.
It was clearly different than what he had exhibited with ADHD. He was literally a wild man and incredibly strong. The developmental pediatrician sent us to a pediatric psychiatrist. It didn’t take long for the psychiatrist to make the diagnosis of bipolar. Once we had established that he was able to control it with meds for a number of years. Billy Ray had not been diagnosed with Autism at that point though I now understand that he had symptoms of mild autism I didn’t recognize then.
I wanted to find links for you which would explain how bipolar manifests in an Autistic child. That was difficult to find. I did find a MSN group site Bipolar and Autism. The beginning of it is fairly detailed and a bit hard to read, however, when you get to “Mania” it has specifics about mania in an Autistic child might. It is not clear who this group is so I am not going to quote it as authority. Here’s the link, you can decide for yourself. http://groups.msn.com/TheAutismHomePage/bipolardisorder.msnw.
Here is how Billy Ray experiences hyperactivity and mania (which can be combined but aren’t necessarily):
Hyperactivity: A basic inability to sit still or remain focused on anything. It includes bouncing up and down in place or running and throwing behaviors. Note that some of these behaviors are also a part of mania as we experience it. The main difference is the degree of excitement involved. Hyperactivity can quickly escalate into mania for Billy Ray.
Mania: Similar to the mania in adults with bipolar disorder (sense of being invincible, no impulse control, sleep issues, irritability, etc.), but it also includes the following:
- Hitting, kicking, pushing.
- General silliness that is out of control.
- Running from us, both outside or taking off across the room to grab something.
- Throwing things down the stairwell or just aimlessly across the room. This can be anything he sees sitting on the kitchen counter, clothes from his hamper, his shoes, garbage, etc., particularly something that is out of its normal place. We had to take his wastebasket out of his room because it seemed he couldn’t stand even small amounts of trash in it. Now he is beginning to do the same with kitchen garbage.
That old question of where is this coming from is a constant source of wondering for me. I pray a lot and review his journals repeatedly to try to figure how to handle each new challenge. In Billy Ray’s case, I have basically come to understand that Autism responds to the programs and schedules that I have learned works for him. For the most part when he is not responding to things that have worked in the past, we have tried to adapt and communicate with him and he is still manic it is most likely coming from bipolar and we need to call the psychiatrist. Usually the only thing that has worked for bipolar in Billy Ray is medication no matter how much I would prefer to avoid it.
Billy Ray recently started on a new medication. He is not perfect but he sure is better (sigh).
I would love to hear from others of you who have children with the dual diagnosis of Bipolar and Autism especially if they also have Down Syndrome.
Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.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/
Monday, November 7, 2005
Monday Morning Reflections
I fell in love with the personality common in many children and adults who experience Down Syndrome more than 35 years ago because of our little neighbor girl. Over the years I have worked with many children and adults with Down Syndrome diagnoses. The frequent smiling and seeming to just go with the flow was common among those I worked with.
When Billy Ray came to us at 15 months old the only diagnosis was Down Syndrome and chronic ear infections. His personality was laid back and happy most of the time although he terrible twos set in quickly. He was content to do things with me around the house and go with me wherever we needed to go. Change in routine didn't bother him that much.
Now Billy Ray has a dual diagnosis of Down Syndrome and Autism plus a few other ones thrown in, bipolar, ADHD and medical ones we won't go into today. He is not nearly as "go with the flow". Change in routine can set him off in various ways ranging from "drop" (throwing himself on the floor in confusion or frustration) to full scale agitation (which might be aggression or throwing things including furniture). His constant noise, much of it just noise not verbalization and agitation is difficult to deal with for a Mom who loves quiet. The personsality I fell in love with all those years of working with persons experiencing Down Syndrome is still there but it doesn't come out as much. Our lives are full of routines and methods of communication that keep us fairly regimented.
My husband is visiting his sons in another state. Billy Ray doesn't like it when his stepfather goes away but he has handled it better this time than sometimes. When it happens on a weekend it is more difficult because he is already off schedule for weekends and we don't have support staff on Sundays.
After dealing with a clogged up tiolet which ran over onto the freshly mopped floor, our Sunday went fairly well. We didn't make it to church because of Billy Ray's need to stay close to the tiolet and dealing with the clogged tiolet. I anticipated an explosion or at least a "drop" at anytime but it didn't materialize.
I realized last night putting him in bed that we had a bit of the old Billy Ray while he experienced the single diagnosis of Down Syndrome yesterday. He was happy to work with me puttering around the house getting some things I have wanted to do for a while done. Other times he watched a movie in the living room where I could see him while dejunking the kitchen counters something I had longed to do for weeks. We made diabetic cookies together and he loved taking them off the cookie sheet with a spatula. We went out for an early dinner together despite the snow and had a pleasant time.
It was a nice time just being with my son this weekend. It reminded me of the time we spent together following his Dad's death when it was just us.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
When Billy Ray came to us at 15 months old the only diagnosis was Down Syndrome and chronic ear infections. His personality was laid back and happy most of the time although he terrible twos set in quickly. He was content to do things with me around the house and go with me wherever we needed to go. Change in routine didn't bother him that much.
Now Billy Ray has a dual diagnosis of Down Syndrome and Autism plus a few other ones thrown in, bipolar, ADHD and medical ones we won't go into today. He is not nearly as "go with the flow". Change in routine can set him off in various ways ranging from "drop" (throwing himself on the floor in confusion or frustration) to full scale agitation (which might be aggression or throwing things including furniture). His constant noise, much of it just noise not verbalization and agitation is difficult to deal with for a Mom who loves quiet. The personsality I fell in love with all those years of working with persons experiencing Down Syndrome is still there but it doesn't come out as much. Our lives are full of routines and methods of communication that keep us fairly regimented.
My husband is visiting his sons in another state. Billy Ray doesn't like it when his stepfather goes away but he has handled it better this time than sometimes. When it happens on a weekend it is more difficult because he is already off schedule for weekends and we don't have support staff on Sundays.
After dealing with a clogged up tiolet which ran over onto the freshly mopped floor, our Sunday went fairly well. We didn't make it to church because of Billy Ray's need to stay close to the tiolet and dealing with the clogged tiolet. I anticipated an explosion or at least a "drop" at anytime but it didn't materialize.
I realized last night putting him in bed that we had a bit of the old Billy Ray while he experienced the single diagnosis of Down Syndrome yesterday. He was happy to work with me puttering around the house getting some things I have wanted to do for a while done. Other times he watched a movie in the living room where I could see him while dejunking the kitchen counters something I had longed to do for weeks. We made diabetic cookies together and he loved taking them off the cookie sheet with a spatula. We went out for an early dinner together despite the snow and had a pleasant time.
It was a nice time just being with my son this weekend. It reminded me of the time we spent together following his Dad's death when it was just us.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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