Simple things like the sequence (order) of steps in an activity are vitally important to Autistic and other complex children and adults. It is sometimes difficult to explain that to others working with my son, Billy Ray. As long as the end result is the same most feel the steps to getting there shouldn’t matter. They do matter to Billy Ray.
Here is a case in point. A previous support staff was thoroughly trained in the sequence of steps to give Billy Ray his bath. We were especially careful in the training because Billy Ray had gone through a period of refusing to take baths and it had taken months to get him back on course. I wrote up careful instructions, modeled the procedures several times and observed her doing the procedure several times before allowing her to do it independently.
A couple of weeks following this staff’s beginning to handle Billy Ray’s bath independently Billy Ray became agitated every weekend day when I bathed him. I asked the staff every Monday for three weeks if she was having any difficulty with his bath and if she had changed any sequence of steps. She denied any problems or changes. The third weekend Billy Ray actually punched me pretty hard when I was doing his skin care and assisting him with dressing. I was totally frustrated trying to figure out what had happened and asked staff again. She still denied any change or problems.
A couple of days after this last discussion with staff the behavior consultant who was assisting us at the time came for a visit. In the course of the meeting the staff stated to the consultant “by the way I have changed your sequence of events in getting him dressed and it works much better.” I could go on about it not being the consultant’s instructions (I wrote them) and the insubordination (since I was her supervisor not the consultant) but that is not the point of today’s post.
We had designed steps that appeared to make Billy Ray willing to take a bath after refusing due to negative experiences relative to bathing in a temporary treatment center placement. He had become secure in the sequence of steps and knew what to expect each time he had a bath. This staff decided that if she put his undershirt on sooner than the instructions called for it would be better for modesty and because it was getting fall so he would be warmer.
Staff’s idea was a good one. The problem was she didn’t discuss it with me before she implemented the change as the caregiver’s manual and my verbal instruction required. Thus, Billy Ray was used to the way she did this step five days a week. When I did his bath on the weekends he was confused because I did it differently. His agitation was confusion over why I was doing it differently than he was used to during the week.
In Parenting Your Complex Child we will talk more about determining sequence of activities and steps within an activity that work best for your child. Finding a comfortable schedule and being consistent with it can make a big difference in the agitation and negative behaviors that result from agitation and confusion.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Monday, November 14, 2005
Sunday, November 13, 2005
A Change is Coming...Reading Your Child's Behavior
Something is different in the way Billy Ray is acting. Maybe he is trying to do more things or maybe he is refusing to do his normal schedule. During these times I have learned to be especially mindful of these little signs.
Case in point, the past few days I have seen him picking up specks of paper that have dropped on the floor, straightening placemats on the table. This generally means he is ready for a schedule change. A consultant friend once said that if we don’t give him enough to do he will find something though it may not be what we want him to do.
This is probably a turning point for Billy Ray. He has had much adjustment in the past year. His school eligibility ended, we moved to a new community, have tried three new support staff, two of which are still with us and he has the life threatening illness that I wrote about earlier. He has taken several months to bounce back from the illness and a new diagnosis (diabetes) has come in the process. However, he seems to be feeling stronger, is confident in his full time support staff, Ron, and is communicating by this behavior that he is ready to move forward.
I spent last evening drafting a new schedule. We will add back some of the activities he did before he was ill and gradually give him more to do. We will add more community activities. Instructions must be written down so that support staff and family will assist in the activities in a consistent way. I plan to write about consistency and sequence of activities tomorrow. For now, change of schedules take several steps to achieve.
Being aware of the subtle changes in behavior is vitally important to keeping things smooth in our day to day life.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Case in point, the past few days I have seen him picking up specks of paper that have dropped on the floor, straightening placemats on the table. This generally means he is ready for a schedule change. A consultant friend once said that if we don’t give him enough to do he will find something though it may not be what we want him to do.
This is probably a turning point for Billy Ray. He has had much adjustment in the past year. His school eligibility ended, we moved to a new community, have tried three new support staff, two of which are still with us and he has the life threatening illness that I wrote about earlier. He has taken several months to bounce back from the illness and a new diagnosis (diabetes) has come in the process. However, he seems to be feeling stronger, is confident in his full time support staff, Ron, and is communicating by this behavior that he is ready to move forward.
I spent last evening drafting a new schedule. We will add back some of the activities he did before he was ill and gradually give him more to do. We will add more community activities. Instructions must be written down so that support staff and family will assist in the activities in a consistent way. I plan to write about consistency and sequence of activities tomorrow. For now, change of schedules take several steps to achieve.
Being aware of the subtle changes in behavior is vitally important to keeping things smooth in our day to day life.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Saturday, November 12, 2005
Low Functioning and High Functioning..A Mixed Bag
There is so much talk about high functioning and low functioning in Autism and other special needs. Before I get on my soapbox I want you to know that I don’t believe the value of a person is based on their ability to function one way or another. The most disabled person has value to society.
My definition of high functioning and low functioning doesn’t necessary fit with other definitions which apply it primarily to IQ. I think high and low functioning has more to do with the ability of a person to function in the world. It is my belief that it is a mixed bag. Someone who is high functioning in an educational setting maybe low functioning in terms life skills, social interaction and communication. It appears that many people are higher functioning than might otherwise appear and in some cases, the reverse is true.
I just reviewed again the CNN Presents: Autism is a World; aired in May 2005 (we taped it). This presentation is Sue Rubin’s story and is written by her. Sue is a 26 year old with Autism. She was labeled retarded until she was 13 when she learned facilitative communication. Her intelligence became known for the first time. Sue is an example of what I mean about high functioning and low functioning being interchangeable.
If you were to pass Sue on a street, you would probably see her as retarded not being able to discern her high degree of intelligence. She is substantially nonverbal using a keyboard to communicate for the most part. Her tongue protruded over her upper lip a good part of the documentary. Involuntarily movements and noises are pretty frequent. She says that she increases her appearance as retarded by carrying around plastic spoons with her most of the time. The spoons are her comfort. Her high intelligence would definitely place her as high functioning by most people’s definition.
Sue is able to get funding for 24 hour staff for her in her own house because she would not be able to dial 911 or do many of the things necessary for an independent lifestyle. She states she will always need help for communication and life skills. At the same time Sue is a junior in college majoring in history and clearly bright. She gives presentations and is a strong advocate for the disabled.
My greatest fear is that many people are trapped in a low functioning world where they could be involved in higher functioning activities for at least part of the time. In order to participate in these higher functioning activities opportunities have to be adapted to conditions most useable for the individual. I truly believe there are other Sue Rubins locked in institutions or ill-fitting programs because they didn’t have the support to show hidden strengths.
Parenting Your Complex Child (AMACOM Books Spring 2006) attempts to help parents and caregivers to explore what will assist an individual in functioning to the degree reasonable for the person. Complex children need help to be who they are as a person, whether high or low functioning or mixed bag.
Of the successful Autistic persons I have been studying recently one thing stands out: they had support systems willing to find out what worked for them. In her writing, Dr. Temple Grandin frequently credits her mother for helping her succeed. The support system for Sue Rubin by her parents is clear in the above referenced documentary. Parents and caregivers make a substantial difference.
Until tomorrow,
Peggy Lou
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
My definition of high functioning and low functioning doesn’t necessary fit with other definitions which apply it primarily to IQ. I think high and low functioning has more to do with the ability of a person to function in the world. It is my belief that it is a mixed bag. Someone who is high functioning in an educational setting maybe low functioning in terms life skills, social interaction and communication. It appears that many people are higher functioning than might otherwise appear and in some cases, the reverse is true.
I just reviewed again the CNN Presents: Autism is a World; aired in May 2005 (we taped it). This presentation is Sue Rubin’s story and is written by her. Sue is a 26 year old with Autism. She was labeled retarded until she was 13 when she learned facilitative communication. Her intelligence became known for the first time. Sue is an example of what I mean about high functioning and low functioning being interchangeable.
If you were to pass Sue on a street, you would probably see her as retarded not being able to discern her high degree of intelligence. She is substantially nonverbal using a keyboard to communicate for the most part. Her tongue protruded over her upper lip a good part of the documentary. Involuntarily movements and noises are pretty frequent. She says that she increases her appearance as retarded by carrying around plastic spoons with her most of the time. The spoons are her comfort. Her high intelligence would definitely place her as high functioning by most people’s definition.
Sue is able to get funding for 24 hour staff for her in her own house because she would not be able to dial 911 or do many of the things necessary for an independent lifestyle. She states she will always need help for communication and life skills. At the same time Sue is a junior in college majoring in history and clearly bright. She gives presentations and is a strong advocate for the disabled.
My greatest fear is that many people are trapped in a low functioning world where they could be involved in higher functioning activities for at least part of the time. In order to participate in these higher functioning activities opportunities have to be adapted to conditions most useable for the individual. I truly believe there are other Sue Rubins locked in institutions or ill-fitting programs because they didn’t have the support to show hidden strengths.
Parenting Your Complex Child (AMACOM Books Spring 2006) attempts to help parents and caregivers to explore what will assist an individual in functioning to the degree reasonable for the person. Complex children need help to be who they are as a person, whether high or low functioning or mixed bag.
Of the successful Autistic persons I have been studying recently one thing stands out: they had support systems willing to find out what worked for them. In her writing, Dr. Temple Grandin frequently credits her mother for helping her succeed. The support system for Sue Rubin by her parents is clear in the above referenced documentary. Parents and caregivers make a substantial difference.
Until tomorrow,
Peggy Lou
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, November 11, 2005
Support Staff.. A Valueable Resource
There is a perception that support staff or caregivers (or as my UK friends say “carers” – I love that) for the disabled are not as valuable as those who work in some other fields. The pay is generally low which does not necessarily increase a support staff’s sense of worth.
Finding appropriate staff is not easy partially because of the low pay and partially because it is harder work than one might think. When you do find a dedicated caregiver it makes so much difference for child/adult as well as the family.
Parenting Your Complex Child (AMACOM Books Spring 2006) will have information about hiring and training caregivers. It is an important part of parenting a complex child because you have to be away from your child at times. Even it is only occasional respite care having someone trained and available is vital.
Until tomorrow,
Peggy Lou
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Finding appropriate staff is not easy partially because of the low pay and partially because it is harder work than one might think. When you do find a dedicated caregiver it makes so much difference for child/adult as well as the family.
- They become best buddies with your child. Watching the relationship between them develop is great.
- As the relationship builds the caregivers pride in the success and little humorous things your child may do is obvious.
- When you are comfortable that a caregiver is responsible to take care of your child is it freeing to the parents. There is suddenly peace about taking time for the small pleasures most people take for granted (a bubble bath, routine medical or dental appointments for the parents, an occasional evening or lunch with one’s spouse, etc.).
Parenting Your Complex Child (AMACOM Books Spring 2006) will have information about hiring and training caregivers. It is an important part of parenting a complex child because you have to be away from your child at times. Even it is only occasional respite care having someone trained and available is vital.
Until tomorrow,
Peggy Lou
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, November 10, 2005
Dealing with a Thousand Questions (or so it seems) Everyday
Everynight just before Billy Ray goes to sleep he asks "where we going". He means what are we going to do tomorrow. Sometimes he needs to plan his clothes out (although he rarely wears the ones he chooses the night before). We need to deal with this pattern of questions over and over again until he feels secure in the answer before he will fall asleep.
Each day there is a series of repetitive questions that will come at various times. Answers must be specific and the same everytime. He has created acceptable answers. If he is given the "wrong" answer he can become agitated, sometimes dropping to the floor and refusing to go on with whatever activity is necessary. For example, his former high school principal, Mr. Koger, has to be "in his office" whether it is 3 a.m. on a Sunday morning or noon on Monday.
It is difficult for support staff to know all the answers to his questions. Sometimes it is difficult for them to even understand his question. In the above example he might say just "Koger". This could be that he wants to wear Koger shirts or pants because he has named his dark western slacks and white western shirts after Mr. Koger too. Finally, I created two notebooks one has two strip of velcro and reads "I want" and "I feel". He can place a velcroed symbol next to the appropriate phrase to complete it on the days he can't get the words out. The other is a picture guide with his questions. He can point to the picture and support staff can read his "answer".
I some photo albums that hold 4 x 6 pictures on a clearance table at the grocery store. They are the perfect size to put in my purse. When we go to a restaurant or wherever I can pull them out. He can look at pictures instead of the constant repetition he makes about what he wants or what are we going to do next. I change the pictures before we leave for whatever activity to have as many of the answers to anticipated questions as possible in that little book. He also has his planner (see Planners on my website for more details) with him most of the time which answer most of the "what are we going to do" next questions.
Is this an Autistic thing or a Down Syndrome thing or just a Billy Ray thing. It doesn't seem to matter, we just keep adapting what works for him.
If you do something different share it in the comments. It might help someone else to adapt to their child.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Each day there is a series of repetitive questions that will come at various times. Answers must be specific and the same everytime. He has created acceptable answers. If he is given the "wrong" answer he can become agitated, sometimes dropping to the floor and refusing to go on with whatever activity is necessary. For example, his former high school principal, Mr. Koger, has to be "in his office" whether it is 3 a.m. on a Sunday morning or noon on Monday.
It is difficult for support staff to know all the answers to his questions. Sometimes it is difficult for them to even understand his question. In the above example he might say just "Koger". This could be that he wants to wear Koger shirts or pants because he has named his dark western slacks and white western shirts after Mr. Koger too. Finally, I created two notebooks one has two strip of velcro and reads "I want" and "I feel". He can place a velcroed symbol next to the appropriate phrase to complete it on the days he can't get the words out. The other is a picture guide with his questions. He can point to the picture and support staff can read his "answer".
I some photo albums that hold 4 x 6 pictures on a clearance table at the grocery store. They are the perfect size to put in my purse. When we go to a restaurant or wherever I can pull them out. He can look at pictures instead of the constant repetition he makes about what he wants or what are we going to do next. I change the pictures before we leave for whatever activity to have as many of the answers to anticipated questions as possible in that little book. He also has his planner (see Planners on my website for more details) with him most of the time which answer most of the "what are we going to do" next questions.
Is this an Autistic thing or a Down Syndrome thing or just a Billy Ray thing. It doesn't seem to matter, we just keep adapting what works for him.
If you do something different share it in the comments. It might help someone else to adapt to their child.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Wednesday, November 9, 2005
Nice to Hear Your Comments
Apparently the picture of Keddie's client in his electric wheelchair peaked a lot of interest. Several people looked at older posts and made comments. My email server was ding donging a lot that I had comments.
While our children might share a common diagnosis such as Billy Ray's Down Syndrome, Autism, Bipolar, ADHD they are unique individuals. I can share about Billy Ray but your child or adult child may experience life differently. I believe that parent helping parent is the best education. I don't want this to be a one sided blog. Your comments help others.
I do feel that I have something to share with parents of younger complex children. However, the biggest goal is to encourage others to communicate and adapt. It is my hope on this blog, in Parenting Your Complex Child (AMACOM Books April 2006) and my websites to help parents figure out what works for their child as an individual. I don't expect you to do what I do for Billy Ray. I want to help you find what works for your child.
Talk to me. Tell me what is helpful in this blog and what isn't. If you have something to share about your child it will help others reading too.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
While our children might share a common diagnosis such as Billy Ray's Down Syndrome, Autism, Bipolar, ADHD they are unique individuals. I can share about Billy Ray but your child or adult child may experience life differently. I believe that parent helping parent is the best education. I don't want this to be a one sided blog. Your comments help others.
I do feel that I have something to share with parents of younger complex children. However, the biggest goal is to encourage others to communicate and adapt. It is my hope on this blog, in Parenting Your Complex Child (AMACOM Books April 2006) and my websites to help parents figure out what works for their child as an individual. I don't expect you to do what I do for Billy Ray. I want to help you find what works for your child.
Talk to me. Tell me what is helpful in this blog and what isn't. If you have something to share about your child it will help others reading too.
I just have to share that one of the comments I got last night was from our granddaughter, Alena. My husband is at their house helping his son build an entertainment center for their television. He helped them find the post I did What I Learned from My Grandchildren. It was so special to me to get that comment.
This part is off today's topic but I just wanted to share that when I talked to my husband I was telling him that the evening before when Billy Ray was talking with granddaughter, Elora he was really responsive to whatever she was saying. He told me that she was asking him very specific questions about his recovery from surgery and if his pain was all gone, etc. Elora has this incredible ability to draw out things from Billy Ray that no one else, including his doctors can always do.The relationship between Billy Ray and his nieces and nephews makes such a difference in his life and ours.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Tuesday, November 8, 2005
Who's "Tarded"
After I wrote the post about Retardation and Billy
Ray saying he is "tarded", my friend Keddie a
consultant to people with many types of
disabilities sent me this picture in an email
subjected "who's tarded". Apparently she was
having difficulty with her old car and
anticipated that she would need to roll
her car down her client's driveway to
get it started when she was ready to leave.
She had miscalculated. The picture is truly worth
a 1,000 words. I'm going to let it speak for itself.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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