Tuesday, April 05, 2011
Have to laugh...
Sometimes in this house you have to laugh to keep from crying. Greg had yet another work-related meeting tonight, so I tackled the pointless task of having the kids clean up the family room before bed. While cleaning up, Madeline found a few things that belonged in her room, so she headed to take them upstairs. In efforts to keep the clean up project on track, I told her to put them at the top of the stairs. While they were finishing cleaning up, I pulled out the vacuum to get some stray popcorn pieces. The kids started acting crazy so I sent them both to their rooms. After vacuuming, I headed upstairs. I was met at the top of the stairs with the things I told Madeline to put there while we were cleaning. I was upset and asked her why she walked over them to go upstairs instead of taking them up with her. She very innocently looked at me and said "You said to put them at the top of the stairs." Oh my! How often I have to remind myself that her brain does not function like mine?? She did not read the implied context that I wanted her to take them upstairs after cleaning up and I just wanted her to put them on the stairs while we finished cleaning. It definately tries my patience all throughout the day as I constantly have to take a step back and try to look at things through my "Madeline-lense". At OT today, her therapist and I were talking about our bodies' nature ability to work together. That's how we were designed--for thought information to get carried through to action information. Madeline's brain is not wired that way. So I have to try and think about something that my brain is designed not to think about. (Chew on that one a while!) It is incredibly humbling, frustrating, and rewarding to be Madeline's mom. It brings me to my knees constantly. I'm just hoping the bruises on my knees don't become too painful. :o) To those out there that actually read this blog, thanks for listening to my brain download tonight.
Tuesday, March 22, 2011
Continuous Exposure
Madeline's therapist has been talking to me about the concept of continuous exposure. I read about it in the book I've been reading about NLD too. It is so interesting. My daughter, who is so brilliant at some things, can't understand, just simply can't, things like "other people might not always want to play what you want to play". The idea of continuous exposure is one that I continuous repeat the same idea over and over. Like "You should give your friends a chance to pick what you play at recess." Well, last night I saw that it worked--at bedtime I was talking to her about recess. She told me she played robots with her best friend, Brody. I knew that there was no way she would think to play robots, so I asked "Whose idea was that?" I was so happy when she said, "Well, Brody said, 'What do you want to play?' and I decided to let him pick so I said 'Why don't you pick today?' and he picked robots." It was a HUGE victory! Every time she is able to do this she will be teaching her brain that it is OK to let someone else be in control. Continuous exposure--what a concept! Huge amounts of patience are required with the continuous exposure concept because I have to remind myself that it will take literally 50-100 times or more for me to repeat an idea to Madeline before she will even be willing to try it. But at least now I have a positive example to remind myself that it can work!
Sunday, March 13, 2011
Small But Huge
I was going to use this blog to pass along information that I am learning about NLD. Turns out, learning about it is very difficult because resources are not plentiful on this disorder. I am learning things about Madeline and her NLD every day. One small, but huge thing that I've learned lately is that you can't say "you guys" when talking to her. It is way to contextual and she can't infer what you mean. I take for granted that fact that I can infer other people's context when they are talking to me. A good example is when we were in the car after Madeline's first grade music program at school. Greg said "You guys did a great job tonight!". Madeline said nothing. I whispered to Greg "implied context", so he said "Your class did a great job tonight!" Madeline smiled and said "Thank you!" It is such a small thing, but if not corrected, Madeline would not have know that Greg was giving her and her classmates a big compliment. I keep praying for God to show me these things to help Madeline understand what we are trying to communicate to her--especially if it relates to her self esteem!
Tuesday, January 25, 2011
Insights Part 2
A few more insights from my book--
-"Children with NLD generally have poor safety awareness because they don't anticipate the consequences of their actions. They are prone to frequent injuries."
-"Visual perception is another area of deficit. Spatial thinking develops in infancy from the information gained from exploration. Moving through the world, we learn to relate the sizes of objects to our own bodies to allow us to better understand our world. We use this information to know location, shape, quantity, direction, time and movement. We dorm visual memories of our environments. We make mental notes regarding the effort needed to move a ball or lift a glass successfully to our mouths or walk through a room of furniture. But children with NLD often lack this ability to gather, interpret, and understand information taken in through the sense of sight."
"When children have a decreased sense of self, a poor sense of where their bodies are in space, and a poor understanding of how to safely move and navigate in their environment, they tend to invent coping strategies that serve to control their environment. They often choose to adhere strictly to routines, because eliminating novel experiences helps them feel more confident and comfortable. They find that decreasing the number of changes decreases the number of new demands placed upon them. With this control in place, they have greater opportunity to succeed using their routines, their rote learning, and their past successful performances."
-"...play with others is full of challenges, changes, and unexpected events. This can be stressful and difficult for children who crave sameness as a way of coping. They can easily become anxious about play and try to avoid it. While they long for friends, they may be working so hard on trying to control play to ensure their success and limit their failures, and to limit the levels of anxiety they are experiencing, that the child they're attempting to play with feels controlled and considers the other child bossy. Of course, this breeds a new cycle. Avoiding opportunities decreases the chances for learning new play skills, learning to negotiate, share, and be with others in relaxing ways. As these kids frown older and experience increasing difficulty and frustration in academic and social situations, they are prone to anxiety and poor self-esteem."
-"Children with NLD generally have poor safety awareness because they don't anticipate the consequences of their actions. They are prone to frequent injuries."
-"Visual perception is another area of deficit. Spatial thinking develops in infancy from the information gained from exploration. Moving through the world, we learn to relate the sizes of objects to our own bodies to allow us to better understand our world. We use this information to know location, shape, quantity, direction, time and movement. We dorm visual memories of our environments. We make mental notes regarding the effort needed to move a ball or lift a glass successfully to our mouths or walk through a room of furniture. But children with NLD often lack this ability to gather, interpret, and understand information taken in through the sense of sight."
"When children have a decreased sense of self, a poor sense of where their bodies are in space, and a poor understanding of how to safely move and navigate in their environment, they tend to invent coping strategies that serve to control their environment. They often choose to adhere strictly to routines, because eliminating novel experiences helps them feel more confident and comfortable. They find that decreasing the number of changes decreases the number of new demands placed upon them. With this control in place, they have greater opportunity to succeed using their routines, their rote learning, and their past successful performances."
-"...play with others is full of challenges, changes, and unexpected events. This can be stressful and difficult for children who crave sameness as a way of coping. They can easily become anxious about play and try to avoid it. While they long for friends, they may be working so hard on trying to control play to ensure their success and limit their failures, and to limit the levels of anxiety they are experiencing, that the child they're attempting to play with feels controlled and considers the other child bossy. Of course, this breeds a new cycle. Avoiding opportunities decreases the chances for learning new play skills, learning to negotiate, share, and be with others in relaxing ways. As these kids frown older and experience increasing difficulty and frustration in academic and social situations, they are prone to anxiety and poor self-esteem."
Monday, January 24, 2011
Insights
Insights are wonderful. This book has brought me so many. There are times I am reading that I am certain the author has been observing Madeline and wrote the book about her. It helps me know that this is definitely the right diagnosis. There are so many things that make me say "Yep, that's Madeline". Here are some--
-"Children with NLD generally don't recognize or interpret one or more of the following areas of nonverbal communication: facial expressions, postures, gestures, the meaning of tone, intensity, and loudness of voice, the appropriate distance between people, the rhythm and timing of conversation, or appropriate grooming and hygiene. Social interactions usually depend on these subtle elements of nonverbal communication."
-"Children with NLD typically lack the ability to use past experiences to understand new or unique information. They are usually unable to generalize from one situation to another. Even if they know the social rule for one situation, they may not realize it applies to another situation. They may know not to eat with their fingers at home, but not realize this also applies at Grandma's house."
-"Children with NLD tend to be lethargic, tire easily, and require frequent breaks when studying. Because their sensory integration impairment and social incompetence typically means they live with constant stress, they are subject to frequent stress-related illnesses such as upper-respiratory infections." (In Madeline's case it is headaches.)
-"Children with NLD have some degree of tactile imperceptions (finger agnosia), meaning they do not receive adequate information from the tactile sensory system. They lack the ability to understand or profit from information gathered through the sense of touch."
-"The problems with motor skills associated with NLD appears to result from a decreased awareness of the body. Children with NLD don't receive adequate information from the sensory system to respond quickly to being off-center, or they fail to anticipate the consequences of an action; therefor, they frequently lose their balance. They tend to have delayed responses to movement because their bodies don't experience that they've moved for an interval after the movement happens. Because their bodies don't properly register where they are in space, children with NLD tend to bump into people or objects, especially on their left side, and frequently fall out of chairs, usually falling to the left."
These are just a few things that have jumped out at me. There are many many more that I will share along the way. Thanks for reading.
-"Children with NLD generally don't recognize or interpret one or more of the following areas of nonverbal communication: facial expressions, postures, gestures, the meaning of tone, intensity, and loudness of voice, the appropriate distance between people, the rhythm and timing of conversation, or appropriate grooming and hygiene. Social interactions usually depend on these subtle elements of nonverbal communication."
-"Children with NLD typically lack the ability to use past experiences to understand new or unique information. They are usually unable to generalize from one situation to another. Even if they know the social rule for one situation, they may not realize it applies to another situation. They may know not to eat with their fingers at home, but not realize this also applies at Grandma's house."
-"Children with NLD tend to be lethargic, tire easily, and require frequent breaks when studying. Because their sensory integration impairment and social incompetence typically means they live with constant stress, they are subject to frequent stress-related illnesses such as upper-respiratory infections." (In Madeline's case it is headaches.)
-"Children with NLD have some degree of tactile imperceptions (finger agnosia), meaning they do not receive adequate information from the tactile sensory system. They lack the ability to understand or profit from information gathered through the sense of touch."
-"The problems with motor skills associated with NLD appears to result from a decreased awareness of the body. Children with NLD don't receive adequate information from the sensory system to respond quickly to being off-center, or they fail to anticipate the consequences of an action; therefor, they frequently lose their balance. They tend to have delayed responses to movement because their bodies don't experience that they've moved for an interval after the movement happens. Because their bodies don't properly register where they are in space, children with NLD tend to bump into people or objects, especially on their left side, and frequently fall out of chairs, usually falling to the left."
These are just a few things that have jumped out at me. There are many many more that I will share along the way. Thanks for reading.
Friday, January 21, 2011
Must Watch
I watched "Temple Grandin" 2 weeks ago and can not get it out of my mind. It was a beautifully made movie, so that alone is worth recommending it to others to watch. On top of that it was amazingly insightful and helpful to me personally. Temple Grandin has autism. That word is so big and scary in 2011, how much more so in the 1960s. Yet Temple was born to a mother that would not give up on the child she had been given. She refused to institutionalize her and used her best abilities to work with her. In high school she placed Temple in a boarding school and then forced her to go to college. Both were big steps in helping Temple become social and independent. What an amazing woman to carry the burden of raising such a "different child" in a time where there was not much help and very little resources available. In turn, Temple herself has become an INCREDIBLE resource to mothers, fathers, caregivers, and therapists all over the world because of her ability to verbalize how her brain works. The movie brought to light things that I have seen Madeline do countless times, but now I "get it". Yes, Temple has autism, but she is an amazing, independent, sucessful woman who learned to use her strengths and work around her weaknesses/deficits. Watching the movie made me want to laugh and cry at the same time. It made me so thankful that I live in an era and an area with bountiful resources for my child. There were so many things about the movie that gave me a new perspective on what the future looks like for Madeline. Although Temple's diagnosis is autism, we know that if Madeline was diagnosed 50 years ago, she'd be diagnosed with autism too. The neurological deficits Temple is able to verbalize are so helpful to me to see how Madeline is probably thinking. The movie also made me realize how much progress we have made in the past 5 years. Temple would shudder if anyone tried to touch her to comfort her. It looked so familiar since my child used to do that. Now she is happy to give and usually receive hugs and physical comfort. I don't want to forget the progress we've made! So if you're looking for a new movie to watch this weekend--rent "Temple Grandin". I highly recommend it!
Thursday, January 20, 2011
Our Life with NLD
I am learning so much about Nonverbal Learning Disorder every day. I thought using my blog as a vehicle for this information would be helpful to pass along information that I'm learning. I've been reading "Bridging the Gap: Raising a Child with Nonverbal Learning Disorder" and it has been very eye opening. I thought I'd share a few snippets from there in today's post. I am learning a lot about what implied context is and how much it is just a part of everyday communication. I have to retrain myself to not use implied context and it is hard. This paragraph gives a glimpse--
"When you are teaching your rules to your child, it's important to say what to do, not just what not to do. If you say, "Don't throw the Frisbee in the house," you're actually implying a lot of nonverbal information that your child may not infer. You've told your child not to throw a Frisbee indoors, but he may still think it's okay to throw a basketball in the living room. "Please throw things only when you're outside, " is a much clearer communication. As children with NLD must learn to take the perspective of others, we have to take their perspective, too, to understand what our words mean to them." Never assume your child knows something just because he "should" or because "everyone knows that." There are no "shoulds for children with NLD."
-Those that have been around Madeline a lot know that she can not be over prepared for new situations. I have to explain and explain what is going to happen, what possible outcomes are, etc. I now understand a lot more about why that is the case. She doesn't have the ability to "preview"--another neurological skill we naturally develop that she can't. This part of the book was enlightening--
"Children with NLD have difficulty with novel situations. Previewing upcoming events with them can make a big difference in how they handle a new situation and how anxious about it they will be. Part of previewing requires keeping in mind the next thing coming up and getting ready for it. Most people do it automatically, creating a mental picture of how a situation will play out. But kids with NLD don't Ave the ability to make mental pictures about future events, they need to use words to get them prepared. If you ask your child to talk through a scenario with you, you're helping him learn to preview a process through language."
--This section of the book also touches on an important future goal for Madeline. We don't expect her to be able to preview events like other kids can, but we are going to work on giving her adaptive skills to process in her own way and feel more prepared for new things. It has been an important distinction for me to recognize this process is not about her "becoming normal" or "catching up". It is about working with the neurological deficits she has and creating adaptive skills for her so she can process things in a more predictable way.
Well, I think that is enough for today. I have so much information coming in that at least this is a way for me to get some out. Thanks for reading.
"When you are teaching your rules to your child, it's important to say what to do, not just what not to do. If you say, "Don't throw the Frisbee in the house," you're actually implying a lot of nonverbal information that your child may not infer. You've told your child not to throw a Frisbee indoors, but he may still think it's okay to throw a basketball in the living room. "Please throw things only when you're outside, " is a much clearer communication. As children with NLD must learn to take the perspective of others, we have to take their perspective, too, to understand what our words mean to them." Never assume your child knows something just because he "should" or because "everyone knows that." There are no "shoulds for children with NLD."
-Those that have been around Madeline a lot know that she can not be over prepared for new situations. I have to explain and explain what is going to happen, what possible outcomes are, etc. I now understand a lot more about why that is the case. She doesn't have the ability to "preview"--another neurological skill we naturally develop that she can't. This part of the book was enlightening--
"Children with NLD have difficulty with novel situations. Previewing upcoming events with them can make a big difference in how they handle a new situation and how anxious about it they will be. Part of previewing requires keeping in mind the next thing coming up and getting ready for it. Most people do it automatically, creating a mental picture of how a situation will play out. But kids with NLD don't Ave the ability to make mental pictures about future events, they need to use words to get them prepared. If you ask your child to talk through a scenario with you, you're helping him learn to preview a process through language."
--This section of the book also touches on an important future goal for Madeline. We don't expect her to be able to preview events like other kids can, but we are going to work on giving her adaptive skills to process in her own way and feel more prepared for new things. It has been an important distinction for me to recognize this process is not about her "becoming normal" or "catching up". It is about working with the neurological deficits she has and creating adaptive skills for her so she can process things in a more predictable way.
Well, I think that is enough for today. I have so much information coming in that at least this is a way for me to get some out. Thanks for reading.
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