Gifted Issues Discussion homepage Forums Twice Exceptional Sensory Systems and Day-to-Day Variations

I read an article written by Fernette Eide, MD, Sensory Integration--Current Concepts & Practical Implications, and in it she said "For patients, their families, and their teachers, the unpredictability of sensory dysfunction and its day-to-day variation is one of its most frustrating features." My son and I definitely agree with that statement. My son's piano teacher would also agree. She was very understanding last week when he couldn't play very well even though he had practiced and wasn't surprised that he played much better yesterday even though he had less practice. She is one of the few people who seems to understand. I think the physical therapist would also agree with the statement after seeing him do well one day and then not nearly as well the next. I don't think she had ever seen anyone with motor dyspraxia before. It was hard for me to explain to her why this happens when I didn't totally understand it myself. The neuropsychologist that charged thousands of dollars (paid by insurance) wasn't any help when I asked her about it. Maybe her time was up and she didn't have time to answer any more questions. Whatever the reason, I didn't get many answers so I still spend hours on the internet looking.

I think I found an explanation for this when I read that our sensory systems play a critical role in activating arousal and "fight or flight" mechanisms, which activate some sensory pathways "at the expense of others." I know that there have even been times when I was tired, emotionally drained, and dealing with anxiety that I couldn't see something that was right in front of my face, as if my visual processing ability was affected. I could not process what I was seeing. I think this kind of thing happens more often to him.

My son was dealing with the recent death of his 38-year-old musical theater teacher who died in her sleep from unknown causes. He had spent more time with her in the last seven years than his own relatives, because he felt that was the one place he belonged. His relatives spend a lot of time talking about the physically gifted, high school football star cousins and are not interested in academics or anything he is interested in and he is very aware of this. The musical theater group was his safe place where he could be himself. A few days after his musical theater teacher died, his uncle developed bacterial meningitis after having the flu. He is out of the hospital now and is going to be okay. My son remembered that a few years ago a girl at our church nearly died from bacterial meningitis. I know these things are worrying him because he has been checking on me just to make sure I am okay more often than he used to. I think he has this feeling of what is going to happen next? He also seems more worried about his own aches and pains. He seems to have pain somewhere every day, if not migraines, then it is something else. He wonders if he is more sensitive to pain than other people because of sensory integration dysfunction. He has trouble focusing when in pain or worrying about something. We have to work around it and sometimes I am so tired and cranky and just want to get things done that I am not as patient as I should be. I told him he would just have to find a way to work through the pain and anxiety because he can't just stop doing the things he needs to do. He says I just don't understand and I am being mean. I feel like I am being mean and I don't know what to do about it.

Amazingly, his sensory issues do not affect his ability to remember what he hears or reads. His timing when he sings or makes jokes has always been very good. It doesn't seem to affect learning except for the problems caused by the motor dyspraxia/dysgraphia. He says he doesn't have trouble learning anything and it seems strange to him that motor dyspraxia could be considered a learning disability when it is more of a problem in getting his body to do what he wants it to do. I think his processing speed for anything verbal has always been very fast.

I wish he could learn to tune out pain and anxiety and focus better when his sensory systems are overwhelmed. He can work around these issues at home, but what about college or later when he has a job?

It sounds like he would benefit a great deal from therapy. It sounds like he's asking for help he just doesn't know what help. Cognitive behavioral therapy is particularly helpful for anxiety and at his age he may make very rapid progress. As you said these are long term concerns and are essential for his success in college and his happiness as an adult.

Do you think therapy will work for him when it seems like bad things just keep happening to him or people he is close to and he knows that he has no control over it? He can't get rid of that feeling that something else is going to happen.

We both tried to think positive when he did the two hour physical therapy sessions three times a week, with additional exercises at home. For all this effort, he feels there was very little improvement. He still had leg and foot pain when he walked. The arches in his feet still collapsed. At least he found what didn't work and he was able to get custom made orthotics that do help a little, but he felt that therapy took up a lot of time that could have been better spent doing something something else. I think I might have trouble talking him into trying another kind of therapy.

He was trying to think positive about the doctor's appointment a few days ago, but it became very difficult for him when he was told he would have to wear a brace for scoliosis until he is an adult. This is a kid that that trouble with socks and clothing tags. He knows it will be hard, but he was able to joke about it and get through it with his sense of humor. I am so thankful for his sense of humor.

I'll be really direct. I can't understand why he is not already in therapy and I think it is a major mistake to continue in this situation.

It sounds like he struggles on a daily basis with anxiety and feelings of negativity and low self esteem. Therapy isn't a magic wand that makes everything in life blissful and perfect or fair. That isn't the point. Therapy is also not just for people with no hope. The point is that all people need to find productive and healthy ways to cope with life and to manage their emotions. This is especially true for people who are wired to be more sensitive or who have a greater share of life burdens. Failure to learn how to cope with emotions in this period of his life radically increases the risk that as an adult he will be severely depressed and not be able to live a functional life. You don't have control over what kind of feet he was born with (or whatever) but you absolutely do have control over whether or not you get him the help he needs to cope with his differences.

The fact that he/you would generalize from physical therapy not solving his problems to discounting the possibility of any type of therapy helping him would be an example of the exact kind of thinking errors that cognitive behavioral therapy seeks to identify and address.

Source?

This is one place you want might want to start. http://www.amazon.com/Optimistic-Child-Safeguard-Depression-Resilience/dp/0060977094 http://www.amazon.com/Learned-Optimism-Change-Your-Mind/dp/1400078393/ref=pd_sim_b_1
There is quite a bit of evidence that people who have untreated anxiety are more likely to end up depressed.

Setting that all aside for a minute, he's been feeling bad and mom has been feeling bad for years. I can't imagine any good argument for a kid who is going through so much not getting help to develop better coping skills.

He isn't depressed. He usually bounces back to normal where he sees humor in life events rather than tragedy.

Most of his anxiety now has to do with wondering how he will deal with the pain and discomfort when he starts wearing the brace, but he is trying to deal with it by looking for solutions. He wants to learn more about Shaolin monks and their pain management techniques.

He convinced me to let him try Lumosity so that he can work on improving his speed and learn to tune out the pain and discomfort that sometimes distracts him and causes fatigue. I was surprised to see that he chose to work on brain training exercises for ADHD when he was not diagnosed with ADHD. He thinks pain and anxiety are causing him to have some problems focusing sometimes. He thinks Lumosity is helping him and it tracks his progress, unlike the physical therapy that cost a lot in time and money with very little improvement to show for it. He thinks what we are doing at home and at theater class, which includes dance, works better for him him than picking up marbles with his toes in a room full of older adults and high school cheerleaders and football players with injuries. I don't think the physical therapists had any experience working with a bright kid with motor dyspraxia. He did enjoy talking with them. A retired teacher who heard them talking asked him his age and told him he was really smart. People tell him that all the time and I think this helps him avoid self esteem issues. He does not feel that bad about being verbally gifted in a family where all his cousins seem physically gifted and not interested in the things he is interested in. He just doesn't have anything in common with them. He sees that his highly gifted half-brother, who has no physical issues, doesn't do sports either and spends a lot of his free time on the computer doing things that he enjoys.

Instead of being upset and embarrassed by his new dance partner's comments when he couldn't lift her (she was bigger than his last dance partner) he imagined her reaction if he had told her why he wouldn't do it in front of her friends who were watching them. He knows from his sister how sensitive girls are about their weight and he wouldn't dream of saying something that would hurt her feelings.

He copes by imagining humorous scenarios with things he could say but won't because he is a really nice kid. I think he copes with most things better than a lot of people. We just had a lot of bad things happen in a short amount of time and he lost a little of his bounce.

As for me, I do feel bad that my child has to deal with more pain than the average kid and there is only so much I can do about it.

It is difficult as a parent dealing with a child with a disability. Chronic pain can be and often is very debilitating.I wouldn't be surprised if this also contributes to his day to day fluctuations.
I think it would be quite normal being anxious about wearing the brace and from what you say it appears he is trying to develop his own strategies to deal with it. He has obviously accepted the treatment that is required. I am no expert as far as therapy is concerned so I can't answer to that. I think one of the difficulties children face is feeling that no one understands what they are experiencing and lets face it unless we have the same disorder we don't reallyunderstand. We do the best we can. At times we get annoyed and lose our temper, which unfortunately makes us feel even more guilty, you are not alone there.

As you say thank god for his sense of humour! and I think you are right when you say he probably copes better than most, don't underestimate that. Just one question, is he able to access a forum or association related to his disorder?

Living in a state of fight and flight that is so strong as to influence a person's pain level and ability to handle day to day situations isn't normal. That isn't a way a kid should have to live. I have no doubt your son is trying very hard and that he will continue to look for solutions, to me that is all the more reason that he deserves to get some professional help. It sort of seems like in your post you are suggesting that kids who are nice or sweet never need therapy. As you suggested in your beginning post on this thread, the mind and body are deeply connected. For some more vulnerable kids this may be even more true than for others.

Just like anything else in life there are huge variations from one physical therapist to another and from one clinic to another. To say you went to one clinic and now know that physical therapy doesn't work is like saying you at at one restaurant and it wasn't good so you are never eating out again. If the therapist had no familiarity with motor dyspraxia it isn't a surprise that it wasn't a good fit.

What do you see as the downside of giving him the opportunity to talk with a therapist and get some support through getting his scoliosis cast?

Well, therein lay the question. Is it his ability to cope on a daily basis that influences his pain or vice versa?