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Explaining Pervasive Developmental Disorder (PDD) to the Typical World - Guilt Trip
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<blockquote data-quote="WearyWoman" data-source="post: 383737"><p>Daisy - Our church is a very large church (over 1,100 members and typically several hundred come to any given service). The building itself is very old, large, and traditional. We have only lived in this area for a few years and do not know a lot of people. I understand that our coordinator's job is to promote attendance and participation. My problem is with how she's going about doing this. I don't find her approach positive or understanding. Contrary to what her actions seem to imply, we really do have a scheduling conflict this week. But I somehow feel shamed for making a decision to not try to squeeze this one more stressful thing in the night before I leave town for my exam. </p><p> </p><p>I would be thrilled to "let" my son do a reading in church. The fact is, his initial reaction to new things is ALWAYS negative. It takes a lot of time and practice, patience, support, encouragement, help, and love for him to do even things most kids would consider fun, such as baseball and swimming. He hid under lawn chairs for the first two baseball practices this year, and he refused to go in the pool at all for swimming lessons. He loves both activities, but it takes careful positive experiences for him to really get to the point of participating and enjoying these things. He'd rather stay indoors all day playing with his own things. And it would certainly be easier on us to let him do just that for the rest of his life. But we have tried very hard to get him involved and to have positive social experiences. Most people would be shocked to know the extreme effort to just be able to go to a restaurant or grocery store without a meltdown. </p><p> </p><p>In church on Sundays, he sometimes covers his head if he's feeling shy, or he'll stand up by the pew and do squats over and over to get rid of his nervous energy. If candles are burning, the smell is overpowering to him, and we may have to leave if he becomes too agitated. You make a great point about the fear of public speaking being human nature (I have it myself), but my Bubby's fears and apprehension, resistance to change, sensory sensitivities, social and behavioral development go far beyond this. I know for sure that kids with autism spectrum disorders have very different experiences and perceptions of the world. Often, they're much more sensitive.</p><p> </p><p>Realistically, for my son to be able to do something like this, we'd need to practice in a sensory friendly environment for a lot of time and with gradual exposure to additional people, sounds, etc. I don't think putting him in this new situation that would certainly be fear-provoking for him, without the necessary support is a good idea. As parents, we all know our children better than anyone else. Our experience and intuition guide us to make decisions we think are right for our kids. A negative experience can be just as powerful in a bad way as any positive experience. And, recklessly forcing Bubby to do something like this without proper preparation could be a disaster. In fact, he often gets physically aggressive and mean when he feels overwhelmed or pressured. This is another reason why I wouldn't go to this service without my husband there to help. I can no longer physically manage him during his meltdowns.</p><p> </p><p>I wonder if there is a lack of understanding about autism spectrum disorders or if people are just uncomfortable with them. In my experience parenting a child on the spectrum is nothing at all like parenting a typical child. It affects every aspect of our lives, from the moment we get up in the morning, until the moment we go to bed at night, when we're at home, or when we're away. It's not something that can be put on the shelf for a while when someone else requires it. </p><p> </p><p>I accept that my son has an autism spectrum disorder, but I also accept the responsibility to help him reach his full potential in life. I wish others could be more accepting too.</p></blockquote><p></p>
[QUOTE="WearyWoman, post: 383737"] Daisy - Our church is a very large church (over 1,100 members and typically several hundred come to any given service). The building itself is very old, large, and traditional. We have only lived in this area for a few years and do not know a lot of people. I understand that our coordinator's job is to promote attendance and participation. My problem is with how she's going about doing this. I don't find her approach positive or understanding. Contrary to what her actions seem to imply, we really do have a scheduling conflict this week. But I somehow feel shamed for making a decision to not try to squeeze this one more stressful thing in the night before I leave town for my exam. I would be thrilled to "let" my son do a reading in church. The fact is, his initial reaction to new things is ALWAYS negative. It takes a lot of time and practice, patience, support, encouragement, help, and love for him to do even things most kids would consider fun, such as baseball and swimming. He hid under lawn chairs for the first two baseball practices this year, and he refused to go in the pool at all for swimming lessons. He loves both activities, but it takes careful positive experiences for him to really get to the point of participating and enjoying these things. He'd rather stay indoors all day playing with his own things. And it would certainly be easier on us to let him do just that for the rest of his life. But we have tried very hard to get him involved and to have positive social experiences. Most people would be shocked to know the extreme effort to just be able to go to a restaurant or grocery store without a meltdown. In church on Sundays, he sometimes covers his head if he's feeling shy, or he'll stand up by the pew and do squats over and over to get rid of his nervous energy. If candles are burning, the smell is overpowering to him, and we may have to leave if he becomes too agitated. You make a great point about the fear of public speaking being human nature (I have it myself), but my Bubby's fears and apprehension, resistance to change, sensory sensitivities, social and behavioral development go far beyond this. I know for sure that kids with autism spectrum disorders have very different experiences and perceptions of the world. Often, they're much more sensitive. Realistically, for my son to be able to do something like this, we'd need to practice in a sensory friendly environment for a lot of time and with gradual exposure to additional people, sounds, etc. I don't think putting him in this new situation that would certainly be fear-provoking for him, without the necessary support is a good idea. As parents, we all know our children better than anyone else. Our experience and intuition guide us to make decisions we think are right for our kids. A negative experience can be just as powerful in a bad way as any positive experience. And, recklessly forcing Bubby to do something like this without proper preparation could be a disaster. In fact, he often gets physically aggressive and mean when he feels overwhelmed or pressured. This is another reason why I wouldn't go to this service without my husband there to help. I can no longer physically manage him during his meltdowns. I wonder if there is a lack of understanding about autism spectrum disorders or if people are just uncomfortable with them. In my experience parenting a child on the spectrum is nothing at all like parenting a typical child. It affects every aspect of our lives, from the moment we get up in the morning, until the moment we go to bed at night, when we're at home, or when we're away. It's not something that can be put on the shelf for a while when someone else requires it. I accept that my son has an autism spectrum disorder, but I also accept the responsibility to help him reach his full potential in life. I wish others could be more accepting too. [/QUOTE]
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