I think for one 24 hour period, I'd like to know what it's like to be the mother of "normal" 4th grader. I normally hate that term, and avoid it's use, but given my frustration level at this moment, it's probably pretty accurate. Now I know that life isn't perfect for anyone. As a friend in college was so often heard saying "We all have our crosses to bear." I know that people out there in the "normal" world also experience their frustrations, but just for one whole day, I'd like to experience a day without the following:
1. That upon summoning the child out of bed, I won't get growled at or yelled at.
2. That I wouldn't have to hear "I don't want to go to school" several times before 6AM.
3. That conversations between Tom and I over coffee would not be interrupted.
4. That there would be no complaints about chunks in the breakfast yogurt.
5. That no prompting to get dressed would be needed.
6. That all materials for the school backpack, coats and shoes would not have to collected by me first.
7. That I would not have to worry all day about how things are going in school.
8. That I would not have to get an email at 2PM from the teacher about Sam's bad day.
9. That I would not have to worry about how to handle the situation in school, knowing I should somehow address it, but having no idea what kind of thing would even make a difference.
10. That I wouldn't feel as if I am re-inventing the parenting wheel each and every day.
11. That I could count on the fact that all coats, shoes, backpacks, etc would be put away when arriving home from school.
12. That I would not have to hear in excrutiating detail every nuance of every Thomas the tank engine story.
13. That an idea I have about an activity to do would not be met with negativity.
14. That I would not have to make an entirely seperate meal from what I'm already cooking.
15. That I would not have to hear endless whining about not being able to go first playing Wii, or not winning at Wii.
16. That major anxiety attacks would not accompany bedtime (yes, the last thing had going for us seems to have fallen by the way side too!)
17. That I would not have to wonder for the millionth time if my son was ever going to be able to live as a productive adult.
18. That Sam has no friends that he has made on his own, and doesn't seem to "get" that his crappy behavior makes a negative impression on others.
Writing it all down doesn't help. This is the holiday fun I am dealing with. I hate to bitch- it makes me feel guilty, cause so many I know have it so much worse. Those dealing with disease, several mental or physical handicaps, drug abuse, alcoholism or a host of other issues. I'm sane (barely), Tom is sane (sometimes too sane) and we are dealing with HIGH functioning autism here. Days like these make me wonder what is just so "high" about it.
Showing posts with label Normal. Show all posts
Showing posts with label Normal. Show all posts
Wednesday, December 1, 2010
Monday, March 16, 2009
Toggling between two worlds
One thing I constantly struggle with in my quest to make a success of parenting a special-needs child is the challenge of indentifying where we fit into the world. Are we members of the special needs community? Are we functional enough to embrace the realm of the "normal" world? Does it even matter? Of course the simple answer to this dilemma is that we exist in both worlds to a degree.
I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".
There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.
The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?
I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.
Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.
I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".
There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.
The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?
I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.
Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.
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