I haven't really talked about my dear daughter here yet, because I meant for this blog to be about asperger's. But I was commenting someone else's post tonight that was partially about the sense of purpose their previously challenging son was getting from enlisting in the army and graduating from basic training, and it really touched me as I related it to my own challenging child, the eldest. When she came to us, she was already a half grown teen, and there was a lot of emotional baggage that came with her. But one set of symptoms was really apparent to me, even though I didn't have a name for it at the time: obsessive compulsive disorder. This is a very serious developmental problem that is often a symptom of aspergers and autism, but lots of other people have it too.
It's been quite a journey learning about it, and knowing now that I am the only person out of five in my house that doesn't have it. If you know anything about it, you know how difficult it can make it to accomplish just the mundane details of everyday living. I'm not going to get into a full on description of it here tonight, but I felt like my dd deserved a tribute for the very big achievement she made recently. This in the face of her very active OCD, which in her case includes crippling agoraphobia (fear to leave the house and/or go out in public), claustrophobia, extreme anxiety disorder with panic attacks, major depression, and a truly absurd condition called trichtilomania (google it if you're interested). And she did it all without benefit of an IEP! We didn't have time. But she did have 504 plan accommodations, which were far from adequate, but I doubt we'd be celebrating now without it. Here was the comment I left on the other post:
This summer I watched my daughter's graduation ceremony from high school. She has horrible agoraphobia (thus I haven't been to church recently), and she could have chosen not to participate in the ceremony if she wanted. Even so, I pretty much held her hand all the way through it until she was up on stage, and there was a school nurse stationed nearby, but I was very proud that she had made the commitment to stand up with her peers and acknowledge what for her is a profound milestone.
But the sense of purpose that you were talking about, it was the first time I had felt that so acutely for her. She had made the original decision to return to being accountable to a school authority (after we adopted her, she home schooled for several years), and even though her curriculum was delivered though cyber technology in our house, it was still a really big deal for her to have to complete state set standards, deal with deadlines set by someone else, and communicate with her teachers and other strangers in the school.
The graduation ceremony was the first time she really met some of her classmates, but there was a lot of satisfaction in watching them all rise as a group and hearing the speaker discuss the expectation of their contribution in the world. You could see on their faces how they felt like they were part of something important.
This is a school that really emphasizes leadership and community service, and it really affected her in such a positive way in terms of helping her develop an avocation for her life. I really have to give all the credit to god for leading us to this school and helping her choose to enroll, plus seeing us through all the ups and downs as she finished the program.
I had been so afraid that she might never even make it this far, and I still have a lot of days when I wonder what the best way is to try to access her potential, but this is one of those situations where I have had to really let go and let god, and try to feel his peace.
Crossroads is definitely a good way to describe our current position, but I just have to keep the faith that he will continue to guide us no matter how apprehensive I might be that our hold on something finally positive is very tenuous.
Showing posts with label OCD. Show all posts
Showing posts with label OCD. Show all posts
Saturday, August 9, 2008
Wednesday, July 23, 2008
Stumped by an eight year old
I made brief reference to an impromptu question and answer session about autism that I gave at our family vacation summer camp in my last blog; I haven't been able to stop thinking about it. I have felt SOME obligation to participate in autism awareness as a mother of two boys with aspergers/autism and a wife to an adult with aspergers as well. I am not incredibly versed in autism science, and I am in fact a poor representative in general for others suffering with a family member's autism as all three of my aspies are very high functioning. So high functioning, in fact, that we get little sympathy. I never knew until recently that my sons (and probably my husband) qualify for medical assistance, which will provide educational tools for them that we couldn't possibly afford on our own. Their pediatricians never mentioned it. They probably think that we don't really need it, things aren't that bad. I always have the suspicion that when we are out in public together, and strangers (as well as extended family) witness the atypical behavior of any of my three guys, they probably chalk it up to them being "weird" at best, or assume that I am a bad mother at worst.
That goes extra for my dd with obsessive compulsive disorder; I have gotten outright dirty looks and nasty comments in situations where I have tried to be creative in helping her grow and develop in social venues. She has a high degree of social anxiety, and she doesn't want anyone to know it. I think there is definitely an assumption that if a person "looks normal" then they must also BE typical. There are no plaster casts, protective helmuts or wheel chairs that are obvious props of disability; there are no physical feature markers like the slanted eyelids of down syndrome. Many times a person with a disability prefers to keep that knowledge to themselves anyway so as not to stand out in crowd, many times their most fervent wish is to be typical and fit in as much as possible without drawing unwanted attention to themselves, it's amazing to me how much behavior is motivated by a person's strong desire to be "normal" and "accepted."
I still wish sometimes that there was a way to "warn" people in social situations with my mother that she is schizophrenic, so that they can understand that there is a reason for some of her odd behavior without being afraid of her. But she doesn't want to acknowledge her condition, even to herself, much less tell others. So last week when she told me that no one would really talk to her at a high school reunion function, I asked her a few questions and found out at the beginning of the luncheon she told one of her old casual acquaintence school mates that there were UFOs presently hovering over the Neshaminy Mall. I feel for her loneliness, and I also feel for the poor person who must have been fearful of my mother or at least very uncomfortable after what was inappropriate "small talk" in that situation. I keep trying to gently impress upon my mother that she isn't likely to find metaphysical like minds in the seventy plus crowd in our extremely religious conservative southest PA region, and definitely not at a high school reunion. I know it falls on deaf ears, the delusions of paranoia and grandeur run so deep in my mom that my entire adult life I have come to expect that on almost any social occasion that we attend together that she will at some point corner some unsuspecting victim with tales of the upcoming apocalypse.
I want to be a better advocate for raising awareness in regards to mental/emotional disabilities. I really want to make sure my children get the tools they need to be able to be socially appropriate and function independently in general society, I would love to save them from the difficulty and pain that I have witnessed my mother and husband suffer. I have finally realized that although a lot of it is working directly with them; another piece of it is definitely helping to improve societal acceptance of diversity.
Camp really lit a fire in me. I rose to the challenge of speaking in front of an assembled crowd, mostly because I figured how difficult could it be to tell people about my boys for five minutes? Well it turned out to be a lot harder than I thought. So far, my consciouness raising has mostly been limited to one on one conversations with adults that come into contact with my children and maybe need to be aware of their differences. But the very first question I was asked as I stood up on the stage in front of maybe eighty people threw me for a loop, I was actually stuttering and sweating a little as I wracked my brain to come up with an appropriate answer for a very simple question: What is autism?
No one had ever asked me that before, and what made it especially challenging was that it came from an eight year old. I frantically searched my vocabulary data banks to try to think of a way to explain it that he could understand. I'm sorry to say that I did a pretty lousy job. But I thank god for his question, because you can bet that next time someone asks me that, I'm going to have an answer ready that a young child can understand. It's not only important for adults to become more aware, but obviously, the children of my sons present generation will be the adults in their future as well, long after their father and I are gone. In fact now I will be soliciting questions from others, so I can prepare appropriate answers for all future opportunities. One thing my children have taught me is the importance of "teachable moments," and they don't just come when it's convenient.
That goes extra for my dd with obsessive compulsive disorder; I have gotten outright dirty looks and nasty comments in situations where I have tried to be creative in helping her grow and develop in social venues. She has a high degree of social anxiety, and she doesn't want anyone to know it. I think there is definitely an assumption that if a person "looks normal" then they must also BE typical. There are no plaster casts, protective helmuts or wheel chairs that are obvious props of disability; there are no physical feature markers like the slanted eyelids of down syndrome. Many times a person with a disability prefers to keep that knowledge to themselves anyway so as not to stand out in crowd, many times their most fervent wish is to be typical and fit in as much as possible without drawing unwanted attention to themselves, it's amazing to me how much behavior is motivated by a person's strong desire to be "normal" and "accepted."
I still wish sometimes that there was a way to "warn" people in social situations with my mother that she is schizophrenic, so that they can understand that there is a reason for some of her odd behavior without being afraid of her. But she doesn't want to acknowledge her condition, even to herself, much less tell others. So last week when she told me that no one would really talk to her at a high school reunion function, I asked her a few questions and found out at the beginning of the luncheon she told one of her old casual acquaintence school mates that there were UFOs presently hovering over the Neshaminy Mall. I feel for her loneliness, and I also feel for the poor person who must have been fearful of my mother or at least very uncomfortable after what was inappropriate "small talk" in that situation. I keep trying to gently impress upon my mother that she isn't likely to find metaphysical like minds in the seventy plus crowd in our extremely religious conservative southest PA region, and definitely not at a high school reunion. I know it falls on deaf ears, the delusions of paranoia and grandeur run so deep in my mom that my entire adult life I have come to expect that on almost any social occasion that we attend together that she will at some point corner some unsuspecting victim with tales of the upcoming apocalypse.
I want to be a better advocate for raising awareness in regards to mental/emotional disabilities. I really want to make sure my children get the tools they need to be able to be socially appropriate and function independently in general society, I would love to save them from the difficulty and pain that I have witnessed my mother and husband suffer. I have finally realized that although a lot of it is working directly with them; another piece of it is definitely helping to improve societal acceptance of diversity.
Camp really lit a fire in me. I rose to the challenge of speaking in front of an assembled crowd, mostly because I figured how difficult could it be to tell people about my boys for five minutes? Well it turned out to be a lot harder than I thought. So far, my consciouness raising has mostly been limited to one on one conversations with adults that come into contact with my children and maybe need to be aware of their differences. But the very first question I was asked as I stood up on the stage in front of maybe eighty people threw me for a loop, I was actually stuttering and sweating a little as I wracked my brain to come up with an appropriate answer for a very simple question: What is autism?
No one had ever asked me that before, and what made it especially challenging was that it came from an eight year old. I frantically searched my vocabulary data banks to try to think of a way to explain it that he could understand. I'm sorry to say that I did a pretty lousy job. But I thank god for his question, because you can bet that next time someone asks me that, I'm going to have an answer ready that a young child can understand. It's not only important for adults to become more aware, but obviously, the children of my sons present generation will be the adults in their future as well, long after their father and I are gone. In fact now I will be soliciting questions from others, so I can prepare appropriate answers for all future opportunities. One thing my children have taught me is the importance of "teachable moments," and they don't just come when it's convenient.
Subscribe to:
Posts (Atom)