Saturday, September 30, 2006

Keeping Tropical Fish- A Relaxing Hobby

When my son was very small, long before we suspected he was autistic, he had one word- "fish", not pronounced perfectly but always said with great excitement. Whenever we were visiting the pet store, we would park the shopping cart in front of the fish tanks, his face would light up and the word would come- "ish, ish" over and over again. Only a carefully planned diversion would allow us to remove him from the fish section of the store without incident. Fast forward about eighteen months into the future, and we have made our way to the Childhood Development and Rehabilitation Center of the local hospital. Gabriel has just turned three less than two weeks before, and he is suffering from a sudden emergence of anxiety. He screams as we head onto the elevator, his body wrapped around mine, his little fingers digging into the back of my neck. He won't let me put him down, and I struggle to carry him through the seemingly endless halls. Very tall and muscular, he weighs in at 48 pounds, and I am the only one who is allowed to carry him.

We finally arrive in the waiting area that is shared by the radiology department. I note the warmly dressed children, their heads free of hair, clutching comfort objects and looking frightened. It is at this precise moment, that the absudity of my own fears for my perfectly healthy, happy child is fully realized. He is not in mortal danger. Everything else seems completely inconsequential to me then, and I begin to relax. I notice then that he has also started to relax. His eyes have searched the room and are now transfixed on a large saltwater aquarium. All trace of the frightened, incosolable child I lugged into the room with my last effort are gone. Gabriel has found fish! He is visibly excited and stimming noisily. He points to one fish and then another, and then something amazing happens- he says two things he has never said before, "Hello, fish!" and "Look at the fish!" It is at this moment that my husband and I decide that we must buy our son his own aquarium.

Months pass, and we have finally settled into our new home and have not forgotten our promise to buy our son a fish tank. Years ago, as a college student, I kept tropical fish, so I feel somewhat competent and yet apprehensive at this new venture. Fish are not easy. They get sick and die- sometimes without warning. Once a tank is well established, things generally run more smoothly, but it is an unfortunate truth that there are usually many casualties in the struggle. Still, I have commited myself to this project, and I set about researching the ins and outs and ups and downs of keeping fish. I've been out of the loop for a while and assume that there is new information to be had. I am not disappointed.

After visiting just two or three websites, and being assured that keeping fish can be a very relaxing hobby, I am more uncertain than I was before I started the process. Gone are the days of the simple straightforward recommendations written by fish experts who all seemed to share a similar view of the best fish keeping strategies. - 1. put gravel in your tank 2. fill with water 3. add water conditioner 4. add fish 5. feed fish twice a day 6. do partial water changes every two weeks. This is the information age, and anyone and everyone who has ever kept fish has an opinion about the best way to do things. Some people seem to be quite concerned about fish rights- insisting that inexpensive fish should not be sacrificed to make the aquarium habitable by the more expensive variety. Fish deserve respect. They are living creatures and should not be used as expendable water conditioners. Others insist that cycling a tank with fish is the best way to establish a viable habitat, and that sacrifices must be made for the greater good. Some people claim that the ph of the water must be adapted to fit the native habitat of the fish. Others suggest that it is better to acclimate the fish to the existing water ph. Then there is the water change issue- how much and how often? Suggestions range from a 10% water change twice a week to a 25% water change once a month. Some people say that frequent water changes are crucial to maintaining high water quality while others insist that if water changes are too frequent they place undue stress on the fish and can lead to disease and even death (the very things you are trying to avoid by making water changes). Just doing a search over a small number of websites, I discovered so many contradictions as to make me regret doing any research at all, and this was all before I discovered the Tropical Fish Forums.

People love their fish, and they are passionate about them. They are always trying to find ways to improve the lives of their fish, and are very good about sharing their homegrown fish cure remedies. They have different philosophies about fish, and different beliefs about what is best for them. People who are newcomers to the world of fish keeping are bound to be confused and even a little scared, but the fact of the matter remains, that there is no one good way of doing things that seems to be right for all fish or for all keepers. Using scientifically designed testing kits can be a good way to monitor water conditions, but these kits vary in reliability, and there doesn't seem to be any good substitute for vigilance- always being aware of changes in your fish's appearance and behavior that might indicate a problem. The bottom line seems to be getting to know your child- I mean your fish- and trying to do what is right for them, sometimes even in spite of advice from other well-intentioned keepers from experts in the field. This is not and easy job, but none of the best things and life usually are.

Wednesday, September 20, 2006

Is the Autistic Mind Unhealthy
This topic came up on a forum that I frequent, and I felt the need to address it further here, because it is something that I feel is at the heart of the debate regarding the nature of autism.I think that the autistic mind (I am speaking in vast generalizations here) may be ill-suited for modern western society in many ways, but I would also argue that many of us have minds that are ill suited to modern society, myself included. While I have had many problems as a result of my kind of mind, I do not consider it unhealthy, anymore than I consider my brother's mind unhealthy or my husband's or my mother's minds unhealthy. All of us have struggles, and without support many of of us would not survive in this world. There are people who are successful in some aspects of life- rising to the top of their chosen professions while completely failing at maintaining any meaningful personal relationships and others where the reverse is true. Many people turn to drugs or alcohol to deal with their problems while others turn to eating disorders or plastic surgery or opt for a life of crime. Some people seem to achieve a balance between career and family but pile up mountains of debt and always struggle financially. I could go on forever, but my point is that all of us struggle in life- some of us more than others and just because we have the right test scores, the right grades, belong to the right clubs, attend the right schools, make the right kinds of friends and even have the right kind of upbringing does not ensure that we will be happy in our lives or with ourselves. All of us rely upon others to help us through, and I don't expect that my son will be any different in that respect. He may need many of the same kinds of help that his father does and that I do. He may need different kinds of help, but is that such a terrible thing? I will not shed a tear for my son if he has joy(in whichever way he defines it) in his heart and nothing else. I will bleed for him if he has everything else in this world but joy. I don't think fitting into society is in any way, shape or form a ticket to happiness. I think that society itself is unhealthy, full of truly unhealthy individuals leading truly unhealthy existences. The vast majority of these people are not autistic.

It is my greatest wish that I will someday truly understand my son, understand what he needs, what I should aim to give to him if I am able. This is the knowledge that I desire above all else, and that I think most parents must also desire. We feel as if we are traveling in the darkness, sometimes walking long distances without stumbling, other times tripping over obstacles and bumping into walls, and we are constantly searching for someone to guide us, someone whose vision is better than our own. Perhaps our children also feel this way, forced into walking a path that is foreign to them, that requires great effort to navigate, and that will always be fraught with dangers and filled with stumbling blocks. Our children are brave, braver than we are most of the time. They must stretch their minds to accommodate us and our way of life, to communicate with us on our terms, whereas we are like the stubborn Americans who by virtue of the dominance of the English language feel no obligation to learn another-even when traveling to foreign countries. Is this arrogance, or ignorance or both? No doubt- our kids need to learn to communicate, but why do we insist that ours must be the only language?

Thursday, September 07, 2006

When "Yes" Means "No"- How Do We Bridge the Communication Gap?
My mother used to have an old poster with a perplexed looking chimpanzee scratching his head proclaiming, "The more I think the more confused I get". Lately, Gabriel has been verbalizing more, but somehow I am understanding less. This is probably the way he has always felt about these peculiar talking creatures inhabiting his world. I think I am understanding how disconcerting this must be for him, as I am beginning to feel some of it myself. For example,he seemed to have a definite grasp on the word "no" yielding it freely and with great certainty for over a year now. When he said no, we knew he was not interested in whatever we were offering him or demanding of him. However, in our attempts to cajole him into doing things that we wanted him to do, we have been reacted to his "no's" with our own "yes's"- failing to take into consideration his tendency for echolalia. Well, now we have a little "yes" man on our hands -only he doesn't actually mean "yes" when he says it. You know, having the sense of humor that I do, I can't help but dissolve into fits of laughter at a tantruming child shouting "Yes" at the top of his lungs. Still, there is the analytical side of me that, once I have picked myself off of the floor, rises in wonder at the process involved in turning a "no" into a "yes" or the other way round.
My son has an amazing brain, but I have only glimpses into it's inner workings. In the mornings, I am greeted by papers covered with random letters, numbers, words and math equations. all written in the practiced script of a three year old who has been writing for fully one fifth of his little life. The morning after my little sister (a vegetarian) arrived from steamy Florida, my son had scrawled the message "Stop Meat"(purely coincidence I'm sure, but the kid has a sense of timing) across the bottom of a Neighborhood Watch flyer. We have words that cover the household bills that were carelessly left on top of the desk; math equations adorn the bathtub walls, any piece of paper, every piece of paper that is accessible to him has been used and used thoroughly. My son is a great conservator of space, adapting the size of his text as less and less unused area remains. He loves written letters and words, revels in them, their images seemingly burned into his little brain. If I were to write a list of nonsense words, I have no doubt he could accurately reproduce them though I would, only moments later, undoubtedly forget what I had written. Effortless is this to him, as effortless as breathing, as effortless as speaking me.
I speak without a great effort beyond the occasional grasping of words that has grown more commonplace with age. Speech for me and for most of us was not taught but absorbed, improved and enhanced with time, practice, and brain development. Words were heard, understood, reproduced without much concerted effort until later years when vocabulary worksheets replaced long conversations and workbooks tailored to precisely fabricated stories replaced the enchanting children's books that had been my staple as a preschooler. Somehow, in school, language changed from something that was naturally and eagerly acquired into something that was only painstakingly undertaken, lifeless and dismally uninteresting. Learning language systematically had a deadening effect for me- but what of a child who does not learn speech so readily? Is systematic teaching truly the best way to make up for this communication gap?
Many parents swear by the one or more of the alphabet soup of therapy programs designed to teach autistic children how to speak. Perhaps, the results for their children have truly been as remarkable as they claim, and I would be lying if I said that the sense of self doubt that I feel regarding almost every decison does not gnaw at the back of my brain when I hear these stories passionately retold by parents in chat rooms and forums, in magazine articles, and in books. I think about the fact that my son is in the target age group where such aggressive approaches are said to make the greatest difference, and you know, it may be a failing of mine, but the thing that keeps resurfacing in my mind is that my son might make great "progress" with such intensive work, but what of his happiness, his joy and excitement, his trust in me? Am I crazy to sacrifice a possible jumpstart in language development for the desire to maintain his emotional security? I don't know, but I know I don't want a child who has learned to speak by rote at the cost of something far dearer to him and to me. What, then, is the alternative? Do I let him continue to say "yes" when he means "no" and hope that he'll eventually learn the difference. That's one option, but probably not the best considering the fact that such words are so rudimentary to language. So, I've made a game out of it- made him laugh at his mother's exaggerated voice and gestures, and we've both delighted at the shared silliness- no tears or struggles, just a mom trying to help her son in a way that is right for him- right for us both. Certainly not the only way, and probably not even the best way, but at least this way my son gets to keep his smile...

Sunday, September 03, 2006

I've spent the majority of my life caring for children in one setting or another and considered myself adequately prepared to raise my own children. When that day finally arrived, unplanned for as so many of the best things and life are, I was overcome with the intense feeling of love, responsibility, and the desire to protect my children at all costs. Like most parents, I have struggled with the choices that I have made for my kids. I'm not sure if a day ever goes by when I don't question one decision or another. This is particularly true when it comes to my son, Gabriel. He is autistic, you see, and so all of the experiences I have had in the past, those memories of my own childhood that I might draw from, may not be relevant anymore. What does he need? What does he want? What will make his life better, his future brighter? I struggle with these questions, as I think many parents of special needs kids do, because I'm not sure of the answers just yet. So.. rightly or wrongly I've decided to look at him as an individual, as a child who has some amazing strengths as well as some weaknesses. I have decided to accept him for the person that he is rather than try to mold him into the person that society says he should be. I have given him the space to learn and to grow without the constant pressure to conform. I have decided not to put his life into the hands of "trained professionals" but to trust in my own instincts as his mother to always try to do the things that are best for him at any given time. I am looking inward as well as outward for the answers to my questions, hoping to find stories of inspiration from others who have walked my path as well as walked the path that is laid before my son. I wish to help Gabriel understand the world, but, perhaps more importantly, I wish to help the world understand Gabriel. A lot of important work is currently being done by a lot of passionate autism acceptance advocates, and while I may not have the ability to contribute to this effort in any meaningful way right now, I would at least like to share my story, and the story of my beautiful child.