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News- Page 12
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Personal Stories : Autism - A Murky Business
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Posted by Sylvia on Wednesday, November 19, 2003 (09:17:44)
written by Diane Bayer
Hello. My name is Diane Bayer and I am a Mom. I have two boys.
My youngest, Jacob, has Autism. I never thought I would be introducing myself someday in this way. There was a time when I could not bring myself to even allow that word to enter my consciousness as an explanation of what I was seeing in my child. It has been three years since my son's diagnosis and I am just beginning to enter the realm of acceptance. What a long and strange trip it has been!
Robert has asked me to write about our family's experience of loving a child who has Autism. Our paths crossed on the Internet when he read a post of mine, which was forwarded to him, about my personal reactions to his documentaries. These films touched me in such a profound and deep way that I had to express what I felt about them in words. I have viewed them all several times now and each and every time I have this emotional response. They are genuine and courageous and I can't get through them without a box of tissues nearby.
Our family's struggles, and feelings, and truths seem to be mirrored in this family's story. I wasn't just watching…I felt like I was "with" them and re-living some of the same experiences. Even Jack looks like a twin to my son, Jacob. It was truly cathartic for me to watch these films. I knew I was not alone and that is worth a lot.
Since my son's diagnosis I have been writing…a lot. I couldn't stop it if I tried. This is my way to deal with my pain. Everyone has ways of coping.
I think Robert uses his films to deal with what he has gone through, but also to give back. And that is what I wish to do now. I'm hoping to transform our emotional struggle into a gift for others. There is a great power in words to mend and to repair. Words help us to connect to others. Words empower us and they give us the strength to go on. Our experience is not unique.
Many children will be diagnosed with Autism, many more than had been in the past. Yet, parents and caregivers faced with the impact of Autism on their child's life and on the life of the family, may think that they are all alone. My primary gift to those dealing with similar struggles is to tell you through words…you are not alone.
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Personal Stories : An Autistic Friendship
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Posted by Sylvia on Tuesday, November 18, 2003 (10:55:34)
written by Dinah Murray BA MA PhD
Dinah Murray's interest in autism goes back to 1990. By now she has spent lots of time with people of all ages on the autistic spectrum, for much of the last four years working as a full-time support worker for adults in community care.
She is a school governor at Harborough School for children from 3 to 19 on the autistic spectrum, and a tutor for Birmingham University's distance learning course in autism. Murray has a BA in Linguistics and Anthropology, an MA in Philosophy, and a PhD in Psycholinguistics.
The Background
About five years ago, I came to autism as a linguist with a developed account of the role of language in thinking, and a notion that my account of the ordinary workings of minds might be useful for understanding the dysfunction of autism.
Since then, I have been trying to find out if I might be right,' partly by getting to know some children with autism, one in particular - Ferenc Virag, now sixteen - quite well. I have got to know him on the basis of friendship, as the head of his special school, Bert Furze, requested.
When Bert urged me to befriend one of his pupils it suited my own intentions very well - though I wasn't at-all sure how to go about it. Not being an experimental psychologist, I wanted to be able to observe a person with autism behaving naturally, including observing how they related to my non-intervening presence. In its own way, it has been an experiment.
Happily I found someone whose interests I share in Ferenc. We both like nature, light, refraction and reflection, find beauty in them. We both like controlling material: making things, melting things, making sparks fly; we both relish the potential of computer graphics. When he is frustrated Ferenc sometimes injures himself quite badly, biting his thumb till it bleeds, gashing his forehead, etc.
He files his teeth, eats insects, and tests batteries with his tongue. He is an elective bilingual mute, recently assessed as understanding up to four-word utterances. Though he will not speak he uses a wide range of Makaton signs, only some of which I understand.
Most of this paper is devoted to an anecdotal account of my relationship with him. I make no attempt to disguise his identity, because he is an artist - an animation virtuoso - and because he has given his consent to the publication of the anecdotes below.
Autistic and Non-autistic Minds: Speculations
In my view, a helpful angle on the difference between an autistic and a non-autistic mind is that while most of us have many co-active interests which are densely interconnected (See figure 1), someone with autism has great difficulty in maintaining more than one at a time". Ordinary minds can cope easily with context, and even with a context full of active and interacting people. Autistic minds are radically attention- tunnelled, or monotropic (See figure 2).
Events inside their attention tunnels may cause overload, events outside their attention tunnels will tend not to be integrated. Isolated areas of interest cannot supply sufficient inter-interest connection for the normal digestion-like process of spreading cognitive effects to occur'"
So, if something diverts attention from one of those deep attention tunnels, its effect will be abrupt, and it may provoke an extreme or shocked reaction. In ordinary social intercourse, we constantly use speech to seize attention and invade each other's minds.
For a rigidly monotropic1 ie. autistic, person on the receiving end of such speech, it will function as challenging behaviour, in being both attention-seeking and extremely hard to handle. ("Shared attention" is a complex concept, which would bear more detailed examination than is appropriate here.)
Unlike typical infants, those with autism cannot easily develop those richly connected systems of interests which make for resilience in the face of diversity. Change tends to bewilder and alarm them. While we rapidly build fuzzy networks of networks of networks, a monotropic individual will take as long to develop any interconnections at-all between interests - though interest-internal connections may become indefinitely complex in some cases.
All their interests will be strongly modular or enclosed lv- In particular, having an isolated lexicon or word pool deprives them of a major integrating force: word-relations normally spanthe whole range of interests, and impose a degree of immutable structure on it.
Autistic drive for coherence, as strong as any, is thus confined to a local rather than central sphere of operation". Some monotropic individuals may be capable of embracing topics which are broad-ranging as well as involving a mass of detailed knowledge, so long as there is a strong enough boundary condition on the topic. In such a case, they may have a superior grasp of the whole of it than a typical person does.
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Personal Stories : Coping with special needs in your autistic child
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Posted by Sylvia on Sunday, November 16, 2003 (13:27:10)
by Caroline Mackworth-Praed, mother
I have a son with Autism, and if you are reading this, then you probably know a child with this, too. In my area of Britain, one male child in 69 has Autism. Of course, girls can also have Asperger's Sydrome which is similar, although usually has little speech delay. This is what my daughter has. This article looks back on the challenges, difficulties and joys faced in bringing up my little family.
Discovering your child has autism
I run a telephone helpline, and I have spoken to hundreds of parents (and other family members) who wonder if - or have just been told that - their child has autism. I am myself married to a man with Aspergers Syndrome, and I have two children who are also on the autistic 'landscape'.
When my son was nine months old, he was just beginning to walk, he had several understandable words - Mummy, Daddy, his sister's name, and 'Lady', the name of the cat, as well as 'cat' and 'meow' (the three last were interchangeable!). As he passed his first birthday we began to become concerned that all was not well. Gradually he lost all the words he had, and became anxious, often tearful. We worried that he was losing his hearing, and that he was regressing to babyhood.
I took him to the eighteen month check-up to ask if he was deaf. He seemed not to hear his name - even when I shouted it in an endless game of 'catch me if you can'. And yet... he could hear a sweet being unwrapped at 50 paces, and was pitch- and speed-perfect in his favourite video theme tunes.
In this way autism differs from many other special needs. Typically, you think you have a 'normal' child, one who has passed all of the developmental milestones (though I do know families where the autism was apparent from the very earliest days). But by the time your child reaches the first, second, or third birthday, that child has been stolen away from you. It happens so gradually that at first you barely notice, until in his place you have a stranger.
I say 'his', because boys are perhaps three times more likely to be autistic than girls. Nobody is certain why that should be. In our area of the country, the paediatrician has counted the number of children severe enough to be brought to her attention. It is one male child in every 69. And one child in every 139 if you add in the girls. I suspect you would find yet others, undiagnosed.
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Personal Stories : Family of three...
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Posted by Sylvia on Thursday, November 13, 2003 (18:29:30)
This story comes from ADD Contact
We have three children, two boys and one girl, all three have a disorder associated with ADD/ADHD. This led me to run a group here in Weston-super-Mare, England, to try and help to inform people, by giving them access to all the information and personal experiences we had.
The youngest boy has been diagnosed with ADHD and takes Methylphenidate. We, personally find this has made a tremendous difference, he is able to concentrate better and in turn this has helped with his outbursts as he is now able to learn what is acceptable and unacceptable behaviour.
Our Daughter had a very late diagnoses of ADHD and ODD and is now also on Methylphenidate, but as she is not in a school situation it is difficult to monitor how well it is working for her. She still argues the fact that she has these problems, but then when you get to nearly 15 with all she has been through I guess you would too!
All three have Dyslexia, and one has Dyspraxia too. This is actually how it works out:
Oldest (boy) - ADD, mild dyslexia (but now eighteen so classed as an adult!)
Middle (girl) - ADHD, ODD very severe Dyslexia, so severe she needs to wear special colorimeter glasses (pink and trendy!!!), and severe Dyspraxia
Our Daughter went to a school for Dyslexics after she had been expelled from 2 secondary schools. It took many years (she was nearly 13) before we could get the LEA to listen to us. Thanks to a very helpful and dedicated Consultant we managed to get her into the school where she received speech and language therapy, after having the difficulties recognised as possibly the core problems for her.
At Prizegiving (in July 2000) she took the trophy for most improved reading and spelling in their first year, she had improved 46 months in 6 months! Proving the correct schooling can make a tremendous difference. She also got a prize in Geography for the summer term, and this has helped to boost her self esteem no end.
She moved up to the senior part of the school in September 2000. Unfortunately she did not cope as well there as she did in the junior part, but they are took great pains to settle her in. Her language difficulty is even more complex than was first thought. She wants to go on to college and study to work in the caring profession in some way, either with children, animals or the elderly.
She had even decided to do art for one of her GCSE options, something we never thought she would do as she lacked the confidence to even try. Her major problem at present is that she cannot take in what is written down in an exam, any other time she has little problem reading, but in an exam situation she just freezes and gets very frustrated. Her Art exam she started all over again half way through as she just 'lost it'.
Unfortunately in December 2001, a joint decision was made by the LEA, school, and us to remove her as she had progressed academically, but behaviourally she was going backwards again (after making a great improvement at the start). By the time she left in December 2001 she had improved academically 96 Months in just 18 months.
She is now still home two terms later and has been getting 5 hours home tuition since the end of February, her Speech and Language difficulties have nt been addressed at all and as the summer term draws to a close we have no idea how she is going to be educated next academic year. She is getting very depressed and resentful that all the promises made by the LEA have not happened.
She managed to get into the Inclusion Support Service for the last three weeks and she really enjoyed that, being with other children and learning in small groups, but that has now finished for the summer holidays, so we are just going to have to wait and see, as she would still like to take some GCSE's.
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Personal Stories : One Family's Successful Day Program
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Posted by Sylvia on Thursday, November 13, 2003 (16:08:50)
by Glenn Vatter
Billy is now 17 and does not go to school any more. That all fell apart about a year ago due to changes in his class and at home. It became apparent to us and to some knowledgeable professionals that going to school held nothing but frustration for Billy and it was time to move on.
We now have a wonderful young man, Mike, who takes Billy out every day to volunteer job sites set up by Dottie. They also do recreation activities and eating out. We have arranged for this to be a full time job for Mike, 40 or so hours per week. For part of his pay, we arranged for the school district to hire him as a full time teachers assistant on salary with benefits. Mike and Billy do all of the community work without ever setting foot in the school.
It comes under the aegis of a transition program, although we really have zoomed right through a normal transition program and he is functioning as an adult in this regard. It was a long and tempestous struggle with the district to get this set up. They could not comprehend our desire to do this. Normally, parents are after the district to provide all sorts of extra services by the special ed staff. We just wanted the funding and leave us alone to run the program ourselves.
Given the unique circumstances with Billy, our program has been lauded by those professionals familiar with autism. The district has no knowledge of autism and was unwilling to learn about it. The struggle ended when I reported the district to the state and federal education commisioners for violations of the education laws. In their zeal to thwart our program the district broke a number of laws.
For non-school days, and for extra hours on school days, Mike is paid through the Medicaid Home and Community Based waiver. He is so wonderful with Billy. Mike's father died a few years back and left Mike and his mom to care for his older brother who is retarded. Mike really knows the ropes and is very compassionate and understanding.
We are now looking into Billy's future regarding a living arrangement. Our plan is to buy him a house, perhaps in concert with another family or two. We already have two great guys who are working with Billy and want to be on the staff at the new house. We will simply move his current program there. We are working with three agencies who are helping families do this.
These are all very small agencies who are nimble and creative. The larger agencies only talk, but then do not really help. Our key challenge here is financial. We have set up a very expensive one-on-one program for Billy. Staffing will be very expensive. We will get some help via the Medicaid Waiver but it will cover only a portion of the needs. Normally, in group home arrangements, there are perhaps two persons watching over five or six disabled persons.
There will be one or two persons taking a whole van load of people out to a supported workshop or day center where maybe twenty disabled persons are under the care of five hired providers. Also, if and when we get a house for Billy, it will be outside our school district and we will lose that support. We live in a rural area and want to have Billy more into a suburban setting.
So, faced with the expense of doing a home the way we want to set it up, we are beginning to think more in terms of keeping him here at home a while longer, at least until 21. I have drawn up some plans for house modifications so Billy will have his own little part of the house and when Mike comes to get him in the morning we won't be in the way. It will be like Mike is picking him up from his own place, but we are in the same building if needed.
On a more personal note, I have established an information center for the dual diagnosis of Down syndrome and autism and have a packet of information on the subject which I mail to anyone in need of this information. I also have established a national parent support group for parents of children with the dual diagnosis.
One of our mom's has also recently started a list-serv for parents of the dual diagnosis so they can chat. I have written a number of articles and essays on this subject and have participated in a professional study group on autism, read many books, and so forth.
This article comes from Autism Community
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