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7/7/08
President’s “Journey to Success” Message-
Susan Neufer, President of Autism Society of America Central California Chapter
On behalf of the Central California Chapter of the Autism Society of America (ASA) I would like to welcome you to the Journey to Success Conference. My name is Susan Neufer and I am proud to represent the Central California Chapter of ASA. Those of us who love a person on the Autism Spectrum do indeed embark on a journey of discovery, a journey of education, and a journey of hope every day. Our prayer is that it will be a “Journey to Success”! The board of our local Autism Society would like to publically thank our speakers Dr. Amanda Adams, Dr. Mark Adams, Dr. Areva Martin, and Educator Ana Bustos Ponce who have all graciously donated their time and expertise to help us along our journey. They will provide much needed information and will share valuable resources to all in attendance. We would also like to thank our Co-Sponsors Special Needs Network, Inc, Martin & Martin, LLP, The Central California Autism Center & Graduate student volunteers, and California State University Fresno for their hospitality in allowing us to present this conference in their venue and for having the foresight to bring to our valley a program that not only educates future professionals with a solid base in understanding an individual with an autism spectrum disorder, but also serves our children. My own journey began 20 years ago. My son Jeffrey is a great young man. He is a gifted artist. He has a great sense of humor, a great heart and a sweet personality. Jeffrey brings light into the lives of all who know him. Jeffrey has autism. Back in 1987 I did not understand all of the gifts Jeffrey would bring into my life…but along our journey I have befriended many parents who also have children with exceptional needs. I have befriended teachers, therapists, medical professionals, students, and business people who all want to help, who all care about my child and other children like him. One person stands out in my mind…..Mary Ann Shubin, former Central California Chapter ASA President. . Mary Ann Shubin began her journey of understanding Autism over 45 years ago. When her son Wade was diagnosed she was called a “Refrigerator mother”. MaryAnn did not allow herself to be classified as such. With her husband Walt at her side Mary Ann fought the “system” and helped to pioneer programs for all children. She served on the national board of the Autism Society of America. She lobbied for programs for children with Autism in the central valley. She was a local fixture and expert for other families guiding us through the maze of services we sought for our children. Although her son was not allowed entrance into school when he was 5, she persevered until the passage of public laws which allowed all children with special needs an education in the public school system. Mary Ann worked and served on many boards including the Area 8 board and the Regional Center board and others as a representative for children with disabilities. MaryAnn was our friend and will be dearly missed. It is the receipt of monies in her memory that allowed some of our parents here today to receive scholarships to this conference. Mary Ann your work still continues and you will always be a light in my heart and in the hearts of those whom you still continue to touch!
Boston Public, a weekly prime time television show, had an episode on Feb 4th which featured a story of a severely disabled teenage boy who was accepted by the high school as a student. The principal had reservations that the school had facilities for him but was talked into it by a young male teacher new to teaching who had a strong desire to help the boy with disabilities. It took one day to find that it was not going to work. A fire drill and a trip to the bathroom, where the boy could not function on his own, brought out the obvious. The boy had to be carried in his wheel chair up and down stairs by students who volunteered at the time of need. The boy had an IEP and these things could have been worked out and an aide given to him to help with bathroom needs and etc. His classes could have been scheduled for downstairs locations.
After the first day, the parents came to the teacher and principal and thanked them for their effort and dis-enrolled their son to enroll him into a private school who wanted him and had the program to see that he got his education. The public school system would be responsible for the tuition to the private school as they could not provide the adequate program that the IEP set forth. This is only right. But, on the TV show the teacher became upset and accused the parents and the boy of being frauds. The parents and the boy hung their heads in shame and apologized but this was not enough for the teacher who went on and on. This, after just giving one day of his time. This shows that the Hollywood types are so out in left field and live in their own world. In other words, they do not know what they are talking about. If it wasn't for the law that states that the school district has to pay for private school tuition and transportation, there would be no reason or incentive for them to even accept the boy or girl with developmental disabilities into public school.
Please read the following letter written 30 years ago. It was written after their son was not admitted into the Fresno Unified School District for kindergarten because of his label of Autism. The parents were willing to be aides or pay for an aide themselves. This was all turned down. A small private school for children with Autism opened in Clovis and they enrolled their son. This was the start of that law. There was a need for it and please parents, don't forget it. It can be taken away at any time. BE VIGILANT !!!!
TESTIMONIAL
Although our son, Galen (born 6/2/83), was not diagnosed with Asperger’s Syndrome until he turned 11, it had been clear since very early in his childhood that he was a very unique character. As an infant, he was unusually floppy (low muscle tone), but since he was the only baby I had ever held, it seemed perfectly normal to me. I also presumed his difficulty learning to cross midline (to continue focussing on an object of interest as I moved it from one side of him, past center, to the other side) was just an interesting step in his development and not a cause for concern. When he was a toddler and pre-schooler, we thought of him as extremely bright, eccentric, sensitive, creative, and very immature for his age, all of which were true. We wouldn’t have known we should go to the public school to get him speech therapy if it had not been for a speech pathologist (who was then my sister-in-law) informing us that at age 3, Galen really should be intelligible to someone besides me! Even when the school nurse at kindergarten registration mentioned him having “lots of neurological ‘soft signs’,” we remained happily oblivious, seeing no cause for concern. Sure, he was a strange little kid, but he was wonderful: perfect! After all, his father and I are pretty unusual characters ourselves. The only thing that was “wrong” with our son was that he was just like us-- only more so. His strange movements and vocalizations were simply delightful evidence of his enthusiasm and creative energy in his play. If he found that certain things (such as interruptions, certain sounds, most clothes, and “pushy”--i.e. normal-- playmates) were intolerable, such feelings were quite understandable to us as we each find some of those some things quite hard to tolerate.
Although we were oblivious to the significance of our son’s differences, a friend told us (years later, when he had finally been diagnosed) that her mother, a nurse who worked with developmentally challenged children, had described Galen (after seeing him at her granddaughter’s birthday party at age 5) as “the autistic little boy”. The friend said she had told her mom she was wrong, that the boy was her co-worker’s son, but her mother had insisted she was right. The friend had said nothing to us about it because one simply does not go up to a friendly acquaintance and tell him out of the blue, “oh, by the way, my mom says your son of whom you’re so proud is autistic!”
Galen had his share of little kid difficulties. He was kicked out of pre-school because the teacher couldn’t control him; got mercilessly teased because of his odd gestures, language, noises, and play style; had trouble with other kids in school and on the bus; struggled with gross and fine motor skills; and was kicked out of gymnastics class because of compliance/control issues (or sensitivities/frustration issues—it depends on how you look at it). He had a full-fledged phobia for about 8 months at age 4 when he was terrified to go anywhere or do anything for fear of seeing anything that was gun shaped: water pistols, a picture in a book, pop guns, a pointed finger… We always thought that with understanding, time, and gentle teaching and desensitization, he would mature to where his differences from his peers would be less dramatic and he would find his unique niche where he would function happily and comfortably, just as his parents had. After all, he was just like us.
Up until third grade, we thought this was slowly happening. In kindergarten (which he entered at age 6—we held him out a year to give him more time to mature), he was the only kid in class to be a regular visitor to the vice-principal’s office because he attacked other kids, apparently without provocation. The teacher and we came up with a “behavior mod” type reward system that successfully cured him of that. Even with the extra year before entering school, he still did not have the developmental maturity in 1st grade to hold a pencil or write and his eyes were not tracking yet (necessary for reading), but the teacher said he “kept her on her toes.” He was attentive in class (from the back of the room, a little away from the other children) as long as there was content material to learn. In contrast to his delayed acquisition of skills, he picked up factual knowledge and concepts much more rapidly, completely, and in more depth than his age mates.
At our request (I didn’t want him pushed to perform writing tasks he was simply not yet able to do), his motor skills were tested at the end of kindergarten. Across the board, he was 2 ½ to 3 years behind age expectations in motor development. He received 6 months of adaptive PE in first grade and lots of support and understanding from his teachers. By the middle of 2nd grade, his eyes were finally tracking, he learned to read, and he started remembering his “math facts”. Meanwhile, a slightly older child told me that the big kids (7th and 8th graders) on the bus had been having Galen do math problems on the ride home. I suggested that they were just horsing around with him and the child replied, wide eyed, that they were writing down his answers; they were having a little 1st grader do their math homework—he didn’t know the rote facts but his mathematical reasoning let him work out the answers! He hadn’t learned to read or really mastered his math facts, but the other children all had him pegged as really smart!
Anyway, to make a short story long (as I love to do!), Galen’s rapid progress in learning to read, do arithmetic, and function more comfortably in the school environment in 3rd grade made us feel we were “over the hump.” Early in 4th grade, however, it became clear that the differences between our son and the rest of humanity were increasing rather than decreasing.
He had flourished in his highly structured third grade class, but he fell apart in the less structured, open-ended kind of classroom of his 4th grade teacher. While his classmates were maturing to seek new, more complex forms of interactions, he withdrew from the increasingly incomprehensible social and communicative demands. While he had started joining some of the organized group games on the smaller, “little kid’s” playground, he found the larger, more crowded upper grade playground to be too confusing. He built an invisible wall around himself and woe to the child who tried to breach that wall, whether in friendship or to tease and be mean (because, as he later explained, he had no way to tell the difference between the two!) He had more and more problems with violent (and sometimes dangerous) outbursts, both at school and at home. As you might guess, 4th grade was the year that inspired us to start our way through the educational, insurance, and medical mazes to try to find some helpful interventions and maybe some answers to help us all cope. During Galen’s 4th grade, our new middle school (grades 6-8) also opened. This changed his school from a crowded K-8 to a spacious K-5 and made things a bit easier.
Although I believe that Galen could have been diagnosed as having an autistic spectrum disorder at a much earlier age, I’m glad we waited so long to pursue a diagnosis for three reasons: 1) even though early intervention is so important, we later found out that most of our natural responses to his differences and difficulties were the “right” things to do, 2) I think Galen’s self-image got a healthy start from his parents’ firm conviction that there was nothing “wrong” with him, that being his unique self was perfectly marvelous, and 3) had we looked for answers earlier, we would have ended up with a less satisfactory diagnosis because the DSM IV had not yet come out making the diagnosis of Asperger’s Syndrome available in this country. In fact, the neuropsychologist who tested and diagnosed Galen waited several months to write up her report so that she could get a copy of the new diagnostic manual to use the information it contained to make her diagnosis.
As of the beginning of 5th grade, he had a label. True, no one knew quite what to DO with this new label, but it was a start. We finally had it in writing from an official source. Galen was not having the troubles he had just to make everyone’s life difficult or because he, parents, or teachers weren’t trying hard enough; he really WAS different and needed different support and teaching.
We worried a lot about Galen’s transition to the middle school. His dad and I communicated extensively with the staff and, for all our trepidation (or because of it!), the transition went remarkably easily. Galen managed the different teachers in different classrooms, dressing out for PE, a combination lock, the absurdly complex schedule, and all the rest with very little trouble. In middle school for the first (and only) time in his school career, he got one-on-one special education help (RSP) with writing assignments, a big load off Mom’s back. We were very frustrated with the school’s lack of predictability and structure, but its very unpredictability became predictable and Galen became much more flexible and tolerant of change. He learned that it was okay to be confused, that everyone was confused, and that no one (teachers included) knew what was going on! We still laugh at our crazy middle school, but both my children became more relaxed and flexible in their three year stints there.
Galen has an expressive language disorder that adds to the problems he has due to the Asperger’s. Anything that does not have just one, clearly correct answer tends to upset and confuse him. He has great difficulties organizing his thoughts into words or actions—hence an overwhelming difficulty with any kind of initiation. One of the reasons writing is so hard for him (besides the difficulty of trying to do many things at once-- manipulate the pencil, think of the words, put them in order, spell, all without losing the idea, … writing is a very complex task!) is that a correct answer (the only kind he found acceptable) was necessarily a complete answer, and Galen was demanding in the extreme as to what constituted completeness. He is often unable to respond at all because he cannot allow himself imprecise, to him imperfect, i.e. WRONG, words.
In 6th grade, there was one teacher who took our son under her wing and made clear to the kids by her words and actions that SHE thought highly of him. The effect on the kids was dramatic: “If Mrs. Cappas thinks so well of him, he must be okay!” He still rejected most efforts from kids to interact with him, but he was successfully befriended by one girl that year, who helped him join in some small group basketball games. He also found a niche in chess because another sensitive teacher made the game a regular part of his class when he discovered it was a way in which he could make contact with Galen. (I am quite saddened that our efforts to cultivate a chess club at the high school have met with no success.) In the summers after 7th and 8th grade, he also had a friend who played both computer and more active games with him, but to play with Galen, the other person must be able and willing to constantly take the initiative. Galen is a willing follower but he cannot lead.
Galen, unlike many clearly visual thinking autistics, often has problems with visual thinking. Like many with his diagnosis (in contrast with those diagnosed with high functioning autism), his verbal IQ is significantly superior (40 point difference) to his performance IQ. He gets frustrated rapidly with puzzles and is not very good at reading maps. He has gone through stages where he has liked to draw extensive tunnel systems populated by imaginary creatures (which he happily told me about in considerable detail, whether I listened or not), and he continued extending the picture for several years by simply gluing on more papers as he ran out of space.
Galen has a very average memory for isolated facts (unless he is directed to really work on memorizing something, in which case it is fairly good), names, dates, and physical attributes (particularly if he has just seen them rather than having them described in words to him). He finds of these to be without importance, meaning, or interest. Things that “make sense” are quite another matter! He cannot remember what something looks like, but can recall in detail all the functional aspects of that thing, all the different parts that have specific purpose, and what those purposes are. He has always had great interest in and excellent memory for stories, scientific and mathematical concepts, and anything that relates to an understandable whole. His love for stories was such that I called them “anesthesia” and used them to get him to stay still while I scraped the plaque off his teeth or to keep him walking on long hikes. From the time he was about 3, he would keep hiking as long as I could keep expanding on whatever story I was spinning!
Galen is never happier than when he is playing games of fantasy/imagination with his sister (2 ½ years his junior, often his only friend, and having many autistic traits, but having compensatory abilities that allow her to better pass as “normal”). They have a number of game settings that they habitually use, each with certain regularly appearing characters and others that make less predictable appearances (like in a TV series), occasionally discarding one of the old settings or adding a new one. Their games are heavily influenced by fantasy novels and a bit of science fiction, and even though now well into their teens, they still include little plastic toys and stuffed animals as props. These games used to continue for days (with the required eating and sleeping breaks). They now often last months, being played for hours at a time daily, or ignored for a week or more and then resumed where they left off (which our daughter relies upon Galen to remember, which he does, of course). Galen used to become very upset if his sister got tired of what they were doing and that was the most likely cause for them to fight, but now he is calm and not bothered when she calls for a break.
Galen is almost incapable of initiating, so the brunt of getting a game going falls on his sister, a fact she has sometimes resented. While she resents having to be the leader all the time, she also appreciates and enjoys having such a willing, cooperative, eager-to-accept-her-ideas-and-desires playmate. She enjoys the complete power and control she has over when, where, what, and whether they play, knowing that if she invites him, he will always play with her and will not quit until she decides to call for a break. My daughter invents the situations in their games, brings new characters and events into it, and Galen has the characters he controls (his “movers”) react to the situations and to other characters. Although all kinds of situations are represented in their play, Heather noted that Galen’s “movers” never have any emotion (other than confusion) attached to their behavior. Galen’s thoughtful response at about age 13: “I don’t understand emotions. That’s why my movers don’t have any.”
At the present time (8/2000), Galen goes to public high school as an 11th grader with one period of RSP support and weekly speech therapy (regained last year). He does well in science and math classes, needs considerable support in classes that require any expressive language (Mom’s job again), participates in a summer swim league, attends a weekly Aikido class, needs help with organizational planning, and has been on an emotionally pretty even keel for the past several years. Unlike many A.S. individuals with “active but odd” social styles, Galen ranges from aloof/withdrawn (with those he does not know well) to passive (with those who are close to him) socially, which helps insulate him from some of the social rejection issues so painful to others; if one makes no social overtures, one has little opportunity to be rejected.
We have tried some medications with Galen over the years. NOT useful for us were: mega-vitamin therapy (B6, magnesium, and DMG), Clonidine (in response to violent outbursts when, among other things, he was routinely kicking holes in the walls), and Ritalin. Prozac, on the other hand, was very useful for him and he used it from age 13 to 16. Happily and surprisingly, when we tried weaning him from it, he maintained his progress and has not been on medication in over a year. The Prozac was prescribed to help with obsessive/compulsive symptoms, but what it actually did for him was to make him less easy to upset. With that change came less volatile behavior, greater ability to remain in social and other learning situations that would have been too frustrating for him otherwise, and thereby the chance to learn from those situations both how to cope with them and that many of them were in fact benign.
Family dynamics: I am a stay-at-home mother with a college education and plenty of mild autistic traits (“eccentricities”), both in myself and in my biological relatives. My husband is a registered nurse who has a slue of mild autistic traits. From what we know of his biological relatives (he was adopted at birth), there are plenty of “strange” and “eccentric” traits blooming in his family tree as well. Galen’s sister has experienced some very mixed feelings about her brother’s diagnosis and people’s reactions to it. Early on, she was protective, insisting “There’s nothing wrong with Galen; people just don’t know how to treat him right!” Although she has always managed him as no one else could, she has anger toward him as well. Since she struggles to cope with her own many peculiarities and sensitivities, she sometimes resents when others make allowances for him. We do not have many strong social ties (extended family, church, etc.) beyond our nuclear family. My only brother’s only child is a son a year younger than Galen who is also diagnosed with A.S.
I’ll stop rambling. Want to talk? Come to the Autism Society meetings in Fresno, at the Central Valley Regional Center, 7PM, second Tuesday of the month and say hi! Jan
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Irene Institute for Perceptual and Learning Development
5380 Village Road, Long Beach, California 90808
(562)496-2550 FAX (562)429-8699
E-Mail: Irlen Institute@irlen.com
Website: www.irlen.com
June 16, 2000
Ms. Marianne Shubin, President
Central California Chapter
Autism Society of America
P.O. Box 13213
Fresno, CA 93794
Dear Ms. Shubin:
Congratulations on creating a web site in order to serve the members of your community interested in information regarding Autism. I do not know if you are aware of the Irlen Colored Lenses which are used to reduce hyper and/or hyposensitivity to visual stimuli. It is not a method for curing autism but does reduce environmental overload which can contribute to difficulties with eye contact, light sensitivity, gross and fine motor activities, and spatial or body awareness. There is information rearding the Irlen Method on Dr. Steve Edelson’s Autism web site (www.autism.org).
I am writing to inquire whether you will be posting a list of resources on your site; and, if so, whether you would consider listing the Irlen Institute and, for further information, including our web site (www.Irlen.com).
I appreciate your consideration of this request and wish you the best. You are providing a much needed service to the public and professional community.
I look forward to hearing from you.
Sincerely,
Helen L. Irlen, M.A., M.F.C.C.
Executive Director
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