Which School?

Questions your Asperger child will want you to ask

		This is an excerpt from the book "Which School?". Some headings are intentionally left blank. If you would like to see more please contact me. Introduction The term Autism Spectrum Disorders (ASD) is now widely used to define all manifestations from Classic Kanner’s Autism, through to Asperger’s Syndrome. Diagnosis can occur at any age from infancy through to adulthood and the variations in presentation are diverse. This booklet has been written as a guide only. We wanted to share information that we would have found useful when we were searching for the appropriate school for our sons and daughters. Not all the information in this booklet will suit every family. We live in different environments with many factors affecting our daily lives. Give consideration to your family’s particular needs and be selective with regard to the steps that you consider are necessary to take when choosing a school. When choosing a school it is important to remember that it is not the particular school your child attends, but that the specific needs of your child are being met in that setting. Ultimately the most crucial factor is that your child is participating with minimum stress. It is desirable to have a good understanding of your child’s disability. Choosing the appropriate school will be easier the more informed you are. You, as the parent know your child best, so it really does not matter whether you choose part time schooling, mainstream inclusion or a special setting. What is important is that your child participates to the best of his/her capabilities and can work towards his/her maximum potential. As you read through this booklet you will realise that by using forward planning you are actually advocating for your child. You must keep in mind that some schools, through lack of funding or other reasons, just cannot accommodate students with ASD. It is better to look elsewhere than to waste valuable time and energy trying to change the minds of educators. Don’t be hesitant to try something different, especially when all else seems to have failed. An idea that might not seem “right” may be successful with a little modification. In this booklet we have included helpful hints and reminders to assist with the decision making process. Getting Organised Have a plan Organise yourself Know what you want from a school Documentation Keep all original documents Only give copies to the school Educational Options Points to Consider when Choosing a School Your expectations Be aware of and keep in mind your child’s capabilities Do you need a school close to home and/or work? Do you need before and/or after school care? Transport needs? Financial constraints? What are the siblings’ needs? Different school? Extracurricular activities? Full inclusion in a mainstream setting? Access to a Special Education Unit Access to a Special Education Class Access to a Special School Consider a school that can foster the special gift/talent of the student, eg. schools of excellence. These schools specialise in accelerated learning programmes in areas of talents. Looking at Schools Lindley's Journey Lindley (Lin) has autism with Semantic Pragmatic Language Disorder. In his early years he spent three days a week in an Autistic Therapy Centre and two days in a private pre-school with an aide. Lindley’s social understanding was so significantly impaired that we felt it necessary to repeat the pre-school year. By the August it was obvious that Lin was bored and when he began to experience anxiety attacks we withdrew him to prepare him for ‘big school’. Lin had an hour per fortnight speech and occupational therapy with the Family and Early Childhood Services early intervention team and prior to each school year the team spent a week with disabled pre-schoolers role-playing ‘big school’. Activities included packed lunches, school bell, lining up, task transition and fine and gross motor pursuits. Lin presented with visual learning skills far exceeding his chronological age or social and expressive language capabilities and we strongly felt that he needed to be with children who had the social maturity and cognitive ability to understand and accept his differences. After much consideration, we enrolled Lin in the local school and ascertainment was arranged. We’d heard ‘stories’ about children being railroaded into situations that did not meet their needs so we ‘stood firm’ and requested maximum funding and were eventually allocated teacher aide hours. We believed the expertise of the teachers would complement our knowledge of the disorders and our consistent parenting. We felt that as a team, family and teachers could successfully provide the circumstances for Lin to participate and flourish in a school setting where he would be presented with learning opportunities either the same as, or modified versions of, those presented to his able peers. We did not believe that an essentially non-verbal child could learn to speak in a setting where there was a real possibility of there being children verbally less able than him. We knew from past experience that segregated settings did not present Lin with sufficient challenges. I set a goal to ensure Lindley was using some level of spontaneous functional speech by age ten. Lin’s acute sensory perception presented many challenges and we needed to establish strategies to deal with his inability to cope with such things as the school fife band, music lessons with cymbals or recorders, sports days, playgrounds, the school’s red floors, activity transitions and the school population speaking simultaneously in the assembly hall. Lin had a desire to learn, to be part of the class, albeit in his own way. I was continually impressed with the carefully considered modifications teachers made to their lessons to accommodate Lin. They adopted strategies that would ensure positive learning outcomes and they slowly grew to understand that inappropriate behaviours were Lin’s response to his level of anxiety or wellbeing at the time, and not that such behaviour was for the express purpose of inconveniencing others. Each of us remained adamant when we believed our opinion was the correct one and each of us learned to compromise when it wasn’t necessary to ‘sweat the small stuff’. Being ‘up front’ about Lin and being able to apologise sincerely for incidents our son’s challenges caused promoted respect from staff because we did not take a defensive stance when our child was ‘in trouble’. Likewise, with parents when Lin hurt their child in the playground in response to something that had hurt him. One teacher found her name changed to Mrs Goggins and Lin assume the persona of a certain English Postman, another found the numeral forty one continually missing from her classroom, the alphabet was occasionally devoid of ‘d’ and Lin only spoke in French for a week or two on one occasion. Many similar challenges occurred, but everyone coped. One teacher strongly disagreed with our insistence that Lin receive maximum aide hours when a child in the next room received insufficient hours to meet his needs. We agreed it was unfair and strongly suggested that each parent must be his or her child’s advocate. Despite this teacher’s objection to our beliefs, she did not compromise her professionalism by treating Lin unfairly or by being unkind to us. Over the years teachers have been very anxious about different situations and some have winced at the sight of us approaching. Some have dealt admirably with behaviours or situations they probably never dreamed they would encounter and on one occasion we've even been avoided, but I also believe that our child has been on the mind of a teacher last thing at night, as she considered strategies that might best suit a situation. One teacher spent a half hour every morning addressing Lin’s academics, and ideas to accommodate his proprioceptive needs. Another teacher, initially apprehensive, eventually embraced the idea of teaching Lin and has often approached me with delightful anecdotes of lessons she has learned by knowing and teaching him. Each of Lindley’s teachers has succeeded in providing a valuing, cohesive atmosphere promoting ease of classroom learning for all the children. Each of our teacher aides has brought strengths and compassion to their position and we are enormously grateful for their valuable input. Lin could not have experienced such success without his aides. Different Advisory VisitingTeachers have been supportive of the teachers over the years. Many times alternative placements have been very strongly suggested by members of the Department. These individuals have never seen Lin and know nothing of our family circumstances. Each time suggestions have been made, that we’ve considered inappropriate, we’ve exercised our parent-preferred option. We've all made mistakes, too little preparation or not seeing 'the big picture', but we've all come to the table with our differing perspectives and open discussion fostered trust and eventual resolutions to difficult issues. Many times Lin’s lack of social understanding seriously compromised his credibility but I believe the humanity in all concerned has played a part in permitting Lindley to retain his place in the mainstream classroom. Lindley's inclusion is a success. One must reach for the stars to achieve the top of the skyscraper. We’ve done that. When Lindley was a little boy he had a mop of sandy curls and the angelic face of a cherub. Now he’s a fine young man of twelve with a boy’s haircut and an angel on his shoulder. Rhonda Making Your Decision There are many factors that will influence your decision regarding choice of school. You will need to consider how the school implements resources and strategies. The ethos from the principal to teachers, aides and ancillary staff is also an important point. The same is true of special schools, units and special classes. Only you can determine the needs of your child. List your objectives and prioritise them. Then select the questions from this booklet that deal with your child’s specific needs, and explore the options. Keep in mind that: Not all educators will understand the impact of ASD on your child. It may be well into the school year before you and the educators realise this. You may have to reconsider your decision and possibly seek placement elsewhere. In that case, learn from the experience and move on. It’s okay to change your mind. Now that you have short-listed the number of schools from which to choose, you will need to consider the following points: 1. Environment 2. Personnel 3. Classroom 4. Philosophy 5. Support Programmes 6. Curriculum Flexibility 7. Homework Issues Wait... There's more! The school library, the unit or special classroom can provide a safe place for the student. Does the student have access to these rooms during Morning tea/recess Lunch Less structured times? Is the student allowed to spend quiet time in the library/unit or special class? Is the student permitted to leave the classroom when he/she needs a break? What is the school policy on parent participation? Will the school accept parent help? Will all staff be advised of the student’s diagnosis?   Dylan's Story After an unsuccessful attempt at mainstream school, Dylan began home schooling half way through grade two. We applied through Distance Education Queensland and were accepted under medical grounds. Dylan worked a very modified programme, which sometimes saw me having to explain his somewhat lack of academic progress at times. It was due to having a sympathetic guidance officer and an understanding teacher that we were able to achieve all that we did. My main focus of home schooling was to build up Dylan’s confidence and self-esteem, to praise those things he was good at and not show too much concern about the not so good areas. We talked a lot about how people are good at some things and not so good at others, that everyone makes mistakes and practice means better outcomes (never perfection). We did lots of role-playing of everyday encounters, and as it got closer to school re entry, we worked through some of the things that Dylan was likely to come across. We did enough academics to get us through the course, but as I said confidence and self-esteem were my main concern. After two and half years at home, Dylan re-entered mainstream school at the beginning of grade 5. He was eager to mix with other children, and by then he’d had enough of my company…. Initially he lacked some social skills and was hesitant to participate in class activities, but with a lot of help from staff, most of these concerns were overcome. He was ascertained at level 5, and was given access to the Special Education Unit and the specialist teachers. Staff are aware that Dylan does not like to be singled out, so his involvement in the SEU is kept low key. Academically he keeps up with his peers and he shows great promise in art and sport. He has represented the school in athletics and football, which has been a wonderful boost to his self-confidence and this contributed to better behaviour. There is a certain level of good behaviour to be maintained to be able to participate at this level. Nearing the end of grade 7 we are quietly confident of Dylan’s transition to High School. Home schooling gave Dylan the confidence he needed to attend a mainstream school and it gave me the confidence to push for Dylan’s needs to be met in that setting ensuring a positive outcome. I would like to point out that home schooling is not for everyone. It takes a lot of hard work and a great deal of commitment. An important factor is that if respite care is not available you have your child for 24 hours seven days a week. As much as you love your child, waking up to that little face for that length of time can be very draining – but wonderfully rewarding. Amanda Transition General Questions Daniel's School Life What a steep learning curve! Daniel was very independent at preschool and mostly did what he wanted to do when he wanted to do it. Sitting still on a mat was very difficult for Daniel. He could not cope with the close proximity of so many other children. It was stated in his preschool report that he was a very intelligent and highly gifted child who didn’t socialise very well. It was suggested that he repeat pre – school, but we objected as we thought he needed stimulation of the school environment. The prep year was enjoyable in that there was the challenge of learning without the pressure to perform. Year one brought the expectation to conform and it was a difficult year for him. Halfway through the year I noticed bruising on his arms and legs. When I asked him about it, he said he couldn’t remember how he got them. He fell over quite a lot, so I didn’t worry about it. A few weeks later another mother rang and told me that year seven students were beating him up in the playground. I approached the principal and his words were: “He needs to grow up in the playground at some time!” Needless to say we left that school the very next day. Daniel was diagnosed with Asperger’s Syndrome the following year. The teacher had had some experience with autistic children in the past and was very concerned with his inability to connect with her and the other students. Diagnosis enabled appropriate programmes to be implemented. Staff recognised that there were a number of other students who would also benefit from this tuition. Shortly thereafter we relocated to Brisbane. When settled in Brisbane we enrolled Daniel at a school where staff promised nurturing and an academic curriculum. Daniel’s anxiety was so great at this school that he spent most of the time under his desk. He only stayed one term. In the next school we approached, staff openly admitted that they might not be able to provide everything Daniel required but they assured us they would do their best. Thankfully, years 4 to 7 were successful despite some minor challenges. Staff actually accomplished more than they promised. Daniel was stimulated academically and nurtured emotionally. High school was different. School staff promised a solid academic programme and the nurturing Daniel required, but after two years it was clearly evident that school life was unbearable for Daniel. He was slipping into depression and night after night I would spend several hours calming him. It was often after midnight before he settled enough to sleep. Staff organised a buddy for Daniel, a year twelve student with a similar interest in computers. This was a positive move because Daniel had been bullied so often that he was prone to ‘losing it’ and then being labelled a ‘psycho’ by other students. He invariably came home with a ripped shirt and permanent marker pen stripes on his clothing. His school bag was twice stolen and twice retrieved devoid of the contents, which were tipped into a garbage bin with rotting food. The principal refused to ‘get involved’. Despite being denied access to me (to ensure she did not tell me what was happening,) the teacher aide often secretly informed me of the inappropriate action of other students towards Daniel. Eventually Daniel ‘lost it’ altogether and hit a boy, who’d been constantly harassing him, on the nose with a textbook and received several afternoon detentions as punishment. Teachers who recognised the situation for what it was, intervened on Daniel’s behalf and the detentions were cancelled. This seemed to be a turning point for Daniel and he asked if he could leave the school. The young man who had so diligently been Daniel’s buddy remains a friend to this day. The move to another school worked well even though there was a slightly rocky start. This was the school to which many of the primary students had moved and Daniel thought that he would pick up the threads of friendship of classmates he had known. Daniel soon discovered that friendships change and many of the boys he called friends once had now moved on to new friendships. His words were, “none of my friends are friends with me anymore or with each other!” It was a natural progression for any teenager to accept but we had to spend many hours talking to Daniel about how friendships change, in order to encourage him to accept it. Daniel began to attend seminars on Asperger’s Syndrome, determined to find out why he was different to other boys and why he found difficult so many things other boys found easy. School life over the last three years has been a predominantly good experience for Daniel. Staff have real expectations of him and allow his uneven profile to be just that. There is no real pressure for him to excel in all subjects except those that he is really interested in. The staff know his strengths and his challenges and they have learned to balance them fairly well. Changing schools was always a concern due to our perceived lack of stability for Daniel but the underlying reason was always Daniel’s well being. He enters his final term of school with all the pressure that that will bring, but I’m certain that he will succeed because of the help and understanding that he has received in these final years at school. Anna Once You Have Decided... You need to: Prepare the school for the arrival of your child (their new student). Provide the school with a SHORT (one A4 page) profile of your child. The profile should include: Information on the strengths and challenges of the child (with a balance between the two). Things that may trigger a tantrum, shutdown or meltdown. How to know when a meltdown may occur. The best way to approach your child when he/she is having a meltdown. Information on sensitivity to touch etc. Permission to pass on this information to all teachers and personnel at the school especially relief teachers. Your availability and contact numbers. Information regarding whether the child knows about the diagnosis. Preferred management strategies for siblings. Draw a stress barometer on the back of the profile placing stressful situations at the various levels. The information in this profile needs to be kept concise and written in point form. Conclusion One thing you must remember is that when discussing issues and raising questions with school staff they need to know that you will be a “team player” even at this early stage. Every parent knows his or her child better than anyone else. This automatically makes a parent their child's best advocate. Parents have the right to change their minds regarding educational settings because their observations of their child's behaviour are usually quite accurate. The educational journey should be and can be a very positive one when the focus is on the child and on his or her needs. Parents must learn to be assertive without being aggressive. Practice active listening. Individuals with ASD have given us music of immeasurable beauty (Wolfgang Amadeus Mozart), sparked the technological revolution (Alan Turing), run countries with honesty and sincerity (Thomas Jefferson), developed our philosophical knowledge (Ludwig Wittgenstein), mathematical equations (Albert Einstein), and generally ensured we learn to see life from a variety of perspectives. We can learn from their experiences and enjoy their view of life. The Asperger's Syndrome Support Network (Qld) Inc celebrates children with Autism Spectrum Disorders. The last few words we would like to leave you with are: Be assertive, advocate for your child. Be firm. Don’t give up. Get to know the professionals involved with your child and their roles as early as you can. Celebrate successes. Tell the school when they’ve done a great job. Enjoy the journey. We need to nurture the future. Resources Websites For websites relating to Asperger's Syndrome and Autism Spectrum Disorder, see the Links page and the following websites: Departments of Education Queensland http://education.qld.gov.au New South Wales http://www.det.nsw.edu.au Western Australia http://www.eddept.wa.edu.au Tasmania http://www.startingschool.tas.gov.au Northern Territory http://www.education.nt.gov.au Australian Capital Territory http://www.decs.act.gov.au South Australia http://www.dete.sa.gov.au Victoria http://www.det.vic.gov.au Brisbane Catholic Education http://www.bne.catholic.edu.au Association of Independent Schools Queensland http://www.aisq.qld.edu.au Creche & Kindergarten Association http://www.candk.asn.au Home Schooling http://www.brisbanesde.qld.edu.au/ Home Education Association Inc http://www.hea.asn.au Other Websites http://www.do2learn.com http://www.teacch.com Books Inclusive Programming for Middle School Students with Autism/Asperger’s Syndrome – Sheila Wagner Inclusive Programming for Elementary Students with Autism – Sheila Wagner Asperger Syndrome, the Universe and Everything – Kenneth Hall Asperger Syndrome and Adolescence – Teresa Bolick Asperger’s Syndrome - A Guide for Parents and Professionals – Tony Attwood Asperger Syndrome and Adolescence –Practical Solutions for School Success – Brenda Smith Myles and Diane Adreon The Asperger Parent – How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humour – Jeffrey Cohen Glossary of Terms
		If you would like more information, please email me at tulleman@bigpond.net.au.