{"id":3692,"date":"2016-05-07T04:36:50","date_gmt":"2016-05-07T02:36:50","guid":{"rendered":"http:\/\/whystory.pl\/en\/tip-of-the-ice-berg-versus-asperger-syndrome-a-letter-from-mum-and-a-therapist\/"},"modified":"2018-02-15T12:32:31","modified_gmt":"2018-02-15T11:32:31","slug":"tip-of-the-ice-berg-versus-asperger-syndrome-a-letter-from-mum-and-a-therapist","status":"publish","type":"post","link":"https:\/\/whystory.pl\/en\/tip-of-the-ice-berg-versus-asperger-syndrome-a-letter-from-mum-and-a-therapist\/","title":{"rendered":"Tip of the ice-berg versus Asperger syndrome \u2013 a letter from mum and a therapist"},"content":{"rendered":"

The unjust mark of a bad parent or a bad child<\/strong><\/span><\/span><\/span><\/p>\n

\u00a0\"\"<\/p>\n

I work with children having the Asperger syndrome on a daily basis \u2013 as a therapist and a mum. I don\u2019t consider the disorder itself as a problem, but the approach to the syndrome as demonstrated by public institutions constitutes a serious problem. The phrase \u201ctip of the ice-berg\u201d seemed to be the most accurate one in my reflections, and I am presenting here only a small piece of the phenomenon I have been analyzing. <\/strong><\/span><\/span><\/p>\n

Being a teacher with almost thirty years of experience, I often meet colleagues at various trainings or conferences. Discussions held in the corridors are sometimes related to problems of students with Asperger or ADHD syndrome. I have witnessed complaints about unusual behavior of children, or I have heard opinions about parents being critical. When I tried to explore that issue, I faced a wall. Officially \u2013 most teachers don\u2019t want to admit insufficient qualifications or skills in working with such children. <\/strong><\/span><\/span><\/p>\n

Therefore, I went to the Director of Education Department in a small town. My aim was to obtain the approval to go to schools not only to carry out surveys (within the lifelong education scheme), but most of all to talk with teachers and parents. I proposed to do research, surveys about co-operation between parents and schools in terms of the mentioned topic. I heard an answer that \u201cin our town we don\u2019t have such problems (meaning the students)\u201d. I tried talking to the Head of Education Department in a big city \u2013 here I also didn\u2019t get the permit to do research.<\/strong><\/span><\/span><\/p>\n

So in the turbulence of a school life and our daily life there is \u201csuch a thing\u201d as Asperger, but it obviously it is safer not to touch this issue. The issue which is a tip of the ice-berg. On top if it there is a diagnosed student who due to the opinion on special education is included under the Individual Education-Therapeutic Program (IPET), and \u201cunder the water\u201d there are lots of dangers. <\/span><\/span><\/p>\n

When I realized that my activities didn\u2019t bring any effects, I decided to change the topic and show what is \u201cunder the waterline\u201d. I hope that the scientific analysis presenting this complex problem will save a lot of unnecessary mental suffering or pain of being not understood or rejected. <\/span><\/span><\/p>\n

\u201cTrajectories (experiences) of institutional oppressions, family entanglements, cases where children having Asperger syndrome and their families have been rejected by the society\u201d. In my reflections I will refer to real life situations which the students or their caretakers experienced. In some cases very painful (!), but unfortunately this is the reality and life in Polish conditions \u201cin the shadow of Asperger\u201d. <\/span><\/span><\/p>\n

Just like to sailors\u2019 lives the dangers are invisible elements of the submerged ice-berg, the hidden incidents are a serious danger when creating the self-esteem, social interactions (being already abnormal in case of Asperger syndrome) and the feeling of rejecting young people. <\/strong><\/span>They often imply secondary disorders, which could be: behavioral disorders or resistance-rebellious disorders. There is also the issue of whole families which are affected directly by these oppressions or through the child\u2019s suffering. <\/span><\/span><\/p>\n

I have participated for many years in meetings with parents of children having the AS (Asperger syndrome)\/ADHD and I have occasions to hear opinion about their co-operation with the school (public). Some of them are satisfied with contacts. They praise the system of support given to their child. Usually in such situations there are no bigger problems at school, and parents hoping to be understood attend meetings at schools. It is a pity these are only individual cases. <\/span><\/span><\/p>\n

I am mother of two children \u2013 a son and a daughter affected by ADHD<\/strong> and Asperger sydnrom<\/strong>, and a pedagogic therapist. In spite of this, together with my children we have been through hell when contacting schools and other institutions. In order to protect my son from discrimination caused by the school, I had to appeal to the Ombudsman for Children, in some other situation to the Director of the Regional Committee for Examinations. The Committee \u201cdid us a favor\u201d and wrote a letter to the court asking to investigate the child\u2019s background situation. We won the case, but the time and health I wasted (all year) won\u2019t be returned. <\/span><\/span><\/p>\n

It turned out we are not exceptions. A large group of parents complains about co-operation or lack of it. On portals devoted to ADHD or Asperger syndrome you can notice many complaints of parents about institutions, which instead of giving support, cause unnecessary suffering, worries and pain. When there are problems \u2013 many caretakers are powerless. I don\u2019t mean helplessness with elements of impotence, but rather a feeling of double fear (!). The first one is about measures that can be applied by an educational institution to them, and secondly to their child. In the opinion of the institution such a parent is \u201can antagonist\u201d and gets a direct message that he or she is \u201ca difficult parent\u201d, who has demands or who needs pedagogisation. As revealed in the analysis of caretakers\u2019 experiences, the probability that their child is \u201clost\u201d after some interventions is high. The school as an institution can victimize \u201cthe disobedient parents\u201d who want to fight for a dignified treatment of their child affected by Asperger, as presented on the example of our family. <\/span><\/span><\/p>\n

Such situations are recalled by the Ombudsman for Disabled Children, Agnieszka Dudzi\u0144ska, PhD: <\/span><\/span><\/p>\n

schools sometimes look for a dependency between the child\u2019 disability<\/strong> and the alleged negligence in education<\/strong>. Even if there is some dependency based on statistics, it is impossible to define clearly what the result and the cause are! Many parents become stigmatized, and the child\u2019s disability raises distrust among both parents and teachers, and also other parents.<\/span><\/span><\/p>\n

I have noticed a certain (ir)regularity. The education supervisors control the support given to disabled students, by checking only the documentation and talks with the school head teachers. In my research I haven\u2019t had information that a parent of a child affected by Asperger syndrome has been requested by an inspector or superintendent about opinion on the psychological-pedagogical help given at schools. And there would be a lot to comment about. I will describe a few flagship slogans that parents hear from the head teachers when enrolling a child into a middle school or high school, when informing that the child has been diagnosed with Asperger syndrome. <\/span><\/span><\/p>\n