Travis Read Exceptional Learners Interview

QUESTIONS AND RESPONSES

Interview of Lori Pettit regarding her son Jared:

Would you please describe Jareds condition? Jared has a condition called Wolframs Syndrome. It is a disease that slowly deteriorates the organs of the body. Different individuals have different organs attacked at different rates and in different areas. For exam le! Jareds brain is being targeted mostly in the social and behavioral areas of the brain. "ventually the disease reaches the muscles in the throat and most individuals die from choking on something as sim le as water. #ife ex ectancy averages about $% years old. It usually leads to multi le diagnoses of diabetes! as ergers! blindness! deafness! etc. When did you first notice signs that something was wrong? We first became concerned with Jareds lack of social develo ment and struggles in some areas in school when he was in &th grade. We knew he was uni'ue as a little child! but he had never lacked friends or had troubles in school until then. When I a roached his teacher in &th grade! she said she did see that he was struggling in some areas! but not academically. (he fact was that he was at the to of his class as far as academics were concerned. I remember telling her that I didnt think his behaviors were ty ical com ared with other kids and my own kids around that same age. I knew he lacked friends! and he was also demonstrating some anxiety. I also noticed that he was very uncoordinated and wondered if he could be tested in any way. Did his teacher offer to loo into additional services to assist him? She said that there was an occu ational thera ist that might be able to do some testing. )owever! when she in'uired about it she re orted to me that since he was fine academically he wouldnt 'ualify for any testing. (hat year we began to seek hel for his anxiety through his ediatrician who ut him on some anti*anxiety medication. We also began counseling soon after that because he began to ull his hair out. !ow did his situation progress as he got older? +y the time he was in ,th grade he had begun to act very disru tive in class and also had some other hysical sym toms. "ventually the diagnosis was made of -s erger Syndrome. I had never heard of this condition before! but we received information from the sychologist and set u a meeting with the Junior )igh counselor. Did the school provide assistance once a diagnoses was made to assist Jareds academic development? When they became aware of the diagnosis of -s erger Syndrome! they offered us some reading material and set u a teachers aid that could go get Jared out of class when he

became too disru tive. (hey set u a &.% lan for him! which basically said he could have some breaks! extra time for assignments! etc. (hat is all that was set u that year. (he counselor set his schedule for /th grade so that he had some co*taught classes. (hese classes had $ teachers and rovided guided notes and outlines for the students. (hey also had fewer students in them so they could get more one on one hel . )is behavior was still very disru tive! but they worked with him as best they could. )e was given a studies skills class in 0th grade and the same accommodations. It was in 0th grade that the other diagnosis of Wolframs Syndrome was made. +ecause that involved an actual disease that would be deteriorating! he was ut on an I"1 in 0th grade. (here wasnt much difference in the accommodations. It was 2ust a bit more detailed as to what would be rovided. (hey told us that erha s in )igh School he could get a art*time aid to go with him to some of his classes. (o our sur rise! when he entered high school they actually gave him a full time aid that went to almost every class with him. Did the school provide any assistance for Jareds social development? (his is the area he did not receive any services for. !ow aware did the school ma e you of your rights as a parent? We had a &.% meeting and eventually an I"1 meeting once a year where they gave us the arental rights handout and went over it if we wanted them to. We always had to sign that we had received it. !ow aware were Jared"s general classroom teachers of your parent rights and available assistance for Jared? -t the I"1 meetings at the high school and 2unior high! only 3 out of / general classroom teachers was re'uired to be there. I always thought that was a little strange. (hey 2ust randomly icked one teacher to come. (he reason the high school teachers became aware of what Jared needed was because an aid came with him every day. (hey were retty good to work with him and followed the accommodations in his I"1. What areas did Jared e#cel in the most and where did he struggle? Jared excelled in math and science. )owever! since he did the math in his head he had a hard time ex laining his answers! es ecially in front of the class. )e didnt have behavior issues in choir or com uter classes! I think because he didnt have to listen to lectures! work in grou s! or use inference or reasoning. )e loved ceramics class but when he brought his ro2ects home it was obvious his teachers aid had done most of the work4 )is biggest struggles were any ty e of writing! drawing! or anything where he had to make inferences or analy5e roblems! etc. )e took things very literally. )e could not read between the lines in any kind of novels! to understand feelings! etc. So "nglish class was the most difficult. 6 course! the biggest struggles were social. )e had students who would take advantage of his situation and thought it was funny to tell him to do things that he would get in trouble for. )e couldnt distinguish between eo le laughing with

him and eo le laughing at him. What was the schools response to the students ill$treatment of Jared? 7one! it was something they felt they had little control over. I think we all could have done a better 2ob of hel ing his fellow students understand his condition. +ecause he looked normal and had few effects from Wolframs when he was in grade school it was hard to get eo le to see what was behind the new behaviors and social miscues. -t one oint things got so out of hand with a grou of students that the olice had to become involved and some of them s ent a good deal of time in Juvenile Detention. )owever! the school had little! well no reaction. What services could Jared have benefited from that were not available? We always ho ed he would im rove socially. 7ow they have classes called 8talking club9! etc. where students are taught social skills in a grou setting. Im not sure! though! that they really have any significant effect on students with -s ergers and Wolframs Syndrome. I think its doubtful it would have hel ed him. (hey had mentioned eer tutoring every so often in our I"1 meetings but nothing ever came of that. I think that would have been something that could have benefited him. If they could have had a eer hel him! es ecially one that he could watch for social cues! etc. in each class. (he other thing that could have been im roved was the transition training for after high school. (hey took him to a few work laces for a day at each! but never really hel ed him find a niche he could fill after high school. It was kind of useless. (hat has been the biggest struggle since high school. (hey could do a better 2ob re aring the s ecial ed students for vocations after high school. -ctual vocational training in school would have hel ed him more than some of the other elective classes.

THOUGHTS AND RE LE!TIONS #ori is my mothers sister! which makes Jared my cousin! and I have known him very well my entire life. I have heard the family discuss his struggles at school and with friends :who #ori was more generous to than they deserved; but had never considered them from a teachers oint of view. #ooking back now it is ama5ing to me how little the school and Jareds teachers did to assist him. (o give you a little more insight into Jared! Wolframs syndrome is only found in about <. individuals in the =nited States. +oth arents must be a carrier of the gene for it to manifest in a child. >y family has gone back in their own genealogy as well as the individuals they have met with Wolframs and they all have been found to share a common ancestor. (he disease can take on infinite forms. >y aunts oldest son died of cancer when he was % years old! which has been attributed to Wolframs. (heir youngest son also suffers from Wolframs but shows very different effects. )e is as normal as any other child socially and visually! but his other organs are being attacked at a much 'uicker rate. (he bottom line is it is hard enough trying to hel a student with a well* known and redictable disease. Jareds condition takes a new form yearly and so the re'uired assistance changes yearly as well. Des ite the uni'ueness of Jareds disease the mistreatment and lack of assistance he has received should be unacce table in todays society. -s we discuss the im ortance of working with these students in class it is easy to forget how real it is to them and their families. I think one of the most im ortant things that a school and arent can do for a child in Jareds situation is to hel the students understand their condition. Jareds family never had the o ortunity to ex lain to his classmates or even some of his teachers what

exactly it was that was causing Jared to behave the way he was. I believe students have a great deal of em athy for each other when they come to understand the individual and understanding their condition is a big ste in that direction. -nother im ortant idea that came u in my interview was the lack of social develo ment assistance offered for Jared. I hear of rograms to assist in students with disabilities academic develo ment but what strikes me as ama5ing is that there is so little to assist them socially. (he truth is many of them are not going to go on to be great scholars or even to a higher education! but they will all be dealing with other eo le and the real world their entire lives. It seems to me that more em hasis should be being laced on develo ing life and eo le skills to better re are these articular students for the future. (hey may never drive a bus! work as a bank teller! or teach a class of students! but they will interact with eo le everyday and if we dont hel them develo the skills to do so a ro riately there is little ho e for any ty e of a future outside their home. Individuals make 2okes about Wal*>art greeters! or the erson cleaning tables in >cDonalds and +urger ?ings around the world but these individuals are contributing to society! develo ing a sense of self*worth and could not do so if they did not understand socially a ro riate behaviors and boundaries. >ore than anything else I ho e I can remember Jared when I have students of my own that dont fit in any category of ty ical behavior or condition. 7ot every student has the ability to go on to be 1resident but they all have the ability to make the best of themselves! whatever that may be. )owever! they cant! and wont! do it without our hel .