17 replies to this topic

[Andrew2010]

Greetings all,

First, I don't wish to offend anyone, and hope my question and reason for being on this site do not go against this websites regulations (which I agreed to)!
At the end of the day, I am here to learn.
No doubt someone will let me know quickly enough!

I am studying to be a teacher, and in one subject "Inclusive and special education", haven't had experiences with anyone with any of the potential areas I've covered so far, including the visually impaired, hearing impaired, those with dyslexia (I knew one person), those with down syndrome, gifted people, those with autism, those with quadriplegia, paraplegia, or even severe cases of ADHD.

The question I'm attempting to respond to revolves around me being the parent of a 13 year old.

"James is a 13 year old students with quadriplegia but an above-average level of intellectual ability. Since his accident at the age of 7 he attended a special school with other children with disabilities"
At the beginning of the third term of Year 7 James transferred to a mainstream high school,...
Early in Year 8 James acquired a desktop computer for use at home, with voice recognition software installed.
After appropriate training James can now complete much of his homework independently with only minimal assistance from his tutor or family members
To tackle non-text based subjects like mathematics or art, James will have to use other types of ‘adaptive’ or ‘mainstream’ software.

Success in the school setting will be dependent on James expanding his skill base, his level of determination and his adaptability. Running parallel to this will be the school’s willingness to institute
inclusive teaching methods and to make ‘reasonable accommodations’ where necessary, in order to create an environment that facilitates his success.

What I would sincerely appreciate, is hearing from parents who have entered their children (with quadriplegia) into mainstream education.
If you could tell me your concerns/views/perspectives/hopes/fears regarding your child, how the school would deal with your child.

My perspective will be included as part of a SST (or student support team, as you'll probably already know) as a parent, with that of four other people (who will give their perspective as teacher, school counsellor, principal, and support staff)

Truely, even after reading through one forum thread by the user 'loving sister', it impossible to comprehend just how difficult life is, and what people involved have dealt with and are dealing with.

Blessings,

Andrew

[HiltonP]

I am not a parent, but I have muscular dystrophy, which has rendered me a virtual quad for the last 35+ years. During that time, and being permanently confined to a wheelchair, aged 12 through to 16, I attended a "normal" local high school, the only disabled pupil out of 800+ kids. I can therefore perhaps give you some insight into mainstream education from a disabled persons point of view, albeit a view from the 1970's.

Firstly let me say that I was "accepted" more by my fellow classmates than by the teachers and parents of the other kids. My parents had to put up with more negative sentiment than I had to. Many of the teaching staff, and parents, believed that I should have been sent to a "special school". Fortunately I was hard working and bright, so I always came near the top of my class in exams, which took a lot of pressure off my parents and gave strength to those teachers who believed in me.

The school was a multi-level building, with classes changing every 40 minutes, and no access modifications were done to it for the entire time I was there (5 years), other than a couple of footplate scrapes I had added to some doors. As strange as this may sound I look back on this as a positive, because it forced me, and my schoolmates, to work together to get me around the building. We could do a flight of stairs, wheelchair, suitcases and all in 8 seconds! The vigor of youth! I was involved in the rugby coaching, I scored for the cricket team, and I served on the schools newspaper staff. I attended the same classes, wrote the same exams, under the same conditions as my peers. The only thing I can recall being stopped from doing was woodwork because it required the use of machines which might have been risky.

My schooling helped me when I entered the job market, not so much by providing an education, but by developing my inter-personal skills, and forcing me to deal with real life situations in an in-accessible environment. I had learned to deal with prejudices, hang-ups, etc very early on and by the time I started work that was all behind me. For me the biggest factor was the acceptance of the senior teaching staff of my intellectual abilities, and allowing the physical disability to be handled as a secondary matter. In short, they trusted my brain, and let me sort out my body. This level of "respect" by both parties had to be earned, and was earned, but it was on the table in the first place. Had I been a problem child, or failed my exams, my attendance of the school might not have been as secure.

I think I can safely say that by the time I finished my schooling all of my schoolmates supported me, and all of the teaching staff supported me, but sadly there were still parents who saw my future in a dim light. Perhaps that was the last lesson, that there will always be those who will doubt, but the key is to let them be, and rather turn to those who believe in you. Fortunately I did, and I have never looked back.

[Andrew2010]

Hi 'HiltonP'

Thank you so much for replying - I honestly didn't know what to expect!

Your perspective is most definitely insightful, and while, as you mention your response is based on 1970's, despite all the changes in legislation, and the theory I'm aware of, attitudes don't appear to have changed to the extent that they should. I'm actually starting this new direction in my life late, and will turn 37 soon, oh, and I'm from the Australian education system.


"Firstly let me say that I was "accepted" more by my fellow classmates than by the teachers and parents of the other kids. My parents had to put up with more negative sentiment than I had to. Many of the teaching staff, and parents, believed that I should have been sent to a "special school". Fortunately I was hard working and bright, so I always came near the top of my class in exams, which took a lot of pressure off my parents and gave strength to those teachers who believed in me."

After reading this, no doubt it wouldn't surprise you to know that there are plenty of examples of how this type of thinking hasn't changed in the 1990' and 2000's!

I find it amazing to think that there were no access modifications done! Surely in this age of litigation, legislation, and lawyers, parents could apply a lot more pressure.
Your positive attitude doesn't surprise me at all, and seems to be a recurring theme of 'survivors' in life, especially those who successfully negotiate disability.
The examples you provide of how students rallied to support your cause, and in particular how you participated in school are wonderful, and made me smile!
Personally I was wondering, well, how do paraplegics fare in school social life, after all, friendships are based on shared experiences. I guess it is up to the individual to find ways and make it happen!
As a parent, beyond acceptance, I guess I'd be worried about how well my child could integrate, and the richness of school life that could be experienced.

You mentioned that you "attended the same classes, wrote the same exams, under the same conditions as my peers"
These days, it is mind-blowing how much technology is available to people. Did you have someone assisting you to take notes, or helping you to read books?

When you say the school helped you enter the job market due to facilitating the development of inter-personal skills etc, "and allowing the physical disability to be handled as a secondary matter" this gels with stories written by parents of severely visually impaired and blind children, both in their concern for a transition into adult-life/college/the work-force, but that the physical side wasn't the focus, merely a part of who they were.

The initial concerns that I had when considering my question included access, social life, and feeding. Many people have seen the movie 'The Bone Collector', and my wife has read many of the Jeffery Deaver novels about forensics expert Lincoln Rhymes (I'd be interested to know what paraplegics think of that character?!). Again, forgive my ignorance, but was lunchtime, and going to the bathroom at school an issue.

What did your parents worry about?

Thank you for sharing a part of your life with me!

Blessings,
Andrew

[HiltonP]

Andrew . . . Yes, it's interesting that 25 years after leaving school I assisted a post-grad student with a thesis on disabled education, and her conclusion was that it was easier for a disabled kid to get a mainstream education in 1970 than it was in 2000. This was primarily because by 2000, although access had improved, political correctness, and litigation, had increased dramatically. Back in 1970 we just got on with things, and if I got bumps and scrapes then so be it. No-one was going to sue anybody. In 2000 the school would be petrified of litigation and would rather turn a disabled kid away. I see that happening right now. Schools deliberately keeping themselves in-accessible. By doing so they avoid 1) the cost of building mods, and 2) the chance of legal issues.

I never had a problem at school socially, but then I'm a reasonably sociable sort of person. Being young, and energetic, my friends were happy to lift, push, carry and squeeze my wheelchair anywhere we wanted to go. Access therefore wasn't really a problem because we just went through, over or under any obstacles! I therefore was able to visit all my friends homes, despite none of them being accessible, purely because my mates were prepared to muscle me around. I never had to ask them, they just did it as second nature. We socialised outside of school most days, going to the beach, playing touch rugby on the local fields, parties, barbeques, etc. There wasn't much that my friends did that I wasn't involved in.

I know I'm going to sound like an old man, but life seemed simpler back then, even though it was only 35 years ago. None of us had the social hangups which seem to plague the youth of today. We had no designer clothing, or cellphones, or computers, and we weren't overly concerned about our appearance.

Eating and toileting . . . I was able to feed myself, provided I had a table to eat off. If there was anything that needed cutting I just asked for help. The school toilets were not specifically accessible, but they were wide enough for me to get the wheelchair into. If I couldn't close the door, tough luck. I did try and manage my bladder and bowels to operate outside of the 8am to 3pm school hours.

I don't recall my parents worrying about anything . . . other than that I got a good education, and good marks in the exams! At any rate, I never told my parents even a quarter of the nonsense we got up to as kids, otherwise they might have had something to worry about!

[Andrew2010]

HiltonP,

Smiling ...I doubt any parent knows the full extent of what their children get up to, and no doubt, despite what they say, would parents really want to know every aspect of their child's life!

Yes, life is way more complicated now. The essence of life hasn't changed, but I do believe what is important (essentially social/moral values) has been distorted and undermined. Another thing that strikes me is the can do attitude you referred to. Society had a reputation of being tough and innovative, but subsequent generations everywhere are labelled as selfish and self-absorbed…generalisations of course, but perceptions have changed over time based on something (or is it just the media saying it is so!).

Regarding some of the points I'll raise at the SST meeting as a parent will be:

As a parent I've made the decision to send James to a mainstream school, to lead as normal a life as possible. Developing James' inter-personal skills, and assisting James to deal with real life situations is important.

That the teachers accept James' intellectual abilities first, and consider the physical disability as a secondary matter.

That practical concessions be considered either through building modifications, or supporting access around the school.

Well, that's all for now, you have been my only source, and it would be great of other parents/people could offer their insights. A sincere thank you for responding, I'm grateful for you input! If you want, I can give update you later.

Blessings,
Andrew

[cathie]

In the Australian system there are supports and concessions for exams and class work such as extra time to complete work, bathroom breaks, a scribe or in some cases laptops with speech recognition software if you can't write, a teacher's aide in class if needed, alternative formats for textbooks. Accessibility is talked about usually at the end of the previous year to give time to organise the rearrangements. They may rearrange where the classes are or put in ramps. There is no reason why a child with a physical disability can't go to a mainstream school. I have even been told that I could have a personal assistant come in if I needed to or the school nurse could be trained to assist with medical/bathroom issues. All these things are negotiated through the school and education department. A special school will hinder his social and intellectual development.

[Andrew2010]

cathie, on 09 September 2010 - 12:55 PM, said:

In the Australian system there are supports and concessions for exams and class work such as extra time to complete work, bathroom breaks, a scribe or in some cases laptops with speech recognition software if you can't write, a teacher's aide in class if needed, alternative formats for textbooks. Accessibility is talked about usually at the end of the previous year to give time to organise the rearrangements. They may rearrange where the classes are or put in ramps. There is no reason why a child with a physical disability can't go to a mainstream school. I have even been told that I could have a personal assistant come in if I needed to or the school nurse could be trained to assist with medical/bathroom issues. All these things are negotiated through the school and education department. A special school will hinder his social and intellectual development.

Hi there Cathie

Thank you for your response!
Your information is extremely useful. Times have definitely changed, especially in the last ten years.
Realise now that the name of my thread is not particularly useful!
What concerns did you have prior to entering school?

Blessings,
Andrew

[cathie]

After my initial injury it was more about access than anything else, but my school was already pretty good accessibility wise. To start with it was more about getting back to school than anything else. The socialising thing. Now my concerns have changed somewhat. I am looking at going back to study next year at TAFE or uni so firstly it's access, but also support mechanisms that will need to be out in place. I can no longer hold a pen for any length of time due to my muscles in my hand and arm fatiguing which leads to spasms. I am talking with the schools about handing in assignments in alternative formats to handwritten. The schools I have approached are pretty good about any additional support I may need. I look after most of my own care so that is not a major issue at this time. I will be working with my Occupational and Physio Therapists to sort out any addition support I may need. Also it has been suggested that I may need to leave class early to beat the rush of students if I'm at TAFE. I guess the main thing is that there are action plans with the school in case XYZ occurs so that any likely possibilities are covered. This can be anything from a catheter clogging to a bowel accident or even Autonomic Dysreflexia.

[Andrew2010]

Hi again Cathie,

Accessibility is a recurring theme, and from your input, having support mechanisms in place. One thing that I hadn't considered at all was action plans.

"action plans with the school in case XYZ occurs so that any likely possibilities are covered. This can be anything from a catheter clogging to a bowel accident or even Autonomic Dysreflexia."

I'd never heard of Autonomic Dysreflexia (there is plenty more I don't know about!), and had to look it up - something life threatening is a tad scary!

At this point, thanks to you and HiltonP, I have a decent insight, and will focus on gathering a bit of formal research to complement the points brought up so far.
It really is amazing what people endure, and the extra considerations/variables that people who are paralysed need to consider/contend with.

Thank you for taking the time to respond,

Blessings,

Andrew

ps your avatar is reminiscent of the cartoonish pitbull that Milo becomes in the Mask!

Edited by Andrew2010, 10 September 2010 - 02:11 PM.

[HiltonP]

Andrew . . . It's good that you're thinking ahead and collecting information and ideas . . . but, I would caution you against planning too much. The problem with planning is that things look like mountains, when they're just molehills. You also cannot plan for your son's personal interactions, friendships yet to be formed, or her ability to problem solve on his own, etc. At some point you need to "just do it".

I am reminded of one of our most successful disabled charities here in SA . . . formed a couple of years ago by a group of schoolkids younger than your son. It was a unique coming together of a few schoolgirls, and their disabled school friend, and a desire to raise money for a wheelchair. No amount of planning by the school or parents could have made it happen, it was spontaneous. Their charity has gone on to help hundreds of disabled kids, thanks largely to the fact that it is driven by the kids (both able-bodied and disabled).

[cathie]

Access is a huge thing, if the child can't get to their classes or to the bathroom this can be a huge challenge. Action plans are required for most children at a school with any major illnesses or allergies these days to cover the school's backside if something does happen. It may mean training school teachers or calling the parents or an ambulance if needed depending on the circumstances and usually will have several things to do before an ambulance will get called, it is the same for a child with asthma, epilepsy and other conditions. For example try X, if no improvement try Y, if no improvement call Z, but these are things that the parent and school will usually discuss. All problems that may occur (it is not a certain that it will happen but is possible) are usually able to be managed which is why it is important for the school to have information as to what to do if these things happen so they don't panic. Not everything can be planned for and this is true for any child in school or even regular people in day to day living. I don't dwell on the what if's and just do my thing then deal with things as they come up. If I were to dwell on what might happen I wouldn't do anything and wouldn't be living.

[jenny407]

Andrew,

First: Welcome to the forum! I hope you'll find useful information here.

I have been following your thread. I'm very impressed especially by Hilton's posts, also by cathie's. Thanks for sharing.

Andrew: One thing that struck me - as you also mentioned above - that perhaps your title isn't clear enough. You might start another thread, stating "school" right at the start, to get more responses. (Just copy and paste your first post here.) Also post it in a different sub-forum- the first on the list, "General SCI discussions" - (see my link below) as this sub-forum is mainly about the parents being SCI, so those are the people who read it.

I also add a link to another thread on here, with a different emphasis, though. Perhaps you've found it anyway. This may put you into contact with other members dealing with similar questions. You can pm somebody if you wish.


Link to school thread - click

Myself, unfortunately, I can only contribute little. I'm a teacher (at a German school) - with a 14-year-old son, BTW, but no SCI - , so I do agree that lots of talks with school is important. What do you need for your son, what is possible, what might be problems? Usually, schools, teachers, headmasters and other parents and pupils, are very willing to help (a few exceptions might arise, as always).

We don't have quads or paras at our school (except my friend, a teacher, himself). We do have pupils with other disabilities and cope well (like installing a computer for reading for a child with eye sight problems). Also I know that laptops can be used for writing. More time may be given for tests if needed.

I'm very sure that, as Hilton points out, an open attitude is the most important factor. And yes: plan, but try not to worry too much. And perhaps you can take pressure away from your son. He doesn't have to be an A-student (like Hilton was) to be accepted. An open personality is more important, self-confidence. Try to work on those, too, not only achievement.

Sorry, this was pretty general. If you have any questions I might be able to answer, feel free to do so.

Jenny

Edited by jenny407, 11 September 2010 - 10:33 AM.

[jenny407]

HiltonP, on 08 September 2010 - 01:18 PM, said:

I don't recall my parents worrying about anything . . . other than that I got a good education, and good marks in the exams! At any rate, I never told my parents even a quarter of the nonsense we got up to as kids, otherwise they might have had something to worry about!

Ha ha, Hilton! You made me smile. So true, isn't it?
I found your posts most impressive. You are an inspiring person.

[Andrew2010]

Hi Jenny,

Yes, most definitely chose the wrong forum, and (smiling to myself) the title was utter rubbish - still, despite these problems, people still found the thread, and the time to respond. I'm betting that almost every other student who started considering a response to the case study had little idea about quadriplegics or paraplegics, before hand...then again, I shouldn't assume others are as ignorant as myself!

Even with only two responses, it seems reasonably clear (at least considering a parents perspective) the most important considerations.

Your suggestions sound great, though really do not how much more there is to add?

Here is what I'll include (and this can of course be modified/updated/refined), and you can clearly see HiltonP and Cathie's writings here:

As a parent, here are some issues I would bring up for my son James:

As a parent I've made the decision to send James to a mainstream school, to lead as normal a life as possible. Developing James' inter-personal skills, and encouraging him to deal with real life situations is important.

That the teachers accept James' intellectual abilities first, and consider his physical disability as a secondary matter.

That the school make accessibility considerations like rearranging where the classes are or putting in ramps, or concessions for exams and class work such as extra time to complete work, bathroom breaks, a teacher's aide in class if needed, and alternative formats for textbooks.

Training for the school nurse to assist with medical/bathroom issues.

To set in place action plans with the school in case XYZ occurs so that any likely possibilities are covered. Considerations include anything from a catheter clogging, to a bowel accident or even Autonomic Dysreflexia.

If people can add to this list, great! But no pressure!

Blessings,
Andrew

Edited by Andrew2010, 11 September 2010 - 03:20 PM.

[Andrew2010]

Hi HiltonP,

Thanks for all your feedback, I truely do appreciate it!

One thing I'm concerned about

HiltonP, on 10 September 2010 - 03:43 PM, said:

You also cannot plan for your son's personal interactions,

Just to make sure there is no misunderstanding - I am doing a graduate diploma in education to become a teacher, and the information I presented initially was from a case study that I and four other students are to analyse from different perspectives - mine being that of the parent (as a by the by, I've only had communication from one of the other students who is writing about 'James' from the perspective of school counsellor!)

Sorry if I didn't make this clear!

Blessings,
Andrew

[HiltonP]

Andrew2010, on 11 September 2010 - 03:32 PM, said:

Hi HiltonP,

Thanks for all your feedback, I truely do appreciate it!

One thing I'm concerned about

HiltonP, on 10 September 2010 - 03:43 PM, said:

You also cannot plan for your son's personal interactions,

Andrew . . . What I mean't by that was that you (or anyone else for that matter) cannot plan for who the disabled child will meet at school, befriend, etc . . . and the effect/impact those friends will have on his life. If I look back at the school friends of mine who became close friends, and who helped push and carry the wheelchair. I knew none of them before I joined the school. We met for the first in school, and they just happened to be the kind of kids for whom the wheelchair wasn't an issue. None of us (me, parents, teachers) could plan for that. The best the school/teachers/parents could do was try and create an environment in which friendships could form as naturally as possible.

Jenny . . . Thanks for the kind words, but . . . sadly I was never an A-student!
I was bright, but not that bright!
I was one of those "worker students", who listened in class, did his homework, and studied hard.

[jenny407]

HiltonP, on 13 September 2010 - 09:49 AM, said:

Jenny . . . Thanks for the kind words, but . . . sadly I was never an A-student!
I was bright, but not that bright!
I was one of those "worker students", who listened in class, did his homework, and studied hard.

Hilton,
Perhaps I didn't express myself clearly enough. No, it wasn't the fact that you were bright that impressed me the most. It was your attitude, your openness, your willingness to go along as it becomes evident in what you wrote. Very impressive and inspiring.

Jenny

[Andrew2010]

Hi HiltonP,

Phew, ok, my miss, but I'm glad!
I think I fit into the bright, but not that bright mold too!

Your thinking seems like excellent advice for many people on this site, and whilst having plans are essential for so many reasons, well, one can't quite plan for everything, and sometimes you have to plat what's in front of you.

Still haven't got the hang of quoting...oh well!

"What I mean't by that was that you (or anyone else for that matter) cannot plan for who the disabled child will meet at school, befriend, etc . . . and the effect/impact those friends will have on his life. If I look back at the school friends of mine who became close friends, and who helped push and carry the wheelchair. I knew none of them before I joined the school. We met for the first in school, and they just happened to be the kind of kids for whom the wheelchair wasn't an issue. None of us (me, parents, teachers) could plan for that. The best the school/teachers/parents could do was try and create an environment in which friendships could form as naturally as possible."

Having a positive attitude can make a huge difference. Patients heal faster, people lead happier lives, and a positive attitude can compensate for so much!

Blessings,
Andrew

Edited by Andrew2010, 13 September 2010 - 10:22 AM.