Living with Autism: A Parent's Perspective

A Parent's look at Dealing with an Autistic Child

About this blog

Welcome to our blog. Here Michelle and I (Carl) will try over time to give you an idea of the struggles and the triumphs of raising an autistic child. He is lovable and happy most of the time but is basically nonverbal and nonsocial. He is getting better with time and a lot of effort on our part (and on his) and this journey we will try to explain as we go along

In the past week three stories have come to light regarding the fact that three special needs students have been pulled from their schools due to the treatment they received at their school






http://www.cbc.ca/canada/new-brunswick/story/2010/06/21/nb-moncton-inclusion-school-isolation-room-1113.html#socialcomments

Autistic child pulled from school over use of Isolation room





http://www.cbc.ca/canada/new-brunswick/story/2010/06/23/nb-inclusion-terry-lynn-551.html#socialcomments

8 yr old with foetal alcohol syndrome, cerebral palsy and epilepsy pulled from school because no one would help her use washroom



http://www.cbc.ca/canada/new-brunswick/story/2010/06/22/nb-isolation-room-marc-1221.html

13 yr old with aspergers and bipolar disorder pulled from school over use of isolation room



Over the last year these three students were pulled from classes due to their treatment at the hands of school staff with one case verging close to serious neglect in the case of the cerebral palsy girl and the other two clear signs of abuse as the isolation rooms in question used in those schools are 3 walls bolted to the floor and a door that is held shut while the student is inside



Isolation rooms in general are not a bad thing as it does help an autistic child calm down, however a major part of the issue involved in these cases is the size of the room. In my child's school what is used as an isolation room is a small office sized room where the TA and student sit and wait for his issues to resolve themselves.



What is of particular issue lately is the fact that autistic children due to a lack of social skills and communication skills become upset due to the inability to communicate and can become disruptive and/or aggressive. This can be fixed if the TA involved is directly involved enough to pick up the signs of an impending issue and has the child leave the classroom before he becomes disruptive.



As i have watched these discussions over the last several days i have noticed a significant trend in that a large majority of people would prefer to see all special needs students removed from the classrooms which is no more a solution then a full and complete inclusion system is. The majority of students that have special needs can manage well in a standard classroom as long as certain needs are met.

1./ no person who needs help using the washroom should be forced to not have that help. A TA appointed to help the student at prearranged times or a simple paging system to have a TA come help in that situation is all that is needed in most cases and the TA involved could also be dealing with other low risk special needs students at the same time.

2./ no student who is at risk of violent behaviour or running away due to a special needs situation should ever be without a TA present. This TA would normally monitor the child for warning signs that they need a break and remove them from the classroom before an episode, allowing them to decompress without a violent episode and would also help the student with certain training outside the classroom that would be considered part of a special needs student's special education plan.

3./ Where at all possible special needs students should be part of a regular class for at least a portion of their day under the supervision of a TA when required due to behavioural issues.

4./ Those students with intellectual difficulties would have a modified education plan that would focus on making them as independent as possible while allowing them the ability to learn as much as possible of a normal school criteria.

5./ Those students who can not handle a classroom situation (they do exist but are fewer then some would like us to believe) would be taught to the best of the student's capabilities to keep as close an education level as students in their own age group as possible and including them in things like art, gym, music and library with a standard class where the student is capable of handling this.



During the debates over this issue in the last week I have monitored not only the discussions of those completely opposed to inclusion but also parents of special needs students who were dealing with specific issues and have put together a plan that best meets the needs of as many people as possible. That plan as outlined above includes, in basic terms, integration when at all possible with special attention paid to stemming issues proactively instead of reactively and therefore avoiding violent outbursts and disturbances

So we are soon to be starting the summer. A period in which my wife has full intentions of doing everything in her power to increase our son's ability in speech and writing and we will monitor and hopefully curb some of his violent tendencies when upset.

My wife is having some incredibly luck in breaking through his speech barrier tho he has not developed clear words they are understandable. We are not at sentences yet one and two words at a time are the best he can do but anything is an improvement over no speech at all.

On the issue of his violence it is interesting to monitor where it comes from. At home we get at most one episode a day and realistically we can usually go two or three days without an episode. At school on the other hand he has the tendency to strike out at least once and often twice a day. Now not all of these episodes are actually rough enough to hurt, but they are of a concern.

What has been my opinion for a while is that where he is in his first year they are trying to get him to conform to "school routine" and my belief is that instead of working on one thing at a time, they are instead pushing him on everything at once and accomplishing nothing but frustration.

Basically we are hoping this summer for a clue that we are right (or wrong) and then move on to working with the school (or on the school as the case may be) to develop a plan that works to continue to move him forward from what we manage to develop over the summer.

Over the years there has been several additions to the autism spectrum that have led to a varying of the belief and understanding of what autism is.
Among recent additions we find amongst others Aspergers and various others classed as PPD-NOS.
An issue was raised in another blog I read that causes me some concerns and it is something that my wife also mentioned. That is the fact that any testing done on autistic children are done on high functioning and/or aspergers children with little or no testing done on severely autistic children and/or non-verbal autistic children.

The problem with this approach is that it leads people to believe that there is little or no concern with what autistic children can achieve as those tested, with some solid behaviour modification treatments, could likely function acceptably if not necessarily excel in society on their own.

What this ignores is that there are non-verbal and/or severely autistic children who will likely never function properly without some form of supervisory care. Now while i do not understand the psychiatry involved in determining who should be added to the ASD grouping and i expect there is some logic to it as far as comparative symptomology there is a problem in that those who are severely autistic are not getting the care needed because of the dilution of the test results.

Basically what realistically needs to happen is testing over a large group of autistic children from the low end to high end of the scale preferably including those who would have fallen into the original autism classification, and with each successive classification being equal in numbers, IE. for every person in the original classification there should be one from each successive classification included in the testing. This testing should include a full battery of tests including full MRI, Full
brain scan, complete blood,urine and fecal testing as well as a complete DNA map and as many other neurological examinations as can be considered.

All this information needs to then be put into a large chart and an attempt to try to see what commonalities occur across this range and use this information to attempt to direct further testing.

A good example of the reason why additional testing is needed can be found in this article in the Telegraph-Journal which mentions the cost of caring for a severely autistic man over the course of a year at being close to 500,000. We need to fix this problem before the number of people requiring this level of care exceeds our ability to deal with it

We are now going to start working on this blog again.

To update the situation at present our son is developing some words, they are not clear but they are definitely there and if you listen you can understand what he is saying or reading as is more generally the case.

Last night he sat with me and read an entire thomas book with only approx 4 words that he did not know and say to some degree of success himself which is quite good from where we started. He still could not hold a conversation and I would never consider him verbal by any means but he is gradually learning the ability to read out loud some of what he appeared to be reading to himself in the past.

What we find disturbing is that almost all progress appears to be made at home with almost no progress being shown at school (they dont see the progress at all, or when they do it is weeks behind what we see) and we find this to be one of the most disturbing issues to us is that we all know that pure and simply he needs to be taught using ABA which we do, but in school the amount of ABA that can be used is limited when he is in the classroom even tho one of his TA's is ABA trained.

As we approach the summer my wife and I intend on working with our son over the summer to see just what we can accomplish and then when we return to school in the fall we intend on watching closely to see what progress they make in return. If necessary we will have to have a meeting to discuss why they cant make the progress we are seeing and how to correct it.

It may seem a bit harsh to those of you who dont have autistic children however when you do you learn to understand your childrens needs and how to adapt to get them to learn what they need as they grow.

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