Archive for the ‘ Autism ’ Category

For over a year there has been a blog post I have been avoiding mentioning. The reason is that in all honesty, while the situation was bad, I had hoped not that the people involved in the issue would have learned from their mistakes. Instead what appears to have happened is that the lesson has been ignored, the reason for the lesson was ignored and the fact that I completely blew a gasket has been emphasized with all relevant information to the issue being left out. The time has come to clear the air, that became evident as I have watched people pull away from our family who would have ordinarily stood solidly behind us if they were aware of the actual facts.

Our son during his kindergarten and grade 1 school years, was a student at Lou MacNarin school in Dieppe, NB a suburb of Moncton. Prior to his going to school, because of his autism, we had seriously considered keeping our son home and doing home schooling. The principal at the school at the time convinced us that they had an incredible special needs program and that all of his needs would be cared for.

The initial reasons for our leaning towards homeschooling was because, with his autism our son had behavioural issues that could create difficulties in a classroom environment and in addition had not taken to toilet training either. The principal at the time and the vice principal as well both assured us that not only did they have the facilities to deal with him, they also had some of the best TA’s available. So, against our better judgement we decided to allow our son to attend the regular school system, because we felt that if they were capable of dealing with him, then the access to the social environment would be extremely beneficial to him.

From a purely social aspect our son did not do that badly. He was instantly befriended by some of the girls and this has been an ongoing thing since, he has always had children who took a friendly interest to him. The school was informed by the autism center who was working with him prior, as well as by the psychologist that saw him as part of the initial diagnoses that at all times he was to be completely monitored and that he was a serious flight risk. This was something that was continually brought up as a reminder to the school during all meetings.

While his kindergarten year was marked by a repeated change of teachers (3 teachers in one year) something that is not a great situation for an autistic child, he was handled fairly well by the two TA’s who monitored him. The only concern we found was that he was being pushed for conformity on to wide a range of school routine items to quickly and was not picking up any of them with any real success.

During his Grade 1 year was when things started to drastically deteriorate. TA job action curtailed his inclusion in some activities that he normally would participate in and this brought increased behavioural issues and also increased pressure by the TAs to meet “classroom routine”. During several meetings we brought the issue of the fact that we felt reducing the number of items being focused on would allow him to complete some of them and then we could move on to others, however we were told that they were all to important to slack off on any of them while they worked on others. As well there appeared to be a reduced attempt to make sure he was cleaned up after lunch or breaks and the longer the year went on the less the effort to clean him was used.

During this year we also started to see a trend with the TA’s. Remember we said earlier that our son had not taken to toilet training properly, by the start of grade 1 he had gotten to the point where he would use the washroom properly for urination, however he did not use it for bowel movements, from what we could see he did not appear to even realize that there was a bowel movement coming until it started. Repeated work both at home and at school had not alleviated this issue and a trend started to develop where any time he had a bowel movement in his pants, the TA’s would give him a quick clean up, change his clothes and then send him home saying he was sick and needed to be off for a day or two, refusing to allow him back for at least a full day. The excuse used was that his bowel movements were soft, however as we repeatedly explained to him, this is something that had been a fact of life for us from the day he was born. At that point we probably could count on one hand the number of solid bowel movements that he had, in his entire life. Soft bowel movements have been discussed many times in various sources as being common amongst those with autism, however this was dismissed by the school with an absolute refusal to allow him to return for a full day after any bowel movement in school. This behaviour by the TA’s increased over the year until one day early in the new year, when it was still quite cold outside, we were called and told that he was dirty, they were not cleaning him and to come get him. We got to the school to find that he had been stood outside in the cold with his TA in this condition for the 20 minutes it took for us to cross town. It had sit for so long that by the time we got him home to give him a bath it was completely dried on his body.

This created the first screaming match with his resource team, where they proceeded to tell me that not only was it not their job, but that they did not have the facilities to deal with cleaning him up. Immediately after this I called Jody Carr and his office directly, who were quite good with us and put quickly in touch with the special needs person for district two Allan Marr, who proceeded to say that not only was it their job, but that the school actually had a shower stall set up specifically to deal with this type of situation. Repeated calls from the district to the school did little to alleviate the situation with the school saying that it would be fixed, while in meetings held immediately afterwards we were told that they would call US and hold him inside where we could clean him up before (you guessed it) we took him home.

It was at this time that we started to hear other issues arise as well. He was hitting, biting and otherwise mistreating the TAs and had been doing so for the past two years. Keeping in mind that he is in grade 1 and is 7 at the time and that he is autistic, we did not question the fact that this behaviour was likely happening. What we did question instead was why after this amount of time, it had not been discussed in his daily communications log (a log sent home daily with special needs kids by the TAs to keep the parents apprised of their progress and their behaviours). We also found out that he had been running regularly at the school often escaping the classroom or on the playground. We were also told by the TA that she was not chasing him as he enjoyed the chase. While he does enjoy the chase, we are talking about allowing a 7 year old who is a major flight risk, the freedom to run until the TA in her walking around looking for him actually caught up. Screaming match number two, this is a huge safety risk and he has not only demonstrated an extreme interest in running but is starting to learn that if he does no one will chase him.

We also found out around this time that weights were being used on his hands to attempt to hold his hands to the table so that he would write (he does not handle restraint well) as well as on his ankles to stop him from walking on his tiptoes (which did nothing but make his legs stronger and he still remained on his tiptoes). The resource team also were giving us issues over using ABA at home to teach him as they did not want to use ABA in the school setting to the extent that was required to get him to achieve a task, instead preferring simple reward and punishment (denial of activity) style of teaching which we had told them was generally ineffective with him. They believed that it was our duty as parents to follow their method’s instead of methods that had been proven to work with him over the previous two years of preschool ABA therapy.

We finished the year, hoping against hope that the new school year, with the labour disruption settled and perhaps even a different TA would leave our son in a better position and that he would start to progress. How wrong we were. Very close to the start of the new school year, less then a week till school started, we were told that not only was our meeting with the new teacher and the resource team cancelled but that in fact there was not going to be room for him in their school that year. Now while he was an out of bounds student, this was done at the agreement of the district and the principal when we first enrolled him in kindergarten so that we could ensure a single consistent school experience for him over his elementary/junior high years. This created a huge screaming match where I made absolutely certain that his resource team and the principal were made completely aware that I knew, regardless of their attempts to hide it, that this was in direct response to me involving the district and the province when he was being abused and neglected by his TAs the previous year.

Calls to the district and the province were unsuccessful, not because they did not try but because the school absolutely refused to budge, they had no interest in our son continuing at that school because they were not happy that we went over their heads to resolve the abuse our son was being put through.

Due to the late notice, we were not only forced on very short notice to completely rebuy all school supplies for both our son and his sister (we had to move her not because the school insisted but because it is physically impossible for me to be in two places at one time to take them both to school). We were also forced to hold our son back from the start of his school year for three days because you can not just dump a special needs student who requires a full time TA into a new school without getting resources allocated by the district and approval to bring in a new TA as well as actually finding one.

After a year at the new school there is no complaints. Our new TA at that school was an absolute blessing, his resource team actually listened and dramatically reduced his specific goals that had been worked on for two years, and completed goals that had not been done for two years, in a total of 6 months including us all together finally completing his potty training within the first 3 months of the school year.

It is my sincere belief that it was the actions and choices of his TAs at his old school that not only significantly increased his negative behaviour but resulted in such poor progress of our son for his two years there. His new school made all the difference and while I still believe that he was removed simply because we as parents stood up against the abuse he was suffering, in the long run we are pleased with the end result we achieved.

This story will be cross posted on Living With Autism: A Parent’s PerspectiveCarl Bainbridge as well as on Raindrops and Sunshine

The “Wandering” Designation IS Necessary

Ari Ne’eman Says No to "Wandering" designation

 

Once again an “autistic” adult who fully functions in adult life has weighed in on a situation that, if he is succeeds, would negatively impact the lives of low functioning autistics all over North America.

 

The CDC has finally in it’s all encompassing intelligence finally decided that a wandering designation should be used to help identify those children with a propensity to wander away from safe surroundings.  This is something that has been necessary for decades and is part of the reason for an organization called Mason Allen Medlam Foundation for Autism Safety and their program called "Mason’s Alert" that I discussed in November This Program which realizes that autistic children wander, and that wandering autistic children head for water, aims to create an alert system that would have police properly direct their attention in the case of a missing autistic individual, instead of following normal search protocols that do not work for autistic children.

 

The wandering designation makes it more likely that an alert system of this form could be created, by showing a clinical definition that would make this change in searches easier to accomplish. Lack of this designation helps support police’s attempts to stick to a standard definition search.

 

What really is annoying with those like Ari Ne’eman that work so hard to destroy the work that we do to get programs and systems in place to protect our children is that he is really no different then me. When i was younger (and using today’s standards) it would have been no difficulty for me to be classed as mildly autistic, though i generally don’t suffer any of the issues of this designation today. What this means is that someone who is fully capable of leading a full and productive life is speaking out against programs and designations that are desperately needed for those with the same disorder but many magnitudes worse.

 

Once again we are going to have to hope and work to make sure that Obama’s chosen autistic representative does not damage the great works that are being accomplished in setting new standards that help protect autistic children from being natural victims to the world around them.

While we still need to have the issue clarified for certainty, rumour is suggesting  that the new CUPE 2745 collective agreement for TA’s forgoes the needs of the child in favour of protecting the seniority of the TA’s

What all parents of special needs children need to do is to verify that the TA who will be assigned to their child is a TA is who trained to suit the needs of the child. The next step if this is not the case is to request that a properly trained TA be made available.

If we as parents of special needs children are ignored in this way then the parents of special needs children need to start to remove their children en mass from the the schools in New Brunswick until such time as the union, the province and the school districts realize that properly trained TA’s are the required norm for this province. If senior TA’s are not properly trained then they should be paid to return to school to get the proper training.

 

If we as parents pull all the special needs students out of the classroom there will be no more students for the TA’s to assist with. If there is no more students for the TA’s to assist with then there will be no jobs for them.

 

And no Sandy Harding this deal is not about “You” it is “About the Children” contrary to statements that have been attributed to you during the negotiations

American Attitudes on Autism are Disturbing

Autistic Black Man Sits waits for a library to open and ends up spending 10 years in Jail 

 

An Autistic Black Man who went to the library to early and sits on the grass to wait for it to open ends up with someone calling 911 reporting a Black Man with a gun. Because the officer who arrives to talk to him misjudges the situation so badly, The Autistic individual is instead looking at a 10 year jail sentence for assaulting a police officer.

 

The officer involved does have a 33 year old mentally handicapped child however he still managed to miss the signs of autism so badly that he ended up manhandling the Autistic to the point where the officer ended up injured when the autistic individual responded as any parent of an autistic will tell you is likely to happen in this situation.

 

I have two problems with this. 1/ The individual had 911 called while he was sitting on the grass reading a book waiting for a library to open. This was nothing more then pure and simple racism. That was continued by the officer who arrived and without properly assessing the situation reacted as if this was the case.

2/ The officer involved even though he had a disabled child of his own, was so out of touch with autism that he misjudged the situation so badly that without evidence of wrong doing, he manhandled an autistic which any autistic parent is going to tell you is going to end only one way. With a physical confrontation.

 

We need both in Canada and the US (and likely Internationally as well) for all police officers to be trained in the proper methods of dealing with mentally ill individuals (including autism). While we repeatedly here that police officers are not physiologists’ and psychiatrists we really need them to become those. This is because the institutions that would house those who are unable to care for themselves (and are to much of a risk to be on their own) are being removed more and more in favour of inclusion and that inclusion is causing way to many mentally ill individuals to be sent to jail because the facilities that they need to function are no longer available to them.

 

We also need the government to realize that with approx. 1% of newborns being diagnosed with autism at some point in their life and that number growing quickly, we need facilities available to treat and provide therapies to all autistic individuals until such point as they are fully capable of integrating into society to such a point that they are no longer a threat.

 

What is the most supreme tragedy of this situation is that an illness that is believed to be inflicted by the pharmaceutical companies in conjunction with the government, by forced vaccination programs that not all are certain are safe, is leading to the government throwing them in jail for something that they realistically have no ability to control

 

We as autistic parents need to stand up and demand accountability from them.

Action is presently being taken in the US to attempt to have a new designation put in place on an alert system.

 

Unlike an Amber alert which is used in kidnapping cases where it is believed that the child is in imminent danger, Mason’s Alert is aimed at having public looking for a child who has wandered away.

 

The issue with autistics wandering away is extreme. The reason is that 92% of autism cases are believed to be prone to wandering and the major issue being that Autistics generally do not feel the same dangers that normal children would feel.

 

In our case, our child has wandered in the past, our child unlocked the door and walked out in bare feet playing a handheld video game. He wandered down a gravel driveway, across a street down three blocks to a major street and was picked up by a passer-by wandering down the yellow line. The passer-by called the police just as my wife was calling the police and we picked him up a few minutes later. However at 6 years old non verbal and without fear we spent a frantic 15 minutes searching the house and neighbourhood before calling the police and yes we were freaking. But we got lucky. In many cases these children are not always so lucky. Many autistics are attracted to water and most show very little fear. A large number of autistic children have been pulled from neighbouring lakes and swimming pools and in some cases police were slow to respond because the child had wandered and was considered likely to return on their own. With autistics this is never a guarantee and not a chance we can take.

 

Canada also needs to look into a Mason’s alert system that would quickly and instantly broadcast details of a wandering autistic child. We need to protect them because so often many of them cannot protect themselves.

 

I am going to place a link here to Mason’s Alert but please follow this link with caution what you will see there will break your heart as it is not filled with feel good stories but a list of those who have wandered away with drastic consequences. You will quickly understand why a system like this is needed for those who do not fall under the Amber Alert program criteria