The System Needs Fixing – NOT the Child!

Angry blogs are never a good idea but in more cases than not totally can’t be helped.

I used to daydream about what life would be like when I’m a mummy, Like most young girls I saw the perfect picture of marriage and children. In conversations with friends, you would always say I wonder what my child will look like and 9 times out of ten you form this picture in your head.

I think we all say we are moving to Spain, well those of us from the UK. We girls create this perfect image of adult life that of course is not the reality we will come to face. I’m in no way stating my children are not perfect because to me all three of them are perfect in every way and I’m incredibly lucky to be a mum.

The point I’m trying to make is we never consider what life would be like with a child that challenged us and our strength to be a parent. Do we ever wonder about the kind of personality they may have? I remember little mans birth and the shock when I discovered he had a mob of red hair.

I will be honest when I state I was upset by this but only because of society and the way people act about red heads. For this reason little man spent his first few days of life with a hat stuck to his head. When my hormones had settled and the shock wore of I was fine. I was only shocked because it wasn’t the picture I had created in my head, Of course I didn’t care what colour hair he had he was my beautiful baby. Little mans red hair was always to blame for his unruly behaviour people would say red hair fiery temper or oh it’s the red in him that does it! We still get that remark! I feel like shouting ‘ NO IT’S NOT HIS BLOODY HAIR IT’S AUTISM’ I was so worried he would be a child who was bullied for having red hair because as we all know kids are crawl.

I used to take him to all the toddler and under fives playgroups in the hope he would have a great social life growing up he would form good strong friendships. He would be invited to everyone’s birthday party or he would be off playing in the park with the other children and I would be sat chatting with the parents. Again reality would bite me in the bum as I was quick to learn I wasnt a school gate mum and little man would often get barred from the park! But regardless of it all I totally loved him with all my heart and always will.

So there is a point to all this reminiscing. Little man like thousands of other children on the spectrum are always being expected to change or fit in with “society.”

They live life with the consent threat of exclusion if it is felt they don’t fit in with the so-called  requirements of  events and activities they are often left behind.

Are you under some illusion that those with Autism & Aspergers don’t feel rejected? It’s the insensitive actions of others that lead our children to the world of depression and anxiety. Every family touched by Autism has a story to tell. Most if not all of these stories are based around parents and careers forever having to fight the system for their childs rights.

I ask whats the point of the Special educational needs code of practice, and the Disability Act if the LEA has no regard to the code? I applied for a statutory assessment of little mans educational needs under section 328 of the Education Act 1996. The Sen Code states the LEA must come to a decision if to carry out such an assessment under section 323 within six weeks. Little mans case was to be brought to the panel on the 15th-Apr-10 though this didn’t happen. I waited a week rang them only to discover it had been delayed and would now be heard on the 14-May-10.

The LEA told me the delay would be explained to me in a letter in which of course im still waiting on. Again the date past and I called this time I was told my request was denied. It’s the 24th-May-10 and the LEA have still not wrote to explain the reasons it is refused and my rights to an appeal. With this I called Ipsea who confirmed that the LEA where clearly not complying with the code. I have written to the LEA and asked them to release the decision and reasons for delay. I have given them five working days before taking the matter further which really gets my back up! Why do I have to go down this route? Its one obstacle after another.  It’s ludicrous that not only am I having to appeal I’m also having to battle for the required information to do so. It’s easy to see that given the pure state of the education system why so many children are left without school placements.

Now yes I am pretty wind up but given the current circumstances who can blame me? In my view inclusion and the whole school approach is pointless if no one is going to take it seriously

Since my last update concerning little man and school things seemed to be up and down, but giving that there were a few positives I was clinging to the hope of a turn around. This hasn’t happened and it’s gotten to the point where I can’t see no clear way forward. It seems that any accomplishments little man has made in relation to school and wanting to go are close to disappearing and all our hard work undone. Now Before I pour my heart out and cry all over my Mac I wish to praise little mans morning TA who I consider to be an exceptional teacher who offers him a great amount of support and even better understanding. His mornings at school are improving and from the conversation we had recently and the comments she writes in his contact book I can only assume she has had some degree of training in working with children on the spectrum and if not then I can only put it down to a gift. He has a great relationship with her and has opened up to her in many ways. On reading his contact book she mentions an outburst he has in class when a teacher talks about the weather being so hot, she goes on to say that to calm down they went for a walk and sat in the playground under a tree. It was then she wrote that after speaking with him it had become clear that the Irritability and anger was real anxiety about the hot weather. I almost cried as for once someone other than me was relating to him and understanding him! Thats all he needs I am confidante that this TA well help my son to grow and over time the behaviour to fade. She is the one person who has taken the time to ask me what I do in certain situations or why he may display a certain behaviour. She is keen to take my contribution on board and happy to try suggested techniques This in itself goes a long way in proving that working in partnership with the parent of the child on the spectrum is extremely beneficial. If this TA wasn’t in class and Little man had this same out burst that involved him being loud, aggressive and dangerously throwing things what would have happened? Exclusion is pretty likely or a playtime missed is another option! Any of these actions would result in further outburst and in addition other punishments. I’m not in any way saying the other teachers are useless! His classroom teacher has over 30 students and it would be impossible to provide little man with this degree of one 2 one support but it’s also the lack of training. How can someone possibly understand if they know nothing about it? A year and a half ago I was ripping my hear out not knowing what to do next and at times still do. I’ve been to a number of classes and workshops, Have created two active social networks and an autism art room and devoted to advocating, reading and researching the condition to better understand my child. But He still brings me a new challenge all the time the whole things a learning game. The system is failing children everywhere all with different strengths and weaknesses. What most forget is just because you are able to deal with the challenges of one child on the spectrum in no way means you will be able to deal with the next! They state our children have stereotyped behaviours but what is this? It’s the same! Just because a child has autism don’t mean his the same as another autistic child of the same age every child autistic or NT is an individual no two children on the spectrum are the same and educational settings should bear this in mind.

I’m pretty sure you are wondering how little man can possibly be experiencing any problems at school given the improvements he has made since working with his TA. Well sadly the TA only works with him in the mornings and once afternoon comes around all that hard work is wasted as little man gets into situations that always lead him into being labeled the disruptive child with the foul language. Since my last school update little man was excluded from his trip and went on to be excluded from school. His on the fifth exclusion since 3rd March this year. There is a week left till half team and if little man gets excluded before then the Head teacher will be forced to meet with the Governors. Since returning to school last Monday he has been placed on a behaviour contract and full-time one 2 one has been put into place. I have no personal dislike to his lunchtime TA and im not trying to blacken him in any way when I say his just no good for little man. It’s with this TA he finds himself in the most trouble. His hit him and called him names and our biggest problem right now is he runs away from this TA which has landed him in some serious problems that I am soon to touch apron. Find a trigger and remove the trigger. Maybe im wrong but it’s looking like the TA is the trigger. Why is little man like this with this TA? Simple little man sees him as a peer not a teacher. Yes he like the morning TA but knows where he stands with her. Yes he also likes the afternoon TA but sees him as his buddy. I just want whats right for little man, yes he has to deal with things better but only if the system operates better. I thank the school for putting all these provisions in place but as my child continues to be excluded and I am still receiving calls relating to behaviour then lt’s clear that the school can no longer meet his needs. So an appeal for the assessment is a must and with them fluffing around little man’s problems are growing.

As for little man running away well its got to the point that this has led to a serious incident in which has caused my child become increasingly stressed over his return to school after the weekend. Little man again has run through the school hall where the After school club takes place and as it was half an hour or less before home time they are busy setting up! BEFORE I GO ANY FURTHER I MUST STATE THAT ALTHOUGH THE CLUB OPERATES AT THE SCHOOL IT IS SEPARATE AND IS NOT RELATED IN ANYWAY OTHER THEN THEY ARE BOTH RUN BY THE SAME LEA. So as little man was running the worker shouted for him to leave. At this point another child who little man loves to play fight with shows up. Now i’m guessing that little man may have shown of a little but also was pretty impulsive when he called her a bitch ( Not good I agree ) With that it is said that the worker said ‘YOUR MUM’S A BITCH’ His friend heard it and shouted something and with this the worker bent down to little mans level and made him feel uncomfortable by how close she came, She went on to say ‘ You can’t talk to me like this I’m not your teacher’ My son may act like his not scared of anything but she scared him. He came dashing down the corridor to find me in the office. He had to be stopped as he tried to run into the Heads office as inspectors were in and having a meeting. He was clearly very upset as he was crying and to me seemed a little shocked. Yes I wanted to go and talk to her but left it to the school staff and tried to do the right thing. Lets not forget this is a school im in and as angry as I was there was mine and other children to consider. Of course she denied it which again brought little man to tears. She claims to of had another adult with her but my son also had another child and it was clear to see he wasn’t lying. Aspies are not good liars and don’t often try to be. I’m upset that after speaking with the deputy head I discover the TA wasnt there because little man run away (AGAIN) I’m also upset that the school refuse to take responsibility  alongside the after school club. They state that although it was during school hours it is the after school club that needs dealing with. However I do have a point that I deem to be strong and worth quoting. A few days prior I received a call at home in the evening from the headteacher informing me and asking me to prepare little man to miss his playtime the following day. The reason was he had run a long the after school club tables and called a member of staff who works for the club a fat pig. It’s too confessing for my child to be punished for something only for an adult of th same club to swear at him a few days later. I now have the challenge of getting him there today. Like it’s not enough. He went to bed crying that he was scared last night and im going to feel awful in these next few hours as I have to insist he goes. How is this fair and why should a child with Aspergers or any child in fact have to attend school fearing an adult. Yes ive explain she only comes at home time but he can’t see it like this yes he understands but can’t get past the fear. So as it’s 5am already and I have not slept a wink regardless of little man having gone to sleep at a pretty decent hour I best finish here and sort myself out. But before I finish I want to take the opportunity to thank everyone for the support and thanks to the readers who joined the groups over on Facebook!

The whole purpose of education is to turn mirrors into windows for EVERY child that looks in one!

Claire Parkinson

A boy with Asperger's

I’m a mother to three gorgeous children, one (my eldest) has a diagnosis of Aspergers