The Worst Year of My Life

This sounds like a rather depressing title for a blog entry but really it's about realising the inner strength we all have inside ourselves to cope when things are at there worst and realising that you can get through it and come out the other side however bad it may seem at the time.

Once Josh got his official diagnosis we started the statementing process. We could have started it earlier had we known how the system worked but we thought the school had to do it and the school said they couldn't start until he had been formally diagnosed. It was either Roz or Claire from the DATA team (autism diagnostic team) at Macclesfield Hospital who told us that as parents you can start the statementing process at any time if you feel your child needs extra help in school or nursery whether they have a formal diagnosis or not. She said we needed to send a letter the the LEA explaining why we thought Joshua needed statementing. She explained that it helps if child in question has a formal diagnosis and if you can get backing from the school too but that isn't absolutely necessary. However as Josh had both then the LEA would be more likely to say yes to assessing him to see if he was eligible for statementing.Now I know some people who have sailed through the statementing process and had no problems at all, but for us it was a incredibly stressful made all the more worse by an un co-operative school and an even more un co-operative teacher (more about her later) Add to that an incompetent, manipulative, unmovable, inexperienced caseworker from the LEA and you can begin to see what we were up against.

I was advised to get in touch with the National Autistic Society and I was assigned a lady called Jo (who is another angel disguised as a human being) she helped me write the letters I needed to write and proof read everything I sent to the LEA to see if there was anything I'd missed or needed amending. Jo recommended that we hire an Independent Educational Psychologist to go into the school and assess what Joshua's needs were in the school environment. The NAS have a list of the Ed Psycs they recommend, ones who kind of specialise in doing these sorts of assessments on autistic kids for the statementing process. They are very professional and will go to tribunal with you (if it gets that far) and will help you argue your case. The one the NAS recommended in our area was fully booked up and couldn't take us on but she recommended another lady called Ann Marie who turned out to be another angel that touched our lives and I think I would have been locked away in the funny farm a long time ago if it hadn't been for her support.

What they don't tell you when you start the statement process is that the LEA have a limited budget for providing help to SN children in schools. So they will go into school and assess your child but then they will offer the minimum amount of assistance and provision they can in order to prevent spending their budget. They will swear until they're red in the face that what they are offering is what's best for your child and will spin you all sorts of stories to support their decisions. If we hadn't had Ann Marie to give us the benefit of her experiences and providing us with the perspective to see it from her side we'd have been brain washed into believing that what the LEA was saying was true. As we'd never seen a statement before when we received the first draft from the LEA to our untrained eyes it seemed fabulous and looked as though Josh's needs were all covered but when we showed that same statement Ann Marie she pulled it to pieces.

For example things which sounded good to me like "Joshua would benefit from access to Speech and Language Therapy" made Ann Marie really mad. She said "yes, he would benefit from it but that doesn't say he has to have it or how often. The SLT could see Josh once a year by that and still be legally fulfilling the statement." Now try and pin the LEA down to changing that sentence to say something along the lines of "Joshua needs to have regular access to Speech and Language Therapy which should be a minimum of once a month" and see how far you get!! In the end, after taking the LEA to two tribunals, I think we got "Joshua would benefit from continued access to the Speech and Language Therapy Service, as deemed appropriate by that Service."

We fought against nearly every written word of his original statement. I lost count of the amount of meetings we had with the LEA to try to agree on the details and how many hours support he would get. In the end going to tribunal was our only option as we'd got to a point where somethings were agreed on but we'd come to a stale mate over the remaining issues and it had become obvious that neither of us was going to budge.

On top of all the stress with the statement and going to two tribunals (the LEA messed up after the first one and we ended up having to go back a second time) we were also having problems with Josh. Josh's teacher that year, we'll call her Mrs. X was an absolute nightmare. Most of the other children in Josh's class found her hard to deal with, so for Josh, she was just the worst teacher he could ever have had. Mrs X would be as nice as pie one minute then shouting and mad as hell the next. Josh doesn't like shouting at the best of times, add that to the unpredictability of not knowing when she was going to erupt you can understand why she screwed him up.

Other things that didn't help the situation were things like:

Josh still didn't have a visual timetable in school even though we'd been pushing for one for over 3 years. Although he had his calender at home which told him what days he was going to school, he didn't have anything to prepare him for his daily routine once he got into school.

Because in year 3 he was now a junior Josh was having to go into school through a different entrance which was around the other side of the school however his classroom was still in the infant part of the building so he had to walk all the way through the school back to the infant end to get to his classroom. This confused and upset him no end and often I couldn't get him into school unless I walked down the corridor with him. Mrs X didn't like that and we ended up having an altercation about it.

When Josh started in Mrs. X's class she admitted to me that didn't have any knowledge or understand of autism and instead of taking the opportunity of the 6 weeks holiday to look into it and research it before having Josh in her class she decided she would wait and "learn through Josh." As a result of this inspired decision (please note the sarcasm here) Josh spent the entire year completely distressed on on edge. He had to be repeatedly taken out of the classroom by his poor one to one on a regular basis each day in order for him to be able to calm down enough to be able to rejoin his class. I think he ended up spending more time walking round the school with his one to one that year than he did actually in it learning anything!

The frustrating thing was that no matter how many times I tried to explain to Mrs X that she could make hers and Josh's life easier by preventing the blow ups in the first place just by providing him with an autistic friendly environment in the classroom, she wouldn't have it and was not prepared to listen to anything I nor Mrs F (JJ's one to one) had to say to her. Mrs X's response was "I already work a 70 hour week! I couldn't possibly do anything more for Josh that what I am doing already" I was so worried at one point because I really thought we were going to loose Mrs F because of the ignorance of Mrs X and the effect that was having on her too. Mrs F was the only thing that was keeping Josh and me going and if she'd left I think I would have gone under. Mrs F is another angel. She was like having a Grandma in school to watch over Josh while I couldn't.

When it came time for Joshua's assessments by the LEA's health professions and by Ann Maire Mrs X didn't like it. She felt these people were judging her too and she made life very difficult for them. She took a particular dislike to Ann Marie and was not only incredibly rude to her, she also refused to allocate any time to speak with her about Josh and then prevented her from spending any time talking with Mrs F who really wanted to help and just wasn't allowed to. I know this really upset her at the time as she felt she had let us down.

The effect being in Mrs X's class had on Josh was devastating. Every day he would come out of school and say he'd had a "Red Day," He would say that he hated school and wished that he was dead. He would then say he wanted me to die so that then there would be no one to take him to school any more and he wouldn't have to go. Josh was a ticking time bomb that year, the slightest little thing would cause him to erupt in a frenzy. He would bang his head on the nearest hard object, he'd stamp up stairs and slam his bedroom door then he would stand behind it to prevent me from coming in but he would continue to bang the door with his foot or his head I'm not sure which. At the same time he would rant about how he hated being part of this family and he didn't think he should live with us because he thought we were aliens and that he just wanted to die so that he didn't have to be part of this world or our family anymore. Now I'm quite thick skinned and I try not to take things like this to heart as I know it's his anger and frustration talking and he soon changes his mind once he's calmed down but I still find it heart breaking to hear, it's not something you expect a child of 7 to say no matter how bad their day has been and I just want to take it all away from him but I can't. What really upset me and frustrated me the most was that it could all have been avoided if his teacher had just taken the time to listen and put into practise what people were telling her.

Even when the statement was all sorted (2 tribunals later) and all Joshua's needs were being addressed in his statement, I still had no power to make the teachers carry it out. I doubted that Mrs B even read it let alone made any attempt to change anything she was doing to comply with his new statement. It was a very hard, upsetting and frustrating year for us all and one I never wish to repeat.

Luckily the year after that Josh had the most fantastic teacher in the world ever. After Mrs X, Mrs S was a true gift. I lost count of the amount of times I told her I loved her and I think her husband was getting rather worried by the end of the school year! :-) The first time was when she told me that she could tell when Josh was starting to get worked up about something and all she had to do was lean over him and a piece of her hair would fall forward. Josh would notice the hair and start playing with it and he would calm right down. It was something so simple and yet it made a huge difference to Josh. I could have kissed her! But instead I just said "I love you" Both Mrs. S and Mrs. F couldn't help laughing me, but it was just lovely to hear that Josh finally had a teacher that understood him and could read him and knew how to defuse him before he'd even realised himself that he was getting agitated. Mrs S gave me back my son and made me realise the difference a good teacher can make by doing "nothing much really" (her words) other than taking the time to understand about autism and I will always love her for that.