School.

This is Isaac on his first day at school. Isaac started school in September 2011. There were lots of preparations made to help his transition into school. As soon as the place at school was offered there were meetings to decide what needed to be in place to ensure a smooth transition.  The children were split into 2 groups, one group did mornings until 12 the first week and then afternoons until 3.15 the second week, the other group did the opposite so that only half the class were in at a time, on the 3rd week the whole class did mornings until 1.10 and then they all went full time. It was decided that it would be best for Isaac for the first 2 weeks to stick to mornings for both weeks to stop him becoming confused, then we could assess the situation and decide whether we felt he was ready to cope with the slightly longer day and then full time, it was thought that he may need a longer transition period.  As it was the first 2 weeks passed without a hitch as did the third so it was agreed that he would start full time with his peers. The week before half term was when the problems started, he was crying and screaming going into school and when he came home he would have frequent meltdowns. This, I was told was not uncommon and was likely because he was tired and ready for the half term break.

After half term things did not improve and I would frequently have to drag him into school kicking and screaming. I would struggle to get him dressed in the morning, he did not want to put his uniform on as uniform meant school and school was not something he was happy with. On the days I did manage to get his uniform on he would take it straight off and throw it in the bin declaring "I hate school!" One day, after the third or fourth time of retrieving his uniform from the bin I decided to just get him dressed into his own clothes, time was getting on and I had Alice to get to school, I didn't feel it was fair for her to be late because her brother was playing up. He was quite happy with putting his own clothes on as in his mind this meant he wasn't going to school. I hid his uniform in my bag with the intention of getting his changed when we got to school. He happily walked his sister to her class and then realised that I was heading for the front door to take him in. His mood changed in that instant, he was screaming at me, begging me to take him home. Needless to say, the trick of putting him in his own clothes only worked once and from then on we reverted to battle stations most mornings. The drive to school was interesting too, I would often be driving and have items of clothing or shoes thrown at me as he desperately tried to undress himself. On day I had forgotten to put the child lock on his door and he opened the door and tried to get out of the car as I was driving. He would attack Alice and take his frustration and fear out on her and she would often arrive at school bruised and scratched. Even when we arrived at the car park I still had the unenviable task of tring to get him out of the car, across the roads and into school.  It's hard to describe just how difficult that can be but Isaac is incredibly stong and very fast when he is in that state. I am thankful that we have a mobility buggy for him or there really is no way he would have got there. I would wrestle him into the buggy whilst trying to ignore the stares of those around me then hot foot it as fast as I could before he managed to get himself free of the buggy and try to escape.

Even though he was going into school in this state I was reassured that he was fine once he got there. That didn't ring true however as he would often descend into meltdown before we had even reached the school gates on the way home.  Pretty soon I started to dread the pick up as well as the drop off, as time went on I would be 'that parent' the one who was left standing whilst all the other children were let out so that the teacher could 'just have a quick word.'  At this poing I asked whether the paperwork was ready to be submitted to request statutory assessement. I was schocked to be told that there wasn't enough evidence and as Isaac was a bright boy it was unlikely that they would agree to assess let alone issue a statement. I couldn't believe it, here was my little boy struggling and they were telling me that there was no help for him. I raised my concern at the next CAF meeting we had and I was told that as it was the final term and Isaac would be going into year 1 things would improve. I was assured that children with ASD find the lack of structure and the amount of choice in reception difficult, it was thought that the structure in year 1 would suit him better and that things would improve.

In September 2012 Isaac started year 1 and for a few weeks things did improve, maybe they were right, maybe the structure and the work suited him better. Sadly it proved to be just a honeymoon period and soon I was back to dragging him into school and being that parent again at the end of the day. I used to go into school as a volunteer and read with children in the library area. the library area was outside Isaacs class and I could hear the noises he was making, tell tale signs that he was overloaded and needed a break. I tried speaking to his teacher who said he was fine and it was probably that he knew I was there that made him do it. One day I was in and I could hear the tell tale sounds of imminent sensory overload and then he went! I could hear his screaming and shouting, the TA walked out the classroom with a face like thunder to get the head teacher. I could hear my little boy sobbing and could do nothing, I wasn't allowed to help him, I wasn't allowed to give him that reassuring hug that he needed and it broke my heart. Shortly after that I stopped going in, I couldn't sit there and listen to that, it was just too hard. After all, I am his mum, the very person who is supposed to protect him from hurt and yet here I was taking him to the very place that was causing him such upset every day.

At my next meeting I laid it on the line, either they would be applying for the statutory assessment or I would. I didn't care whether they felt there was enough evidence or what his chances were, it was being done. School agreed to do it but told me that in their opinion it was unlikely that he would get the statement. The paperwork was submitted, now for the 26 week wait.  

During the last term of year 1 Isaacs behaviour escalated and he was spending increased periods of time outside the classroom with a TA. Although this wasn't ideal as he was missing out on teaching time it did mean he was calmer and happier and we had fewer problems trying to get him into school.  I was a little surprised then at his transition meeting for year 2 when I was told that for the first term back the school proposed to pull back his support. The reasoning behind this was that historically (the last 2 years) he had always settled well for the first half term so if expectations were set early for him then it was felt he would rise to the challenge and cope without the support.  I wasn't so sure but as I said in my previous post I am not very good at confrontation and I didn't want to rock the boat and have a negative relationship with his school so I agreed.

Before Isaac returned for the beginning of year 2 he was displaying signs of anxiety, I emailed the head teacher and she agreed that for the first few days or weeks (however long it took) Isaac could come into school via the front entrance to avoid the noise and crowds at the class doors. On the first day he came home and literally exploded, he said he didn't know how his chart worked and he couldn't find his visual time table.  I mentioned this to his teacher the following afternoon and she said that he had been absolutely fine at school and seemed perfectly happy. By the following Tuesday (Day 4) I was back to having to drag him into school, he ran out of the classroom and was pulling all the coats off the pegs and throwing them around the cloak room, the head teacher told him that if he didn't clam down she would have to ring me to come and collect him. That was definitely the wrong tactic to take because his response to that was "Good, I hate this place!" Eventually he calmed down and joined in. The following morning I took him in, he didnt kick and scream he just stood silently looking at the floor with tears rolling down his cheeks. To be honest that was way worse than the screaming. I actually felt like I had destroyed him by taking him, like he had given up,he knew that no matter how much he protested and begged I would still leave him.

That was the day, the turning poing where everything spiralled completely out of control. Ironically that was the day that Phil and I were going to look around a special school for him (although we were told at that point it was highly unlikely to be agreed to). I had a phonecall from the SENCO that morning to say that they had had a meeting and decided on a new structure to help get Isaac into school in the morning. They had spoken to him and he had said he didn't like the noise and he couldn't sit at his desk because he felt trapped. His desk was moved to a place of his choice. Things seemed to be sorting themselves out at last.

Phil and I went and looked around the school, I went in thinking that I would love it and set my heart on it but thinking that I would have to convince Phil, he has struggled to accept the whole autism thing and I think he just thought it was a phase that Isaac would grow out of.  In reality it was the other way round. Don't get me wrong, the school was great, it seemed perfect in a lot of ways but I spent our entire journey home going through every possible reason why he shouldn't go there. We arrived home to find that Isaac had totally lost control at school, he had turned table upside down in the class, thrown chairs, destroyed displays and damaged property, the rest of the children had to be vacated to the hall for their safety. Isaac had been excluded, I was devestated. I felt ashamed, like everyone was judging me and my 'naughty' little boy.  The following morning I had a meeting at school to discuss how we could help Isaac, he was put on a ladder of inclusion starting with just 1 hour a day and gradually building up if and when it was felt he could cope. I felt like I was doing a walk of shame twice a day, like all eyes were on me, everybody knew what he had done and although none of the staff made me feel that way and many of them went out of their way to tell me how sorry they were I still felt that way.  Some of the parents were not so kind however and I had to listen to them whispering about what a horrible child he was, how upset their child had become and how children like him shouldnt be allowed in school.  I honestly don't think I stopped crying for several weeks, just as I thought I had stopped I started again, I had realised at this point that heartache was an actual physical pain, not just a feeling. It was awful. I seriously considered completely removing him from school, I was watching my little boy become a shell of who he was, school was destroying him.

During this time I was thankful for the people around me who cared. I haven't spoken much about my faith and I will go into more detail another time. Needless to say that God has placed in my life some truly truly wonderful people, people who although I felt I barely knew heard about my situation and phoned me to ask could they help. People who offered to take Isaac for an afternoon so that I could get stuff done whilst he ws still on reduced hours, people who took me for coffee, listened to me, prayed with me and for me. The Sunday after Isaac was excluded from school I honestly did not want to go to Church. I don't know why, after all, Church was the one place I knew people understood, I knew no one judged but I wasn't sure I would be able to face it.  I did go though because I had told someone that I would so didn't feel I could back out. I drove there and sat in the car trying to compose myself. Eventually I got out the car and walked in, the first person that spoke to me reduced me to tears, all he had said was "Hello, I'm glad you made it." That was enough, I ran into the toilet and hoped I had managed to do so unoticed. I hadnt and soon I was surrounded by lovely people hugging me, praying for me and telling me that things would work out.  Now don't get me wrong, I know that God has a plan for each and every one of us and I know that his plans are all for good and not to harm us but just at that point I couldn't see how or why this was happening. I went into the meeting and couldn't bring myself to join in the worship, instead I stood at the back with tears rolling down my cheeks. The preach that day felt as though it was written for me. The words spoken were as though the person writing was writing specifically for my situataion, it was about endurance and finishing the race. About how in the Tour De France there is a team of people around each and every rider who help them and support them. They can't run (or ride) the race for them, but they can help, it is an endurance race, a bit like life where you cannot run it alone and if you try, you will fail. You will not complete your race. I then realised that I had a team of absolutely amazing people around me who had been place there purposely to help and if I was to get through this leg of the race then I needed each and every one of them. At the end I found myself sharing at the front what was happening and how God had spoken to me through the preach and how we just need to put our faith in him and believe that things will work out. People came up and prayed for me, told me I had been on their hearts and how they would continue to lift our family up in prayer.  I'm not going to lie to you and tell you that from there on in it was all plain sailing because it wasn't and I'm not going to lie to you and tell you there weren't times when I doubted Gods intentions because there were, several times. There were times when I couldn't bring myself to pray because it just didn't seem to help, that is when I was thankful for my Church family around me who never gave up.

The Educational pshycologist came to see Isaac and sent her report along with paediatricians and other people. I found myself ringing the Statutory assessment team regularly. I was told that the draft statement would be issued soon, I asked whether this meant that he was getting a statement and was told that in principle yes, but it could be a statement with no hours ( a notice in lieu) I was beside myself with worry, how could this happen? Isaac was permanently outside the classroom now and only just back in full time (after I refused the ladder of inclusion any more). One day I phoned up as I was told that his draft statement would be issued by a certain date and it hadn't arrived, I was told that whoever gave me that date was mistaken and shouldnt have done so. I was funing and send an e-mail to his caseworker (who I could never speak to because she was never in the office). The following day a phonecall from school telling me I needed to go and collect Isaac as he was being excluded again, unfortunately for his caseworker she rang me straight after I had taken that call and was on the recieving end of my anger and upset. She was however very lovely and agreed to set about issuing the draft statement as soon as she could, she couldn't however tell me what resources he would get as it was a panel decision and not hers although she doubted very much that it would be a zero hour statement.  A week later (in half term) the draft arrived, typically as it was half term I couldn't get hold of anyone to speak to and couldn't make head nor tail of it. After half term I was told by parent partnership that it read as though they were looking a specialist provision although it was a panel decision so we would have to wait.  I was told Isaacs statement was going to panel on 11 Dec when a decision as to where he would go to school would be made.  I found out a few days later that his statement had not been sent to the shcool we had named but it had been sent to my daughters primary and a school that we had specifically said we would not send him to especially as I had already removed my daughter from that school because of its failings.  To say I was fuming is an understatement, I rant the Statutory assessment team up and told them I would complain to the director of childrens services. The manager of the team called me back and by way of an apology told me that she would pull Isaacs case forward to be heard by the panel sitting that week. So that was it, in 2 days time we would know whether or not we would have to appeal. My little boys future was to be decided by a panel of total strangers.

So once again, being the control freak that I am, I took matters into my own hands, I rang the paediatrician who had agreed to write a letter supporting our request for specialist placment and asked her to email it to them as a matter of urgency. Thankfully she is a really lovely lady and did it straight away. I wrote a letter to the panel myself detailing our reasons for wanting specialist palcement. It was a letter from the heart in which I told them the the decision to name a special school was one of the hardest I have ever made. After all no parent 'wants' their child to go to a special school do they. We all want our children to fit into society and its norms.  I described how I felt Isaac was a square peg trying to fit into a round hole, it can be done, but in doing so you damage and break the peg and this was what was happening to my precious boy, how he needed a place where he could be Isaac and not Isaac with ASD.  That day was honestly the longest of my life as I waited and waited for news, I rang the team at 5 oclock to be told that the manager who is the only person who knows the decision was out of the office but she had promised to email me that night. By 10pm no email and I went to bed. I couldnt sleep, I was angry that she had promised to email and tormented that she knew the decision about Isaac and I didn't.  At 6 am I checked my emails to find that an email had been sent just before midnight. specialist provision had been agreed, his papers were to be sent to the school we had looked around. I think relief and reality hit me all at once. it was strange, the relief that we wouldnt have to fight any more mixed with the reality of special school was immense.

In reality I didn't feel like celebrating, I still wondered whether the special school was right for him, or even if they would take him. It is an independant school so they have their own admission criteria. He would need an assessment and that was set up for after the Christmas break. Assessment day came and despite complete gridlock on the roads we made it. I felt sick, I still didn't know whether this was the right place for him, I felt as though with the exclusions and everything else the decision had been taken out of my hands.  We stayed with Isaac for the first part of his assessment and I'm very gald we did. As we walked around the school and visited the class he would join if he was offered the place I could see that it was perfect for him, I saw other little boys just like him with their special comforters and chewy tubes. Children with head phones. Each child had a workstation and everything was so geared up to help him be an individual. We were sent off for the second part of the day and whan we returned we were met by a very excitied and enthusiastic little boy. He had completed all the tasks set and had luch with the other boys in his class. He joined in a lesson and when he was given the option at the end of the day to either play on the trampoline or join the class, he chose to join the class. This was just amazing, he had not been part of the class for almost a year and couldnt even set foot in the class without panicking, yet here he was choosing to join in.  We were told off the record that it was felt that he was perfect for the school and the school for him and that an offer letter would be sent. That official offer letter arrived 3 days later, the LA agreed, transport was sorted and 2 weeks after his visit Isaac started his new school.

So here we are, just over 2 months down the line and he is thriving, he is happy and enjoys school. So far he has had a bus trip as part of his transport project, he has been to Duxford. He has celebrated world book day where he agreed to dress up!

He has visitied build a bear workshop as part of a topic on toys. They have had a science fair in at school and a book fair. He is accessing the whole curriculum now and is in class full time, he has friends who play with him. On his first day he came home covered in mud. Isaac has never come home covered in mud and I used to listen to other parents as they told their children off for coming out of school muddy and think that I wish Isaac would come home muddy because he had been playing with other children. Now he does and it's wonderful, it is actually amazing that he gets muddy through playing with other children. He wants to go to school and got very upset one Friday because he had a hospital appointment that over ran and I didnt think he would make it back to school. Don't get me wrong, he still has his moments when he doesn't want to go but they are getting fewer and further between. Right now I feel like I have my Isaac back, he smiles much much more and several people have commented on how much happier he seems.

It was a heck of a fight and a long journey to get him into the right school, there were times when I felt like giving up, when it all became too much but I am so glad I carried on fighting. To see him happy and thriving at school is just amazing and as hard as it was, I would do it all again if I had to.