Thursday 16 February 2012

Not Going Out

My boy is getting on really well with his new tutor, they are slowly but surely building a good rapport and making good progress all the time. They have started to work on subjects within the ciriculum and his tutor is very impressed. He is amazed that a child who has been out of school for so long is still ahead of his peers in many subjects. My boy seems to have a knack for just absorbing information and remembering it. Apprently the tutors job is also to try to get him back into school, but despite many attempts and copious amounts of encouragement it just isn't happening. However when he is happy and at home feeling safe they can cover lessons quickly and easily with his answers being thoughtful and mature.

We have been to another review of how things are going and even though his SENCo felt he hadn't seen any progress, ie he's not attending school, everyone else was most pleased as he's engaging in his lessons and actually learning! So much so that they suggest he choses his options (just incase he does return) and start studying with a view to taking a few GCSEs. Oh, and the emphasis is no longer on getting him to attend his school but just to get him out of the house. That should be interesting as my boy does not enjoy going out. The sensory side of things takes over when out and about not to mention the unpredictability of things and expectations required of him. All trips are a complete nightmare for him and his anxiety levels go through the roof.

Having said that tomorrow he's having his haircut, it's all a bit too hair bear bunch at the moment! Haircuts are a major sensory nightmare which he can only cope with when he feels completely ok so they are generally only attempted during school holidays when he has nothing else to stress him out. It also helps that he has gradually over time built up a real trust in our hairdresser, who's is absolutely amazing with him. Not to mention super fast with the scissors!

After that I'm hoping he'll feel ok enough to visit my parents for the afternoon, but we will see. Two outings in one day may be just a bit too much!

Thursday 2 February 2012

Cobwebs and Neglect

Oh dear I appear to have been neglecting this blog somewhat and it's about time I brought it up to date. This may be a long post....

Well, things with my boy went from bad to worse as his stress and anxieties took over again. Everything started to become a bit too much as my husband needed my car as the company van was no longer his to use. This impacted on my boy severely as he has problems walking due to his hypermobility and sensory issues plus it's quite a walk to the school. I was trying to compensate for this by booking cabs to get him there and then let him walk home at his own pace after his lessons. But he was too distressed thinking about the walk home to cope with his lessons, not too mention the distress caused by cabs turning up late or getting here early and therefore getting to the school early and having to wait there. Eventually it all proved too much and he had a huge regression, shut down and refused school.

My mum kindly offered to buy me a secondhand Ka so I could get my boy to and from school and generally out and about, as by now he was refusing to leave the house as well. I certainly can't afford a car myself as due to the credit crunch/recession/whatever you want to call it my husband's own company collapsed and we were very short of cash. (Luckily he had found another job but it didn't pay any where near as well as previously). I gladly took mum up on her offer. Sadly it was already too late. I tried so hard each day to help my boy back to school but the anxiety and stress of pretty much going back to square one has taken it's toll and I was only managing to get him in occassionally each week and even then it was a huge struggle with meltdowns and panic attacks. It's so distressing to see him in this state.

A meeting was called at the school and various professionals turned up but no one had a decent suggeston other than I must get him into school more! Hmmmm as if I didn't know and hadn't tried that. The meeting was worse than useless. It was agreed I would keep trying and we would review the situation just before the summer holidays as that would give them chance to think of a solution.

The next meeting arrived and low and behold no improvement and oh yes they had no solution! No extra help or support, nothing! By now the only support we had was a Child Psychiatrist who visited once a quarter to review my boys medication. That's despite the fact that although his diagnosis is Asperger Syndrome (An autistic spectrum disorder) along with hypermobility and sensory processing disorder is techically considered by some quarters to be a mild version of autism, he is actually classed by the local education authority and his psychiatrist to be SEVERE! But there is no Occupational Therapy input for his sensory and hypermobility problems because there are no resources. If he has their expertise his sensory problems could be helped by their input and therapies. There is no other help from CAMHS (Child and Adolescent Mental Health Service) other than to medicate because of no funding despite the fact that someone needs to help him with his anxieties and fears as to why he can't cope at school, even though he WANTS to go. As for the school the SENCo offered to visit him at home to talk it over but when the came all they did was say you must attend! Not much help there then.

So it was decided to meet again in the new school year in the hope that maybe with it being a new school year things would improve!?

September came and he managed to attend his lunch club for the 1st 3 days at which point he was given a timetable with only one accessible lesson next to a lunch club slot, the rest of the lessons were all over the place which would mean going back and forth a few times each day, which considering he was struggling with just once a day, was ridiculous. Not suprisingly he just couldn't cope. All weekend he was extremely distressed and only managed to go in for one day the next week for a lunch club. He agreed to go in the following week for a lunch club and a lesson but just couldn't do it. He started to refuse from then on in. It was so frustrating as the school had completely gone back on their agreement from the previous year of keeping his lessons next to lunch sessions and he was devastated.

By the time it got to the next meeting I was extremely worried as to what would happen or be suggested. I have to admit it certainly wasn't pleasant as it turned into a blame the parent. So I turned it round and asked exactly what they could all do to help, exactly what support could they provide? Yes you guessed it - the most popular answer was 'ummm, errrr, well, there are no resources/funding (delete as applicable)'. Funnily enough despite the 'no funding' for resources at CAMHS and no help from her corner, the psychiartrist started to push for residential schooling! The lady from the local Education authority looked like she was about to faint at that suggestion as they certainly couldn't afford to pay out for that, so she tried to suggest more help in the way of councelling or other therapy from CAMHS who again said 'not enough staff/funding/resources'. So again they tried the blame the parent tactic at which point the SENCo said 'this is getting nowhere, someone has got to help' and suggested he visit my boy at home with a view to maybe trying a lesson there. Suddenly everyone agreed and it was left at that to be reviewed in the new year. If it wasn't a serious matter of a child's education it would be almost laughable.

To this day I will never know why but in the week after half term we recieved a phone call from the local education authority saying that they had arranged home tuition for my son and I would be contacted shortly!!! I couldn't believe it. This is exactly the break we had been hoping for as I had sought advice from the fantastic IPSEA and had been about to seek a medical letter to say my boy was unable to attend school on medical gounds (goodness knows we had enough detailed medical evidence of anxiety) and therefore they would have been duty bound to provide Home Tuition. For once we had been given something without having to push for it!!!!

My boy now has a fantastic tutor who really understands him and has taken the time to build an excellent rapport with him.

I'll let you know how it's going next time as I can hear my housework calling...

Sunday 16 January 2011

Happy New Year!

We have all had a lovely Christmas and are looking forward to all the promise that a new year brings.

My boy is now started the new school term and has struggled to say the least. I did mention a problem in my last post and we have now got to the crux of the problem. He is not enjoying the maths lessons, much preferring the english lesson. He says that in the english lesson he is able to talk to the other pupils in his group and likes them, but doesn't feel that he has had this chance within his maths lessons. He has agreed to keep one of the Maths lessons as the subject is compulsory but swap the other for another english lesson which will give him the chance to get to know the other group of kids. This should help increase his confidence and from there he will hopefully add that lesson back into his timetable at a later date. I am so pleased that he has been able to think this through himself and state his case sensibly and with great thought to how he feels. A first for him as normally he wouldn't be able to say why he feels this way. It just proves that his medication has helped and given him the basis to keep calm and think rationally. Anxietywise the medication does have an effect but doesn't take it all away as he has still been rather stressed over this. His sleep being the first thing to suffer and so from there, of course, mine too!

The best bit about his decision is that it means his time in school on one day will increase as it means, due to the way the timetable is set, that he will have a maths lesson, lunch club and then his english lesson. Hopefully this will help as we gradually increase his timetable. So even though we have made a side step in changing a lesson for one that he enjoys more, we have also made a step forward in the amount of time spent in school on any one day.

Onwards and upwards! As they say :o)

Long Time No Post

Well it's been ages since my last post and so much has happened that I thought it was about time I got a wiggle on and brought this blog up to date!

Since the summer holidays my boy settled back to lunch club every day and after the first couple of weeks managed to do a lesson with other kids in the class. This was to be weekly. A couple of weeks more and he asked to add another lesson to his timetable. Making good progress and gradually becoming more confident in class by contributing to the lesson with his own comments. As he felt more able he then read aloud in class when asked. I am so pleased with his progress. It has been slow but that is how he needs to take it.

After the Autumn half term he again agreed to add another lesson. Then we hit a bit of a wall. He has found the two maths lessons on his timetable a bit of a struggle and it took us a while to work out why. Before we could get to the bottom of it he was rather poorly, which took a week for him to get over. He went back into school on the Monday only to be off the rest of the week as the school closed due to a very heavy snowfall which increased as the week passed. Great fun for the kids! It did have a very adverse effect on my boy though as we lost the consistant routine that he really needs. He struggled to get back into the swing of things the following week and did refuse on odd days but when it came to the finak week before the Christmas holidays he did manage every day!

Overall fantastic progress has been made this year, especially considering that in January we could barely mention school without him getting very distressed. Now he goes in most days for lunch club and has added in three lessons each week within a small group of children. And all this within a large mainstream school.

I am one very proud mum and so incredibly grateful to the patience and hard work of the school SENCo and staff of the supportive education department. Without their hard work and gentle encouragement my boy would never of had the confidence to make this progress. He has even admitted that he does trust them to want to help him with his best interests at heart. He also trusts them to do the right thing for him. This from a child (Ok teenager, because he turned 13 this year) who up until now trusted no one within education after his previous experiences. All in all a good year!

Wednesday 2 June 2010

Lunch Club and Beyond

Just before Easter my boy took the brave step of going to the Lunch Club. I stayed with him the first time but I think I need not have been there as he loved it! He had a crowd of kids round him from the start. Over Easter he got a bit of a cold and was hoping it would be gone before the new school term as he wanted to go again! When the new term started he asked if he could go extra days and now will after half term will be going every day.

My boys annual review took place shortly after the new term and it was a really good meeting. The Home Tuition idea has been firmly thrown out the window as everyone felt that they seemed to do more damage than good. We still don't have a teaching assistant but that doesn't seem to be a problem as the SEN Head of year is happy to teach him one to one for the moment. They are all incredibly pleased with my boy and the progress he is making. The funding for a scribe and laptop have been found so that the work he will be set will be easier for him to complete.

He has now done a couple of lessons after lunch club. two maths and one english lesson and had no problem with the work he was given. I no longer stay for lunch club and am moving away from the lessons as well. The number of lessons each week will be slowly increased and he will be introduced to a small group of other SEN kids for his lessons to get him used to being in a class with others. The TA will also be found that will work with him to make sure he is ok and understands the work.

The best bit is that he is walking to and from the school. My husbands van engine ceased so he is currently using my car. In the past this would have meant that my boy would have refused to go to the school but he enjoys being there so much that he is willing to walk there. This is a huge breakthrough as he hasn't really bothered to walk anywhere for two years. It's also helping to lose some weight. It is a pain not having transport but has been a blessing in disguise for my son.

All in all things have come a long way since January and I am so pleased that it's still moving in the right direction. Some of the leaps he has made have been amazing for him and his confidence is getting so much better : )

Saturday 27 March 2010

Making Progress

My boy is going from strength to strength. He is being more helpful around the house, has stopped using his night light, does more for himself and is increasingly more sociable. He is gaining confidence all the time. It is wonderful to see.

With regards to school, he is visiting every Friday after school. At first he found it very hard and struggled to even talk to the teachers, but now he is quite happy to hold a conversation. He has completed a computer game with them and this week even did a reading test with a completely new teacher. The test was to gauge his reading level and I am pleased to say he is off the scale! He has also been writing a walkthrough for one of his Nintendo DS games on the laptop at home as a way of introducing him to doing some work. They were very impressed with how it had been written! They teacher that has been slowly getting to know him these last few weeks is amazed at the change in him and the amount of progress he is making.

The next step is to get him in for a lunch club session to meet some of the other pupils. He is going to take in his Nintendo DS for this as it will give him a way of relating to the others and for them to start a conversation with him. Fingers crossed it all goes well as it will be a good lead into getting back in to school and making some new friends.

After the Easter holidays the plan is to bring the Home tuition service back in to start him off on lessons within the SEN building at the school but after the normal school day and then gradually move it within the school timetable. Hopefully a new teaching assistant will be brought on board as well as he will need to get to know them before they begin to reintergrate him to the school properly.

I'm so proud that he is making these slow but sure steps forward. It feels like it has been a long time coming and everything has been against us up til now. However looking back I can now see that it was necessary for my boy to have this time to process what has been happening and get used to the idea. It has also allowed him to do things at his own pace and given him confidence in his own abilities to cope with what we are asking of him.

One very proud and happy mum!

Thursday 28 January 2010

New Year, New Start

Well January has almost gone already, and I'm getting used to being unemployed. Having said that it still feels like a holiday so far although I am missing my payday.

We all had a fantastic Christmas and my boy coped very well. He loved the snow but was unable to go out and enjoy it as he was full of cold. However, he had great fun watching the snow fall. I ended up being ill with a cold and then an upset tummy so I was out of action for the first 3 weeks of January, my boy hated it. He was very gentle and loving though and I had lots of kisses and cuddles and 'I love you' s. He did keep asking when I would be well again as he didn't like me ill. It did give me an enforced rest, no bad thing really, I rhink my body was trying to tell me I had been doing too much.

Luckily I was better in time to go away for the weekend, with my sister in law, to Cardiff. We were so lucky with the weather. As we crossed the Severn Bridge into Wales the sun came out and stayed with us for the whole weekend. We spent the first day shopping, had a very relaxed lunch in Prezzo and then went to see John Barrowman in Robin Hood in the evening. He was fantastic and it was so funny. I love a good pantomime. The next day after a cooked breakfast we headed off to the Cardiff Bay area. It was lovely with the sun shining over the sea. We had a wander around the sea front, had a look at the water fountain and Millenium Centre, then headed over to the Doctor Who exhibition. Fantastic fun!
Then it was time for a quick coffee in Starbucks before we headed home.

I was so pleased when I got home as my boy had coped with me being away really well. It was the first time I've managed to be away overnight for about 4 years. He hates it. Last time I was away my husband was exhausted as he wouldn't go to sleep and he had to wait until he dropped of mid sentence at about 3 in the morning. This time he went to sleep at 1am having turned off the light himself and just settled down. I was so proud. His meds are definately making a difference.

My boy no longer has to be on the laptop all day and shares it with the rest of us now. No more Disney Channel all day either, we can watch whatever we want. things are so much better. He goes out now as well. Not everyday, but a few times each week. It's such an improvement.

As for School, wel he managed to get into the classroom last week. It is the first time in 2yrs. Alright it was after school hours and the room was empty, but he did it! It's slow progress but for the moment it's going in the right direction.