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The Highs And Lows…2010 in a nutshell (part 1)

31 Dec

What a year!!!

So much has happened in 2010 and looking back through my diary and reading some past post, I’m shocked at how much we’ve squeezed in!

Though it’s pretty clear from my reading that sadly the lows far out weigh the highs… …  It’s still them few highs that I believe have kept me sane throughout 2010 and helped my family pull itself through them Oh to many low days!

So Now I attempt to write a post that looks back over the 12 months of 2010…Regular readers can reminisce alongside me and those of you that are new hear can discover life so far in a nutshell!

January….

… The year 2010 started off as an amazing one! With my new son born on the 11th December 2009… I couldn’t have been happier. Little man was and still is crazy about his little bro. My family was complete, with three beautiful children I wanted for nothing. Sadly my baby became quite ill in the January at just 5 weeks old he had a bad chest infection (Severe Bronchiolitis), refusing to take a feed or just vomiting the whole thing up (exorcist style) we took him to hospital… Where we stayed for the next week and a half. He was fitted with a feeding tube that went through his nose, and had to be given oxygen for hours at a time to keep his stats up. I worried about my baby so much… But also had the added worry about leaving little man and his sister for so long. How would little man cope with seeing his baby brother with all these tubes? of course I worried about my daughter who was almost 7 but I knew she was stronger than her brother in terms of managing with her feeling and fears, She found it easier to discuss her fears and ask questions on things that would worry her (She was much easier to reassure and comfort during times like these)

The children visited and I would do my best to reassure them their baby brother was recovering well. Little man was becaming very distressed with the sight of all the tubes, as was his sister. A few days into our stay the baby got worse and contracted H1N1 and pneumonia. Myself and his father tried to stay strong for the sake of the children but we were going out of our minds with worry . A no visitors rule was imposed… Only myself (who stayed at the hospital) and his father were able to be with the baby. Little man was broken he couldn’t visit his brother and worried himself sick. His father would come and stay with the baby for a few hours while I would spend them few hours with the children. It was an incredibly hard month!

At last our baby came home and slowly I settled back into a routine of being a mummy of three.




February ….

… Having baby back home was  amazing. Little man had been having a few issues at school during January but I put this down to the change in routine (me staying with the baby at the hospital ect…) However things went belly up after extensive works started on our house. Our ceiling had fallen down in 2009 and was still not complete and the Walls had now started caving in around us. The job was a huge one that meant knocking down all remaining plaster (taking the walls back to brick) and re-doing them all from scratch! Works were planed to take a week. This was no place for a recovering baby and two young children… One who had sensory sensitivity… we knew we couldn’t stay and moved to my mothers. I visited my home every few days to check on things and collect my post ect.. I would leave in tears as it was like a builder’s yard with massive piles of dust. The works went way over schedule & we were at my mothers for what felt like forever! (No offence to my mum but we needed to go home)

Little man was stressed all he wanted was to be at home. Problems at school grew more difficult and I noticed I was getting more and more phone calls & letters from the Head & Deputy Head teacher. I wanted to ask the LEA to assess but was told by his school the LEA would not agree as there was more the school could be doing. Little man was given two unofficial exclusions on this particular month. Looking back now It’s very clear to me he was dealing with a hell of a lot and wasn’t handling stuff as well as I may of thought he was at the time… We were not at home and everything was different. Yet he was keen to attend school for the first time ever… He had even started to make some friends.


March….

… On the 1st March I made a parental request for a statutory assessment. Outreach services were asked to come in to school to observe, advise the school and work with Little man. This was the month Little man received his first official fixed term exclusion on the 3rd March… Things just kept getting worse. The relationship between myself and school was rapidly breaking down over my concerns about the lack of support and understanding that was being given to my son. On the 18th of March little man received his second fix term exclusion… And at the end of March I attend court for non school attendance for the period June-Dec 2009 (Little man was not sleeping at all and refused to attend school daily) As I stood in court like some harden criminal being fined… The school was busy imposing the third exclusion of the month via voicemail… Little man’s third exclusion within a few short weeks! Things were serious.

April…

… It was nice to get away from the stress of Little man’s school situation even if it was for just a few short weeks! Unlike many parents, I found myself dreading the Easter Half term coming to an end & the children having to return to school. It was nearing the end of April when Little man returned (two days after his peers as he was given a 4 day exclusion at the end of March that carried over to the new term) From the word go we encountered problems. I had a meeting at school which didn’t go well, I found myself losing trust in the school, and I felt though things were serious but no one was taking it that way as every concern was brushed aside! Little man was now always angry and his self-esteem was at an all time low. The LEA were not following the statutory time limits when it came to the six-week time limit for making a decision on if/if not to assess Little mans Special Educational Needs under the Ed Act 96 & the code of practice! I found myself having to chase people for answers… Only to then be told that they have decided to take it to panel on the 17th May weeks after the required time frame with no explanation offered! I felt like I couldn’t enjoy my new son due to always suffering the worry of the phone ringing, the fear of further exclusions or being asked to prepare my child to miss his break/lunch time or both, normally for incidents said to have happened a day or more before… I was becoming so down and feared that depression was setting in.

It There was one or two highs to the month… My birthday and spending it with the children, and the phone call informing me I had been accepted onto the Early Bird plus programme (dispute Little man being a tad over the age limit)

was world autism month and I was busy raising awareness for autism through blogging and my facebook group (that seemed to be touching the lives of more and more families thanks to the great support of members and the fantastic admins now on board)I started to notice that over time I had required some truly inspirational contacts & friends, who are some of the nicest, kindest people I know… All because of Autism.

May….

… For me, May was the month that I thought… “Can it get any worse?”,  “Was the straw that broke the camels back” so to speak! Having Only just returned from exclusion a few weeks pervious the exclusions started up again! On the 5th of May my little dude was excluded for one day! This was also the month the Allotment project started, resulting in what I can only describe as continuous acts of discrimination. Little man was either brought back from the allotment… With the school only informing me of such incidents a week or more later… Or he wasn’t taken at all. There were also weeks he found himself excluded on the same day as the project took place. Little man was given two exclusion this month on the 5th and 13th. We had a multidisciplinary meeting at school at the end of the month and it was agreed that the school could not meet my child’s needs, yet….  It was also this month that I found myself yet again chasing up the LEAs decision on the statutory assessment. I finally discovered by phone the request had been refused on the grounds his school could meet his current level of need and he was making adequate progress. This was my first real insight into the sheer twisted system supplied by LEAs… There was penalty more insights to come!

Although things were appalling at school, I started to gain more skills through the parenting classes for parents off children on the autism spectrum (Early Bird Plus) Meeting other parents who nodded when I spoke because they related to what it was I was saying was just heavenly. This was one of my reasons for creating the blog and the magnificent Facebook page… “I just love that page” I wanted to connect people as it can be a pretty lonely world if no one relates to you or your child, even if they pretend they do!.. Meeting parents of children like mine was uplifting and really brought me up from the lowness I had recently started feeling. I could speak to the staff running the programme without judgement, they even visited me at home… I was shown how to create social stories & the benefits of using visual aids (That we now can’t do without) I looked forward to Tuesdays and remain extremely grateful to the staff for agreeing to my attendance on such a beneficial programme.


June…

… After yet another blissful Half term… The children returned to school. Little mans sleeping problems were really showing its ugly head once more… despite the use of Melatonin. The month of June showed little or no improvement with the schools over use of exclusions… They just refused to take note on the effect they had! It was only impacting on his own mental well-being and his behaviour become more challenging not less. At home he was starting to have huge meltdowns and failing to cope with any day trips through fear of being rejected from them (even with his own family… he had lost all faith) Little man was excluded once again a few days into his return to school on the 10th of June (another allotment trip consequently lost) The LEA carried on rule breaking, resulting in letter writing on my part as a way to obtain the important letter refusing to assess in order to appeal to the tribunal… This I finally received it at the end of June.

Although things seem less than rosy in June it had a number of perks… Things may have gone overly sour in regards to Little mans education, but things started to look up for me and the family as a whole. I received an email from Nas inviting me to be interviewed for the training course to enable me to become an adviser for the Advocacy for education TSS service (Tribunal support service) We also received a fabulous gift from Merlin’s magic wand… Four tickets to Chessington World Of Adventures was much appreciated, and brought huge smiles of happiness across Little man and little sisters face! The sound of pure excitement filled the house and gave the family something fun to look forward to. Merlin’s went all out and helped us make up for all the school trips and activities my little dude was currently missing. The plan was to take the children to the theme park during the summer holidays that were almost upon us.


Well…… As you can see and it isn’t for me not trying… I just can’t seem to pack one long busy year into one single post without achieving some kind of world record for the worlds longest blog post (That’s if I don’t already hold the title!) So…. Time for me to wrap this up and continue from July through to December in part 2 tomorrow (Well it will give me something to do 🙂 ) I’m hoping you will all return to read about the highs and low of the last 6 months of 2010 🙂

TO BE CONTINUED…………

Tears, Buses and awards

9 May

So it’s been a while since I’ve updated on the subject of life at home and school. So heres the latest.

HOME

The behaviour chart seems to now be having a sight effect on little man. He didn’t really care about stickers before but since his sister Alice got her bonus reward of £10 on top of her normal pocket-money little man has sat up and took note. But my did he go on and on with his blandishments and pleas for the same reward as his sister! Yep mummy was a BAD MOTHER and he went on to more inappropriate name calling, So much so it’s better I don’t write them down here in the event I may offend others. He spent the whole day till the next day swapping from one technique to the other. None being particularly helpful to his case but nevertheless he consider it to be wroth a try! Well I am exceptionally pleased to report that despite his tantrums escalating into full on meltdowns and me heading to bed early hours with a pack of painkillers in hand due to receiving a verbal head bashing for hours  I stood my ground showing no mercy and indeed not giving in.

Little man has decided to put us through the hell of bedtime once more. As most know already getting little man into a bed time routine is hellish. Yes children with ASD like structure and routine but when it comes to bed then well a lot of that flies out the window. It’s like the Melatonin has stopped working. I know he can over ride the medication but he often goes with the flow resulting in him getting some much-needed sleep. The thing with children like Little man is there tends to be no in between. Your tired or you’re not! Your staving hungry or not hungry at all. There seems to be no build up to anything little man does. When he goes to bed and to sleep he just goes, One moment his wide awake the next his sleeping. And when his awake well it’s the same his WIDE  awake. Being his parent  who is observing his recent changes in behaviours and reluctance to sleep I have come to the conclusion that the worries little man faces surrounding school and his continued obsession with buses are both contributing factors. School is up and down for the little man right now. He recently had a physical fight with his “best friend” Alex that had escalated as a result of a play fight which took place in the classroom. Little man ended up with a pretty nasty mark behind his ear. I will write more regarding school a tad further on in this post right now I want to write a little more about Little mans obsessive behaviours and how these are now beginning to affect everyday life. Little man used to like both Trains and buses but it’s easy to see that now buses are top of his interest list. He lives and breaths buses. I’m not extracting when I say buses are his LIFE. From the moment he wakes till that last moment of conciousness they are fixated firmly  on his in brain, No wonder he has trouble working in school. It’s become very intense and he is very focused on anything resembling buses. His Father got him up and dressed and out the house for school with only minor problems. All this because of a promise made by Dad. Get up and ready for school and I will take you on the bus. Not just any bus but the 194 to west Croydon and back after school. How in god’s name he got through the school day with that extent of excitement mounting throughout the day surprises me. Don’t get me wrong I’m pleased he has an interest and what the hell buses aint that bad a thing to like BUT it’s just very over powering at this present time. Yes we can use the buses as a reward to engage him in displaying good behaviour at home and school but at times I wanna scream “SOD THE BLOODLY BUSES” No I haven’t done this but I’m not denying the moments been close. Having an important conversation with your child only for them to start beeping like bus doors is more than annoying but please go into any conversation with little man with caution because the possibility of him dominating it with his “special interest” is pretty likely. I have been lucky enough to be excepted into a course which I think is run by the ASD outreach in my area called Early bird plus. It’s a new course as it used to just be the early bird which was for parents of very young newly diagnosed children. Now its up to 8 years ( Little man is 9 but thankfully It was over looked ) It is fantastic it’s a small very personal course with about 10 parents but we are all given the opportunity to take two others one being family or close friend the other being a professional from school. I have researched and read a ton of books relating to little man’s Aspergers in order to educate myself but there is always room to learn more. It’s great meeting like-minded parents and the organisers are so nice and more than understanding. I loved that you could see it was more a passion to bring awareness then a job. I got to voice my main concerns at present when It was my turn to speak about my child. Well as you may have guessed School and obsessive behaviours were at the top of my list. These were followed by concerns of bullying towards his sister and use of inappropriate language already after the first class I feel a much more positive person and parent. Looking forward to the coming Tuesdays when I plan to attend with a close friend who relates and is non judgmental towards my little man.

SCHOOL

Well we had the Meeting and lets just say it wasn’t what I expected but then again what did I expect? What I was most disappointed with was the fact it was only the headteacher , the Senco/assisting headteacher and Little mans class teacher who I must add has always been extremely happy to discuss my sons progress and he really seems to care what happens to him. What a shame he has a classroom of 30 something other children. I took a friend and some on from the parent partnership service. Yes I expected a good deal more professionals to attend, We had already postponed and one of the reasons was in order for it to be convenient for others. Regardless of this disappointing turn out the meeting went a head as planed. There was a lot we didn’t agree on and a reluctance to discuss past events given some were only weeks if not days ago. I do wish I had been so much stronger as at the very end I did cry a little. I tried so bloody hard not to but I’m just human at the end of the day and this is my child we are discussing. It’s not easy having him excluded and as his mother being powerless to stop it. The parent in partnership worker felt the meeting was extremely tensed we were in need of someone outside the cycle to help the strained relationship rebuild as yes it was clear to all there is a huge breakdown between myself and the school. She did suggest a mediator which I’m good with however the school seemed a little less keen but you never know maybe. Well the good news is that little man now has good provisions and accommodations in place. He has his own TA for the best part of his structured day ( sadly not much of unstructured time where I consider much of the problem to be ), his own workstation with laptop and visual timetable. He has been taken of the going for gold system as it isn’t working for him. The going for good is a system setup for every class. Each child starts on a gold card and throughout the day can have it turned due to bad behaviour, Once your on RED your out that class and mum and dad are getting a phone call or letter. Well as you can guess little man hit red a lot of the time. I would go as far as to say he sometimes had his card on red before morning play. So he now has his own behaviour chat and with it his own rules which to me seems better for now. We have also started a contact book which seems a good move as I can warn them of his morning moods and report anything I feel will distract his day at school. I also get to read how things are going and see his progress daily. This is something I wish we had started long ago. So yes at present the level of support is good but the Headteacher said the problem is that the current level of support on offer is not for a long period as the resources and staff it uses hence the reason an educational assessment of needs is needed. But the likely hood of this being grunted is low and this was something we were both in agreement on.

In relation to exclusions have they stopped? Well I really thought that progress had been made and yes exclusion were being avoided. On the return from the Easter half term things seemed pretty good but nothing lasts forever and he was excluded on the 5th May for hitting the teacher. It was said he threaten to hit her then swung his arm and his hand hit her face ( This is what the letter stated ) And then there was a number of other reasons basically the same ones as always so lets skip that and go back to the hitting afterall that’s pretty massive stuff. Little man again got upset claiming to be playing with the teacher he said he threaten in a playful way and the teacher was laughing he said he did put his had on her face but didn’t slap her it was soft just playing. It’s my opinion that my son has problems relating with adults in a different way from children. He don’t see a difference and if anything sees adults as peers. He regards a certain TA as his buddy. This lead to another exclusion where it was said he hit them, Again he says it wasn’t meant this way he was playing. The only positive thing is that it’s for the shortest time possible this being just one day. Still will exclusion have a good effect on little mans behaviour? I don’t thing so, It hasn’t so far, why now? We still have to reintegrate him back into school which is always a difficult one as he has to attend part of the reintegration meeting which mostly gives him the hump as he wants to go to class and not sit and discuss past behaviours. Needless to say this has to be done and is an important part of reintegration but that still don’t make the situation any easier.

So school has been a very mixed bag these past weeks but I do wish to end on a positive as often this isn’t the case. Well Little man received an award at school for his mathematics. The ward meant a certificate which stated Math genius. It was presented in school assembly a place little man often struggles resulting in him shouting out and disrupting the whole school, so it was nice knowing something really positive was taking place. I was so proud I almost cried when he showed me. Ok that same day he had a classroom fight and kept leaving the class without permission and was a bit disruptive in class but to say I was proud was an understatement. To see him with that certificate was so much more for me then it maybe would have been to another parent with a child presented with the same award. I’m not saying they wouldn’t be proud of course they would but for little man its massive! I can not tell you the last time he brought a certificate home. His sister yer all the time which made this extra special it was like a rare gemstone. I have displayed it proudly on the fridge and I’m hoping it’s given some company really soon.

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