Sleeping Issues

Having a child with Aspergers can be difficult but having one that hardly sleeps is Incredibly trying.

For this reason little man’s school attendance is suffering and so am I… Big time!

Its one huge battle to get the boy to bed of a night and another to get him up. His like a monster in the mornings, swearing and throwing things about.

As his grown so has the problem. His now as tall as myself so grabbing the covers, carrying him out of bed and then physically dressing him is no longer an option! Well that is unless I want to live! Not only am I going to land myself back in court for little man’s shabby attendance I’m also struggling to get anything done during the day. Shopping is already a nightmare and I’ve given up on taking little man some time ago. This means just a quick trip to the shops has become some type of mission… One I’m not to keen on taking.

With this I have no choice but to visit the doctor and request a prescription of melatonin. Its not fantastic but given his had a good break from it, its effects will be beneficial over the next week or so at least.

So… If all the above wasn’t bad enough Little man is now spending his days bullying his younger brother rather than getting an education. Its not bully as such, its just his need for control and when his not at school or in bed catching up on the sleep his lost his doing exactly that… Trying to control everything everybody does. Its tiresome!

We are now in July and what happens in July? Little man starts preparing for his big day… Aka his birthday. Its three whole months away but that don’t make a difference… Not for the little man it doesn’t!

This year his talking computers… Macs to be precise. Yes, his not asking for anything cheap here and I think I preferred it when he was asking for them strange and wonderful items such as batteries and staple guns! There is one good thing to come out of the obsessive birthday chatter! If he wants something on such a grand scale his going to need to go to bed earlier and attend school everyday! After all he only has a week left till the holidays.

So… There you have it! Sorry its such a mini update but as you may have noticed, I don’t have so much time to get on and blog these days. Here’s hoping the next instalment is a little more upbeat.

Why don’t you believe me

Why don’t you believe me?

As a parent to a child with Aspergers syndrome, I’ve heard myself ask this question a thousand times in an array of situations.

I really couldn’t care anymore if the lady up the road thinks I’m a bad parent and my son is the child of the devil!

But there have been some situations in the past when I have felt like bashing my head continuously against a brick wall, times when I needed support and understanding. People I felt should be naturally supportive were not, instead they made me feel as if I was an overreacting pain in the arse, one who had a problem with parenting… One who was full of Nonsense!

Those people were my child’s teachers, these people almost cost my child his diagnosis!

My child is challenging at home yet he doesn’t show such behaviour when at school is a common issue for parents who are going through the procedure of trying to obtain a diagnosis of Autism for their child (this is so common it should be added to the criteria for diagnosis)! It’s not that we are crying out for our child to have an attached label but without it we have little chance of obtaining the support we crave for both our child and ourselves.

It’s important to remember that us parents are not alone in such situations, but at the time it sure does feel like it!

It comes to a point when one really does question their own skills as a parent, we often find ourselves questioning our own abilities to do the job correctly. I actually started to envy other parents, their relationships with their children! “Why doesn’t their child violently hit, bite and kick them?” You start to wonder if your child loves you and if he doesn’t then why the hell not? You start to walk on dangerous ground when you start to wonder if this really is a case of “poor parenting”

It’s not easy knowing that your child is sat like some little angel in the class room, yet a few hours later his walking through the door and trashing his bedroom! Then someone suggests the autism spectrum, at first you instantly refuse to believe it, but the more you learn about it the more you realise the pieces of the puzzle begin to fit, in some sense you find comfort in the fact it isn’t down to you, your child doesn’t hate you, he just has difficulties regulating his own emotions, why? Because his frustrated with over loaded senses and an altogether different take on the world.

You climb mountains to get on that waiting list for an assessment, when you finally get that appointment the paediatrician nods his head and tells you his confident that your child has traits consisting of a diagnosis of autism ( in my case Aspergers)! More assessments follow and every medical professional your child meets draws them very same suspicions. Then they requests feed back from your child’s school and although you understand there to be no challenging behaviour you are confident that the school will share other concerns, odd behaviours and so forth!

So, why is it that they don’t… Instead they write a report that indicates your child is a typical boy, a child who communicates on the same level of that of his peers? Why do they fail to highlight any bullying, obsessions or quirky behaviours?

I speak for thousands of parents who have all had their child’s diagnosis held up or dismissed completely as a result of such report writing!

I remember feeling completely alone, So angry, So let down.

Every concern I had was disregarded as a lie, my child’s head teachers blamed me for the way my child refused to dress for school of a morning or when he failed to sleep the entire night. I began to hold back my concerns for fear of being judged!

I had now entered a new world, one that no longer got left behind at the school gate! A world of TAC meetings, CAF forms and assessments, a world of battles ones I’d eventually become accustomed to!

Sat in my doctors office, head in hands I cried, I cried so much I could hardly get the words I needed to say out of my mouth and into the listening ear of another! I was tired of fighting the system, I was tired of fighting my child to get out of bed and dressed each morning, I was tired of having my concerns pulled to pieces, most of all I was tired of being me.

It doesn’t help when your own mental health begins to slip away, when you find yourself only able to get through a day once you’ve tanked yourself up on Prozac! I remember reading my child’s education record some 2 years later, I remember the statements made in relation to my own mental wellbeing! What still makes me angry is the fact that my own health only suffered because of them… I didn’t do this to myself, they did it! Being strong enough to now say that with confidence is a wonderful thing!

Despite the depression I continued to battle on when eventually one year after that report my child received an official diagnosis of Aspergers Syndrome!

Why now? He had now seen a number of professionals and the very last assessment was the one that finally closed his case. A video interview with a speech and language assessment who specialised in the autism spectrum, plus a play assessment which helped highlight his intense special interest and rigid thinking.

School still failed to acknowledge his diagnosis as they should have, he was no longer 5 but 8 his traits were more noticeable yet the school failed to make prober adjustments. It normally came back to the issue of little man having no statement of special educational needs (something I later went on to successfully acquire, though not without a fight). Eventually though things changed direction and finally little man settled at home. This was down to working out his triggers that lead to meltdowns, different reinforcements for desired behaviours etc. Not everyday was problem free (far from it) but the hitting slowed a bit and I felt as though I had gain some control back. This was due to now having a better understanding of his needs. However, with the school’s complete lack of adjustments or understanding, little mans challenging ways started to surface once more… Only this time, it was within the school setting!

It’s a long story, but put it this way… That same child (the ‘typical’ little boy) was now excluded on a weekly basis, never taken on school trips and even taught In isolation. All this lead to a disability discrimination case which I finally agreed to settle before the hearing once all my commands had been met! (letters of apology, rewriting of policies and teacher training)! What a turn around!!!

My child now attends an independent special school for children with autism and Aspergers. Life isn’t perfect, who’s is! But we have the diagnosis, the statement and finally the right school… One where I no longer need to ask “why don’t you believe me”

I’m in the final for the mad blog awards in the inspiring category voting closes today (6th June 2012) at 5pm! Please if you love the blog pop over and give us your vote.

Section one, Part (1) Introduction to special educational needs

  Introduction to Special educational needs

 So, what exactly is the definition of Special educational needs?

A child is only considered to have special educational needs, (SEN) if they have a learning difficulty that requires a greater level of support than his or her peers. This would therefore require educational provision to be made for the child.

 A child who has a disability that prevents them from fully accessing the same educational facilities as his or her peers, would also be considered to have SEN. This also counts for children who have social and emotional difficulties, or conditions that affect a child’s mental state, though this child would only be seen as having SEN providing such a condition hinders them from fully accessing educational facilities, therefore requiring provision that is either extra or different from what the school gives through its usual differentiated teaching.

 Children that are younger than the compulsory school age, can also be considered as having SEN, if it is determined early on, that such child could not fully access the same educational facilities as his or her peers, or they have a learning diffculty that will certainly require special educational provision that is extra or different to the provision given to his or her peers, as and when the child was to start full-time education.

Section 312 of the education act 1996, stats, Special educational provision means:

“a) For children of two or over, educational provision which is additional to, or otherwise different form, the educational provision made generally for children of their age in schools maintained by the LEA, other than special schools, in the area.

“b) For children under two, educational provision of any kind.”

Definitions in the 1998 Children Act (section 17 [11], Children Act 1989) defines a disability to be…

“A child is disabled if he is blind, deaf or dump or suffers from a mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity or such other disability as may be described.”

 Autism and misconceptions

 It is often the case that parents of children whom have been diagnosed as having an autism spectrum condition assume that their child’s educational setting will naturally make adjustments and accommodations for the child! Most assume that a child with autism is automatically considered to have special educational needs, therefore requiring additional provision to be made. Again isn’t actually the case at all. A formal diagnosis of autism is just that, “A diagnosis of autism” nothing more, nothing less! Such a diagnosis does not entitle a child to receive additional educational provision (through the school must make reasonable adjustment for any child with a disability, this is a different thing all together).

 Although a child with a diagnosis of an autism spectrum disorder is classified as having a, ‘disability’ this is not a ‘learning difficulty’. Whether the child has a learning difficulty is usually determined by the school or local authority (LEA) dependent of the child’s age.

 Common confusion

 It should be noted that despite a child’s autism, they may well succeed academically, requiring little if any extra provision at all. This is more commonly the case for children diagnosed with High functioning autism or Aspergers syndrome. However it is extremely important to remember that regardless of a child with autism high academic progress, who may have even received the top grades in their class, can still be considered and seen as having special educational needs. As mentioned before, if such a condition as autism affects areas of the child’s social and emotional functioning while at school, hindering the way they access education could result in a child being placed on the special educational needs register. Behavioural difficulties, exclusions, misunderstandings, due to poor social interaction and communication, increased anxiety and school refusal are all factors that should be taken into account when considering if a child has SEN. Sadly it is often the case that LEAs refusal to carry our a statutory assessment or even issue a statement as they claim the child does well academically therefore not requiring additional provision to be made. This is not true and certainly isn’t a good enough reason not to make educational provision for such a child.

 Lastly it is important to remember that just because a child doesn’t speak English as a first language doesn’t  mean they have SEN.

 Coming up next time… Section one understanding special educational needs, part two, ‘The stages of SEN and is my child receiving the right type/amount of support?’

All information has been created to help others for their own personal use, this advice is independent and is given by myself a lone (No 3rd party participated was used throughout). Please do not use article for anything other than personal use, nor edit the information in any way. All published articles, throughout this site remain property of the author and this blog. Alway seek permission before using any post for anything other than described above. 

Thank you 

Creator

Claire-Louise

To download or see the rest of the fact-sheets via Google Doc’s Click HERE

Related articles

• My contribution to the world of SEN (aspergersinfo.wordpress.com)
• Feeling a tad proud (aspergersinfo.wordpress.com)

What doesn’t kill us makes us stronger!

Image via Wikipedia

Warning, the picture of the loo roll indicates the amount of crap mentioned within this one post! Seriously continue reading and you will see!

So, the return to school is upon us, we hit the high Street for uniform, stock the fridge with packed lunch, try to re-establish the already crap bedtime routine and pray the kids will get up in the mornings.

I’ve never had the privilege of looking forward to the kids returning to the land of learning so that I, ‘Mummy’ can over indulge on cbebbies with little H. I always kinda preferred the holidays over the term times, and never acquired that feeling that many do, “I can’t wait for these kids to return to school in September!” When the Little man was in his old school he was normally excluded within a few hours of returning. My daughter has no problems in school, but then again she isn’t expected just to fit in! That’s right, my daughter doesn’t have Aspergers syndrome which means she is welcomed on school trips and is given a part in the Christmas play. I don’t need to wipe her tears and try to find the answers as to why she isn’t allowed to join in with her peers or why she is being taught in isolation as opposed to in the class-room alongside her peers. Its simple… My daughter has not been discriminated against for being “different” she’s one of the lucky one’s!

Little man wasn’t, he sadly went through all the above and more, that was in-till he moved to a school especially for those with autism and aspergers. He only started the independent special school a month prior to the school holidays, yet in that short space of time, things were amazingly different, so much so, I cannot find the appropriate words to describe this situation any better. Normally by this time of the month dread has started to set in. I find myself becoming depressed with what’s to come, a pool of sick lay deep in  my stomach waiting to be stirred! Yes, I’ve done all that rubbish of trying to remain positive, “LOOK AT ME I’M SO POSITIVE, I MAYBE SMILING LIKE A CHESHIRE CAT ON THE OUTSIDE BUT GOD I’M HOWLING ON THE INSIDE”. When you have been crapped on as many times as we have its pretty hard not to lose all hope.

That’s why it’s strange, I haven’t got that feeling of dread, that deep Pit of sickness in the bottom of my stomach. Don’t get me wrong I’m thankful it’s gone yet I don’t know what to replace it with? “God at times I make so little sense, I struggle to understand myself” Surely I replace it with nothing, isn’t this the overall beauty of it, the beauty of no worries? It’s been so long that I’m totally lost when it comes to being free from such dread, seriously, to many I’m I may even sound as though I’m missing the drama! Well, I’m not, I promise you that! 

It’s not just the removal of the dread surrounding the return to school, it’s all of it, the whole stinking lot of it! You see, you spend so long fighting, it becomes a normality! You don’t see light at the end of the tunnel, it takes over your life… the daily calls to collect your child, the letters you write, appeals and representations you make on their behalf. You give it all you have, wishing for an end, a break from the grilling daily fight, then your hard work pays off! Your child gets into that special school, yet when they do… the massive hit of relieve you waited for doesn’t bowl you over quite like you expected it too. Instead you find that you have gone into some kind of shock, you’re unable to settle and adjust because I guess you’re waiting for someone to take it all away.

I know we are not completely home, safe and dry, (can you every be when your child has special educational need, living amongst a system obsessed with saving money regardless of how its achieved). Yes, anything can happen! Yet this is the same with everything in life, meaning taking each day as it comes, enjoying everyday that don’t bring with it a pile of stinking poop.

Friday, last week I got that bit of paper I’ve worked so dam bloody hard to get. Yes, It has been placed in my hands previous, only to be given straight back with the words, “Stick it where the sun don’t shine” attached to both Little man’s proposed and final statements of Special educational needs.

Gosh, I was fast becoming an expert on the use of fluffy wording that gave the LEA a, “Get out of jail free card” 

Excepting such an insult would make the whole deliberating experience to that point, completely and utterly worthless. 

Believe me, having a statement that states nothing other then good old fashioned common sense, was not the kind of statement that would see my child’s special educational needs met. I had constantly heard that it was my duty as a parent to ensure my child’s attendance at school during the height of Little man’s school refusal! So, wasn’t it my duty as his parent to ensure that when he did get there he was happy, cared for, involved, treated respectful, made to fill his contribution to the school along with his individual opinions were valued?

Such question pushed me to where we are today, where I was last Friday!

It had been pretty quite for some time (I hadn’t heard a peep out of the LEA) Little man may have already gain the place we so furiously fought for, yet his statement still remained a sheet of paper not even worthy as bog roll! For this reason the tribunal was still scheduled for the 26th of September.

It remained in the hands of the Gods (well, at times I’m sure they think they are)! Three independent reports, detailing a wealth of information! These were reports so detailed and lengthily that I myself discovered thinks about my child causing me to both cry and smile. The whole tiresome experience of trying to get your child a statement of SEN sends your head spinning in a total mass of emotions.

I opened the email from my solicitor and read how she had received the copy of a proposed amended statement, that was sent to me (Well, I’m still waiting) However not to freight, with the request for a forward the solicitor sent me a copy via email that I so eagerly downloaded and with bated breathe, I opened the attachment! 

There in black and white was every amendment requested, no corners cut, no compromising! Was the LEA all out of compromises? Were they beginning to have enough of the battle, just as I had done all so long ago? Surely they weren’t providing my little man with the ultimate gift available to them… A package of provision to unsure my sons needs where met, like he so greatly deserved, like you or I?

YES, YES, BLOODY YES…….

I looked over in his direction and let out a yelp, followed by a, “WE DID IT BABY!”

He smiles, high five’s me then sits down to continue his game. He was happy for his mum was happy, however he could not fully understand the extent of relieve that the battle being fought was finally over! He had no clue to what might have been!

And do you know what? That was just the way I liked it!

I never want to fight a fight like this again, yet I know that there will be times I will need to fight my sons corner, whether it relates to his educational or social needs, well, as for the remainder of his childhood anyway! (I’m pretty sure he will be somewhat of a great advocate for himself when his older!)

For now I’ll try my hardest to adjust back into a life of normality (what ever that maybe)! I’ll take each day as it comes, enjoying every school performance that both my children take part in. I’ll roll about in the comfort that he now feels that he belongs .

I’ll channel my desire to help others in that same position, into my work as a voluntary tribunal support adviser, I’ll spend more them on my blog indulging my passion to write and throw myself back into my passion for art!

I’ll discover, learn and watch my new interest in photography evolve 

I wont miss a single moment of my toddlers amazing milestones!

I’ll just try my best to be me again

Only a much improved vision

I can officially confirm

“What doesn’t kill us can only make us stronger!”

Related articles

• Feeling a tad proud (aspergersinfo.wordpress.com)
• Taking the Special out of Special Education (ontarioeducation.wordpress.com)
• Rwanda makes gains in all-inclusive education (guardian.co.uk)

Do your homework!

As a parent I’ve read many articles floating about the net, all written with the aim of assisting parents who have children returning to school this September. I find that many do not offer any information to assist those parents of the “non typical” children, the child with autism or aspergers.

 In some respects I kind of think, “Well, why would they” but when I  think about the high numbers of children being diagnosed as being on the autism spectrum, I ask myself, “Well, why the hell haven’t they!” I’m no expert, “Far from it” but as a parent of an almost 11 year old  boy with a diagnosis of Aspergers syndrome who has been through both mainstream and special school (where he thankfully now resides) a child who was an active school refuser, who had been excluded more times than I care to remember, I have needed to tried one or two techniques aimed to ease the whole returning to school situation! It’s these few little techniques that I am willing to share with you here today! Sadly there are no quick fixes, believe me I know!

  I Hate this uniform

 Uniform, a total nightmare for the child with autism, especially the one who is tactile defensive! We all like to buy new school uniforms at the beginning of  the new school year (we often don’t have a choice what with the rate they grow)! However, if that uniform still fits, don’t change it! Of course there are those times it unavoidable, change of school, the start of secondary school is one great example that a new uniform will need to be brought! When little man was at his mainstream school, they suddenly introduced a new school uniform policy. Uniform posed a massive problem for little man causing all sorts of issues (even exclusion). He went from no uniform to full uniform, a huge change for any child! So, Here’s some tips on ways to make wearing uniform that little bit easier for your child on the autism spectrum!

 Get it washed

That’s right, wash new uniform in your usual detergent, not once but a good few times prior to your child returning to school. Use a fabric softener and if possible dry in the tumble-dryer as opposed to the washing-line, where clothing tends to become stiff. The tumble-drying of uniform will help to create maximum softness of garments.

 Test run

Get your child wearing the uniform for a few minutes each day increasing the time as you go. This enables your child time to get used to uniform rather then expecting them to wear it for the first time when returning to school. Think of it as wearing in a new pair of  shoes to ensure they don’t hurt your feet when you wear them on your big night out for the first time.

Let’s not go Shopping

 Most children with autism hate the prospect of shopping, even those that enjoy it fail to cope with it well. If you are lucky enough to be in the position of leaving your child with a loved one when doing your, “back to school shop” then do so. If something don’t fit you can always return it! Shopping online is another good idea. Try to buy from those you have brought from before. This way you will have an idea of the ranges they stock and the service you will receive (fast delivery, good  returns policy , etc.) Your child will also be familiar with the texture, material of the clothing, important for those who are sensitive to certain tactile input. If you do find you have to take your child shopping then go at a quieter time/day. Have the aim of buying everything in the one shop (if  possible). You can also check stock before hand if stock is in! Some stores will be helpful enough to check and then hold the items back (especially if  you explain your situation) This means you can pretty much do an in & out job which could save your child from experiencing a sensory related meltdown!

 Advanced preparation

 Most schools will introduce all children to a new teacher or learning environment (classroom) before the last day of term. This is fine for the typical child but those on the spectrum may require that bit extra!  If your child is in a special school then it’s my guess lots will be done to prepare your child for even the smallest transition.  Mainstream schools also have a duty to make reasonable adjustments for the child on the autism spectrum and this would be considered one of  those adjustments! Speak to your child’s teacher or school senco to see if the child  could maybe spend extra time with the new teacher in the run up to the end of term (school year). Maybe arrangements can be made for your child to spend a  few hours per week in the new classroom starting a few months before hand ( though there are times that schools will not be aware of the child’s new learning arrangements till the last few weeks of term, nonetheless, careful preparations need to be made). All the above and more should be done for a child making the transition from pre-school to reception and those off to secondary , etc.

 Social stories

 A great idea would be to create a social story for your child. This could be done with the help of your child’s teaching team. A picture of the new classroom  in-which your child will learn and even a photo of the new teacher could  prove a massive help. You can spend time going through your child’s social story with your child during the school holidays. If this is something you haven’t done already, don’t panic! You can create a social story with the focus of change and returning to school with cut-outs from magazines, newspapers or from visuals downloaded from the net, it’s never to late!

 Visual aids

It’s important to use visual timetables at home if used in school, this helps to create some level of consistency. Many children require images & picture symbols where others do just fine with words. Visual timetables can be expensive but you can get creative and make your own (maybe I will show you how in a post one day). Be sure to highlight during the holidays how many days are let till the return to school (Children on the spectrum like to know what’s coming next). We had this highlighted at the side of  little mans home made magnetic timetable. We just used the symbol for school with the correct number next to it as to indicate how many days remained till he returns to school. This is also a great way to avoid school refusal.

Consistency 

Another good thing to do is remain consistent throughout the school holidays. I mean keeping the bedtime routine the same. Sadly little man has trouble maintaining bedtime routines at the best of times which  technically puts me in no position to advise on the matter! Still, the concept is a good one, which is basically to keep things the same! Who knows it could work for you.

 Well, that’s it, I have an arm arch from the typing, so I’m done! I hope my little tips assist you in some way, even if it just makes one thing less trying that’s got to be something?

 Little man has just two and a bit weeks left. Here’s hoping we have a  good return to school.

Related articles

• What can help a student on the spectrum succeed in college? (autismspeaks.org)
• Giving Children on Autism Spectrum A Different Kind of Rail Connection (nytimes.com)

A fresh start

It’s 3-Am the early hours of Thursday morning, Little man is running around the house like some headless loud chicken on pro-plus and redbull. 

“Come on, you really have to settle down now! You know you start your new school tomorrow, don’t you think you should get some rest”? This was me, trying to unsuccessfully reason with my ten-year old little man! He seems more lively than ever despite the 8 mg of Melatonin he had an hour before! 

It’s the night before the big event! This is quite possibly the biggest event in little man’s life to date, for the morning will bring with it a new beginning, a chance to start a fresh! Don’t all children deserve this? 

Over the course of a few months I watched my child lose every last stripe of his self-esteem. I watched him being gradually excluded from everything he had learnt to love, socially isolated from the friends it had taken far to long for him to make! I battled a system that took every last inch of my strength to break, the endless meetings, the tears from both myself and my child. I listened to the professionals each one slowly giving up on him, the constant calls to collect him as he was said to have been a danger to himself and others, maybe he didn’t fit in with the daily activities planed for the day. I went to court where I found myself prosecuted for my child’s school refusal, not once but twice. I watched him cry, hit his head and ask god why? When my child stated, “I just want to be normal” I cried and continued to cry for nights, days, weeks even months after. I was scared for my sons future, for what lay ahead. I felt lost, wanting to remove my child from the school I felt was truly damaging him, the school that taught him in isolation like some mass murder. I battled for a statement, I got one, then battled for the appropriate amendments to be made! I got brave filing a claim for discrimination and getting the result we wanted although knowing this already tough relationship would now get tougher. Finally I removed my child from the educational setting that was so, so wrong for him, and watched the slow improvements as he was taught 1-1 for five hours a day at the local library by a great tutor supplied by the LEA. I found a school, an independent special school, solely for children with autism! Yet the Lea were not about to hand it to me on a plate and only after every single state maintained special school failed to offer him a place did they finally give in, agreeing to his placement at my preferred school. Little Man had spent the last six months out off school, prior to this, for the period of a year or more Little man was either home on exclusion, educated at school for the period of just three hours per day given in an isolated environment, spending the afternoons at home where he was home schooled. Now he would take the steps needed to make a slow transition to his new learning environment with the help of his tutor, his now best friend! 

This was a big deal for him, I understood that! It’s a big deal for me too! His excitement was electrifying, yet his anxiety was closely hovering by! Little man is wide-eyed at 3-Am almost every night, So this night wasn’t any different! However his this degree of hyperactivity was at a high and risky level, one I hadn’t seen in a while.  

It was something past 4-Am before little man finally gave in, surrendering to his bodies cry for sleep. I tried hard to stay awake, the fear I would somehow sleep through the alarm having fallen asleep so late was within me! Though I gave it all I had but was defeated, just as Little man was an hour before. 

What seemed like five minutes later (God I hate that) I was rudely but thankfully awoken by the horrid buzz of the alarm clock. Rubbing my eyes and seriously struggling to see a thing I faintly made out the numbers on the alarm establishing that it was 7-Am. I could have so easily closed my eyes, reasoning with myself that five minutes extra would do no harm, that I somehow would be able to remain in touch with my head that would remind me that I needed to get outta bed. But I didn’t… Though I have in the past, I made myself get out of that bed and get on with it. 

Waking the little man was like waking an angry dinosaur that or an over hormonal teenager (at ten, this isn’t great… meaning I would preferably go with the dinosaur right now) He angrily gave me an unwelcome gesture of his middle finger then so kindly asked me to @%** Off! I persisted in-till I had movement. Up he got with an awful load of abuse in toll . This little guy had only been a sleep a total of three hours and of course he was filled with both the fear and excitement about the new school . I tried not to escalate the situation and let him dress at his own slow pace. Eventually I was greeted with a somewhat more pleasant child, who sat next to me and said, “Mum, I’m terrified”  Holding on to his hand, I told him it was gonna be Ok! But if the truth be told… I was terrified too!

I would not be joining him for his first morning, It was decided that he should instead start the transition process with the help and support of his tutor. He would only go till 12 p.m. slowly working his way up to full-time. His tutor would go with him for the first two days to settle him before his contract to teach Little man would reach an end. (This was going to be hard) The taxi came and the escort came to the door. Little man walked out to greet her, I shouted that I loved him, to relax, enjoy it, to have some fun. His reply, “I love you too mum” His eyes were so tired and filled with fear, yet I knew he was also excited. I was incredibly proud at that moment… I could have exploded with pride, for after all his been through he was now taking this giant step into the unknown. The morning dragged I sat by the phone on tender hooks, ten, then eleven o’clock no call. I just wasn’t used to this! 12.30 I heard the knock, I ran down the stairs like sonic the hedgehog and flange open the door. There he was, my little man and his tutor. 

Indoors, feed and settled, (this has to be done before probing begins) I asked… “Well, what was it like?” To which he replied. “It was the best mum. I even made a friend! Oh guess what? He has aspergers just like me”  It was then I realised that the tears & the battles had finally amounted to something. I’m not stating they were all worth it, just that for once they lead to something positive. This time I cried the tears of happiness! 

 It’s early days yet, but for once I’m opting out of my usual pessimist attitude and holding on to the hope that this is really it…

A fresh start!

The gift of a beautiful friendship

A few days back I met up with one of my good friend’s for a spot of shopping and a catch up. 

It was during this catch up that I released how lucky I am to have this friend in my life!  Here’s why…

In adult life friendships can be hard things to maintain. Its thought to be even harder when only one of the two friends is a parent, which is the case for us!

This is often true for many, including me! What with the pressures being a parent brings…  It’s a time consuming task that leaves little room for socialising. Its sad but true that for many this type of friendship don’t last the course. 

This is even possible for some of the strongest friendships, those that have been maintained since childhood! Do you remember the days spent with that best friend who you swore would be your best friend forever? You know the one… You swore you would move to a foreign country with, share a flat with, be bridesmaid at her wedding, godmother to her children, and finally grow old and die with! There is a good chance that you haven’t seen nor spoke to that special someone for a very long time.

 It’s not only the factor of starting a family or getting married that sees such great friendships flounder, but also the changing interest you acquire as you sail through the different stages of your life!

Some of my closest childhood friendships have been lost through the years… and yes, many were lost when one of us started a family! Still, It should be noted that I haven’t only lost friendships with childless friends, but those who like me have at least popped out one child… In my case three!  After all… it’s a busy job being mum!

So, what happens when you throw autism into the mix? One friend not only starts a family but one of her children ends up being on the autism spectrum or has some other form of disability/special need? If the above is true, surely this leaves little hope of friendship survival!  

Sadly many of my own friendships just haven’t made it past the finish line! In all honesty, I properly only have a few that have. 

And guess what?

These are friendships I have with friends who don’t yet have children, bringing me back to the reason I consider myself a very lucky mummy!

As I sat with my friend discussing the Ins & outs of my youngest child’s tantrums, my daughters developing “attitude” and little mans offer of a school placement, I could tell that my friend was totally engaged with what it was I had to say! By now some of my friends would be checking their mobiles & making their excuses! Fortunately this isn’t the case with Donna!

You read a lot about the child with Aspergers not being able to make or maintain friendships, sadly this is all to often the case for the child’s parents too! Its something you read far less about, who wants to admit that as a grown arse woman you struggle to make or maintain friendships! Well, I’m not ashamed to state that, “Yes I find it extremely bloody hard!” Why?  Many people Just fail to understand Little man and a good nine times out of ten, they just can’t cope with his challenging ways! 

As for the aspect of making friends, this never seems to happen when out and about with the children. Fellow parents tend to look at myself & Little man before turning to gossip with the mothers in their group. Its like a whole room of eyes just on you! Have you ever felt that, the feeling that the whole room is looking at you? I have! Its something I feel daily! Every time I reach the school gate, go to the park or take the children to the soft play area. I feel it because normally the whole room is looking at me! 

Myself & little man can clear an entire park with our presence!  Oh yer… We could properly put you out of business, clearing almost any child friendly event presented to us. Does this make me sad! It breaks my bloody heart every-time I think about it. 

Do you know who makes me feel better at times like these? Donna! That’s the beauty of friendship!

Donna is like my sidekick, my backbone if you like, she keeps me strong and smiling. Donna isn’t just a friend who listens with real interest but supports and encourages me in anything I do… no matter how crazy (and I can be pretty crazy at times). She was by my side through Little man’s diagnosis, has attended & supported me through two court case’s when Little man was a school refuser, she has been there for nearly every meeting with his old mainstream school or the LEA, and she even attended the early bird course as she herself wanted to learn more!

One of my happier moments to our friendship was the day she held my hand as I pushed my youngest child into the world some eighteen months back. (Donna would likely state that held her hand I did not, referring to it as more of a squeeze that was so tight I almost cut of her blood circulation.) 

Donna is a woman who isn’t scared to share a day out with me and my children. (Even when I’ve arrange a sitter she encourages me to bring them along.) Donna has been present during some of little mans most challenging meltdowns, yet she’s never ran away leaving me to it, she’s encountered the stares form the public, chased Little man across a massive heath (yes he was determined to escape on a bus!), she’s talked him across a bridge when he was to frighten to move, she’s even patiently listens to his non-stop bus talk & constant singing of Bruno Mars hits! But best and most importantly of all… she loves and excepts him for the little boy that he is!

How amazing is that!! 

Post dedicated to my friend Donna Jordan to show my appreciation at having her in my life 

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A love hate relationship

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk

“I’m never going back to school, ever”

Last week I received a call from little man’s tutor requesting that I collect him from the library early (This was an hour before he was due to finish)

Turns out the little dude had a mini meltdown why getting lunch at the supermarket. Reason… He thought the security guard was laughing at him!

Yep, his tutor who I refer to as James for the purpose of this blog, was having a friendly chat with the security guard while little man grabbed a drink from the refrigerator. He called out to his tutor and just at that same moment both the tutor and the guard began to laugh about something totally unrelated to anything Little man was doing. However Little man didn’t know this and as he often does, he jumped in at the deep end.

Of course the guard was unaware of the little mans AS and I don’t think the tutor even had time to warn him. Of course Little man was somewhat confrontational requesting an explanation from the guard and the tutor on what it was they found so amusing. I don’t think he was as polite as he could have been and I’m guessing that the use of inappropriate language may have been used somewhere along the way.

I’m very thankful that his tutor James is somewhat understanding of AS and this isn’t really a massive deal as it is only the second incident in the six weeks they have worked together as opposed to the daily calls I received from his mainstream primary school, regardless it was a situation that needed dealing with.

To cut a long story short I didn’t need to collect him early as first requested as James called me back to say that they were now back in the Library and things were a lot more calmer. Nevertheless he asked if I had a spare half hour when collecting him as some other concerns needed to be discussed.

Sat on the bus I had all sorts going through my mind, “Other concerns, what concerns” this was a constant niggle in my head. I kept thinking what if James no longer wishes to educate Little man. How will little man deal with yet another rejection! I don’t know why I thought this as James is very understanding of Little man’s needs and has told me that he considers him a pleasure to teach. He thinks he has a great mind and personality if given the time to get to know him. Like I’ve already mentioned this is only one of two incidents… So surely not! I think it’s just going to take time for both myself and the little dude to get over the whole mainstream thing and trust people again as I feel little man worries about how things will plan out, where I just feel like we have been failed by the system to many times.

I finally arrived at the library and to my surprise but also delight Little man was clam and relaxed, showing no indication of his not so long ago mini meltdown… He went off and scanned some books while I chatted with James (Oh yes he adores the library’s self scanner)

Well, at last I could finally relax… It turns out James had concerns in relation to the ongoing statementing process and pending transition to a “Special” school that would someday be upon us, as opposed to that of little mans tendency to display challenging behaviour. He stated that every time he even tried to raise the subject of little man starting a new school one day in the further he would become extremely anxious and find a number of ways to not talk about it! This included shouting over James as he spoke, walking off or just shutting down. I explained that I was still trying to contact the caseworker in relation to the final statement, James said we have to come up with a transition plan even without a school place just so little man would always know it was coming.

I defiantly agreed!

The second thing was in relation to his fine motor skills. Yes, he was making zero progress in his writing. He was still refusing to write and near on all his work is done on the computer or is somehow practical… Like science projects and discussions.

His tutor James knew this was one of my many objections to the proposed statement. When first meeting James to discuss what Little man likes and dislikes, what his good at and not so good at in preparation for teaching him, I explained the issue of messy handwriting, fine motor skill problems and the reluctance he displays when it comes to him having to write. I felt that this was an important issue that James needed to know in order to teach him, and this just shows my concerns were valid.

With this I contacted the LEA caseworker who happens to be situated in the very same building as the library. Although I have had dealing with the caseworker a good six months now it was the first time we had met face to face.

I think she was a little worn out after our conversation as Little man would not give her a break when firing hard fast questions at her in relation to the elevator that he saw her come down in. He stated that members of the public should be allowed to use it too and wanted to know the reasons for such a ban! (He just loves an elevator my son)

So the outcome of our little chat was… She requested that I ask Little man’s tutor to write his concerns and for me to forward these on to her as soon as possible as it is going to panel again in order for the LEA to decide if they will make any of my recommended amendments and name my preferred school in part 4 of the statement (Which happens to be independent so I’m not holding my breath) The panel will have the meeting after the half term and the final statement should follow sometime there on after. The Caseworker was in agreement on one thing, and this didn’t require any form of panel meeting! Little man does needs a school… FAST! She had just 15 minutes in his company before she quickly agreed *giggle* He really was talking for England this particular afternoon. With this she agreed to look into my parental preference for an independent school, mainly due to the fact that all the maintained schools have said that they can’t meet his needs (Shock will be had If I’m not required to fight my arse off for it)

Once I had got the Little man home we sat down for a chat, topic being, “SCHOOL TRANSITION” He ran away to his room, on went Bruno Bloody Mars full blast (No offence Bruno) and he remained there in till we left to attend my nieces first birthday party ( Bruno Mars album came too) Once at the party he avoided me big style and with that I decided that the conversation will have to be had another day.

The day after Little man had the day of as the library had closed due to health and safety reasons (angry protest happening outside) So with this I went in for the kill and attempted the school conversation! Again this wasn’t a great success. However this time he didn’t run but instead informed me that his “NEVER EVER, EVER, EVER” going to school again” From now on he will be learning in the library with James Monday to Friday, 9:30 am till 2:30 p.m. and that is final.

I guess that told me!

I will just have to keep trying while praying that when a school placement does come along it’s the one we want or a fantastically understanding one in its place!

The Highs and Lows…… 2010 in a nutshell (Part2)

Hello everyone…. Happy New Year, Here’s hoping 2011 is the year for all of you (Myself and little man included)

As you can see… Me being me, this post is a little later than first intended! I really did mean for part 2 of my blog to be posted on New years eve so it would be my final post to the year. Well things didn’t go to plan and with a zillion other things to do, It just never happened…. Well as I’ve often been told… Better late then never. With that I will leave you with part two of the post, “The highs and lows… 2010 in a nutshell”

July….

July was a month made up of tears and meltdowns… It was a crazy one. Another multidisciplinary meeting was held at the school, I had finally received  the letter from the LEA refusing to carry out a Statutory Assessment of Little mans special educational needs… This meant I could finally prepare and lodge my appeal to the sen first tier tribunal. The overall outcome of the meeting was for the school to resubmit the Assess 1 (Which basically means… again requesting the LEA carry out a statutory assessment, only  this time the school will be do the requesting, rather than myself. Little man had now been observed in school by a number of outside agencies who were all in agreement that Little man could not cope in a mainstream school and would require a statement of Sen and a placement in a Specialist school. It was decided that when the school request the assessment they should also request that the LEA find Little man an emergency assessment place at a “special school” better suited to meet his needs. The meeting was a highly emotional one for me, I hate crying in public, but I spent most of that meeting in tears! What was read out by his 1-1 teaching assistant and his outreach worker was heartrending to have to listen to. There was one part that even stated…. “Other children are afraid of him! I really like his TA and know she was just stating her observations, but I felt like screaming “His just a little boy… Not a monster”

I tried to raise my concerns over trips but….. I was told that we could discuss this after the meeting! ” Why couldn’t we talk now?”…. This month it all got to much and I felt I had no choice but to lodge a discrimination claim with the tribunal. I did however offer plenty of opportunities for the school to simply apologise and change things so we can fix this sorry mess and concentrate on my Little mans floundering education and emotion well-being being. I heard nothing and instead felt ignored. I was angry that they felt such treatment can be justified… No matter if we win or lose the tribunal, I will be able to hold my head high knowing I did what I considered to be the right thing for myself and my child. It’s not about hate or bitterness…. It’s about a ten-year old that now has no school placement and has been placed in this worrying position because the early interventions, we so badly needed… Were never there! Who listened when I expressed my concerns four years back? Not one off them… Now we are here and my son is a ticking time bomb:( I would do anything to help others avoid such a stressful situation…. No child should be in this position, nor should their parent(s)

The Relationship between myself and the school has become incredible strained… I hate it… Every time you take your child to school you feel that awkwardness floating in the air…. Horrid, horrid situation to find yourself in! It’s just not productive at all!

One a higher note I was contacted by the TSS (tribunal support service) Where I was offered an interview for the training programme that would enable me to become a TSS adviser. First I would need to pass the interview followed by the first module…. If I passed I would then have to pass the following nine for an invite to the two training weekends …  This was fantastic news, and was made even better when I  passed the interview… Yay!

August…

August I’m jumping for joy… Literally jumping up and down like a crazy woman! My reason…. School summer holidays of course. Yes Little man is hard work but then again his sister has a cheeky side too. I would take anything god threw at me right now as long as it isn’t school related! I really don’t think I can contend with one more day of it!

We went on plenty of day trips… Some of these trips little man coped with brilliantly, others were not so good. Of course we indulged his special interest and went bus riding a number of times, But we also embanked on a number of other fun trips. One was to Southend On Sea with my mother and younger sister It was fantastic…. All three of my children loved and the stinky Southend sea air must have got my little man in a pretty good mood as he was happy chap throughout the day. This was also the month that we went to Chessington World Of Adventures, courtesy of Merlins magic wand…. Who we are most grateful to for making our day so brilliant. We were not made to queue for rides and was shown on each one using the rides exit entrance. This was great as it was two hourly waits on most rides and can you imagine that! Little man would be abusing the whole theme park within ten minutes and that’s being generous. Despite this Little man had two mini meltdowns…. One on the train & one on the way there, and the last while in the park. But on the whole a great day was had by all.

August was the month the LEA sen team wanted to play silly buggers. First the tribunal refused our appeal in relation to the LEAs refusal to assess… As we just missed the deadline… But thankfully five days after this, the decision was revoked and overturned. With this the LEA suddenly wanting a mediation meeting…. “Funny how they ignored my calls when I was requesting mediation… Just goes to show, how they operate…. So carless and thoughtless… It all boils down to money.

I also made my discrimination claim on this same month.

Oh… I passed the Module, so on the training programme now. nine more to go and pass.

 

September….

So the day I had dreaded arrived… The children’s first day back at school was here! I felt apprehensive about what lay in store for little man. Anyone would think given the children had been off school for a long six weeks and little man seemed to be at home more than school in general… I would be pushing them out the door, with an over enthusiastic wave & a smile! That so wasn’t the case. Little man wasn’t sleeping till the crazy hours and I knew he was worried about his return to school. I also knew that given the fact he had made one or two friends with his peers, he was also quite eager to attend. I held onto the comfort that he still remained with the same teacher whom he had the year previous, “At least that was one change he wouldn’t have to contend with” I was hopeful that the school had changed their ways…. As since we spoke about my unhappiness… The exclusions had faded, fewer calls were made. Things seemed to have calmed to some degree. Little man worried himself sick about other changes that were to take place. Some being…. New Class room, his workstation being moved, and the biggest…. The introduction of school uniform!

First day back his visual schedule was not in place causing huge meltdowns at home and school refusal on just day 2 of the new school year. If this wasn’t bad enough, Sensory overload was now an issue… The school shirts were driving him potty, yet it kept being insisted that he tucked it into his trousers… To which he would bluntly refuse. This situation became tensed and once more he had to be kept at home. Then all of a sudden the phone calls started once more and sadly so did the exclusions. Again these coincided with trips and activities…. YES ON ALL THREE EXCLUSION! Another chain of three just like those in March! However these were much closer together…. 17th, 22nd, 28th…

October….

The last exclusion of September was for a period of five days but they had no intentions in having him return, what with no reintegration meeting booked but instead a meeting at the local pupil referral unit with its 50 foot high prison style fences and what could only be described as security guards that walked up and down with keys hanging from their belts like prison guards. I went with my mother, they visited us at home, then lastly I took Little man. Lets just say…. “He didn’t wanna go!” and that was good enough for me.

Little man also celebrated his Birthday on the 1st- October while on exclusion. His father took him out for the day doing his two favorite things! “Bus riding and shopping” the latter only counts if it’s shopping for himself!! Later that evening we had a few people round one being a boy from his class, who stayed for tea and Birthday cake.

As we had no date for Little mans return to school… And the fact he was now on day 7 of his five-day exclusion I decided enough was enough and took him back. The LEA had decided to carry out the Statutory assessment of little man special educational needs! “*Fan-bloody-tasic* at long last some excellent news” This also meant we were done to one tribunal date as opposed to the two. The Educational Psychologist came in to observe Little man in his class the day he return following a conversation I had on the phone with her the night before. However the school wouldn’t allow her to observe him in his classroom alongside his peers so this was carried out in the school library with myself present. He was like a caged animal being hidden from the world. After the assessment from the Psychologist I spoke to the Head teacher who suggested that it would be better to take little man home for the remainder of that day, and to bring him back the following one. It was also suggested that he should be isolated all day (work alone with a TA in the den) this had been agreed for the mornings  as to allow him time to reintegrate back into class, however the whole day was out of the question, and with that I started flexi schooling (homeschooling from midday)

Over the month things began to worry me! Certain little things Little man said, his sudden outburst of anger, but most of all that look on his face every time I had to break his heart and tell him “No you wont be attending this trip or that activity… I’m sorry” The worse was the trip he was made to miss at the end of September (He was only excited as it involved traveling on a coach) Little man spent the week policing children as an attempt to make sure the trip would not be removed from his grip! Only to end up the only child not going!

After this emotionally tiring month it got that bit more depressing when….. A large section of our ceiling came crashing to the floor just as it did less than one year before. The ceiling and walls had only been fully repaired a few short months ago. Turns out the plasterers had gone through not one but two water pipes that connected to the radiators in the above bedrooms, when he had attached the new plaster-board. This resulted in the pipes slowly leaking for a year…. “And boy did I know it!”

regardless of these horrors above…. Some good finally came… I PASSED ALL MY MODULES! I had struggled to get them done what with my crazy home life and often did them throughout the night. I never expected to do as well as I did.

I will now attend the training weekends on the first weekend of November and the end of November.

Here’s my good news email…

… Hi Claire,

Hope you are well!

Just a quick e-mail to let you know your module results which were as follows

mod 1- 99%
mod 2-98%
mod 3-98%

mod 4-97%
mod 5-98%

mod 6-100%
mod 7-98%
mod 8-100%
mod-10- 98%
mod 9- to follow as not yet marked

Extremely high marks across all modules, well done!-just one or two marks knocked off for lack of details on a couple of q’s and Re-module 10, question 6- It actually does matter who makes the request for statutory assessment, it is only if it is the parents or the school  make the request that they have a right to appeal the decision-if it is a social services or request from a medical professional they don’t ( although to be fair it is nearly always the parents/school who make the request) section 329 and 329A of the 1996 Education Act.

Sorry all… *giggle* you must think I’m a girl with a bit of a large head! I really don’t mean to be… It just couldn’t have come at a better time! It picked me up and made me feel that at least all that hard work and long nights were not for nothing.

November…

What with the LEA deciding to carry out a statutory assessment, you would think things were looking brighter! The “Special school” we wanted Little man to attend on an emergency assessment basis, stated they could not meet his needs nor had space to do so. I had viewed the school and all I had been told was there wasn’t space! Well as some may already know…. If a school refuse on the grounds that they do not have a place to offer due to space the LEA can override this as it is said that no school is actually full. So I guess the logically way out is to claim “We can’t meet his needs”  The school refused to take him three times before the LEA gave up! Every other school that was approached some, even those that were so far out the area stated they did not have the space or cannot meet his level of need. It’s the school situation that is fueling his fire and I feel like I’m powerless to control this.

What with Little man being flexi schooled, and given how much his missed out on… Mum turned teacher (over night) decides to take her little man on my vision of a school trip! That’s right… I need to do something to bring him up as his self-esteem was so low and he was stating, “It would be better if I wasn’t born” Desperate to turn things around we embanked on our very own special school trip to the transport museum. He was in bus heaven! Remembering my own school trip days… I used the trip as a way to engage him the following day. He actually created a huge project with pictures, cuttings, bus tickets, pictures and drawings…. He even filled the sheet with interesting London Transport facts. extremely pleased was mum:)

It was in the first or second week of November that little man started going to school fall time for three out the five days. The next step was the whole five days. He was still in the den (nice world for isolation) in the mornings but afternoons he would be in class. We got to the middle of the week (Just three days in) When I got the dreaded call that I knew was going to be made that very day. It was the call to inform me little man was to return to isolation all day or if I didn’t want that, then the return to flexi schooling. How did I know this was coming? Because the following day Ofsted were visiting…. That’s how I knew! We reluctantly had to flexi school once more.

This was such a mess, and wasn’t of benefit to anyone but school.

MY high in November was attending the two training weekends… Not only did I have a bit of selfish “Claire” time but i felt like I was doing something to help those families that are experiencing what I have. “Support is like a rare gem… Once you get your hands on it you hold on as if your life depends on it”

I made new friends, and learnt a great deal. Best of all I passed the entire programme, so could now spread some love by doing my thing:)

December…

December is meant to be a month full of Joy & Christmas spirit. I wasn’t seeing much spirit being thrown in Little mans direction. Not when his being isolated from Christmas! This for Little man, For me, and for the family as a whole… Was the last kick in the teeth. We were not prepared to take this any more! This nightmare was being brought to an end. School placement or no school placement, we couldn’t afford to stick at it another minute! We were well and truly beaten down, then trod on! They had allowed for Little man to attend the after school Christmas party… However the few friends he had were ban from attending. I was told he was well-behaved during the disco, he had just walked around the dance floor 😦 So please explain your reasons for not allowing him back in the classroom for his class Christmas Party… For just one afternoon…. AFTER ALL IT’S CHRISTMAS! The best he was offered was a visit from a few of his class peers… By this I mean they come and observe him in his “caged environment” I have a lot of respect for his Teaching assistant as she understands him so much more than the others and if it wasn’t her in the Den with him them mornings…. Fear would have over taken over me. All though he likes this TA he had still become very low due to never being able to join his class. We got told at the meeting we attend this month that there was no intention of him EVER returning to that classroom… I could keep him in the afternoons if I still desired. It wasn’t in his best interest to go into the classroom and “enjoy” himself… Of course it wasn’t said in these words… but I don’t have ASD and can read body language a treat! They were clinging to the hope he is offered a placement in January, but if not he will have a new TA and remain isolated… “FUCK THIS!” (Pardon me) These people really don’t have his best interest at heart, Is it easy to sleep at night knowing that Little man is stressed like no ten-year old should ever need to be.

So we left and that was that!

We were told the purposed statement was being drafted and would be with us sometime the following week. Well that was the beginning of December and it’s not yet her today on the 5th January 2011. I’ve spoken to the Sen caseworker who has informed me It was posted today.

Tribunal is set for January for this reason I had to submit the evidence on the 6th December the day my sister was attacked. This resulted in some mad rush and high blood pressure… I scanned, emailed, and faxed at once…. It was pure craziness.

The end is a whole lot happier…. Aww… Christmas was beautiful…. A tad stressful but like dealing with a pussy cat compared the school or a meltdown Little man style.

So there it is… In black and white (With a touch of pink and grey) Our year in a post…. A nutshell was somewhat of an understatement I think!