Addictions & Aspergers

Little man didn’t go to school last week hardly at all! He has a toothache which is probably down to the fizzy drinks he drinks. The thing is Aspergers Syndrome and toothache doesn’t always result in a trip to the dentist. Yep, his refusing, despite the pain his in. His made it pretty clear he isn’t stepping foot in the dentist and I’m losing the will to live as a result!

Firstly, it isn’t like I can just drag his backside there kicking and screaming! Why not? Because little mans kicking and screaming involves hitting, swearing and screaming so loud that in the past passers by have called the police thinking I’m some kind of child abductor. Believe me, this situation isn’t easy!

Shockingly, in between the tears of pain little man made a request… “Can I have a can off Coke please mum?”… Shocking… I know! I’m really having difficulty getting him to associate the cause of the pain with that of the fizzy pop. He waited till i was out of sight and went straight for the fridge. Lets just say that he finally realised that the fizz and the pain go hand in hand!

Yes, the fizzy drink as predicted, set of his toothache and did so in style. Little man rocked and cried as he experienced such intense discomfort. I tried to once again explain that this was a direct result of drinking fizzy drinks due to there high sugar content. I guess I expected some kind of big reaction, maybe a promise that he’ll never go near the stuff again! Shockingly little man made the suggestion of using a straw in the future instead.

The thing is, when younger, little man loved the dentist. He had a filling when he was around 6 years old! Myself and the dentist were sure he’d freak out and were all geared up ready for the explosion! Well, you can just imagine how shocked we both were when discovering he actually enjoyed the sensations of the drill during a small filling (mainly the vibrations he felt within his numb mouth).

He tells me he doesn’t remember this, which seems odd as he remembers almost everything (past events). He has no reasons to block such memories out.

I myself have a real dentist phobia and as a result, I’m registered under a clinic especially for those diagnosed with such fears. Note, that despite the amount of drugs they pumped in me, ones designed to relax me in order to receive the treatment I so badly needed, I still went ballistic and as a result, not one wisdom tooth was remove and not one filling applied… I left with worse toothache than when I had arrived! It is said that I had to be carried out from the treatment room as I was throwing punches at both the dentist and his assistant. I don’t remember becoming violent… I’m not that kind of person! This was down to the cocktail of drugs pumped into me for sure. I’ve now been told that the only way forward for me is to be put to sleep during treatment and I don’t want this to have to be the case for my 12 year old son. Its important that I point out that despite this somewhat intense fear, I’ve never displayed it in the presence of any of my children. If mums scared shitless then its simply a job for daddy! Oh Yes… I just ensure its him who makes the dentist trips. Though this brings me to my second reason on why dragging him kicking and screaming wont work! Dad isn’t used to public meltdowns, the type displayed by our little man. When outside, whenever such meltdowns have surfaced he’ll just run off the other way having been highly embarrassed by the situation! Sometimes I wish I had such an option as running! Sadly I don’t!

You see… In life some of the most “normal” everyday tasks that are usually completed with ease, are often more trying for those on the spectrum. I personally think, that those who don’t get to witness such struggles first hand, will never truly “get” it! I mean, I’ve been given some awful advice at times! Popular ones being… “Don’t take no for an answer… You’re the adult not him!” or another… “His being over the top and throwing a tantrum in the hope you’ll give up and give in!!” … Come on People, do you not think I haven’t already thought such “possibilities” over in my head? I’ve stood my ground and not taken no for an answer (and often still will) however, its all down to the situation at hand and how difficult little man is coping with the task or activity… Something’s are easier said than done and although their are times when his just plain not behaving, there are also situations such as the one we are in, where little man has little control over it! Trust me I’m his mother… I know!

Well, we have since had half term (which is a few days from ending) and little man still has an on/off toothache but still refuses to let a dentist work their magic. I’ve done my upmost best to keep any fizzy pop locked up and haven’t given him spends for the shop as I just know what he’ll buy. Sadly, I read an article in the paper just this week, about that of a young man age 30 who was diagnosed as having Aspergers Syndrome, was addicted to Coke (not the drug but the type supplied in a can and found usually in a refrigerator). Sadly this addiction took his life, it actually killed him. It was reported that the young man drunk an excessive amount of coke on a daily basis which has been reported to be behaviour motivated by his Aspergers. The young man had been drinking Coke -Cola since the age of 10 and his mother commented that it was as if her son had a self distract button (read report Here).

Its sad to think that the thing he loved was to be his killer! The 30 year old was reported to have died in his sleep and the cause of death recorded as excess liquid consumption.

Of course the above story scares the crap out of me! I just wish it would do the same for little man! So far no luck! Its dead frustrating and some days I just feel like I need to take ahold of him and shake the sense into him. Somehow maybe then the importance of what I’ve just told him would actually take some positive effect. Right now he just can’t relate his own actions with that of the young man who unfortunately lost his life at the hands of a Coke can.

Its my experience as a mother to a child diagnosed as having Aspergers Syndrome, that children on the autism spectrum seem to have rather addictive personalities! Of course not everyone! But for little man, I think this may well be the case! He so easily attaches himself to something in which he loves and like many diagnosed with Asperger’s syndrome, he will then over indulge. Both interests and habits almost always become obsessional and then indulged to an excessive level.

Well, its teacher training day this coming Monday so little man’s return will be on the Tuesday. He really needs to go in as the continued time off will just land me in trouble with the school/LEA. I could even be taken to court due to the lack of medical evidence I’ve obtained. Such evidence would usually be needed to authorise such absences. But I can’t possibly produce it, as little man won’t step foot in the dentist meaning I can’t request such written evidence. This is a fact but regardless of this, I know the court would not understand such a situation, therefore brand me an irresponsible parent before throwing me in jail, giving me a huge fine that I just can’t afford to pay, or even worse… Both!

Well, that’s about it for now! Just a quick thank you to all my lovely readers and fellow bloggers for your support and well wishes. Admitting to the world that depression has taken ahold off you, isn’t at all easy… But the response you all gave and tweets you sent just proves its worth speaking out and that no one is going to think any less of because your depressed. As you can see I’m slowly getting back to grips with blogging once more, though its taking long than expected I’m still here! Its a tad strange as I’ve always thrown myself into my writing when depression hits me! However, this time things were very different indeed.

Onwards and upwards from here on now!

Hope your all bright and well.

Bye, bye for now.

Melatonin for the child with autism

Image via Wikipedia

 I may have recently mentioned that Little man has had a change of medication. He is still taking Melatonin, however now his on a different brand, ‘Circadin’ which is a prolonged- release tablet.

  Melatonin isn’t a medication given to Little man as a way to control his Aspergers syndrome, it’s actually given to help him to sleep at night and remain that way in-till a suitable hour. Many children on the autism spectrum have difficulties with settling to sleep and little man is definitely one-off them. 

 Melatonin, actually belongs to a natural group of hormones and it’s something everyone’s body naturally produces. It’s the Melatonin we produce that helps us to become tired and relaxes our mind enough for us to sleep. Its thought that those on the autism spectrum do not produce enough of this hormone hence the reason why so many are unable to sleep or sleep for long periods of time. 

 Little man has had this problem since he was baby and in all honesty it’s grown much worse with age. I wrote an article for SEN magazine back in August which describes the time I woke in the night to find my 4-year-old son frying a bit of bacon in the kitchen, a child who couldn’t understand why I would be angry about this. The most worrying time for me was when he turned all the hobs (gas rings) on and almost gassed us (We now have a safety switch located on the wall.) However Little man is now 11 years old and I feel he is that bit more responsible about stuff like this and doesn’t tend to act in these dangerous ways quite as much. Don’t get me wrong he is still so much more impulsive than most children, I’ve just banged on about the midnight cooking so much, I think his got the message!

 As he grew that bit older, I noticed it wasn’t so much him waking in the small hours that was the problem, more the fact he wasn’t settling to sleep at all. I got sick of hearing people’s advice when stating, “Take his computer away, remove the television from his room etc….” What people couldn’t grasp was the fact that these items had sod all to do with it! It was his mind he couldn’t switch off, not the television!

 Little man started taking Melatonin when he was 8 years old around 8 months before formal diagnosis which he obtained from CAMHS following numerous assessments (another post altogether). At first it worked a treat, I suddenly discovered that I’d spent the last few years a ‘Night Owl’ and now couldn’t adjust my own sleep pattern, just as I began making progress, Bang… the Melatonin would stop working it’s magic and we were back to square one! I really didn’t want my child receiving stronger medication, though I’m non judgemental to those that do take this route, I just felt it wasn’t for us. 

 I learnt that by stopping and restarting the medication it worked better, nonetheless this was only for at a few weeks at a time, meaning I walked around with permanent shopping bags hanging from under my eyes. Little man spent a lot of the earlier days out of school and at home sleeping! I knew that the best way to deal with this was to get tough and keep him awake tough-out the day in-order to sleep at night, but trust me, it wasn’t easy! Have you tried to wake a child who can become very aggressive at 7.30-am given he only went of to sleep at the ghastly hour of 5-am? As mentioned Little man didn’t begin on any type of medication till he was 8 years old, yet we had been faced with the reality of sleepless nights from day Dot. 

 When Little man started reception at age 5 years, sleeping was already a big an issue as ever and by the age of 7 years the school already had the education welfare officer on my back. I can honestly say that it was at this very period of my life that I was the lowest I have ever been to date. I was taken to court and fined like some careless mother who couldn’t give a rats arse about her child. Yet here I was screaming at the top of my lungs, “I need some help here” yet it felt like no one could hear me (the cold hard reality was no one wanted to hear me). I was just 24 years old then, seen as a young mum without a clue! The court went as far as to send me to parenting classes and stick me on a parenting order. 

 It was back then I lived my life on red bull and expressos, weighed a little over 7 stone and booked myself into a counselling . Little man’s Asperger’s syndrome was now at its height of making itself known. My own child would hit, punch, kick and bite me. I remember one day falling to the ground sobbing, I looked up to see him stood before me laughing. His grandmother later asked him why he thought it was funny? His answer, “Mummy had a red face” 

 It was such a long deliberating fight to get him on the CAMHS waiting list and I released that It was only me that could get him there. My therapist, who was a god sent, said to me during one session, “You’re not a bad mother, go with your instincts” that was the best advice anybody could give me back then! I refused to listen when teachers told me rubbish, implying it was his home life that was the issue, always telling me they saw no issues at school (note they forgot to mention to myself or CAMHS that he had been placed on the sen register, and was bullied for mimicking the opening and closing of a train door) these were things I didn’t discover till I wised up and requested his entire educational record under the freedom of information and Data protection acts when gearing up for a discrimination case. 

 I think that the school expected miracles once little man started on the Melatonin. He would constantly be brought in late, given I had spent the last three hours trying to get him up dressed and out the door! I always got dealt the same insulting comment, “What did you forget to give him his sleeping meds last night” Yer…. right, of course I bloody did. It always rattled me a little more given the fact I’d not slept a wink and spent the morning trying to persuade him to remain in his clothes instead of stripping and running away. It still makes my blood run cold, how quick someone who is meant to be a professional is so quick to judge. 

 Of course I ended up back in court, thankfully the parenting order was scrapped, nonetheless I was still fined for the hard fact that yes I was his mother and regardless of any medical reasons and so forth he hadn’t been in school on so and so day so I was therefore guilty. Can you believe that the head-teacher wasn’t able to come due to school commitments and as my sentence was said out that same head master was busy leaving me a voicemail, informing me my child was excluded for 4 days (the 3rd exclusion in around a month)! No, they were no longer stating he was the angel at school like they once did!

 It’s fair to say that his sleeping issues that are a result of his Aspergers syndrome, have had a huge effect on our lives and my (looks, ha-ha seriously bags and wrinkles are not a hot mamma look)!  My point is, lack of sleep has a huge impact on everyone’s ability to function in everyday life, combined with the effects of poor social interaction, the ability to see an-others way of thinking, anxiety and the day-to-day pressures of life itself makes life a lot more pressing for a child on the autism spectrum and therefore the family too. 

 The new medication is taken in tablet form which has been a bit challenging as his so used to the capsules. I’ve noticed that once taken his much calmer within the hour. He sleeps well though there are still nights that it starts lacking in its benefits so again we need to break for one or two days, I try to do this during weekends but sometimes it’s the case by mid-week. Despite this the medication is actually much better then the last one which was actually having no benefit at all. 

 The first week of the new meds there were a few side-effects such as a hangover effect on wakening and he become much more emotional, crying on return from school for no particular reason. He also felt really tired and would fall asleep as soon as he walked through the door, which isn’t something we are not used to, and not really ideal when he has to sleep through the night. I must note, however off-putting these side-effects may sound, they lasted a little over a week, then began to disappear so to push on is the key. 

 If you’re a parent and your child suffers from difficulty in sleeping it can have a massive impact on your life. Little man is under the sleep clinic and although things are not always great, there is the odd few nights we get a great kip which compared to what its been like previously, its good progress. 

 I would advise any parent, whether their child has a diagnosis of autism or not, to go with their gut. Don’t suffer in silence, a GP can make the appropriate referrals and is able to prescribe a medication such as Melatonin (those in the states can obtain this over the counter and looks something like the image above). You as the parent need sleep in order to do the best job possible in raising your child, seek advice before it gets any worse (and believe me, it will)!

Related articles

• Research Review: Melatonin and Sleep (appliedbehavioralstrategies.wordpress.com)
• The John Crane Memory Game, So Much More Than Just A Toy (aspergersinfo.wordpress.com)
• A step in the right direction for autism thanks to Anna Kennedy (aspergersinfo.wordpress.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!

I’ve finally gone Mad & proud of it

Stop it, I know I’m not the full ticket, but that’s not here nor there!

This really isn’t about putting the milk in the washing machine nor falling asleep while stood at the kitchen sink attempting the washing up! This is a different kinda ‘Mad’ altogether!

Do you remember around a month or so ago, when I wrote my shameless, ‘SOS’, post that mostly consisted of a load of begging and up-front pleading form me? Well, I’m here to deliver my second dose of classy begging as last time your kindness resulted in me reaching the finals! Yes, I’ll repeat that incase you missed it! “I’VE MADE IT TO THE FINAL!” and the final I’m referring to that of the, ‘Mad blog awards 2011‘, in which I’m shortlisted in the category, ‘Most Inspiring Mad blogger‘, sponsored by ‘Mothecare’. I’m really chuffed to be shortlisted alongside such talent.

But hang on in there tiger! That’s not it! Hell yer there’s more! I also made it onto the shortlist for the ‘ Mad Blogger Of The Year 2011’ sponsored by the fabulous ‘Parentdish‘ this sees me placed alongside five other very talented parent bloggers, who have some fantastic blogs! This category is not decided by the public but instead a judging panel.

Wow! I have to say that I feel truly honoured and thank everyone who put me there in both categories. You’ve helped me achieve this big fat cheesy smile that’s currently spread across my chops. Gosh it’s gonna take a hell of a lot to burst this mummy’s bubble. I can’t remember the last time I was this excited about anything which is why I’m holding onto this feeling with both hands.

Well, given that it worked last time it only seems logical to do it again, “begging that is” which is pretty much made up of…

“PLEASE, PLEASE, LOOK I’M ON MY HANDS AND KNEES!” or “PLEASE VOTE FOR ME, I’LL LOVE YOU ALL FOREVER AND EVER!”

On a more serious note (though the above was no joke), I would like to state that what really touched me is the fact my readers took them two minutes or so out their day to vote for little old me! I really mean it when I say you guys are totally ace.

I remember when I first embanked on my blogging journey, becoming part of the mummy blogging gang. Of course I didn’t see myself as part of anything at that time, I purely found comfort in writing down my thoughts, fears and hopes. In all honesty I never really considered it being of interest to anyone but me! After all, Who want’s to know? Then you get that very first comment! I remember mine clearly, a fellow mother who had a child & hubby on the autism spectrum! She reached out and without actually knowing so, she reassured me, “I wasn’t alone & showed me that,Yes people were interested in the blog”

As for the diagnosis, its like a roller-coaster of emotions! You don’t only learn a lot about yourself but those around you. Some become closer but some of the closest disappear.

There was a point at the time of diagnosis and that leading up to it, when Little man would not attend school (full on school refusal). This wasn’t dealt with by offering some form of support, but instead by taking me to court. It’s ironic really given my son has been school-less for the past 7 months due to mainstream no longer meeting his needs & no other school willing to take him on. The school attendance officer had written in a formal letter to our CAMH’S practitioner,“I can’t see why she would cry! Her son has a cousin with autism” This was in response to a letter the practitioner had written informing her that he considered it likely that Little man was on the autism spectrum possibly with Aspergers syndrome (which he went on to be formal diagnosed with just over a year later) He wanted the school attendance officer to know this alongside my reaction to the news, stating that they should reconsider court action, instead offering support wherever needed. Her comment was a great example of ignorance in its boldest form, sadly there was plenty more to come.

What I’m trying to get across to you all is that this blog came about in one off our darkest hours! Amazingly though its now become a real positive platform that also opened so many doors, one being to the wider community of mummy bloggers (with or without children on the spectrum).

Although a large number of us have faced some laborious situations, hurdles with a string of challenges to over come, and those constant battles to obtain the basics, such basics that without your child having ever received a diagnosis you would properly never have believed such necessities could be restricted from any child’s reach. You find out what really lies behind the school gates, you sit in the head-teachers office at your child’s school more often then you did your own when you were a child. Nonetheless I hope this blog shows that no matter how hard things become, you do get through it, and do so that bit wiser, stronger and if anything more determined.

What started as just my own personal diary changed over time. Although I still blog about the day-to-day life of parenting three children, one with Aspergers, I wanted to be sure to share anything of use, hear what others had to say and offer support where possible. It became my aim to reach out to parents of diagnosed children, especially those of newly diagnosed children as I was quite aware of that feeling of isolation that nearly always accompanies a diagnosis of autism. I also wanted to connect with those on the spectrum, and anyone else willing to listen. Importantly I wanted to try and remove some of the stereotype views & stigma surrounding autism & aspergers, that often lies with those who don’t have the privilege of knowing someone on the spectrum.

I want my writing to empowered other parents to speak out or to simply see that a diagnosis of autism doesn’t have to be a bad thing (after all that diagnosis entitles your child to services that were previously beyond their reach) If my story has helped just the one family, that’s an achievement itself.

Someone once told me “To beg is not classy” Now when did you ever hear me say I was classy? I’ve thrown all caution to the wind by deciding to get fully involved in the awards, “which I must add are totally amazing” If this involves getting down and dirty with the self-promotion then so be it! After all I’m proud of my little space and if sharing it makes it that bit bolder. That can only be a good thing.

So please If you fancy making this mummy’s day then please visit, ‘The Mad blog Awards 2011’ and Vote 4 me Aka, ‘A boy with Asperger’s as the ‘Most Inspiring Mad Blogger’

Lots of love Claire

Blink and I’ll sleep for a week!

Life right now is nothing short of manic. There’s simply no other word to describe it!

April has been one incredibly overwhelming month and we are just past the half-way mark.

I feel I’ve been put through my paces and had every emotion in my body put to the test. Some days I’ve been in fighting mode, others I’ve been so exhausted I’ve just wanted to crawl into my bed, hide away from the world while indulging in some longed for sleep. 

With each passing day I’m one step closer to hearing my little man’s fate, and no matter how much I try to prepare myself, I somehow feel that we’re hanging from a cliff top ready to drop!

Little man currently has no school placement for the whole of our borough and those that boarder us have taken one look at my sons papers & decided that they don’t have a placement available or lack the resources needed in-order to meet his level of need. 

Each day his left without a school is one day closer to him never going back! This shameful situation has ultimately made him regress, causing his social skills to decrease, and his dislike towards school to heighten. My ten year old son is now so anxious at the prospect that he will one day be expected to step foot in side a school along side other children that he will now require a tremendous amount of support when that day comes!

Whoever said that children on the higher end of the autism spectrum, have less complex needs were delusional! 

Just because my son has a reasonably good vocabulary and met most of his milestones doesn’t make his needs any less complex. However I don’t need to go into that, I don’t have to try and prove such a fact anymore, the system finally took note, it just did so a little later then needed!

This past year or so, my family has been left dangling from a string, I often ask god when that string will break.  April has come around so quickly, this time last year we were at the beginning of the tribunal process. However this wasn’t a special educational needs appeal but sadly a disability discrimination case! At that time and for a significant time thereafter, Little man endured so much. Fixed term exclusions that subsequently occurred one after another, removal from nearly every school activity, including educational outings, school plays, Christmas assemblies , etc. He has been illegally excluded and subjected to long spurts of isolation (received 1-to-1 teaching, just him and a teaching assistant in what was known as the den), he would only attend from nine till twelfth, and was made to play in the infant playground with children of a much younger age. My little man was classified as a potential health and safety risk that was a threat to children and staff! Can you imagine how that impacted on a little boys self-esteem! In December 2010 I eventually made one of the best decisions I’ve ever made for my son, ‘ to remove him from the educational setting that was impacting hugely on his mental well-being!’  As a parent I could not stand by while he was subjected to such treatment. 

During the beginning of October 2010 at the height of the discrimination the local education authority (LEA) finally agreed to undertake a statutory assessment of Little Man’s Special educational needs that he so desperately needed! In all honesty this couldn’t have come at a more convenient time! I was quickly running out of ideas and needed my child in an educational setting with staff equipped to meet his needs. 

Believe me, I was under no illusions that this was now plain sailing… some may say I’m somewhat a pessimist but as I’ve stated once maybe twice before that I prefer the term ‘REALIST!’ And as expected the LEA didn’t wanna play fair!

In January 2011 I received the proposed statement of special educational needs but instead of providing a statement that held the potentiality to see him progress, I instead received a proposed statement that provided nothing more then, ‘GOOD OLD COMMON SENSE!’ This statement was made final in March and delivered with a covering letter explaining that the statement had only been finalised to meet time-scales and would be amended to include my suggested amendments…. YES, I’M STILL WAITING!

In February 2011 just a few days before the disability discrimination hearing we eventually came to a settlement that saw his ‘old’ primary school review its policies, train staff in disability discrimination and a formal apology was given to myself and of course little man. 

Little man is currently being educated in a library on a 1-to-1 part-time basis by a tutor his now overly attached to.

Why? Because no ‘special school‘ will offer him a place.

On the 3rd of June our appeal against parts 2, 3 and 4 of little man’s statement will be heard by the SEN first tier tribunal. I will need to prove that the one school I’ve found that can possibly meet his needs, an ‘independent special school’ should be named in part 4 of his statement. I will also need to prove that part 2 does not list all his difficulties and that part three needs amending as to provide the right provision needed for him to succeed, such as… 1-to-1 support from a learning support assistant or at least a teaching assistant, as-well as occupational (OT) and speech and language (SALT) therapy.

 

I’m thankful for the fact that I’m a trained tribunal support adviser and volunteer caseworker for the NAS. This has obviously given me a greater understanding of the SEN law and tribunal process, nevertheless emotionally it’s no easier! I’m still a parent who has had to watch her child regress. Of course I feel a certain amount of anger towards this horrid system that has allowed such a situation as ours to reach this point (let’s not forget that I’m a mother who has been taken to court twice over her child’s school attendance, no one wanting to investigate the underlying issue nor listen when I pleaded for someone/anyone to help! I guess to some prosecution was the more appealing option) However it’s this past resentment that keeps me fighting and empowers me to help others who are walking the path I’ve walked!

So here we are now in April 2011 and as mentioned it’s been incredibility pressing. I’ve had a Birthday that saw me turn twenty-nine, I’ve been busy with my volunteering duties and contracted Pneumonia which I’m only just beginning to get over! I’ve been preparing Little Man’s appeal while also going a tad insane as a result of the Easter holidays & if this wasn’t enough… MY HOUSE LOOKS LIKE IT BLEW UP!

Despite all the above there is something else that has happened these past few weeks in-which I consider to be far more significant then anything I’ve already addressed! Its something that happened within me, a realisation if you like! I’ve had my eyes opened and although I knew Little man hand significant complex needs that admittedly have been made somewhat worse due to his lack of a suitable education, I’ve got to see his difficulties and what scale these are impacting on many areas of his life. The proof that without early intervention, an understanding environment and the right support, the effect on the child with Aspergers can be detrimental. 

On the 4th and 15th of April Little man underwent two independent assessment. One was carried out at our home by a fantastic independent psychologist (EP) who had her work cut out for her, commenting right from the start that Little man was a hard child to assess! The second assessment was carried out in central London just off Harley St, but this time by an independent speech and Language therapist (SALT) who again was a pleasure to met. Both assessments were carried out for the purpose of the tribunal. I needed independent assessments in order to gain reports detailing Little mans current difficulties and suggested provision to be added to part 2 and three of his statement.

On the 4th of April I sat and watched him struggle to cope with the assessment process that was carried out by the EP, his concentration was noticeably low and he found it near on impossible to focus on anything he was given! His anxiety levels were scoring. The Ep worked so hard with him and after four long hours she managed to gather enough information to write her report. 

On Friday we hit Central London for Little mans SALT assessment but even in a different setting from the home Little man found it hard to participate. With much persistence and an offer of a chocolate egg from the therapist we eventually got some off the testing done. I had of course realised that an SALT programme would be needed, but sat there listening to him try to make sentences with the inclusion of a word given by the therapist while looking at a picture in a book. It proved that despite his vocalness, his ability to put what he sees into words is somewhat a struggle for him. His literal understanding was also very apparent on the day!

Both therapists mentioned the possibility of an underlying condition which of course was ADHD and the EP is also pretty sure his dyslexic ( however she was in agreement that his mathematical skills are great) It was also recommended by both that little man undergoes an independent occupational therapy assessment (OT) due to concerns with both his fine and gross motor skills. I’ve also stated with certain task Little Man is like an elephant playing football.

After the SALT assessment we spent the day indulging in Little mans special interest (transport) Visiting London land marks by train, tube and bus. We visited Greenwich market where Little man met a magician which bowled him over before spotting a vintage model bus which after a little begging I reluctantly brought him. We hung out at the O2, visited Canary Wholf (that he didn’t enjoy and got the message across by bending his body into a ball and screaming that the tallest building in London was falling on-top off him! Well, that’s a post for another day) We also took the clipper (fast river boat) along the River Thames. He had such a blast and he smiled almost the entire day, with not one meltdown in sight!

 As I sat on the Dock-lands light rail (Yes we commuted on many types of transport that day!) I watched him shuffle awkwardly when another child sat by. He was obvious to the battle that lie head and maybe it was better that way!   

picture of  Little Man and Mr Magic

My little man, is just that little! His a ten year old boy and it’s not to late to give him what he needs! I hope that the professionals within the LEA and those employed by such a service read this and realise the effects their decisions, treatment and all to often delays have on the child and their family as a whole. Yes it’s your job, but this is mine, “to see that my child gets what he needs, is given the same opportunities as his peers and gets the adequate education he and so many others like him are entitled to” 

“Yep, you may not like it ‘LEA’ but this mothers on a mission!!”

MASSIVE THANK YOU TO EVERYONE WHO HAS NOMINATED THE BLOG FOR A MAD 2011 BLOG AWARD. THE BLOG HAS BEEN NOMINATED IN NOT ONE BUT FOUR CATEGORIES!

SO SENDING YOU ALL A MASSIVE VIRTUAL HUG FROM MYSELF AND THE LITTLE MAN TO SAY THANK YOU, YOUR TRUELY THE MOST WONDERFUL READERS!

If you enjoy reading the blog, ‘A boy with Asperger’s’ then how about nominating us for a Mad 2011 blog award. I’m nominated in the categories most inspiring blog, best blog writer, best family blog and blogger of the year. Please visit the Mads and help me and the little man grab ourselves a fantastic award. I’m secretly  hoping to reach the final in the most inspiring category 🙂 To help me get that little bit closer click the image below. Stage 1 requires you to nominate a blogger of the year (Full ULR required… aspergersinfo.wordpress.com if you fancy  nominating me for that) Then stage two list all 15 categories, just scroll down to ‘Most inspiring blog” and enter the full url ‘aspergersinfo.wordpress.com’ Feel free to nominate the blog in as many categories you see fit… ‘I’m cheeky but keen!’

Related Articles

• Towards Inclusion and a Better Childhood for Afro-caribbean in The Uk (socyberty.com)
• Aspirations Or Clever Financial Alterations! You Decide (aspergersinfo.wordpress.com)
• Do I Favor Inclusion? (mythoughtstoo.com)

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

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…………

WHAT WAS THE POINT?

First guest post by my good friend Donna who attended Court with me on the 30th March 2010 regarding attendance. Here is what she had to say....

What was the point?

After attending Court with my best mate Claire I walked away with a head full of questions a heart full of conflicting emotions. And a sore chin ( due to my gobsmacked response to the guilty verdict. )

obviously I was happy that the more serious charge of “intention” ie.. that Claire intended to keep the children away from school wasn’t upheld-anyone with two brain cells who knew anything about Aspergers would agree with the verdict. However I’m left wondering how many brain cells the person/people have who decided to raise the question of “intention”

In reference to the “guilty” verdict-did it take the cost of bringing this case to court, the time of the professionals involved and the stress & worry claire had to endure to state the obvious? Yes she was aware the childrens attendance record was “only” 76% ( Or there abouts )  A score that would be given an A or B grade if achieved in an A’ level exam. We’re talking about a 9 & 7-year-old not kindergartener’s Theres no way the kids could ‘wag’ ( as we use to call it ) off school without Claire knowing although I wouldn’t put it past Little Man giving it a ago 🙂

This was a “criminal” case that in my opinion was criminal only in the fact that it was brought to court at all!

What was achieved? Apart from Claire having to pay a fine ‘Which in practical terms can only have an effect on the kids welfare! Money spent paying the fine is money that would have been spent on them? Well lets think…..erm…….Oh yes that’s right A BIG FAT NOTHING. So it was confirmed Claire knew the children had been absent on numerous days-So what? Does that do anything to resolve the matter or at least improve it? Again a BIG FAT ZERO! The reason for the children being absent is rooted in the diagnosis of Aspergers. A court case isn’t going to do change this fact! & since Claire is already doing all she can to educate herself on all areas of Aspergers, Plus asking for help from numerous professionals, Society’s, Groups etc I can’t see how she can do more!

contributor: Donna Jordan.

MOTHER OF CHILD WITH ASD IN COURT FOR ATTENDANCE, WHILE HER SON IS AT SCHOOL BEING EXCLUDED FOR THE 3RD TIME IN 3 WEEKS

So yesterday was the big day. I was a little nervous but extremely looking forward to it coming to an end. I hated having Court hanging over me! I wanted it out the way so that I didn’t have to worry that everything I said and anything that happened was likely to be twisted and used against me.

The fault of having to wait till the 15th April for a decision on assessment was driving me nuts. Then even if they did assess it could take another five months to come to a decision. Five months is one hell of a long time when you face the daily battles we do. Trust me If I was able to just pull him out I would but I can’t so I just have to deal with it best I can.

I was told to be at Court for 1.30 pm  as trail was listed for 2 pm. I got there pretty early and to others I think I kinda looked keen. I sat in the waiting room and waited for my solicitor and a friend to arrive. Once there we went over my case. Solicitor was confidant. He told me that their main witness was the Educational welfare officer. He told me much of her statements contradicted what she had wrote in letters addressed to me. He stated that she had not mentioned that she hadn’t received little mans diagnosis. Solicitor would tell the Court of my struggles at getting little man to attend school. There was his and my lack of sleep then his morning meltdowns. Despite this school still offered no help in getting him to school. His sister was falling behind and I was worried that she was going to face problems maintaining friendships with her peers. This hasn’t happened and I’m pleased in saying Alice has many friends and is doing pretty well in school. So much for offering me extra help once he received a formal diagnosis. Then thinking about this it’s clear as to why she had not put this down! I hadn’t discovered that the school didn’t have a formal diagnosis filed in his records in till the end of December 09. Her statements had been written for Court in september. Maybe she really wasn’t aware the school had lost the diagnosis till I had told her or maybe she was just hoping that I was never going to find out. Either way to me it boiled down to the same thing. With or without a diagnosis things would remain the same. The only reason provisions had been put in to place these last few months was because I had battled for them and his behaviour had gone off the scale. Then they didn’t want to look stupid in Court. I asked what the prosecutor was asking for if was was found guilty. THREE MONTHS IN PRISON!! or LEVEL 4 FINE or even BOTH.

The time was passing by quickly. 2 pm had come and gone and we still waited. The more I sat the more I felt uptight about telling my side. I had done it so many times I was used to speaking up for my children but not in Court. I just wanted it over. We waited till gone 3 pm before we were called. Reason for the delay was their backlog from the morning. The solicitor had been watching at other cases in the court room which all seemed to be breaches of probation. He assured me that from what he had observed the judges were very fair. Well I was about to find out just how fair they really were.

Stood in a box with a hard plastic screen I felt like an animal in a cage at the zoo. Lucky for me there was a hard wooden bench for me to sit on. I was going to need that bench as I was still in that box two hours later. I listen to the education welfare officer telling the court about my life from her lens. I hated having to sit listening without being able to respond. My solicitor done a fantastic job but I still wanted to throw things at her. I best re word that! I wanted to ask her questions. However she did say in Court that she was    understood little man was now having difficulty in school.

I waited for the Head teacher to stroll through the doors and into the court room to tell his side. I had received his statement the day after the reintegration meeting. I was hacked of big time but once clam could see that this statement was no worth the paper it was written on. Lets not forget as Alice’s attendance was a mirror of little mans I was there for the both of them. The head had not mentioned Alice nor had he mentioned attendance! This was my reason for being here after all. All he wrote was about not getting the diagnosis till February 09 and that provisions were in place for little man. Anyhow turns out the Head teacher was not attending. The prosecutor asked the Judge if it was ok to use his statement in court. With this he agreed took the statement and read it. He read it and put to one side. He didn’t even refer to it! Thats how relevant it was to the matter. Well next it was my turn. Nervous No I had sat in that box so long I was glad to leave it behind and stretch my legs as I took the walk to the witness box.

Here it goes my chance to tell it how it was. My solicitor asked me a number of questions in relation to little man and Alice. I spoke loudly and looked at everyone within the room holding my head high, I wanted the judge to see I was not going to lie. I told how the school would refuse to help when he was refusing to go. I spoke off the trouble he had with sleeping and how in turn this affected me. I told them that I had managed to create a very good routine. I also explained that little man had undergone two exclusions in the past two weeks. I also told of the unofficial exclusions. I wanted them to understand what Asperger’s was all about. So when my solicitor asked me to explain what Aspergers was and how it affected little man I was more then happy to answer. I listed all my concerns with toilet phobia ( Locking of doors ) non eating of lunch I then explained just how bad behaviour had become. I was pleased with everything i had said and there was nothing I wished I had said differently. When The prosecutor stood up I have to admit I fault crap here we go. She was scary and I found her to not only speak to my solicitor in an abrupt manner but the judge also. Well it was short and sweet. I read a statement out and she asked if The Head teacher had ever collected the children. I said no. She asked again! And again I said no. She turned to Kim who shook her head as to say No as did the other lady who I think is her boss maybe.  I must admit I wanted to laugh. She then asked if I was their parent and did I know it was my responsibility?  In which I answered yes of course! And that was it she had no further questions. Shocked I went back to my little wooded bench in my plastic box.

The three judges retired to make their decision. I was thankfully allowed out of my box where I went to speak with my friend and solicitor. He was pleased at how things had progressed and My friend said I sounded fine. I grabbed some water and we stepped outside for a bit. This is when I got the Mother of all shocks. The Head teacher was busy alright! He had left a voice mail on my phone explaining that little man had hit a TA and another child and he was on a four day exclusion. My blood boiled. I could feel my heart pumping so fast it almost leaped out my chest. My cheeks were burning and I wanted to run into that court room and tell them all what a disappointment it was. I knew what Little man had done was totally unacceptable but being here in court listening to the prosecutor saying he needed routine he was best of in school not at home! Made me sick. I called my solicitor out and told him. I almost cried as I did. I think it all hit me. I was soon going to hear my fate. Yet here I am knowing that once I return home I have to deal with all this rubbish again. We could not tell the judge as when they reentered the room their decision was made. Like it or not I was gonna hear it.

NOT GUILTY OF Section 444 (1A) the parent knows that his child is failing to attend regularly at the school and fails without reasonable justification to cause him to do so, he is guilty of an offence.”,

GUILTY OF Section 444 1 (failure to secure regular attendance at school)

I was so disappointed as the Judge had said he understood and that the school needed to pull their fingers out as little man should not be in that school. He said he worries for Alice as she suffers because of little man.  He then come out with the however part and that’s when you know things have not gone 100% your way. It was shocking as the prosecutor had requested that had I be found guilty of 444 (1A ) I should serve a three month prison term or high fine. As 444 1A is a lot more serous the 444 1 it can only be dealt with in one off or even both off these two ways. (a) to a fine not exceeding level 4 on the standard scale, or

(b) to imprisonment for a term not exceeding three months,

I guess I should be pleased then. For Section 444 1 I received a £100 fine for each of the children. I also was requested to pay £200 court cost. Maybe the judge felt sorry for me as the authority had requested I pay cost of £900 (thats me rounding it off! It was £800 and something) each child. What if I had gone to prison? I have three kids indoors. Youngest being three months, Then who would take care of little man all day through exclusion. I sure know his dad wouldn’t be overly keen on it. But it had not come to that ( Thank god ) However I did have to go home and deal with little man for hitting a child and a TA. I needed to consider how best to deal with it as it was a very serious matter. This and the fact I had to again deal with the school was depressing. I was at court for the attendance of my autistic son, yet my son was at school being excluded. Somehow it seemed wrong. Really, really wrong

EXCLUSION OF AN ASPIE CHILD

So I’m having a pretty good day, till the school contact me.

The rude receptionist at the other end of the phone informed me that little man was being kept in the head masters office and he needed me to come and collect him right away. What the hell, Here we go again. I had only just returned from the school five minutes before as I had to collect some papers from the office and sign a form for little man to see an outreach working that dealt with Aspergers and behavioral problems. She was due in now why couldn’t she do something to help ? After all it’s her job. I was starting to feel like a yo-yo my poor 11 week old son needed his feed yet I’m off out again. Lucky for me I was staying with family due to ongoing plastering works at home so at least I could count on mum.

I marched into that school with steam flying out my ears. I didn’t even look at the receptionist as she was walking a thin line with me. My main concern was for my son and me giving her what for really would not help. She could wait ! Just then I see the head who is walking towards me shaking his head. Yer can u belive it I wanted to shake some sense in to the man but some people are a losing battle and getting this man to understand was kinda like getting a one year old to do math. Lets not forget this guy tried telling me little man had no problems at school just at home! yer right I think he needs to eat his own hat.

The head starts by thanking me for returning to the school and leads me to the office the one that I’m seeing a little to often for my liking.

“I really tried but his just gone to far today” Tried I don’t see anyone trying!  He goes on to tell me that little man has sworn at him and the deputy head. He then was asked to come to the office but instead run of through the school kitchen and along the corridor. No one could catch him and all the time he was running he was shouting abuse at the staff. He said it had to stop. He needs to follow instructions and isn’t! Because of this he thinks its best if he is excluded from the school for the remainder of the day and tomorrow. I’m going to court on the 30th March as the school believe his attendance was poor from June 09 to Nov 09. When ever he refused to go I phoned the school requesting help only to be told it’s my own problem. Then at a meeting I’m told that just because he is diagnosed as having Aspergers does not mean it’s a reason to not attend school. The thing was it wasn’t the reason his sleeping problems brought on by having Aspergers was then the problem and In my mind if a parent needs help you offer it! You don’t make them attend court. Now here I stand and you are excluding my child the very same child you said was an angel in school when you blamed my parenting for his behavior at home. The same child you state should be in school everyday as Aspergers is not a reason for none school attendance. Wow how things have changed! I had a solicitors appointment  at 4pm and now I would not be able to attend. God I’m seeing a solicitor for the school having me up in court but I’m unable to make appointments with him as the head and reception staff are always calling me in.

“Miss Parkinson you need to understand I have no choice If Giovanni did not have special needs this would have happened a long time ago” What the hell you trying to justify this. You people denied having received his formal diagnosis but it was sent to six different professionals within the school, a meeting was held with his DR and the school SENGO. Some how I find this hard to belive and to be honest as a school a diagnosis on paper should not of mattered you should have recognized he had special educational needs. As some of you may know I have sent my request to the LEA for an assessment of needs with the schools full support. Now we understand why the sudden turn around occurred. You just want him out! You give up!

The head lets little man into the office and explains whats going to happen. He just looks at me and make no eye contact with the head then turns and tells him his made a big mistake just you wait and see! With this I looked at the head with a smile and said ” Do you see ? My son is a clever child because he speaks the truth! You may not yet see it but yes this is a massive mistake on your part. I turn around and me and little man headed for the door. Just as I’m about to leave the head shouts OH ONE MORE THING. EXCLUDING HIM EVERYDAY AT LUNCHTIMES IS  LOOKING VERY LIKELY RIGHT NOW. I bite mt lip and just nod and walk away. If they really think I’m going to pick him up each and every lunchtime then they are thicker then i fault. I have contacted educational welfare, parents in partnership, the governing body, and the LEA. I also plan on contacting my local MP.

When speaking with little man later on that evening I discover that it all started when he stuck up for his little sister when she fell out with another child. He was trying to be there for his sister.

Never give up on the fight! The future seems bright.

OMG did anyone read my latest post to little to late? Well things have moved a long a little more! To be honest I’m still in shock, I’m happy, relived and also a little worried and skeptical!

Reasons for all the above is this evening at 5.30 pm I received a call from little mans deputy head. She rang to inform me that little man would be spending time out of class tomorrow. He was on a red card as he had been rude to staff using swear words, then running around the school like a headless chicken. I once again expressed my deep and worrying concerns for little man future. I know that it’s not all down to his condition but most of it is. I’m concerned that taking him out of his classroom again will make him worse as his breaking his routine. Yes he needs to understand consequences for his actions but I still feel that it’s unfair his punished as he is in need of extra help and support and is not receiving it. For these reasons alone I see it unfair! Just then she tells me that from her point of view little man would benefit from a statement as she thinks he is struggling to cope in mainstream school. Hang the hell on let me pick up my jaw from the floor! A STATEMENT!! This is what I have wanted for two long years this is what I spend all my free time fighting for! Why have I been told for so long it’s not an option. I’m told that now she has seen his formal diagnosis she can now offer more support. She said that they are not able to cope with a child with little mans level of needs. He requires one on one but their staff are not trained to deal with his condition. She goes on to say that he would benefit from a special school and secondary school would be a challenge for him. Basically she was saying all the things I had said before over and over again.

I know that the school have done nothing but supple  me with stress. I have had no support and have battled with them over anything and everything. Yes They have really messed up by saying they never received his formal diagnosis when the evidence  that they did is so strong it makes  them look silly. Looking at all these factors I see that maybe they are worried that the Court will see my side and realise  that yes they have failed a child with ASD. Maybe that’s why we have this sudden big turn around but at the same time does it matter what motive is behind it. If  the end result would mean  little man gets the long-awaited support he so needs ?  A statement = A new school which means his needs will be meet by professionals qualified  in dealing with children with social communication disorders. Yes the treatment we have received is worse than poor but I’m starting to get used to this treatment. I found that once Someone listens and takes note they suddenly leave and I’m back to Where I started. The Deputy said that she will tell the school SENCO that she supports my choice in getting an assessments for a statement of needs and from this day on they must offer better support to little man. All of this I will request in writing as who knows what will happen if she decides to leave and I’m not prepared to go though it again.

It was only a few short days ago I took a copy of his formal diagnosis into the school office to be copied. If I hadn’t of done so the deputy assures me that yes he would have been excluded today. It makes me so angry that his diagnosis has only just began to offer a positive effect on decisions made about his welfare within the school. His had the condition confirmed well over a year It should never of gotten this far. What a bloody mess it all become.

We spoke for what seemed like ages. She tells me that the promise of extra help and the long-awaited backing for a statement will not be broken. She is a newish deputy head and this has to be the first time I have really dealt with her and I’m really hoping she is one in a million and keeps to her word and doesn’t let the system fail my little man again. I’m assured by her that the parent will get the biggest imput when applying for a statement. I’m told all the basic information and know its a long road and a hard one but once I have reached the end it will be a great and satisfying achievement. I’m advised to get support from our local GP and DR at kaledoscope where  he was diagnosed all this plus the support of the school will better his chances in gaining a statement. For the first time in ages I feel that things are looking brighter and little mans further in education could be a much happier one 🙂 It’s a feeling I don’t recognized as the situation has never reached this point and at times it did seem pointless. I told the deputy that I felt the school made me out to be a bad parent and all I ever wanted was what she was offering me now SUPPORT. Wow it cost nothing it’s free nothing flashy or over the top who would think that something that seemed so little and silly would mean so so much to me. Support was all I wanted and I wouldn’t ask for anything else in the world right now. We speak about Alice and how it’s all affecting her. The deputy says she finds Alice a very pleasant child who has perfect manners and has grade A behaviour with this she knows that my parenting skills are not an issue when it comes to Giovanni. Wow she must not have read the statements from the educational welfare officer. She made it seem that it was all down to my parenting skills, she made it seem as if I was lazy and didn’t care about his education I was chosing not to take him to school. Then It went on and on about his great behaviour when at school and the fact he displayed no signs of ASD when he was there. Ok she looks pretty silly now with everything that has been going on lately. Well this child with no problems has been excluded a number of times and his deputy head thinks mainstream school is not the right place for him. Yes shes phoned me and told me that she has only just become aware that his experiencing problems and that the school are not coping. I’m guessing she will be doing her best to think up excuses for her statement looking a little less than perfect. Oh well she has a few weeks to come up with something.

Well I just had to share this break through with you all. I’m praying that the end of this chapter is nearing and life for little man is on the up. God knows it’s about time.