Life In The Spectrum Bubble

Maybe you’ve noticed, maybe you haven’t, that this blogger hasn’t been the most active these past few weeks? I’m not being lazy, experiencing writers block or falling behind! No, I’ve simply been taking time out, working on other things!

As a parent, especially to one on the autism spectrum you sometimes feel as if your whole life is taken up with social skills training, advocating, battles and special interests. You find it difficult to shut off your mind, think about anything else, take real time for you, yourself as a person.

This isn’t a good thing, we all need to just be ourselves, doing some of the things we love from time to time. Its not that I don’t love parenting my son as I do his siblings, and it isn’t because I dislike blogging because, actually… I love it! I just needed a little me time.

Things at home haven’t been too eventful… If anything drama levels have remained reasonably low so I don’t have much in the way of news to report. Little man has been experiencing some sleepless nights (as usual). What’s worse is his been experiencing some awful toothache and this has affected him badly. He is very sensitive to this type of pain and is having difficulty coping with it. His senses are in overdrive, and with refusal to see the dentist I think we are both at our wits end.

I also got a letter from his school today threatening court action. Little man’s attendance is well below but when his refusing to sleep and then attacking me as I try to pull him from his bed of a morning it isn’t the easiest task to undertake. Its not that little man dislikes school because he actually quite likes it. However, changes such as new children in his cab, new teaching staff and friends leaving, makes little man want to shut the world out.

Between looking after little man and the toddler during the day, I’ve also been busy working on my own stuff. Myself and a friend have been doing some selling at bootfairs, vintage fairs and craft markets, selling mainly that of vintage items, jewellery and other lovely bits. I actually love doing this, especially during the warmer months. Not only does it raise some much needed funds but it gets me out doing something, meeting new people.

We have to remember that just because we are parents of children on the autism spectrum, it doesn’t mean we can’t have interests, time spent on other stuff! We should be able to do this without feeling guilty too.

I’m not denying that when your child is on the autism spectrum life becomes a bit more hectic, it does! However, you adjust and adapt, making routines and adjustments as best you can.

Its easy to find yourself stuck in the autism bubble, you’ve just got to pop it, remembering that before your child’s diagnosis you concentrated on other stuff! After all,its not healthy to do nothing but study the best therapies and educational resources all day long.

We are far better parents when we are more relaxed, free from stress and happy overall.

All my children need a sane mummy… And I’m just working hard to avoid myself becoming anything other than that! After all I’ve been there and it isn’t a pretty place!

ITS TIME THAT OFSTED PUT A STOP TO ILLEGAL EXCLUSIONS AGAINST CHILDREN WITH SPECIAL NEEDS

Yesterday was a rather productive day.

Its a day that two years ago, I longed to see.

Yesterday was all about reaching out, creating awareness and getting heard.

It was those important factors above, and a few more besides that encouraged me on the given tasks I had been set. Tasks I thought would never happen but was now about to suddenly surface.

The task was that of sharing our story with the world.

Two years ago I felt as if no one would listen. I was able to successfully bring every aspect of our story to light and people would take notice… Every aspect but this one! Now I’d been given an opportunity to change this.

It all began when the charity “Contact A Family” sent me an email with an attached survey surrounding the topic of “Illegal exclusions from school” Of course I had a lot to say on the given subject. I hoped that others affected would have too. The results could finally prove the extent of the problem and finally a campaign set in motion.

Thankfully this is what happened! The results have lead to the charity “Contact A Family” launching a national campaign highlighting the results of the survey entitled “Falling Through The Net”…

The charity’s Falling Through The Net survey, collected the opinions off over 400 families of children with disabilities or additional needs.

The results indicated that more than half (53%) of families have been asked to collect their child during the school day because there are not enough staff available to support them.

• More than half (56%) of families have• been told by the school that their child can’t take part in a class activity or trips because it is unsuitable for them.

• Almost a quarter (22%) are illegally excluded every week and 15% every day.

• More than half (53%) of affected disabled children are falling behind with school work and 43% feel depressed because of illegal exclusions.

• Half of parents (50%) are unable to work due to being called to school frequently.

The charity is making the following recommendations to improve the situation:

• Where exclusion is necessary, schools must follow statutory procedure to ensure decisions are lawful, reasonable and fair.

• The most frequently illegally excluded pupils with a disability or additional needs are those who have conditions which affect behaviour. Schools should take early action to tackle the underlying cause, and to put in support before a crisis occurs.

• Schools and teachers should work closely with parents to understand a child’s condition or disability and their extra support needs and ensure the child gets the help they need.

• Ofsted has an important role in identifying unlawful practice in the course of an inspection. School should be offered additional support to help them improve their practice. A grading of “inadequate” should be considered if schools continue to illegally exclude children with a disability, SEN or additional need.

Looking back through some of my blog post that I had written back when Little man was being regularly excluded from school (both officially and unofficially) I am reminded of the sheer frustration and anger this situation was causing for both myself and my child.

I’m reminded of them painful days full of tears and disbelief as we struggled to get of a never ending rollercoster of emotional terror.

My post remind me that I am in fact a much stronger person than I myself give credit too. Despite the forming of depression and a certain degree of hopelessness, I never once give up… even though I often found myself close to the edge I remained there by a thread… A very thin one.

It wasn’t just our family feeling the pressure, although at that specific moment in time I felt like the only one and that felling was a somewhat lonely one! There was many more like me and it was during those months that followed that I discovered many others like myself living in fear of the daily phone calls from their child’s school demanding they collect their child for whatever reason.

The Boy With Aspergers Facebook page which is an addition to this very blog has some 5,800 + members, many looking for the same answers, huge numbers struggling to work together with their child’s school in a productive manner. Instead these parents found themselves on our page asking the same question… “Are they allowed to continually request I collect my child from school and bring him home?”

Yes, they are…. But only if the statutory procedures are carried out by the school. Its when they fail to put these procedures into action to ensure such decisions are lawful, that they then become unlawful.

What happens to the schools who chose the latter? In most cases if not all… Nothing!

You see the Education Act states that it is a parents responsibility to ensure their child is educated once they have reached compulsory school age. If parents fail to ensure regular attendances AWOs (Attendance and Welfare Officers) likely step in and local authorities proceed to take parents to court if they fail to fulfil this parental requirement (for whatever reason). This can leave parents with a hefty fine to pay or even in some cases a prison sentence to serve. The thing is parents can be found guilty of an offence under section 441 or 441(a) regardless of the reasons behind the absences. Its simple if you are (a) the parent of the child and (b) they never attended school everyday regardless of the reasons, then that parent is automatically found guilty of 441 (the lesser charge of failing to secure school attendance) and will end up with a fine or find themselves on some type of parenting order. Its the law, plain and simple!

My point?

Your child’s school phones you up, sometimes on a daily basis and requests you collect your child as they are unable to contend with their challenging behaviour. You take your child home as the school requests you do, only the official routes are not put into motion… There is no exclusion letter setting out the reasons for your child’s exclusion. This therefore means that the local authority have not been notified and your child’s school have broken the law. Maybe you don’t know this at the time but when you eventually discover this to be the case you take action. Written complaints to governing bodies, LEA officials and ofsted! Yet nothing at all happens… Instead the school seem completely disregard it all and continue to operate in such a manner! How is this allowed to continue? If parents are taken to court and hit with hefty fines then why ain’t schools? After all laws are laws.

When I was called at the ridiculous hour of 8.30pm and asked that I keep my child away from school on the same day as a planned Ofsted visit I had finally been pushed enough. I took myself and child to the school and as he throw himself around the reception area in sheer anger and frustration I just stood demanding I speak with the visiting ofsted officer.

Next thing I knew she was stood behind me, placing her arm around my shoulder as she lead me to an empty class room for a chat. I remember it all becoming to much and I sat telling her through sobs and tears, the extent of the schools treatment towards myself and my child, paying particular attention to the ongoing illegal exclusions (including the one he was currently meant to be serving). I passed her evidence I’d collected, diary notes and some written thoughts from the little man himself. She agreed that the schools activity was illegal and promised to investigated. I tried making contact with the officer as the weeks turned to months but never had any luck. I was horrors with the schools final report and grade of a “Good” school. There was absolutely no mention on the subject. It even stated the schools understanding of children with SEN and certain disabilities. To say I was horrified is an understatement! I then lost every bit of faith I had left in a failing system.

Yesterday morning I gave a live radio interview to Paul Ross on the BBC LONDON 94.9 Breakfast show.

That same afternoon I found myself agreeing to a LIVE TV interview with SKY NEWS. Now I’ve done TV interviews before and have appeared on the news as well as sharing stories in national and local newspapers, but a LIVE interview was something new to me and admittedly as I stood waiting to enter the news room my stomach did an array of huge summersaults making me feel a tad sick!

I had to constantly remind myself of the pain we suffered… How awful life was for little man during those dark days attending mainstream school. I then collaborated a huge mass of messages in my mind, all surrounding the questions parents of excluded children would leave on our Facebook page messages I’d read on the Facebook page all searching for answers and support.

I just had to remember that by doing this I could help contribute somehow to making a difference for children like my little man and their family’s too! This combined with the great encouragement given to me from some great supportive people across social networks such as twitter and Facebook, was the virtual kick in the butt I needed to get in that news room and go for it.

Thankfully I was joined by Srabani Sen, Chief Executive of Contact a Family and the whole thing went pretty well.

So… Here’s hoping together we can bring much needed changes to the way schools deal with the challenging behaviour of children with additional needs.

Would be interested in hearing from others who like myself and many others have had fight this battle. If your interested in featuring in a post I’m planing on this subject please email me via the address on my contact page.

Links to media articles on this subject…

An article on the guardian blog from a teacher who says illegal exclusion needs to stop! Click Here

An Article in the guardian newspaper (I myself contributed too under a different name) plus it features the wonderful Mama Owl (aka Juile Sheppard) and her beautiful boy Logan. Click Here

Enable – The official Contact A Family Report featuring mine and little mans experiences Click Here

Contact A Family Article on their findings Click Here

I’m afraid I haven’t been given the permission to broadcast the Sky News Clip as yet. It was showed at 1:50pm on the 19th Feb 2013 live on Sky news (Sky and freeview). If you are a Sky account holder You maybe able to view this on Sky Go today if you would like to see it. I will share on the blog as soon as I have permission to realise the clip.

I Just Want A Hug

I reach out my hand but you pull away, I open my arms and you flinch as if in pain, I open my heart up but you ignore to see the inner core of a heart that’s full of love for you.

Your first day at school you clung to me, arms wrapped so tightly around my neck I felt as though I couldn’t fully catch my breath… You did this for weeks, they blamed it on a detachment problem.

Then one day they just took you from my arms, carried you away while you kicked and punched as you screamed the word “Mummy” through your tears. Your tiny arm was stretched right out before me, your hand flapping up and down crying out for me to take a hold of it (something you never normally wanted). You wanted me to save you and I couldn’t. I cried but was told to toughen up, the tears wouldn’t help you.

“It will get easier” they kept on telling me, yet it didn’t every morning was the same as the one before.

I’d come to collect you, be stood in the playground waiting for you. Other mothers chatted and looked in my direction, some even made comments out loud that referred to me in some horrible way. I didn’t fit in but neither did you.

The bell rang out and as the doors swung open children darted out in all directions into the open arms of their parents. They stand staring as you appear from the doors, look at my open arms and ran the other way. Some could be heard whispering to one another, many laughed as I set chase running like some manic mother fearing her child may make it to the dangerous road outside.

By the time we reached home you were unstoppable, like a bull in a china shop you trashed about as you shouted and cried about everything and anything. I didn’t no what I should be doing to make things better for you, I wasn’t even sure of the issues you were upset about. I know now it was nothing precise, it wasn’t the fact we only had one biscuit, nor the fact I’d made pizza for dinner even though these were triggers, it was the underlying cause that was needing to be fixed. No… Not your Aspergers Syndrome, But your schooling.

We didn’t have an Aspergers diagnosis then… We had nothing but a load of court letters threatening court action for your school attendance that had now started to decrease. I’d try to get you there in the mornings but given you had not slept till 4am you’d wake with such anger. I was tired… You were tired! We didn’t need scare tactics what we needed was support.

Some almost 3 years and 2 court cases later you were diagnosed. I felt both relief and pain. You had been through so much and I’d failed to make them listen. I felt guilt for getting depression when the school just looked at me like some overprotective mother but at the same time some kind of shit one. I was screaming but no one could hear me, I now know that no one wanted to!

I felt resentful to a system that had failed to help me get the support we craved, to our british justice system who fined me what little pennies I had for your lack of school attendance… I felt guilty every Friday I saw my therapist and told him I felt like giving up.

There is a point to this post and for me a very important one…

Labelling isn’t always a bad thing it gives us answers, it gives a platform to start building on.

It wasn’t that my son refused to hug me because he disliked or loved me! It is because he is tactile defensive. Knowing that has helped, OT has helped and cuddles are now given once in a while (even if they are quick they are special all the same).

Without that label that many describe as wrong to give, my son wouldn’t have been able to attend the special school he does today. It’s pretty obvious now that my son’s autism traits such as hating change, poor social interaction and sensory processing were only part of the reason he feared the place he was expected by law to spend 6 and 1/2 hours of his day, 5 day a week attending. Bullying made up part of the fear which consequently, everything combined lead to what I now believe to be school phobia.

Without the label I’m scared at how life may have been today. Could I have found myself sectioned in a Psychiatric ward, I think quite possibly… Yes I could have! Where would that have left little man… Where would it have left his siblings?

Instead I started to get stronger and it was a bloody good job too. We had a lot of battles to come and I needed to be well enough to take them on.

I’m extremely passionate about advocating for families dealing with autism! It should always be understood that its not the diagnosis that is the problem but the carp that often comes with it! We do have to fight harder for what our children actually deserve, what is overly best for them. But to try and get any of these things without a label… Is like a dog chasing its tail in circles.

If your worried your child is on the autism spectrum, don’t let others make you feel bad for seeking your diagnosis. A label doesn’t have to be a bad move it can actually be a really positive one!

Please don’t patronise me – the verdict

So, here I am! Obviously not in prison but still feeling somewhat drained of every emotion in my body.

Please read my last post which will explain in more detail my reasons for writing this.

Basically, I was taken to court for my daughters school attendance which was said to be 80% (is now 95%). This wasn’t the first time! I’ve experienced this before as my last post explains I’ve been twice before. Having a child with special educational needs and Aspergers who refuses to attend school and when he does, he finds himself excluded as his needs can not be met, doesn’t seem to fall into the statutory requirements of “Special circumstances” and both times I was fined. As explained in yesterday’s post I was going to court this time for Alice. To be honest I was fuming as she is a child who has missed so much school in the past due to late nights (having a big brother who kicks of throughout the night isn’t easy) as well being made late when little man required all my attention of a morning only to refuse to leave the house. There are many other reasons as well as different parts that make up this story but as mentioned you can read yesterday’s post, I’m just to emotionally drained to go into it again today.

Well, Alice’s attendance went right up as little man started attending an independent special school and got transport half an hour earlier than Alice needed to leave. I also allowed her that bit of independence when allowing her to walk the two minutes to get to school alone.

Sadly during October to the end of Feburay Alice got every bug going. She also had a bad urine tact infection that made her attendance fall to 80%

Letters were written by myself and passed to the school. I even rang and emailed to cover my own backside. The current receptionist sent me back home with Alice on at least four occasions when I turned up with her reporting she had been sick during the night but felt well enough to attend (school policy I’m told). So can you imagine my horror at discovering the school and that of the attendance and welfare officer (AWO) were claiming these absences were actually unauthorised and I’d needed sick notes! The twist here was I’d signed a consent form which allowed the school to contact my doctors as they don’t like to write sick notes for schools.

I was fuming that I was going to court especially given the fact of our history and the reasons behind the erratic attendance of my son.

I went to look through my daughters school records and found most of the evidence needed to prove I’d been communicating. The rest just seemed to be amiss somewhere!

I defended my own case. It wasn’t that I didn’t trust a solicitor to do it better I just didn’t have the time required to get one. I was nervous but filled with anger, it’s the latter that keep me going.

If I was found guilty of the charge I was up for s444 (1A) then it was a very high fine or prison sentence I would be looking at receiving. Being up twice before it would seem the LEA wanted the latter, given they had made the point known that they didn’t think any of the other options were suitable for me (you know given I’m not a good “communicator” and all that)!

I had gotten to the point where I just felt victimised by my daughters school and that of the LEA. I had battled them both for years and won a discrimination case against them. I guess I just assumed that given little man had now left to attend a special school we could forget it and move on. God I was trying to lose any bitterness (and I had a lot to lose, why couldn’t they?)

I was most angry by the fact that my daughter had been sent home yet the register stated no reason was given for her absence. This was for more than 4 occasions. I was also fuming that the attendance print out that was sent to the court differed from the print out I had received from reception. This one had the reasons I had given for my daughters absence printed underneath each absence (you know them reasons I hadn’t given)!

The prosecutor who I understand was just doing her job was something of a bitch which I guess makes her ideal for the role. During the hearing I mentioned that I had won a discrimination case and how my child has SEN and Aspergers, I wanted it noted that the school seemed to be acting bitter towards me. The prosecutor just rolled her eyes and for a minute I felt like shaking the ignorance out of her. I just about held it together!

One thing that shocked me was they had a witness. This wasn’t made known to me and I felt cheated when she gave evidence. She was said to be in a Senior position within the LEA’s attendance and welfare departments.

I hadn’t received a letter about the pre court meeting which was organised by this women (someone I have never met) as soon as they wrote telling me I hadn’t bothered to show and was going to court I called her right up. She wasn’t there so I left a message explaining I never got the letter and could she call me back.

Of course she didn’t and I called my AWO who had prised Alice’s attendance and promised to find out why the receptionist wasn’t logging the reasons behind the absences including the times she was sent home. We spoke for 36 minutes but it would seem nothing was documented for court. Once I received the court summons I phoned her again daily… I’ve been ignored for months!

Now this witness was telling the court how I left a message saying I’d forgot about the meeting. My blood was boiling.

I had questions for her but she just answered in a way that displayed ignorance and the lies continued.

The court were a tad shocked when I produced the letters I had written to the school, ones I had taken from my daughters records. They also wanted to know why they hadn’t been given the attendance record that I had obtained the day before from the school. Of course they save some other crap excuse.

I really did just about hold it together! Having someone ask you if you understand how important it is for your child to receive an education, especially when you do what I do is pretty frustrating. After all I really can not help it if my daughter is sick can I?

When the magistrates stepped out to make a decision I had to step out and use the toilet. I couldn’t let them see my tears and I was at the very point of letting them come out. When I returned I discovered the magistrates were already back… That didn’t take long!

So as to remind you, here’s what I was up against…

Failure to secure regular attendance without reasonable justification (s444(1A) of the Education Act 1996)
This is used where the LA thinks the parent knows that the child is not going to school but is not trying to do anything about it. This is a more serious offence than s444 (1) because the parent is accused of not taking responsibility for the situation. Parents found guilty of this offence can be fined up to £2,500 or sent to prison for up to 3 months.

I was told to stand to hear my fate.

In my head I knew I’d be handed another blow of injustice despite my hard work of gathering visual evidence.

One of the three magistrates declared that I was NOT GUILTY of s444(1A) she said their was clearly some confusion based over the communications made by myself (really, I’d call it lies rather than confusion)!

However here’s the twist….

I was still found GUILTY for s444(1) the less serious charge.

(1) Failure to secure regular attendance of a child (s 444 (1) of the Education Act 1996)

This is used where a child is absent without permission and is without suitable alternative education. Parents found guilty of this can be fined up to £1,000.

So because the school had chosen to not authorise ALL of my daughters time off I had to be found guilty of this charge because it’s the law and the law is shit.

I didn’t receive a fine, a parenting order or anything of this kind. Instead I was given a one year discharge. This means if I come back within a year I’ll be trailed for the same case too. This was said to be their way of not punishing me!

Yet… I felt patronised as the magistrates continuously asked me if I understood while telling me that she didn’t want to see me back there. I had to ask them if they thought it made sense that I would fight the battles I have fought to ensure my eldest son an education only to not bother ensure my daughter had one too?

Now my fear is the school will never authorise an absence when my daughter is sick… Come on they don’t even authorise the ones where she has been sent home.

For this reason and others I’m yet to write about, I’ve decided that in order for this not to happen again I’ll be looking into another school for my daughter to attend!

I will also be putting in a formal complaint against the school for not recording her absences in the way they should have done (mainly sending her home and stating no reason was given for her absence).

Lastly it would seem that if your child’s school decide to not authorise an absence and you go to court then unless you have a medical note from your doctor for every absence then you will be found guilty of s444(1) which is the less serious charge.

I disagree that this should be the case so I’m getting ready for some serious campaigning!

Today I maybe blogging from a prison cell

Yep, I may well be a jail bird blogging from my cell (well, that’s if I’m actually given access to a computer that is)!

It’s 3 am and I haven’t slept a wink, I’m busy preparing my defence case (representing myself). This afternoon I’ll be of to court where I will need to prove that I didn’t intentionally keep my daughter home from school on the days she was sick.

I’ve been prosecuted twice before in relation to my sons school attendance. I was found guilty of section 444(1) failing to secure his attendance at school. I was found guilty because having a child with Aspergers who wasn’t receiving appropriate support causing him to develop school phobia and emotional behavioural problems, didn’t come within the statutory guidelines needed for them to allow me to walk with my head held high.

Statutory guidelines (“excuses”) only cover a handful of reasons for non attendance! These include illness, religion, travelling, and a few others that don’t cover incidents such a mental health, bullying and all those other reasons we find our children refusing to attend school, therefore creating a war zone come 8:50 am in the morning.

Such behaviour meant my daughters attendance struggled. However this was mainly lateness which gave her an unauthorised mark against her name (yes she was in but if the register was called she was given a half day absence against her name) When you have mornings like ours these marks tend to add up quickly!

Regardless of the above, once little man began attending his special school things slowly got back on track. Alice was given a little independence when I allowed her to walk the 2 minute walk down the hill to school.

With this things improved, I thought that with Little man in a new school I would have less to worry about. Sadly I was wrong.

If any of you have read the blog long enough you will already understand the struggles I had to get my son to school, a place that could not meet his SEN needs leaving him somewhat school phobic. My daughter suffered, what with being made late for school when big brother was hitting and spitting at mum. The fact the household received very little sleep because Little man doesn’t frankly believe in the five letter word is just another contributing factor.

When I was in court last, my mobile vibrated as the judge was speaking. When they retired I checked my phone only to discover a message from the Head teacher informing me Little man was yet again excluded, this time for 5 days. The head teacher was meant to be at court but instead had provided them with the information requested claiming he had meetings! I wasn’t found guilty of the more serious charge 444(1A) (which basically means the school were stating I had no intention on sending them into school… Yer right! I could actually do with the break.) However, I did receive a fine for the lesser charge of 444(1). Basically I couldn’t say he was sick on each of those days. He had received so many exclusions that these were now starting to confuse me. I’d spent so long trying to get him into a routine and now it was being wrecked. Ok, they couldn’t find me guilty on these days but they could of those that followed, the ones where he refused to attend, kicking and screaming.

The above made me so angry as I was fighting for a statement and having my child excluded every week didn’t help. I was also in the process of a claim against the school for discrimination which I won (settled out of court).

I eventually got my son out of the mainstream school and into an independent special school. There was however a period of time when he was educated in a library because the LEA would not agree to my school yet no state school would take him.

So, where does Alice fit in? Well, despite her improvement in getting there on time and therefore attending as she should, during the months of October through to January her attendance dropped. This was due to a reoccurring sickness bug which the school kept sending her home for. Then in January she had a very bad water infection that saw her on medication and close to hospitalisation. All days were covered. I had sent notes in, explained via email or visited the school in person.

They deny this! As a result I am being taken to court as my daughters attendance was recorded to have dropped to 80% with no reason given!

It would seem that the school have failed to log my letters or just chosen to ignore them. After all its up to them to authorise.

Lucky for me I requested her education records and obtained copies of some of these letters. Others were missing. Emails and records on verbal conversations have vanished as if they never existed.

I refused to plead guilty. My daughters attendance is near on 90% as it stands. I feel victimised by the school and LEA due to past difficulties.

The school state that a child must remain home if physically sick for a period of 48 hours. Nonetheless, when abiding by these policies, Alice receives an unfair mark against her name.

Now… I can’t just call up and get an emergency appointment with the GP because Alice is being sick. In the eyes of a GP an emergency this isn’t. There is nothing they can give her for sickness, So… it’s a waste of their time. We just keep her hydrated and comfortable.The thing is she may be sick the night before and just fine in the morning, yet when I tell staff she has been sick (purely because it wouldn’t be fair not to) we are sent jogging!

Shockingly, it also seems that despite her bad urine infection which I provided medical evidence in order to cover ourselves for, school still have it down as “N” in their attendance records which basically means “No reason given” what’s worse is that I called them, wrote to them and sent an email! Worse still, on one of these days she was actually sent home!

Under the freedom of information and data protection acts I was able to gain access to my daughters educational records, requesting things I wanted copied. Yes I was pleased to discover some of the items I needed to form my case were sat there right under my nose. Yet, I was also sadden to discover others were not (which worries me).

Within a few minutes of being given my daughters records I made the most horrific discovery! I was left sitting in a pool of tears as I tried to collect my thoughts. Ive decided to write this in another post… Why? Because in just a few hours I’ll be heading to court and I know writing about what’s worrying me will only make me feel worse… Basically it’s something I’ve put to the back of my mind because I need to focus on my court hearing.

I will therefore return when time permits.

So, I best go jump in the tub and get ready for yet another long winded court case where I’m sadly the defendant who abided by a schools policy and got her arss kicked for doing so.

Heres hoping I’m not gonna be made a jail bird… Here’s hoping I’ll be home tomorrow with my kids, blogging where I should be.

photo credit google images

Little Man Sets Up Shop

So, the little man has been using that clever brain of his to make himself some money.

The little man has always had a keen interest in money, then again who doesn’t?

So… The boy has come up with an ingenious plan to make some. His set up shop, yes you did hear that correctly. His actually set up shop in his bedroom.

Today he attended a school trip to Chessington World of Adventures and instead of spending the whole of his £10 treat money he brought home £7.50 (yes, I was amazed)! Following a trip to Costa coffee (don’t ask) he went to the shop across the road from our house and purchased £3.00 worth of mixed sweets. He then brought some plastic cups and emptied the contents of his sweets into a large ice cream container and the shop was then officially open for trading!

So… Just what was he selling? A cup of mixup for £1.00 yes… One whole quid. He sold me two cups for his siblings, his dad came round and brought 2 cups, his friend next door couldn’t resist and neither could his cousin! The little man has therefore made a whole £6 and he still has over half his container of sweets remaining. This means the little man is already over £2 in profit… The clever little sod.

My son already has big plans for his future and talks highly of people such as Richard Branson (his idol) he tells me that his going to make millions and I’ve now taken up using this to try and engage his learning and school attendance.

Life isn’t always easy when your child is on the autism spectrum but it also has far more up sides and this is truly one of them (even if it’s costing me a fortune buying sweets)!

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)

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 

Related articles

• One more friendship post.. (tiffanydawson.wordpress.com)

The fight to get it right

It’s not easy being a parent, the choices we are faced with can be overly overwhelming. For our choices impact greatly on our children. We are forever making decisions for them, sometimes it’s done with ease… What to dress them in as little ones, what to get them for Christmas & birthdays, what time is bedtime and how much pocket money to allocate. Other times these decisions are far bigger… choosing a doctor, dentist, vaccinate or not vaccinate, school placement, diet, when to start increasing independence… Although many parents find these decision hard, having to make them for a child with AS or ASD is daunting. Choosing the right dentist for example… If you get this wrong and the dentist is somewhat ignorant when it comes to AS/ASD the impact on the child can be huge… a display of public meltdowns everytime they have a checkup isn’t desired. having experience on parenting a child both on and off the spectrum has highlighted the difference my decisions can have on the children.

I now hold this paper in my hand that is full of decisions that would make up my child’s educational further. Yet these were decisions that were not made by me but someone who had never even met my child but was based on the observations made by others and the conclusions they drew. Some of this came from doctors who may not know us personally but on a professional basis for sometime, others were educational professionals who to be honest don’t really know him at all despite his existence at his previous mainstream school for the past five years, the EP who had only meet him the once and an AWO who had always considered it her lifes mission to prosecute me for non school attendance instead of looking at the “whole” picture (how helpful when your little aspie is ripping your hair out from the roots as u try and get him out the street door to go to school!) Then you have the outreach workers who have met him once or twice and despite giving such good advice u still feel a tad concerned as your the parent and it is out your control. The only chance I had to voice my concerns was through the parental advice I would give that I was sure to make both detailed and impactful, not missing a point… Fifteen, A4 pages is a detailed report that I hoped would make some impact.

For all those who have not yet gathered what the hell I’m yabbering on about.The paper I am referring to was the paper so many families fight so hard to hold but are never given that chance. It was little mans proposed statement of special educational needs… and to be 100% honest it was mostly a load of rubbish!!

I’m not no blonde dizzy bimbo who has a head full of air, I’m also no Einstein … but this statement was ignominious in it’s current form. Yes it could be used to access a “special school” but in terms of providing him with support it was useless, the provisions were largely made up from common sense! and though many teachers need to be told this in way of a statement, there was so much more they should have provided! Did I expect anything less? “No!” yet it would have been great to be surprised, but hay we can dream!

So what was the problem? Did it not describe all little mans needs in part 2, was the description not detailed so as not to leave any doubt to what his needs/difficulties were, did the objectives in part 3 not cover all his current needs, did the provision in part 3 not meet the needs of the objectives and provide provision for every difficulty listed in part 2 or was the provision not specific and quantified leaving no room for doubt at who would provide it, monitor it, how long it would be given (hours per week) and how often he would receive it? Maybe it was the use of wolly fluffy words like: “reguler, access to, opportunities, encourged to” that were my problem?

Funny enough it was all the above!!

Yes, every possible issue was an issue! The appendices was filled with advice from those I mentioned above & funny enough a huge proportion of this advice was actually good. His own senco had however wrote hers in a way that was considered by myself as pure ignorance (she just seemed to make him out like he was a brat) however his behaviour outreach teacher gave a fantastic report and great advice. Reading it back today it’s clear to see that regardless of her only having known little man four or five months, she “got it” she wasn’t a specialist autism teacher but at times I wondered. She was in fact an outreach from the PRU the school tried to place little man in (you know the one that had that who “lock down” style going on) The special schools outreach teacher wrote a reasonably good report which given that they had only observed him the once was pretty good (thing was the school she was based later said they could not meet little mans needs when we tried obtaining an emergency placement) the communications and outreach (ASD “specific” outreach team) are always super and it showed in there report. AWO “yep that’s attendance welfare officer to you and me” wrote half a page that just consisted of his attendance issues and not much else ( no surpises there then) As for the SALT well, I think obtaining a report from 2008 isn’t much use to anyone…. The fact that the school attached his ADOS report (autistic dignostic obsevation schedule) that was carried out by a ASD specialist SALT in 2009 as part of their evidence attached to their advice, the LEA still igonored it and chose to go with the 2008 report. This just shows how sly these foxes are. It’s my understanding the LEA are meant to be following the Cop (code of practice) they should therefore obtain reports and advice given on his most current difficulties, if they want to use a report that was taken from a SALT who visited the school when little man had little issues… was somewhat aloof at the time and just happily faded into the background. Just because it stated he had no SAL problems then I’m inclined to insist they also use reports from 2007 detailing traits that warrant no provision today but did then. These traits are no longer an issue as they have been replaced by others. my point is… Do u think the LEA would have used the report if it indicated high cost provision should be made? The ADOS was clearly backed up by all additional advice including the EP so it was only reasonable it was used instead. If not another SAL assessment should have been ordered. As for the EP report I was surprised… I had heard the horror stories regarding them writing reports that were not very beneficial due to the fact they were employed by those wanting to draw out a budget statement. She gave a pretty good report and picked up on problems such as his sensory sensitivities and literal understanding of language.

Despite the fact most of the reports reflected one another the LEA choose to leave difficulties unlisted, or just including them in part 2 only to not provide for them in part 3. I love how the parental view only gets a small dedicated sections comprising of two or three short sentences… Yet we are the best professionals to ask when it comes to our children, no one knows our child better then it’s parents, no matter how much they think they do!

Well, I’ve spent a little short of two long weeks making sure these “decisions” that were made with little control from me are amended by writing my objections and suggested amendments. I also made my prefernce for a school placement in part 4. Its fair to say that this was the hardest report I’ve ever written… I cried, got frustrated, laughed like a loony, feel asleep, swore out loud and researched a stack of reading of reading material while I typed… It was one emotional process because it is an important one, and having taken this long to get here it had to be right

If statement were for sale, this statement could be brought at our local Tesco store (British supermarket for those more far a shore) you would find the statement on the economy shelf displaying the words Tesco Value range or if sold in sainsbury your looking at the basics section.

Money, it all boils down to money… To them the statement has to be in line with the use of the LEAs efficient resources!
To us that means your screwed because the LEA are tight fisted numb nuts preferring funds to go to the most needy causes like student artist who receive a fat hand out so the LEA can display “pointless ugly art” around the borough.

So here’s my advice to any parent just starting their journey…
… Get ready for the ride of your life. Walking into the world of SEN is like riding the worlds tallest fastest bumpiest never ending rollercoaster… Once your on it’s pretty hard to get off!

Social isolation

It seems that every post lately is full of doom and gloom!

I hope that 2011 brings with it lots of smiles, because lately we just aint seeing any!

I have decided that I may have to visit the GP and ask about getting little man signed off school for a while. It seems that for the last few months I have had to repetitively deliver disappointing news to little man! It’s always the same… “Sorry darling but you can’t take part in your school play” or “I’m really sorry, i tried but they won’t let you join the class for the christmas party!” I think you get the point!

I just can’t do this anymore! It’s heartbreaking informing your ten year old that he wont be joining his class again because his school state they can’t take that chance! It’s got to the point that he is punished for behaviours that haven’t occurred… But they assume that they might and to them that’s good enough. How do you explain this to a child on the spectrum? In all fairness, How do you explain this to ANY child?  You can’t!

It’s bad enough Little Man has missed so much time at school due to exclusions. His missed activities because his considered a liability, and now he misses Christmas (Well Christmas at school that is!)

It crushes him everytime…. And I never know how to answer the whys. If he isn’t sat crying himself to sleep, his angry, so angry that his throwing his whole body against brick walls. Things were so bad last month that he whacked his arm against the wall so many times it bleed. This wasn’t due to discovering he wasn’t attending a trip or taking part in a school activity, this was for a reason unknown, that I expect was a build up of emotions and anger due to the time he spends isolated in school.

Little man has spent something silly like six afternoons in his classroom since the beginning of October on returning from an exclusion! He is Isolated (spends time alone learning with TA) in the mornings and home in the afternoons (School wanted him isolated the whole day)

When I broke the news about the school party yesterday, he cried so much his eyes were sore. He didn’t kick, punch, destroy anything like he often has! I think he was to worn out to do so…. After all it’s happening all the time. I just sat thinking I honestly can’t do this anymore. His mental well-being & self esteem is deteriorating and I can’t sit back and willing watch it happen.

I’ve tried so hard to make him feel better by creating our own elf day, school trips and parties trying to compensate for the ones his missing. At first it did the trick but over time it just isn’t enough! He says it’s not the same! And I know it isn’t!

It’s sad seeing the disappointment plastered all over his face. He may have Aspergers but this don’t make him stupid and unable to see what is going on around him. I took him in to school on Monday morning and by the time I collected him at mid-day he was a mess! He had heard the other children outside singing christmas carols but was unable to join in. It was Elf Day and the children do christmas activities and crafts. His TA made a Santa decoration with him… But it wasn’t enough, it wasn’t the same, and no way was this inclusion. All the way home he keep asking why he couldn’t join his class!

I had a meeting that same afternoon. It was at this meeting the Head teacher and Senco told me they didn’t want little man returning to his class & that he wouldn’t be allowed to join them for the class Christmas party. Instead we were told they maybe able to organise for some of his peers to come out of class and spend time with him in the Den. My mother who was at the meeting was gob smacked! She made a valid point off…. This will only make him feel more “different” then he already does!

I have been informed by the Sen Caseworker that Little mans purposed statement is in the process of being drafted and should be with me sometime this week. I just hope that something has gone right and it’s been done to a high standard “No corners cut”  The school talked about little man returning to school in Jan 2011 given his not yet got a school placement in a “special school” There would be a change In TA and even more isolation. I just refuse to do it anymore. To be frank, If the doctor doesn’t sign him off… Looks like I will be taken to court for non school attendance. I’ve been there before and to be honest this time I will have a lot more to say!!!!

So that’s my decision and I’m sticking with it! Let’s just hope Little man gets the right school and the chance for happiness in 2011.. Resulting in post that are full of happiness for a change!