My Child’s Diagnosis Didn’t Give Me Depression! The SEN System Did That!

Its funny, Just recently I found myself engaged in conversation With a fellow parent at my daughter’s school. We were discussing depression, a subject I won’t hide from!

This parent reads my blog and is aware that depression has sometimes been a part of my life… More so than not.

So, if I’m ever asked a question I will try to answer it openly and Honestly. I’m not ashamed to say… “Yes I had depression” Why should I be? So, Having engaged in conversation for at least five-minutes with this lady I suddenly came to realise that there was some type of crossed wires on her part in regards to a depressive episode I experienced around 3 years ago! This started me thinking… Does everybody think the same way?

So I wanted to explain something, and do so very clearly! My son’s diagnosis of Aspergers Syndrome didn’t bring out any episode of depression within me. My child being on the autism spectrum has never actually left me feeling depressed! However, what has had me running for the antidepressants is that of the things that come with that diagnosis (like it being stuffed in a brown envelope and shoved in your hands). I’m not talking in relation to little man’s autistic traits, his sleepless nights or sudden angry outbursts! I’m talking about the battles to get others to sit up and listen. Basically, It wasn’t my child’s Asperger’s syndrome that depressed me it was the system in which I now found myself battling with.

You think a diagnosis is going to change thinks. The right help and support will come and be handed to you on a plate… Well dream on, it most certainly won’t! I learnt almost instantly, that for some, my sons diagnosis wasn’t worth the paper it was written on.

Over the years I’ve come to realise that being a parent to a child on the autism spectrum makes you a stronger person. It gives you fighting power, the type you never even knew you had! Because when your a mother its not only your job to ensure your child has everything they need to lead a full and happy life but the love you have for them that drives you. Almost any mother can relate to this regardless if their child is autistic.

Battling schools for appropriate educational services, educating society about autism and getting your child’s voice heard is all part of the package but it doesn’t necessarily mean its going to come with instructions, and I guess it was this aspect of his diagnosis that hit me the hardest.

Being told little man had Aspergers Syndrome was hard, I can’t deny it! No matter how prepared you think you are, you never are… Not really! Even when you’re told by specialists that its almost a certainty and you’ve therefore done all your own research and have reached the conclusion that “Yes, they are right… you can see it too!” I guess its because it makes it all the more definite, more final! But what must be remembered is that little man was the same child he had been the day before receiving a final diagnosis and I wasn’t depressed then!

Its all to easy to assume that the giving of a diagnosis is the reason why a mother crumbles and starts suffering such conditions as depression. What one must remember is that its all that comes after… The fight to make others do the right thing by your child, its this that can really drain your energy both physically and emotionally.

So if your about to receive that final slip of paper enclosed within a brown envelope, then brace yourselves… As the battle begins.

DON’T GIVE UP

I sit here today and I write you this post, a post that shares a very important message!

Don’t Give Up!

Too many parents tell me about the fight they currently face to obtain a diagnosis for their child. They tell me how others see them as uncaring because they are so eagerly chasing a label, one so many, wrongly claim to be unnecessary.

They tell me they just feel like giving up. They state the professionals have suggested they just wait a couple more years, see how things go!

They tell me they are tired, worn and lost.

I tell them it was the same for me… I state how I experienced the doubt, self judgement and sleepless nights! Then I tell them where we are at today!

Yes, I was tired… I don’t think I realised just how much till things had settled. I remember feeling that my concerns were looked upon as nothing but parental paranoia.

I remember wanting to scream out loud “Just shut up and listen” No, correction, I remember shouting this statement more times than I care to remember.

I questioned my own concerns. I felt that maybe I was going mad or worse that it was just me being a mother who was unable to do the job of parenting correctly.

I remember watching the months turn into years as I continued my battle, one that was just to get my foot in the Child Psychologist door.

In between there was issues, ones that turned into significant difficulties. More importantly, difficulties that could have been avoided or at least decreased in scale, if someone had just listened.

I did all I could do, yet it never felt enough.

School attendance fell, school phobia developed, but again, no one listened. Court cases and school attendance officers made my life more difficult and the fact I was found guilty and fined… Well, that just lead to my depression, lack of trust in the British justice system and great weariness in the operations of the LEA and everybody in it.

You sit there and think “Oh God, there really is no answer, no solution, no way to make them listen!” and as I started therapy I remember the endless tears that required my therapist to fetch more tissues. I remember the relief I felt, just to have someone… Sit… Just sit and listen.

Over the course of the battle, I saw my child become a target form both children and adults. I watched him change in personality as he tried to become someone he wasn’t… Someone who he thought he needed to be in order to be excepted.

Life is better now… I didn’t give up!

Little man has a diagnosis and this later lead to appropriate schooling and a much happier child!

You are the parent, you know your child. Don’t let anybody tell you differently.

Don’t give up!

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!

The Kleenex man

I sit staring at the large white clock to the point some may think I’m fixated. It reminds me of the type of clock I used to have at school. I would stare at that clock for hours longing for time to lapse around me.

“Miss Parkinson… Miss Parkinson, can you hear me”

Shut up I thought, of course I can hear you, it doesn’t mean I want to!

But it was I who had came here, no one had asked me to, I wasn’t forced, dragged kicking and screaming.

It was I who had picked up the phone, dialled the number, made an appointment.

Now I didn’t know what to say…I didn’t… well no, I did know why I had come. But now I was confused so fucking confused.

“Miss Parkinson, have you got to be somewhere”

Bloody hell, now I felt as if I was in school! Seriously is he joking?

Sarcasm within therapy whatever next!

“No” I said

“Ok let’s get started, but at your own pace…OK?”

I nodded, I wanted to speak, really I did. I had a lot to say but now I was here my head it was all muddled like a jigsaw with pieces missing.

I had been here before, I trusted him, the man who wore the nonjudgemental face, the man who always had a box of Kleenex at the ready.

That’s why I chose here you see, I needed to see the Kleenex man!

I’m still staring at the clock, its tick and its tock can be heard through the bitter silence.

He coughs…. I look round

He smiles as he passes me those tissues.

Taking one I hold it tightly in the palm of my hand, if I don’t I know I’ll fiddle with it… likely pick it to tiny little pieces.

I take a deep breath in closing my eyes I excel opening them once more.

“Nobody believes me” I said.

I can feel it, the warm water leaving the corner of my eye. Please don’t ask me, I think. But then he speaks

“Who… Who doesn’t believe you, and what is he they don’t believe” he asks inquisitively.

Once more the room is filled with silence and I can hear the ticking and the tocking of the clock. I look down and there scattered around my feet are tiny pieces of tissue.

“Who…?” he asks once more.

As I go to open my mouth I taste the salt form my tears, like a child I catch my breath…

“The school… The school” I whimper.

Silence once more… Tick… Tock… Tick… Tock…

Then before he can ask…

“My son’s school, they don’t believe what is happening, they think it’s me… They think it’s all my fault!”

“They won’t help me… No one will, why, why won’t they help” I plead.

You see, I was close to the edge of crazy, so fucking close. The situation was costing me my health, what kind of mother would that make me? On That very day and at that very time I wasn’t aware of what I’m aware of now! The very beginning of a Journey one I never planned on taking, I don’t have a choice, no one asked me if it was okay, god didn’t ask me. I hate it when people say that god does everything for a reason, he chose me because I’m strong. Sat here writing this I remember that day with my therapist so clearly, and on that particular day I felt anything but strong! I felt desperate, I felt as if I was standing on a mountain screaming and nobody looked up… Nobody! Your little boy is hitting you, his so angry and he charges at you like some crazed bull, but his not a bull his a 6 year old child who tells you “mummy I hate you” as he rages with sheer frustration! But why is he frustrated? It’s just that, my lack of knowing… He wants me to, he needs my to understand what his feeling! I miss the trigger I then spend a lifetime discovering it. No one can teach me, I need to learn myself! But this doesn’t mean we don’t need answers… Everybody needs answers!

Ashamed I said nothing, for a while anyway. But i’m no super mum and soon I broke… Started crumbling into a heap of madness, but when I reached out, there was no one there to catch me. I didn’t say I needed parenting tips, I didn’t need some false caring stranger visiting my home and judging my parenting… Especially when I had asked my sons school for help. I felt judged, bullied… I felt disregarded! They failed to notice the bigger picture, they almost cost my child his diagnosis of Aspergers syndrome, they almost cost me my sanity!

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#HAWMC DAY 17 – Learning the hard way is often the only way

He stood before me, his expression was one of seriousness & confusion…

“Miss xxxxxxx I don’t know what you’re trying to suggest here, but we both know that you made the decision to collect and take your son home, nobody requested you do so!”

Speechless, I felt my whole body tremble. It wasn’t fear but a mix of both anger and shock! This surely wasn’t how it was meant to be! This was… Well, just wrong! 

“Excuse me, but you called me and had me collect him, you know you did!” 

He stared blankly at me as he made a continuous  shaking motion with his head. Suddenly it hit me… If this man could stand before me telling porkers then he could surely do the same when discussing any situation relating to my child. Now, I always believe my child when he tells me something though he does have this unintentional habit of exaggerating a situation a tad so. Now, I’d never again question his words, especially if it had anything to do with his head teacher!

You don’t really ever expect to receive a call from your child’s head teacher requesting you collect your child immediately because they are unable to contain his unpredictable and challenging behaviour, especially when they have always claimed he has no issues at school, implying it’s a “Home Thing!” This is even more surprising given the fact it’s suddenly a recurring event, one that is now being denied! 

This was the kick up the behind I needed to learn everything education related. This included, school’s and LEAs statutory requirements, the SEN code of practice, Education act and anything else related to SEN.

Of course my first discovery was that of “Illegal Exclusions” I therefore quickly got legal advice before putting my findings to the Head teacher and those other professionals attending the current meeting. I half  expected to be thrown a few excuses but to stand and look me in the eye and lie… No, I didn’t expect this!  

Feeling a mixture of sickness and disbelief, I asked myself where we’d go from here. Deep down I knew this was the beginning of a battle… I guess I just never expected it to be so tough!

Yes, this is one of many incidents that happened during Little man’s mainstream schooling, in fact this is a pretty mild example! 

Some of the events that followed were truly horrifying! Exclusions on a weekly basis, especially on days of school trips or special events… He even got hide away while ofsted inspected the joint! He was taught in isolation like some cage animal and the bull shit keep following. 

On one particular occasion when I was collecting Little man from school as a result of yet another exclusion, it was claimed my son had called the head teacher a “Wanker” and I openly agreed. Now… although I did pretty much by this point consider him to be just so, the incident was one that never actually occurred whatsoever, it was all based on lies. Another occasion was in relation to a weekly trip the children made to the local allotment. It was agreed I’ll attend so little man could go! However, on this day I was informed of a staff shortage with the result being a cancelled trip. 

As I sat enjoying the mid-days sun while sipping a lemonade through a straw as I enjoy my last few hours freedom which I happened to be spending with my sister in my mother’s garden that lays directly opposite the allotments. Suddenly, I’m greeted with the most worrying sight. Sitting up I flick my sunnies from my head down to my eyes in order to get a better look! Surely not… No stinking way is that them! But it was, it was all of them, the whole class minus one!

I wasn’t mistaken as a child recognised me and waved… though they were no more than 15ft away the teacher failed to spot me, though I spotted him and god that made me angry! 

I felt my eyes begin to water beneath my oversized sunnies. My sister looked a me, her face a picture of pure horror, she asked… “Claire… what are you going to do?”

“Nothing!” was what I answered!

On collection from school I asked the Little man’s Teaching Assistant what the children did instead of attending the allotment… as expected, I was feed so more bum fluff!

Of course now I was pushed to a limit… With this and a whole host of other sad events I filed a claim of “Disability Discrimination” I had my fighting boots on and I was adamant that I’ll pull them down and show them to be the “True Professionals” they really were!

I’d be lying if I said it was easy! There was tears, lots of tears. Lies… so many I’d lost count months ago. Reading the schools response to my claims I truly saw how corrupt they were as I saw a filed document being used as evidence. This document was a timetable of the allotment programme, it claimed that 2 schools (one being theirs) had agreed to swap days that week, they claim it was this group of children I see! 

A week before the hearing I agreed on a settlement. I  removed my son from the school but I needed to not only have the schools lies revealed as just that… Lies! I also wanted my child to be given a full apologise while it was of great importance that this terrible treatment didn’t continue on in this manner. 

Having rejected a series of written apologies while suggesting alternative wording for the next, we finally got there. The Letter apologised for different incidents as well as stating it would review it’s policies and train its staff in SEN with a certain date attached as a deadline. 

What exactly did I learn the hard way? I learnt that those we often put our trust in are the ones we sometimes should fear most. I learnt how money and funding truly comes before the child when it comes to that of education. Lastly I learnt that I’m stronger than I ever thought I was!

What doesn’t kill us makes us stronger!

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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)

A little bit of inspiration

As I sit here happily, typing while listening to some Mary J. Blige, I think back to a time when things weren’t so pretty!

This time last year I saw myself battling and fighting for my sons rights. I was at the start of a discrimination claim against my Sons old mainstream primary school and was still, like thousands of others desperately trying to obtain a statement of special educational needs so my son would get the support needed in a school better suited to his complex needs. These two battles pushed me to the core, not only was I becoming stressed both physically and mentally, so was my son. I knew I couldn’t give up, not when my son was being treated like an outsider and even faced the prospect of permanent exclusion. He was never allowed on trips or was hidden away during inspections or when the parents of prospective pupils toured the school. He was highly misunderstood and it was slowly killing me! I was never quit prepared for what it would take to get myself through them hard and deliberating days. I had heard some talk about the battles fought to obtain these statements, get children into schools that catered to their needs, yet you never quite realise the true extent of what it takes out of you till your neck high in it! Honestly, I cannot begin to put this into words, those parents of children with SEN (special educational needs) will know what I mean when I say, “It could have quite possibly caused me to experience a full on mental break down! There were tears, shit… far to many tears, appointments, meetings, exclusions and phone calls, over and over again. Some days I was close so very, very close to giving up! Yes, I would often vacillate between giving up or pushing on! I remember all those voices, the ones that told me, “Don’t give up Claire, Its worth it in the end.” Yet it made no difference to me then! That light at the end of the tunnel was nowhere in sight.

It’s one year later and my children have just broken up from school! Unlike last year, I don’t dread the day my son returns, not now he will be returning to a better place. Yes, as many know already, Little man is in an Independent special school for children who have autism/aspergers as their primary need.

Little man spent so long isolated in mainstream, then home schooled before finally getting a great tutor. However he was still without a peer group! I really did think that it would take so much longer to settle in this new school than he actually has. He is already up one sub-level in his reading and earned himself a fantastic school report. His school have told me his a, “Great lad and a lovely boy!” For me this is amazing and almost brought me to tears. Silly… I think not! If you have ever watched your child’s education and self confidence fade away, then you will understand this feeling of joy I’m now feeling inside.

I know there are still hundreds of thousands of parents still fighting that same battle and by god do I empathise! The experience affected me in such a way that in November last year I started a voluntary role advising parents on their children’s educational rights and helping them through the tribunal process. I also started a Facebook page a few years back that now has over four thousand members, parents like me and young people on the spectrum comment daily about the lack of support received from the system. I hear our own story repeated over and over, so similar in so many ways it’s scary. I try and encourage them parents not to give up and remain strong for themselves and their child, yet I know that like me they must think, “It’s no use!” But those who have read my story over the past three years would have read some of my most testing moments, from pre diagnosis to full diagnosis, court cases brought against myself for non school attendance and the battle to bring Little mans discrimination at school to a final end. You will remember the posts that I wrote through tears at the inability to get my child what he needed,  “A Statement” and the tears I cried for once I had succeed it was hardly worth having. Then there’s the fight for an amended statement and a long search for a place in a special needs school. Gosh the sheer pain I felt discovering that every school the LEA approached just refused him, stating his needs could not be met, No one would give him a chance! The LEA would not agree to my parental choice of an independent special school, so… I fought and fought and with all my strength giving all I had, we made it… we finally made it here!

 Achievement slips and certificates replace the dreaded exclusion letters. Phone calls are made and emails are sent containing words of prise! Although his had some difficulty days, those around him understand why, they remain consistent,  they just get it! This was something I found difficult to vision a year ago. I never dreamed I would be displaying a picture of a smiling Little man at his new school, Yes that special school I fought for! I never imagined that I would proudly post a picture of all his rewards. This wasn’t because a lack of faith in my child, but a lack of faith in a system that had continually let us down.

I’m not stating we will never face a difficult moment again, and will always now remain overcautious. I’m sure we will have our ups and downs, but for once, for the first time in a long time, I feel we have achieved something amazing. My son is writing, literally putting pen to paper, something he had refused to do for a whole year! Things like these are the little things a parent of a child that has no difficulties could easily take for granted. For us these are reasons to celebrate.

Do you know how long it is since my son did a parenting and actually enjoyed it… To long! When he brought this painting home today I was incredible proud, so much so I could have burst.

I have a few reasons why I decided to bring you this post today. I of course had a desire as a mother to shout from the roof tops, “Check it out my sons star of the week at school” (the worlds of the proud mother). My second reason was to post in the hope that all my readers, the ones who are in that dark place I was in a year back, take some inspiration from it, they remember my story and think, “If she can do it, so can we!” and lastly because today is Special Saturday

I wish every single one of you the best of luck, stay strong, I’m always here to listen.

Related articles

• You: Special needs schools suffer £1m funding cut (guardian.co.uk)
• A Great Resource for Parents (theprospectschool.wordpress.com)
• Special Saturday! (sweetdeanie.com)

Aspirations Or Clever Financial Alterations! You Decide

We waited and waited and on the 9th, March 2011 we finally got to see  what the Coalition had in store for us in way of the ‘Green Paper’ titled ‘Support and aspiration: A new approach to special educational needs and disability’

Talking as a parent i’m pleased to see that the  proposed education, health and social care plans (EHSCP) that are planed to replace statements of special educational needs will still give parents the same legal protection that a statement brings. The proposed plan would be aimed at 0-25 year olds not just school aged children. The plans will also involve support in the areas of health and social care as well as education, something that has been missing for too long! However I do wonder how this will affect those already with statements especially in terms of funding and the talk of allocated key-workers. Surely the statements will be reviewed in the same way as the EHSCP and so forth! The statements will therefore need to be maintained in-till the child reaches 25 and be amended to include the health and social care aspect.

Another proposal I welcome is the prospect of being given more choice on where our children are educated. I know many will accuse the coalition of  creating barriers to inclusive education in mainstream schools, but I am a firm believer that mainstream is not always the right way. People must remember that all children are different regardless of their special educational needs or disability, Just because society thinks that every child with sen/disability should learn beside their peers, In reality this isn’t easy for some (My son included) I believe that mainstream was seriously affecting his mental health which is the case for many children. I’m also very interested to hear more on the proposal of individualised budgets with greater parental control giving us a voice that allows us to express views on what services and provision such funding should provide. This is proposed to come into action by the year 2014. In till such date I will remain completely open mind. My mother used to tell me, “If something seems to good to be true, then it probably is.” For that reason I dare to get my hopes up.

Some maybe shaking there heads branding me a pessimist! Well, they would be correct, I’m just that!  Sadly it’s true but myself like many others have been made to feel this way when it comes to SEN & education. It’s my opinion that things will never be easy and we are used to battling for every thing our children need. I for one would be a little shocked to discover that I actually had some time on my hands to do other things instead of battling the system by way of phone calls, meetings, emailing, letter writing, campaigning and so on…  I really struggle to get my head around the idea that parents will be able to have an active part in the decision process surrounding their child’s provision & funding. We have to drag the local authority by the arse all the way to the tribunal just to get a little TA time or use of a laptop! So if this does plan out I for one will fill a little strange being suddenly heard and valued (Well, valued maybe pushing it a tad to far!).

Though some of the proposals look good on paper, I’ve been asking myself , “Are these just words being sugar-coated to look sweeter then they really are?” I mean, let’s not forget that the government are in the process of making huge cuts which will affect many of the services that have a role to play within this very paper. How will they be able to provide what is expected of them? Another important question to ask is, “How much are the Coalition planing to save through the implementation of the green paper?”

I’ve also been thinking about the legal side of things. Given the position I’m currently in (Advising parents on their appeal rights on LEAs sen decisions) I see a lot of re-training heading my way if the green paper is fully implemented. The law would need to under go a radical overview, with large areas, especially section 26 and 27 of the Ed act 96,  needing to be rewritten from scratch and the publication of a new code of practice.

But one of the biggest concerns for me is the proposal of a “single, multi-agency assessment” on the same day, rather than separate assessments on separate days. As much as I welcome a speeder assessment process then that of the current statutory assessment (10 week assessment, with the overall process from start to finish taking 26 weeks) but to propose just ‘one single assessment’ with the involvement of all professionals (and possibly even voluntary agencies) is quite honestly barbaric!

The paper has empathised that those children considered to have the most complex needs, will be the children assessed and issued with an education, health and social care plan, therefore how do they propose to assess a child with such complex needs in one single assessment? Children on the autism spectrum will be just one group of  many children who’s needs may be completely missed due to the child’s particular mood, environment, behaviour, anxiety , etc., on the chosen day of the assessment. I know that my own child would not cope with such an assessment, what with all them eyes on him and questions fired at him! What would it even involve? Are we talking about sending an autistic child (or any child for that matter) into a room with a large number of professionals sat with inquisitive prying eyes, clip boards, and a list of questions as long as their arm? If yes, I guess they can expect a shock at the response they get! It just isn’t going to happen… Surely complex means ‘COMPLEX!’ my definition of  such a word would be, “A complex issue or range of problems that take time to fully resolve” The government is forever banging on about children being placed on the sen register at the drop of a hat, well, I can see a situation being created leading to children dropping of it just as quick!  My son can just about cope with an assessment with one or two professional, any more then this rather than being chucked off the register, he will likely be labelled as a child who is dangerous because he will likely hit out as an attempt to escape the highly stressful situation that he has been placed in. Although I agree it’s not ideal him or any other child with sen having to undergo a range of assessments over a course of time, the one day method wont make things any better but a great deal worse!

Let’s be honest would you or I enjoy being sat in a room with a range of people staring at you like some caged animal reporting your every-more?

26 weeks is way too long but one day! Seriously there is no in-between with this government. I mean do the they really have the child’s best interest at heart?

We have to ask ourselves, has the green paper been created with the  ambition of improving the life chances open to children with sen, and  to offer better support for family members, or is it really their ambition to do away with essential services and provisions with little uproar, while at the same time attempting to reduce the number of  children that are placed on the SEN register?

It’s those children considered to have less complex needs that I’m  seriously worried for!  What defines less complex needs? I’ve spoken to many parents hundreds in-fact that have battled in the past  and present with both schools & local authorities to prove just how complex their child’s needs actually are! I know from past experience that schools won’t except this in-till your child is pushed to the point of self-destruction or has become a complete failure at everything due to the stress they have been placed under. Parents of children with Aspergers or high functioning autism find this to be the case a huge proportion of the time. School’s and LEAs say the same thing over and over again, “Your child isn’t an underachiever, therefore warrants no provision to be made for him/her!” Yet there they are whacking their heads against Walls with the frustration of the work load or noise levels in the classroom, they are always running into social difficulties, becoming isolated from their peers and even excluded on a daily/weekly  basis. It’s ludicrous!

By doing away with school action and school action plus I fear these children will suffer a great deal more than they are currently made too already! What with schools being able to commission the services and put the provision in place that these children are said to need, in this current financial climate is like playing with fire. Much more detail and reassurance is needed and although I know that we are once more welcome to give our views on the paper, I just feel given the length of delay in publishing the paper, including some finer details within in it as to make things a little clearer would have been most welcome!

Ministers have to give the public more information in regard to the finer details that make up the aspirations of the green paper. Including the legal aspects, cost (including how much this new system will put back in to the governments pocket in way of savings) and very importantly the statutory duties of those involve

To some parents this paper means nothing! To others it’s the prospect of a better further for their child in both the early years and that of early adult life. Making provision for children aged 0-25 in all areas of education, health and social care is long awaited. Will this be the start of something promising or just another unfulfilled promise by another Government?…. Only time will tell!