Tag Archives: school phobia

I Just Want A Hug

4 Oct

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!

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Blink and I’ll sleep for a week!

18 Apr

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

picture of  Little Man and Mr Magic

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

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

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

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

22 Feb

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

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

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

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

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

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

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

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

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

I defiantly agreed!

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

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

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

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

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

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

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

I guess that told me!

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

Why Autism Sunday Matters!

13 Feb

Today is a big day in the land of autism for today is autism Sunday.

It’s sad but true, that for so many this means nothing. But then if Autism Sunday existed some ten years ago would it have meant anything to me?

“In a nutshell.. No” I would not have gave it a second thought to be honest, So to judge others would be hypocritical of me.

However things should have moved on a lot more given the rise in numbers of diagnosed cases of ASD today.

Little man was given a late diagnosis of Aspergers. Despite being taken on by camhs at age seven. During that very first visit we were told by the psychologist AS was likely to be a suitable diagnosis and referred onto the commications clinic he was actually nine when he received the formal diagnosis. That first psychologist who just knew it was AS moved to sunnier parts of the world and our loss was Australia’s gain. I beleive that if he never left things would have been formalised much sooner then they were. It was said that he displayed a mixed picture as school were insisting that they had not seen the behaviours I described saying that in their opinion any school problems were down to poor school attendence. I had a child who was on the spectrum and school phobic! But who the hell would listen? Two successful court apperances for the LEA shows that no one would. The same psychologist told us before he left that in his opinion it would only be a matter of time before little man is no longer able to surpress his anxieties when at school and as he gets older the taits of his suspected AS would unfold right before they’re eyes in an explosion of meltdowns, inappropriate languge and maybe even episods of violence that are beyond his control brought on by pure confusion, frustration and misunderstandings. By this time it would likely be to late for the mainstream relationship to continue.

As soon as he told me AS was suspected I cried so much that my eyes hurt, they honestly burnt… I then went home and started educating myself on everything autism spectrum. Suddenly everything begain to make sense for the first time in ages. For me it was becoming clear my child did in fact have AS or ASD. Later during my first court apperence for little mans constant school refusal I discovered the letter camhs had wrote to the school… It stated that they thought little man had ASD maybe Aspergers and that I was finding it very difficult to get little man to school, the likely effects his possible AS, insomina and anxieties. He went on to say I would need more support. He said he did not feel little man’s attendence concerns were due to a parental issue. It then went on to state how I was very shocked at the possible diagnosis and had become quite emotional. He had basically told them to give me a break! Yet stappled to that very same letter was a statement made by the then attendence and welfare officer (AWO) that read… “I can’t understand why mum would be so upset as it’s in the family” She was referring to little mans cousin on his fathers side, who was diagnosed with Autism aged 2. I was shocked to the core… How bloody insensitive was she! Come on if you have a family history of cancer, heart attack, diabetes which I do, would it therefore mean a person should not be shocked and emotional with a diagnosis of this kind? I’m not comparing any of the above to ASD I’m simply making a valid point of, “No matter what the bloody family history a diagnosis of any kind is bound to be an emotional one for any parent!” This woman showed ignorance on a whole new level.

Though my nephew now 8 was given a diagnosis of autism at two, I still knew little about the condition despite actually unknowingly raising a child on the spectrum. He was my first born and though I knew he was different I just didn’t know why.

I was treated like a lazy arse mother who couldn’t be bothered to get herself and child up and out of bed in the mornings. The threats of court action that were eventually carried through by the LEA and delivered by AWOs nearly broke me not once but twice! “This wasn’t what me or little man needed!” I would think to myself while sat though parenting classes that were directed at parents of unruly children (mainly teens) A few of the topics discussed included drugs, truancy, sexual relationships and teenage pregnancy! I stood up one evening and said, “what the hell am I doing here? My child is eight years old!” This was absurd, to my knowledge little man didn’t have a bloody clue about drugs! and I sure as hell hoped he wasn’t planing on making out with the ladies just. Still I sat through many useless classes as a result of that first court order.

Lucky for me the second court apperence was a nice big fine instead! Note, * Pure Sarcasm* Yet it could have been worse the LEA were taking me to court on the more serious charge of 4441(a) which basiclly means… Being a parent of a child of compusory school age who has failed to ensure their school attendence and the parent knowingly allows this by not taking him/her to school as opposed to 4441 of the education act that just means the above excluding the knowingly allows part! So how could it have gotten any worse? Well the penalty for 4441(a) is a prision sentence, level 3 fine or both. The judge dismissed the LEAs claim and although I was punished for having a child with AS who was a school refuser it was treated as 4441 meaning a lighter punishment of a £300 fine that I didn’t have so had to pay in installments. Of course this money would be better spent on my children, but hay injustice is never fair.

You really need all this what with being a parent of three children, two school aged (one with AS) and a newborn baby (yes second court apperance was served on me a few days before I gave birth to my youngest

Well the psychologist was right and those that read regularly will know that yes little mans AS did unfold before the schools and LEAs eyes and was dealt with by way of isolation, exclusions (I’ve lost count) In fact little man was being excluded as I stood in court like the naughty mummy I am! and now he receives education otherwise then at school while he awaits a place at a special school and the copy of his final statement of Special educational needs. There is also a pending disability discrimination hearing so a lot has happened since them court apperences most of it isn’t great as you can clearly see.

It’s no good being bitter, It eats away at your insides! However it’s hard not to be given you have stood in court twice, your childs school reported no issues and a year and ahalf later his had more exclusions then I’ve got shoes, you battle for a statement and work your arse of preparing your case for the tribunal due to your claim of discrimination, your child is now without a school and has zero self-esteem, you read reports from education professionals that show that they spend more time assessing you as a parent and questioning your mental health, that the child is left to fall through the cracks in the system, your tired.. so fucking tired that you burst into floods of tears because you spill the cereal at breakfast and you even forget your own bloody name when filling out forms!

Despite all the above I can now say I’m not bitter! I’m stronger! Though my battles are clearly not over and likely one will always arise. I’m putting my experiences to good use by helping others. I’ve done my training and now help other parents of children with autism with a right of appeal to the tribunal. I’m working with little man and his tutor to repair the damage of late diagnosis and mainstream school and today I will be saying a pray asking god for better understanding and support for those children and adults with Autism and Aspergers. Please Note this is not because I believe they are incabable of leading a perfectly good normal life, but because I believe the system does a pretty fine job at trying to make sure they can’t! Late diagnosis, long waiting list, battles to statement, lack of provision, jobs and support services are lacking and though I follow an array of campaigns trying to better all the above, progress is still lacking!

I think David Cameron needs to do a little more then say a few supportive words in aid of autism Sunday! However what did we expect when words are free! Let’s not bank on any support that costs money! The man is slowly stripping the country of it’s children services alongside the very few service supplied to adults on the spectrum.
I think in all honesty the man has some bare faced cheek.

Later today I will be posting an interview on the blog that I had with a very nice man called Coiln who wasn’t diagnosed with Aspergers till he was 44 years old. Did he get the support once diagnosed?

I think we all know the answer to that. What will it take to make things better? Anyone!

I wish you all a great Autism Sunday! Let’s aim to raise some real awareness today to all those untouched by ASD.
We are not asking for anything but a little less ignorance and tad more understanding as the odds are rising that someone you know now or sometime in the further, will have a autism spectrum condition with numbers of diagnosed cases rapidly increasing it seems like an idea to me.

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