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

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

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

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

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

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

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

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

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

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

I defiantly agreed!

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

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

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

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

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

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

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

I guess that told me!

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

Why Autism Sunday Matters!

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.

Getting to grips with the seven senses

Have you ever found that something caused you such annoyance that the stressfulness of the situation forces you to stay away, avoiding the source of stress at all cost?

What about if something caused you pain and discomfort would you avoid the source inorder to gain control, be free from the pain, living your life in the most prosperous way you could?

Imagine if the most common stimuli… sounds, smells etc… caused you the above on a daily basis! Everyday tasks being a protentral hazard causing you high levels of anxiety… But even worse you are unable to escape the trigger but instead expected to tolorate it!

imagine if you hated spiders, feared them more then anything else but u were forced to let one crawl all over your body… How would that make you feel?

Think of a situation, a fear or phobia that causes you high levels of distress, imagine having to deal with it every single day! Yet no one “gets it” your totally isolated and alone… Being seen as a drama queen, attention seeker or labelled as a trouble maker.

So many children & adults on the autism spectrum have difficulties with their sensory processing, some more then others, however when it’s a problem it’s likely to be a significant one! School, home, shopping centre where-ever the trigger lie, problems with sensory processing can be experienced just about anywhere. School is an obvious culprit for children given the amount of time they spend there. School can present huge problem, unstructured time is normally always a trigger for the child on the spectrum and you may find as a parent that your child is being labelled as challenging as a result of this.

There are seven senses that make up our sensory system… These are Vestibular (movement-balance), proprioceptive (body awareness), tactile (touch), auditory (hearing), visual (seeing), gustatory (taste) and olfactory (smell) Some may have problems with all the above, a few or non at all! It just depends on the individual.

The example of the spider was given to me by my very clever little man, who was trying to explain to me how he felt when forced to tuck his shirt into his school trousers (school uniform was a huge problem when in mainstream)

Little man has a range of sensory processing problems some worse then others. I would definitely say that he has the most difficulties with his tactile sense but auditory, visual and olfactory come pretty close. These have become more obvious with age.

It is said that people who are tactile devensive will likely have problems with fine motor skills that are related to academics and self-care skill which is very true for little man.

Lights tend to upset him too. While at the library with his tutor he was finding it hard to engage due to the lighting. This was because the lights were all different which meant they all let of a different degree of light, some brighter then others. When he first started he came home and asked, “Mum, why can’t the library stick to the one type of lighting instead of having all different types” he then went on to say… “Some flicker and buzz which is so… annoying!” He would also come home with a pounding headache. This was due to both the lighting and the fact he had actually engaged in work alday something he hadn’t done for the whole of 2010 while in mainstream. His now managing to cope reasonable well with the lighting and if anything his becoming quite good at blocking it out. As long as he isn’t sat in the brightest spot or beneath a buzzing bulb his OK.

His tutor is excellent and has worked out that by letting little man listen to music through his headphones (oh yes Bruno Mars is repeatedly played) while working he can engage better. Many don’t get this but his a bit like me there! I will blast music through my earphones while tackling important work as it means I am able to block out the world and completely get into my own zone resulting in getting important work finished ontime and to a high standard.

Every single day I learn something new about little man and how AS affects him. It was only the other day that I discovered the reason for little man wanting his trainers done up so tightly that it almost stops the blood flow! It’s actually a sensory related issue! It seems logical now and I can’t understand why I hadn’t realised it before. He says they need to be tight in order for him to remain in control of his feet. Shoes that move around freely give no control he told me. I completely get it now!

Little man can also be a little bit of a sensory seeker. He likes rough and tumble (play fighting) sadly due to the lack of understanding from school little man was all to often excluded for such behaviours. He also likes memory foam pillows, trackpants (he wants to wear the same ones everyday no matter how dirty they have become) and certain textures that he just has to touch.

The above are all fine but he does have a liking for fizzy drinks. This isn’t just a suger thing but definitely a sensory one too… How do I know? Well he cried the other day due to my refusal for him to have a can of fuzzy orangeade. I offered juice and he states “it’s not the same” He then goes on to inform me that it doesn’t feel the same in his mouth or going down his throat.

So there’s a bad habit need fixing.

So… My over all point to this post is for some awareness to come out of it, example… When a parent tells you that, “My child really can’t tuck his shirt in as this causes him physical discomfort that is one step away from what we describe as pain” We don’t really mean… “My child can’t be arsed to tuck his shirt into his trousers” or “My child can tuck in his shirt in but chooses not to as a deliberate attempt to piss you off” We really did actually mean It when we told you he can’t!!! For you to state, “Really I’m sure he can if he wanted to” is really offensive and like asking someone in a wheelchair to walk upstairs!

The child or Adult on the autistic spectrum has an array of difficulties aswell as qualities! Next time you sport a child throwing a “wobbler” in the supermarket, street, school gates or wherever else it may be. Stop and ask yourself is it sensory, is it autism or another difficulty, hidden disability you will never know so therefore should remain openminded before pointing, commenting or passing judgement.

After all how would you deal with fear, phobia, pain and discomfort if those around you had no understanding of it?

Sensory processing problems are very real, just as autism is! And for that reason it should not be looked upon as anything else!