Holy Macaroni Its A Panda

It’s around 1 P. M Friday 27th, May and I’m applying the last coat of mascara In my desperate attempt to become something of a yummy mummy, though human will properly do just fine (no sleep the night before makes this a challenge). The plan is to make myself somewhat presentable in-order to escape this house and the housework that comes with it and instead hit the shops before my little “cherubs” return home from school! As I grab my handbag and a pair of lifesaving oversized sunnies (recommended for any tired mummy for hiding a multitude of sins ), I set off for the door where I’m greeted by our “ever so friendly postman”.

Bills, bills and more bloody bills… Hang on what’s this??

Err, I hate surprises, in my experience surprises put through my letter box are not usually the welcome type!!

I tore open the envelope and began to read… blah… blah… blah… “Holly Cow!!” I couldn’t quite believe it! I read it again, then again, then yes, you’ve guessed it… AGAIN!

My eyes start to blur, a tear drops onto the paper, closely followed by another, they rapidly increase in-till the words written within the letter are no longer recognisable.

For once these tears were not caused by sadness, but joy, relief and gratitude! Throwing my head back, I looked up above and said aloud, “Thank you god, thank you!”

My Little man had just been given a chance, a way through, a future!

This letter was from a school, not just any school but one that I have been keen for little man to attend for some time. (Keen being a slight understatement!) The school is fully independent and even better it’s an autism specific school.

Holy-Macaroni… Its so long since anything went right with little mans education that I was a little unsure how to react. Is it appropriate to give it some… “Woo-hoo get in there my son!!” (Quite literally) How about engaging in a little victory dance? One things for sure, as ecstatic as I was, something seems to be holding me back from doing either!

It’s Just a school placement right!

It’s so much more then that for us, for Little man! It’s his chance! Shamefully it’s been a hell of a long time since anyone had been willing to offer my son such a thing!

Do you know how it feels to suffer rejection over and over again? Maybe you do! But how many people can honestly say they knew that feeling at the young age of ten? I’ve watched every last inch of Little man’s self-esteem fade away, I’ve seen & wiped the tears from his eyes, I’ve spent days and nights giving him reassurance, trying to repair the damage and help him gain back his confidence… only for someone to come along and undo it all again, all them hours, days and weeks to make progress… vanished in seconds.

The worse thing of all is the questions projected at me! I’ve had to answer questions no mother would ever expect nor want to answer when their ten year old child asks, “Mum, why can’t I just be normal” or “If there is a god, why wont he help me fit in?” These are a selected few… There are sadly many more, some I find I am unable to write, by doing so I become a broken mess with questions of my own! This accompanied with his tendency to self harm by throwing himself into brick walls or his scratching his arms till they bleed is the extent of damage been done at the hands of those that should have provided an education suitable to his needs while ensuring his emotional and metal well-being was protected from harm, but instead taught him that, “it isn’t OK to be who you are!”

My son went through something I wish for no other child or adult! He was discriminated against for being the person he is, because it wasn’t what was considered “Normal”, what society expects from a child! As his mother I felt somehow responsible for this after all it was me that placed him in this mainstream primary school! I finally did remove him from at the beginning of December 2010, which felt amazing for all. Being a parent who has a legal duty to ensure their child is in school has been a nightmare for me! I have a child with social communication difficulties who developed school phobia (Yet no one told me such a thing existed) why ever not? After all this landed me in court.

The above was a situation I was placed in twice and of course this was before his behaviour became unsettled & challenging in the school environment.

It was towards the end of year three that things change! Along came a string of both unofficial exclusions (aka Illegal exclusions) and fixed period exclusions with added threats of the permanent type on a regular basis. There was even an unsuccessful push towards a pupil referral unit (PRU). I decided to get myself educated on education law… More particularly that of ‘Special educational needs‘

When your child is excluded or removed form every school trip/activity, isolated and hidden on the day of inspections, then you know there is something very wrong happening! Just before our tribunal hearing for the case of disability discrimination, I finally agreed to settle. A formal letter of apology was given to myself and Little man, review and adaption of policies was agreed, and most importantly staff training in special educational needs and discrimination would be carried out by July this year! Having removed him from the mainstream setting he has now been out of school since early December last year. Yet before this time he was only in half days taught in isolation (himself and a TA) this or exclusion meant he was educated at home more then in school. Since January he has received home tuition, on a part time basis of five hours per day. During this time and also on this very day I have been battling for amendments to be made to Little man’s final statement of SEN. This had been so badly written and lacked so much provision it wouldn’t be worth having (In other words it was no worse then not having a statement at all) Of course the LEA wouldn’t agree to the high fees of the independent school and firmly stuck to their guns, Well… they did up in-till time started running out. Having searched high and low for a state run special school over an area of around four or five boroughs, with all schools claiming they could not meet Little man’s needs. The LEAs response to the tribunal on the 5th of this month therefore stated that they are no longer in a position to oppose pt 4 of the statement, “My request for the independent school” as they were unable to secure a placement anywhere else!

Wow.. This meant that the LEA had approached all the school’s they felt suitable for little man, yet all refused… Although I wanted my Little guy at the independent school, it was still disheartening knowing no one else were willing to give him that chance

The school had assessed Little man in the library setting on the 16th and just this week he took a tour of his soon to be new school. Although he states his never going to a school again and his now really attached to his tutor, something magical happened as he liked it so much he asked, “So, when do I start?”

A slow transition at little man’s own pace is planed. This will involve his tutor attending alongside him in the beginning gradually reducing the support as his confidence grows.

I won’t lie and say I’m not scared, I’m petrified! Yet something tells me to put my fears aside because this is where it all begins, this is where it gets better! I have the pleasure of seeing my child happy as over-time he rebuilds all that’s been lost and damaged along the way, while achieving his dreams & showing everyone that never offered such chances or failed to see him as more then a child with difficulties… what they missed out on! An Amazing boy With Aspergers

Oh, in cause you’re all wondering… Did I make it to the shops? Yes, I did, though I wished I had looked in the mirror before setting off! All that crying had me mistaken as a Panda bear that or battered woman

Remember if you like the blog and think me and the little guy deserve a nice shinny award then please vote us the most inspirational blog at the ‘Mad blog awards 2011″

From the heart of an eight year old

Today’s post is a very special one!

Yes, it really is! Today is the day I write and publish a very special interview, one I’ve contemplated writing for sometime now.

I wanted to raise some awareness, not only for children on the autism spectrum, but those children closely related to them.

Well, you can’t get much closer then a sibling, well maybe if that sibling happens to be a twin! But a sibling is the closest I’ve got  (no twins in this house)

My daughter is a very outspoken little lady, she’s eight and like many little girls her age, she’s sometimes a bit big for her own boots.

Still I have no complaints, my little girls a treasure, a real joy to be around (99% of the time) But as I’ve written In a very recent post, these siblings fight like cat and dog.

Little Man and his sister couldn’t be more different! Yes I love them both the same, just as I do my youngest, ‘The walking home-wrecker’, “No, his two young to be a ‘marriage wrecker’ but he is an eighteen month old vandal who I’m considering awarding an ASBO!” Of course I’m joking, then again ask me that when his feeding the DVD player ‘Whootis’ and watering the plants with fruit juice.

My point is, “IF I EVER QUESTION LITTLE MAN’S DIAGNOSIS BY ASKING MYSELF DID THEY GET IT WRONG?” I just look at the differences in the way my two eldest children interact, play or socialise. This corrects my way of thinking almost immediately, even when things do seem relatively ‘normal’ and the questioning sets in there is always something around the corner to point it out.

Well, as usual I’ve done enough rabbeting for one post! So, with that I will now introduce an even bigger chatter box, ‘Miss Alice-Sara’

AFTER WHAT SEEMS A LONG WAIT SHE COME’S FLYING THROUGH THE DOOR LIKE A WEST-END THEATER STAR!

Umm… As I expected, she’s dancing around, flicking her hair and striking a pose. A gentle reminder from mum ( yes, that’s me) reminds her this isn’t television.

Mum: So,  if your finished giggling Ally would you like to start?

Alice-Sara: I’m finished, just one last *giggle* That’s better! What you waiting for mummy?

Mum: *cough, cough* shake head, ready now are you Ally? Right… Can you please tell me what your name is, how old you are and what school you go to?

Alice-Sara: Well, My name is… ‘Alice’, I’m 8 years old and I go to XXXXXX Primary school.

Mum: Very good! So Alice! Can you please tell everyone a little bit about your family Alice!

Alice-Sara: what like who they are and that?

Mum: Well, who do you live with, do you have brothers or sisters? Remember the readers don’t know you, just me!

Alice-Sara:  Oh, I thought so! Ok, I have no sisters (rolls eyes, sticks up bottom lip and crosses arms). I have two brothers! A baby brother and a big brother, who is sometimes really bad! Well, most of the time actually! Oh, I’ve got a kitten, well, we have two kittens but ones my brothers, and guess what they were really scared but now they are getting used to us.

YES, ONE VERY EXCITED LITTLE GIRL WHEN IT COMES TO THE NEW ADDITIONS TO OUR FAMILY!

Mum: That’s really great Ally! So, do you remember why mummy asked you to do this special interview today?

Alice-Sara: Yep,  Sure do mum! It’s so I can tell everyone what it’s like to have a brother with Aspergers!

Mum: Yes that’s right! Do you know what Asperger’s is? Should mummy explain it first (Not like I expected her to agree)

Alice-Sara: No, no… I can explain myself! Well, Aspergers is something that makes you a little bit different, no I mean a lot. He can be very naughty for sure! It means you like buses, or something else like buses, you like it a lot a lot, and that’s what you like to play all the time….., Isn’t it Mum!

Mum: Yes, I see what you mean! Little man has a special interest in buses! That’s right Alice! So, anything else you want to add or are you finished?

Alice-Sara: Umm… Your brain is a bit different I think, and you do things in a different way (looks my way for clarification, to which I give a gentle nod) Oh, You can cry if someone is just looking at you, can’t you mum! My brother hits me if I look at him, he says I’m pulling faces!

Mum: Does he hit you a lot?

Alice-Sara: Err Yer Mum, you joking? You know he does! I sometimes get so angry that I want to burst open… I say things I don’t mean sometimes, like… I wish you wasn’t part of our family! But he always says horrible things to me.

Mum: Like what?

Alice-Sara: Well, I don’t want to swear mum, or am I allowed to so that I can tell you?

Mum:  No…. I’m sure there’s other names he calls you that don’t require any swearing! (though I’m struggling with that one myself)

Alice-Sara: I know! He sometimes calls me butt head and fat!

Mum: You know your not fat though Alice don’t you?

Alice-Sara: Umm… Yes…., but I’m not a butt head either you know!

Mum: I know your not! (Flash her a smile and she gives me a quick hug) So, what’s it like at home? Do you play with your brother?

Alice-Sara: Not so much anymore. We always have to play school’s but he would always be the teacher (she is really exaggerating her voice). He just shouts the same thing all the time, like, “SHUT UP AND DO WORK, YOU’RE NO GOOD! NOW GET OUT MY SCHOOL”  That’s not the only way I showed him how to play schools! (Big shake of the head with hands on hips lol)

Mum: What, you showed him how to play schools?

Alice-Sara: I teach him all my games, but he just bosses me about and always puts a bus in our game somehow, even when I say no”buses allowed!” I’m not allowed to stop playing when I’ve had enough but he just walks away and stops playing half way through a game, “Yer that’s so annoying” Oh, and he don’t say anything, just leaves! He goes of making that noise! (Again roll of the eyes and raises her eyebrows)

Mum: Noise………?

Alice-Sara: Yes, you know mum (she says in a very low voice, almost as if she’s whispering), the noise… he always makes… I will do it quietly because he will go crazy if he hears me, I’m not allowed to like what he likes am I! “Beep, beep ,beep ,beep… but a lot more fast, then he goes sussssh it’s the beeping of the bus doors and the noise they make when they open and close! He loves that! It gives me and mummy a headache sometimes, don’t it mum, don’t it!

Alice-Sara: Oh… Mum, mum, I forgot! He uses strange things to be the front of the bus, *giggle* He uses a spoon or pencil and holds it in-front of his face, Oh, one more thing… he uses mum’s sunglasses as the bus doors (her voice lowers and as she giggles that cheeky giggle she says, “He always breaks your glasses don’t he mum!”)

Mum: Yes, he certainly does Ally!

Mum: Ok, just a few more questions now Alice!

Alice-Sara:  Oh, I’m having fun 🙂

Mum: I’m glad! So, how about school! Does your brother go to your school?

Alice-Sara: Not anymore! He goes to learn at the library and gets to do fun stuff, *Huff* “I wish I could go to school in the library!”

Mum: You wont say that when your bored with no one to play with!

Alice-Sara: Yes I will!

Mum: Alice……

Alice-Sara: OK, OK, maybe not! I do have lots of friends in school! My brother was a little bit bad at school, but sometimes people were horrible to him and that makes him more naughty.

Alice-Sara: I do love him because his my brother! Mum, Is it Ok if I don’t always like him though?

Mum: Of course it is honey, of course!

Just one wish

hello readers

So, there’s a few days left of the Easter half-term and as it draws to an end so does my ability to stay calm cool and collective.

I always long for the half-term due to the whole mess that is, ‘Little Man’s Education’, however with him no longer in the mainstream setting that caused him so much confusion and instead receiving an education through a tuition plan applied by a tutor on a one-2-one basis at the local library his been longing to go back. The lack of routine this Easter is driving him loopy. Yes, I try my best to make things predictable but life isn’t always agreeable. What with a string of assessments in preparation for our upcoming tribunal and the fact I’ve been so unwell, resulting in my shorten temper, things have just turned crazy.

His spent much of his time indulging in his ‘Special interest’ by getting stuck into and memorising a stack of bus routes, but come the second week his perched on the edge like some ticking time bomb.

Off course the bomb went bang and so did my head. His been a complete nightmare the entire week!

Will he comply with any request… Hell no! He seems to think the world is plotting against him, yet I’m starting to think it’s me it’s plotting against! His arguing with his sister day and night (yes, kids argue but come to my house and tell me this is normal)! His also disturbingly loud (ask the neighbours) and has trashed the house more then once!

Meltdowns… I know all about meltdowns… Do you? We are not talking tantrums here, are you crazy! This is some hardcore S***, “Excuse me”, but this is something that I his mother will refer to as ‘Torture!’

Unless you’ve been there, lived it and breathed it, you can never begin to understand just what it is I’m rambling on about! It’s not like the ‘terrible twos’ nor is it the ‘boys just being boys’ scenario ! No, it’s the, ‘AUTISM SPECTRUM SCENARIO!’ If I ever need reassurance that such blow-ups are a direct result of his AS then I just look at his eight year old sister and it’s confirmed in a blink!

I can’t fully explain what its like for him! His low tolerance for certain everyday situations that trigger stress, his inability to control his emotions in a more socially acceptable manner! The reason I can’t explain is simple,”I’m not in side his head, I’m on the outside peeking in, just wishing I could fully understand!”

As his mother it’s my wish that I could fully understand what his thinking, what makes him tick! Give me a wish and that’s what I’d wish for, “TO BE INSIDE HIS HEAD”, It’s hard not to become frustrated for I have tried to learn so much about his condition, but not even a masters in autism will ever get me close enough! I’m a parent to a child with Aspergers, I’m not a mother with Aspergers!

Nevertheless there is something I can share with you… What a meltdown is like for me, a parent of a child with Aspergers! I have plenty of experience as I’m sure many of you have! Meltdowns are one of the hardest things I have to deal with in terms of little mans difficulties and although my son has a huge amount of great qualities that make up his personality , I wont pretend like its all Little professors and I don’t believe in the sugar coating approach… Sometimes things are just dam right bloody hard!

The ‘Daddy’ of meltdowns (not like there’s a type) normally drives me to the point of insanity, it causes me to question my own parenting skills and ability to cope with the situation at hand. I’ve quite literally stood on the spot and let out a high pitched scream, fallen to my knees & begged god for a break regardless of my current company, I’ve cried and asked god, “why me?” I’ve even had a full blown panic attack (YES IN THE SUPERMARKET)

Little over the top you think? No, in-fact this description actually does the ‘DADDY MELTDOWN’ no justice. There are no boundaries, no limits in which he knows he shouldn’t push… his impulsiveness that causes a worry inside me that I cannot explain.

Have you ever took you child out and feared them having some kind public tantrum? I have! I do!

But at least now I have learnt to cope… “TO some degree”, at least! I suppose its like anything, it all depends on ones frame of mind at the time! Sometimes I’m super confident and use a number of self-coping skills why trying an array of learnt techniques to discover the underlying issues surrounding his challenging behaviour! Sometimes these ‘ISSUES’ are clear, other times its mind-boggling!

Then there are the times I feel like grabbing my coat and legging it! Running like Forrest Gump in the direction off the unknown, but anything is better then here (Well of course I don’t leg it! But yes the thought does cross my mind)

A meltdown in our house can least an hour, an afternoon, the entire day and night, and sometimes…. A good few days!

Of course we will normally be over the screaming and the smashing things up by this point (Oh yes he loves to beat the hell out of the doors or the staircase) If the meltdown is one lasting over a day, his normally more tearful on day two, he wont let go and feels so wronged. This can be hard as he likes to go on and on about it, ear bashing me all day! He will sit sobbing, telling me I’m the worse mother in the world and how could I be so selfish when I didn’t agree to him having something or another. To some point its like talking to a person who has consumed to much alcohol simply because there’s no reasoning with him!

Of course it’s much better for him to have a meltdown in the safety of the home! Yes, I like it behind close doors too! Who don’t!!! But unless we are happy to confine ourselves to a life of isolation, then we have to deal with it! I was looking through some pictures on my iphone taken during the summer of last year. With every trip (Well, almost) is a picture of little man at the start of a meltdown.

If your out and about and you see a child with an expression like that on his face, “BEWARE HE MAY BLOW!” In all seriousness, seeing a child having a meltdown isn’t something to stick your nose up at, Nor is it your job to judge the child or the parent in that situation! After all… You never know the underlying causes, all you do is contribute to a very stressful situation.

Basically if don’t fancy mum giving you the finger in the supermarket, then keep your eyes on you’re trolly and your nose in your own business!

Related Articles

• John Robison: When Should You Tell A Child They Have Asperger’s? (huffingtonpost.com)
• Is social awkwardness and anxiety related to Asperger’s disorder? (zocdoc.com)
• Asperger Syndrome and High Function Autism Article Review Lists (sheraj.wordpress.com)

Blink and I’ll sleep for a week!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

picture of  Little Man and Mr Magic

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

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

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

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

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

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• Aspirations Or Clever Financial Alterations! You Decide (aspergersinfo.wordpress.com)
• Do I Favor Inclusion? (mythoughtstoo.com)

“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!

On top of the world

So this morning little man leaped from the comfort of his bed, washed without my pleas and got his clothes on super fast, “Ok most items were back to front or inside out” but when I told him so, there was no swearing or exaggerated body movements just a little boy who giggled and started over again. You see mornings like these have been far and few between… In actural fact they have been absent for some time. Yesterday morning little man was filled with excitement with a scoop of anxiety for he was about to embank on a journey, a new routine that no longer involved the mainstream primary school he had attended since he was five, the place he had grown to trust only to have it all fall apart and his spirit crushed. He had started to believe that he was so different from others that he would never be accepted. He started to state he wasn’t “normal” and created this image in his head of what he considered to be “normal” sadly in his eyes he didn’t fit into this image.

This hasn’t changed, I think it will take sometime before he excepts who he is (my fantastic little man) but on day two of his home tuition his already making progress. It’s very early days but I already see a child who wants to learn, a child who packs his school bag the night before and looks forward to the following days learning. So… Many parents take that for granted Not me and though I know this can change as quick as it started I hold onto these days with both hands and remind myself of them whenever things get bad.

Well, Friday was the day we first met his tutor (as not to disclose his indentity we will refer to the tutor as James)
We met at my home around 5pm. Little man sat looking at the tv he had refused to Switch off. He made little eye contact with James and instead of acting silly or rude like he often tends to when his anxious or just in a new situation, he was instead quite not saying much at all. We spoke for a while, discussed little mans needs and how mainstream school dealt with those needs. We talked about the effects isolation had on him and work we had been doing at home. I like to think of myself as a good judge of character… as I had a good feeling about James, I didn’t feel as if he was sat judging me or little man. James had already read the proposed statement (that is in need of amendments) and also read the appendices which included my ten pages of parental advice. He has experience of working with children on the autism spectrum and didn’t seem worried about teaching little man a job many would refer to as a “challenge” towards the end of the meeting James asked Little man if there was anything he would like to ask. Little man rolled his eyes and pulled his thinking face. Having thought for a few seconds replied, “fancy educating someone like me in a library!” He turned to me and said, “mother I will do my best to be quite” bless him… Though he was making a some what valid point as he is naturally a loud speaker, tending to shout as opposed to talk. Jame’s response was great… He made no big deal and said that all will be cool.

During the weekend little man seemed less anxious about Mondays leap back into education and getting him to sleep Sunday night wasn’t as hard as first expected. He had again been awake all Saturday night not sleeping till the early hours of Sunday morning… I didn’t let him sleep the whole of Sunday daytime and though it was hard work and resulted in a crying moaning monster throughout the day I managed to keep him awake. So after a few melatonin and a warm drink and bath, he slept on Sunday night (Ok it wasn’t till 1am and was my bed he slept in not his own… But this was good enough for me!)

It was pouring with rain on Monday morning, I mean pelting it down bucket loads, For this reason I changed the clothing I had already laid out for little man as I knew the jeans would get wet and rub on his skin causing a sensory related meltdown. I waved my daughter off at 8:30 am and set about the morning challenge one I hadn’t had to do for weeks (near on a month) waking little guy up for school. To my surprise little man rose to the challenge and with plenty of reassurance got ready for his big day. We got a lift with the promise of taking public transport the following day (which put a smile on his face) As I waved him off it felt totally strange… I was leaving my little man with a complete stranger, who I was trusting to take good care of my child, to have patience and understanding when it came to his “odd” or “challenging” ways… I felt that same sickening feeling in the pitt of my stomach on his first day of school I wanted to cry then and wanted to cry now.

Most of the day I was on edge… Everytime the phone rang I held my breath, “please don’t be James” I would think! But the call never came and to my relief on collection from the library little man was smiling. We took the train home and little man didn’t stop, “James showed me this, James told me that, James said this, James laughed at that” he was the happiest I’d seen him in ages. The only downside side to his day was the headache he had brought back home with him. He mentioned the lighting was some what strong and flickered at times. He also told me all the lights were different… Some brighter then others. With this and the fact he had engaged in work throughout the day his head was paying the price. However he still spoke about James all the way home and once back indoors… That was in till he sat on my bed only to fall fast asleep. This was at 4 pm and he wouldn’t even wake for dinner!

So yes the next day was just as postive if not better. His father took him on the train and I got a lay in:-) well that was in till a certain cheeky one year old woke me with a slap in the face!
His home book stated that the day was perfect with little man having had engaged in plenty of work. Once home he had continued in learning mode and was on the PC creating a presentation on bullying.

I really do hope that things continue to go as well. I am worried that little man will have problems reintergrating back into a school environment and the effects his mainstream school has had on his confidence and social skills… But for now I’m just going to enjoy seeing my little guy smile.

Positive Statements made by little man these past few days…

“I can’t wait till tomorrow”

“I think James likes me because his kind to me”

“Mum did you know James never shouts”

“James understands me”

“We went tescos together and we even got a trolly”

“He trust me and don’t mind being out in public with me” (effects of never going on school trips)

“His my friend and my teacher”

“I like being with James he treats me like a normal boy”
(breaks my heart knowing he often feels so different)

Positives I’ve noted in two short days…

Lots more smiles

Keen to learn

Less tears

Positive feed back in his home book… Day one stated how well they got along and little man even tried hard and completed some work. Day two even better… He engaged in all his work and was a joy to work with.

Comments like these were sure to make me cry. I couldn’t help it! I had waited for what felt like forever for some positive feed back on little man. I’m so proud of him and very thankful to his new friend james.

My little man is on top of the world and it’s been a long time coming!!