Understanding The Diagnostics Of Autism And Aspergers Syndrome

Today, when I thought about writing this post I had this strong urge to kick my own arse, as I asked myself the question… “Why haven’t I written this post already”

The Facebook page is now reaching numbers of 5,000 + and although that’s great, it still shows how many more children are being diagnosed as being on the autism spectrum, that or the high numbers of parents seeking a diagnosis and therefore seeking out advice on something they long to understand…. “The Diagnostics of autism”

Image via Wikipedia

This basically means the different tests and routes undertaken in-order to diagnosis a child as being on the autism spectrum, and it’s this I want to write about here today.

Firstly I should make it crystal clear that there is no set procedure, some places, areas and countries do it differently to another. However, the most important thing to remember before delving in any further is, “One child may be diagnosed in record time, another it may take longer, one child may only see two professionals whereas another…. they may meet hundreds!  

I’m situated in the United Kingdom and my son, now 11 years old, was formally diagnosed in early 2009 as having ‘Asperger’s Syndrome’

One of the common misconceptions made by parents (including myself) is when a child psychologist informs you that your child is indeed on the autism spectrum… you then understandably think you’re child was just diagnosed! Com-on, why the hell wouldn’t you, he just sat there and said it didn’t he? You’re child normally isn’t actually diagnosed and normally it will be a while till they actually are. I remember being told on my first visit, Little man was most likely on the autism spectrum with Aspergers Syndrome being the most appropriate title! Yes, he rambled on about coming back on this date to have this elevation & that observation done, but he said it… I bloody heard him! You’re child isn’t technically diagnosed till them words hit paper, that’s when it matters, that’s when it counts and means anything to schools and services in your local area! I learnt this the hard way, Little man’s mainstream school wrote it off completely, they proceeded to do sod all, that was in-till they saw it there in black & white some two years later! Remember it’s not always so long, actually it should never be this long! We had problems with certain doctors and the schools input didn’t help, we actually had to re-enter the waiting list when the person taking care of Little man’s notes was dismissed, meaning little man was missed completely. Anyhow… My point… when there is still testing to be done and you don’t yet have that paper with the title of any diagnosis, then the likelihood that you actually don’t have one yet… Is, well… quite certain!

Below I’ve posted some of the diagnostic tools you may come across if your child is being assessed for an autism spectrum condition or Aspergers Syndrome.

Aspergers Syndrome Diagnostic Scale (ASDS)

Diagnostic tool used on those between the ages of 5-18 years old as a diagnostic tool. 

Method: Parent/teacher questionnaire made up of 50 questions which are rated and therefore indicate the presence or absence of behaviour mostly associated with Aspergers. The scores give the tester an indication on the probability of a diagnosis of Aspergers syndrome. This is a diagnostic tool, though its rarely used alone when diagnosis a child with Aspergers The above test was one of the tools used for Little man’s diagnosis.

Image via Wikipedia

 

Autism Diagnostic Interview Revised (ADIR)

This is a diagnostic tool used on children aged over 2.

 ADIR is a structured 90 minute interview consisting of 93 items spit into three functional domains. The responses given are then coded in 8 areas.

 The test is to look for the early developmental signs of autism spectrum conditions including a child’s Speech and language, the way they communicate and interact, repetitive and stereotyped behaviours and intense interests. (This is another test performed on little man).

Autism Diagnostic Observation Schedule (ADOS) 

This is a diagnostic tool usually used from the ages of 2+ (commonly used on adults as well as children) professional play based observation done on an interactive format (child/clinician) 

 The test is used to assess the child’s social communication & interaction skills, imaginative play or creativity, stereotyped behaviours and restricted interest. It was the ADOS that finally lead to Little man’s formal diagnosis.

Image via Wikipedia

 Childhood Autism Rating Scale (CARS) 

A diagnostic tool for children over 2 years.

 The test consists of 15 items rated on a 7 point scale. These items are made up from parental input/questionnaire clinician observations, other related reports and input (educational reports etc)  A wide spectrum of behaviours are assessed including those above and more. The test will establish three possible outcomes… not autistic, mildly/moderately autistic or severely autistic.

Gilliam Autism Rating Scale-Second Edition (GARS-2)

 A diagnostic tool usually used in those between the ages of 3-22 years of age. It consists of 3 sub-scales based on observation of frequency of behaviours such as, stereotype behaviours, interaction and communication, of occurrence and parental interview

Diagnostic Interview for Social and Communication Disorders (DISCO)

A diagnostic tool used for diagnosing children/people of all ages. This is a semi-structured interview schedule lasting some 3 hours with parents, other care givers, which is mainly used in assisting the diagnosis of autism.

Related articles

• 10 positives to parenting a child with Aspergers Syndrome (aspergersinfo.wordpress.com)
• Little man features in an NAS publication on toys for children with autism (aspergersinfo.wordpress.com)
• Guest Post, Aspergers: A holistic experience (aspergersinfo.wordpress.com)
• All About Dealing With Aspergers In Adults (after50health.com)

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!

A love hate relationship

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk

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!’

Related Articles

• Towards Inclusion and a Better Childhood for Afro-caribbean in The Uk (socyberty.com)
• Aspirations Or Clever Financial Alterations! You Decide (aspergersinfo.wordpress.com)
• Do I Favor Inclusion? (mythoughtstoo.com)

What are you looking at?

Hello everyone

Firstly let me send you all a belated happy world autism day.

Secondly let me explain why I didn’t get the chance to say that earlier!

Well, it’s been an interesting few days. As some may know Friday was ‘Autism Rainbow day’ I did my bit by dressing in all the colours of the rainbow. Judging by the public reaction to my clobber I’m guessing the cause isn’t that well known here in the UK. To many I just looked like a colour blind nut job. Well, it was all in the name of autism so what did I care, I’m totally used to being stared at, as it comes with the territory being a mum to a child on the spectrum!

Friday and Saturday were no exceptions. Let me elaborate a little.

Dressed in my rainbow mix match I decided to head to the supermarket to get something for dinner. My daughter was at my mothers so it was just me and my boys. I’ve written a good few post about the dangers of shopping with an Aspie over the two and a bit years I’ve been blogging, yet did I take my own advice, ‘Avoid taking him where possible, otherwise do so with caution?’ No of course I didn’t!

I’m normally very careful when it comes to taking little man to the supermarket, especially when his only just returned from his tuition at the library! The thing is I can’t even use the bath room without him by my side these days! So surly you can see my predicament when he was literally hanging from my jeans as I tried to make my escape through the front door.

I admit that I’m unsure if he enjoys visiting the supermarket or not? You see eight times out of ten he will have a meltdown with at least half of these being earth shakers (meaning full on blow ups) So you can see the potential risks involved. It’s like a military operation just getting there. He seems to love getting the shopping, acting the little man and of course asking for things, but at the same time all the waiting and crowds of shoppers really tick him off.

I was looking at the flowers for mothers day and I was trying to look at speed but within a few minutes little man was huffing and puffing like an old man. He then tried to unstrap his sixteen month old brother from the pram as he wanted him to play. Of course I grabbed the baby and strapped him back in as it was far to busy to have him on his feet. Little man freaked! He called me a string of hurtful names and began menacingly kicking at the display. On top of this the baby was howling the place down. Little man refused to push the small trolley he was pushing so I tried to push this along with the pram, but the trolley slipped from my grip and went smashing into the flowers. The baby was wailing, little man was cursing, and the fellow shoppers were enjoying the entertainment.

Can you imagine, I hadn’t slept a wink the previous night so was exhausted, dressed so bright I couldn’t be missed, flowers everywhere (praying I wasn’t charged damages), baby screaming so loud the tins were rattling and my little man throwing himself into everyone and anything that stood in his way while giving me an ear bashing.

On my knees I tried desperately to gather flowers from the floor (not one member of the public offered me some help) Suddenly all the noise, the babies screams, little mans shouting and the all the background noise decelerated, it all sounded muffled and I realised that I could hear my own thoughts over anything else around me. The voice in my head told me to get up and run… I almost did! but then that voice ordered me to do something else! “Get up off that dirty floor, brush myself off and take a look around me”

As I came to my feet, brushing petals and leafs from my jeans (that had patches of coloured material stuck to them in an attempt to vamp them up for autism rainbow day, I noticed that everything was slowly getting louder. I felt as if I was coming out of a dream like daze. The baby was no longer screaming, more sobbing, Little man was still ranting (he could go on for hours.) Looking around i noticed just how much of a spectacle my family had become.

“Excuse me everyone”, I shouted at the top of my voice, resulting in people either stopping in their tracks or making a run for it’

What I said next came from nowhere but my good it felt bloody fantastic.

I can’t remember word for word but it went something like this…

” Yes, His my son! No I never dragged him up! Yes his behaviour isn’t ideal, it’s bloody hard work! No your xxxxxxx stares don’t help!”

I grabbed the pram looked down at little man then finished by telling everyone,

“He has Aspergers, which is a type of autism. He don’t care that your staring but at this moment I do, So don’t!

I left feeling so much better then I could have. I was pleased that I had spoken up and felt no regret for doing so.

The following day was world autism day, I was now on a mission if anybody wants a repeat of yesterday I’m ready.
Of course I had to think like this as I was of out to meet a friend with the kids. The day was pretty much drama free but I needed to put a few people in there places.

At the end of an eventful few days my little man was drained and for the first night in ages little man slept.

“Yayyyyyyy

The only thing was he feel fast asleep on my bedroom floor right across the bedroom door. Not good when your dieing to use the little girls room.

I took a picture to share with you all.

Everyday is world autism day in our house

So it’s World Autism day on the 2nd of April and the entire month will be dedicated to raising awareness for a condition very close to my heart.

I have already read a few awareness post on some of my favorite blogs, I sat brainstorming about my own post for the day. It was only then I realised that everyday is world autism day in our house! It’s not only through this blog that I find myself trying to raise awareness by putting our story out there for the world to see, but I’m doing it through the social networking that I do such as Twitter and facebook. Even off line I’m doing the same, often without even knowing it.

Of course this won’t stop me trying to make some kind of impact on the day. I’m a firm believer that two voices are better then one (not that there’s only two voices but you know what I mean!)

If everyone’s life was touched by autism the world would be a more understanding place, but it isn’t and sadly that means that more often then not, those it don’t affect just don’t think about, the perception they have is pretty far off from the reality of the condition. These people can be educated but only if willing.

Then there is those that don’t believe, a big problem with some of the older generation which is mainly due to the fact such a condition wasn’t heard of when they were growing up, quite often making it come across as a load of meaningless gibberish. This is not just their view on autism but an array of conditions such as ADHD, Anxiety disorders, any condition that affects a persons emotions and behaviour etc. I’ve been told more then once by an elderly person that my son needs a smacked bottom in order to change his ways. An elderly lady on the bus recently told my son during a meltdown that if she acted like he currently was when she was a child her father would have taken the belt to her backside! My son didn’t have a clue what she was talking about and when he told her so she reacted by telling him he was a cheeky bugger, which really didn’t help! Yes, I was furious but I have to reason with myself that actually many of these people don’t know anything different. Your brought up a certain way, or go through a huge proportion of your life only seeing challenging behaviour as bad behaviour, that’s something that is incredibly hard to change! It makes you wonder how many off these people are actually on the spectrum themselves but just don’t know it.

Looking at the world ten years ago and looking at it now it’s fair to say awareness towards autism has come a long way! However looking at the high number of families battling against the system while being judged by fellow shoppers at the supermarket as a result of their child’s very public meltdown, it’s clear to see we still have a long way to go!

It is my believe that creating awareness for those considered to be at the ‘higher’ end of the autism spectrum will be somewhat harder to achieve. Those like my son who have a diagnosis of ‘Aspergers’ or ‘HF’ autism, will always have to fight that little bit harder for recognition. The fact that those with such a diagnosis are able to verbally communicate and have average to high IQ’s leads them to be misunderstood, looked upon as misbehaving and attention seeking. It’s my personal opinion that some (of course not all) parents to a child diagnosed as being on the ‘lower’ end of the spectrum are the ones that often show a degree of ignorance towards a child/adult further along that same spectrum. I remember attending a meeting held by our local autism support group. I asked a question concerning the criteria for admission to an asd specific school that was being built in the area. To my horror a fellow parent stood up and stated that children like mine shouldn’t be considered for a place as they were needed for those that truly needed them. This parent didn’t know me, had never met my child, all she knew about my child was the fact he had a diagnosis of aspergers due to my brief introduction of myself when first joining the group some few weeks before. I later discovered that her child was in a special school and doing OK, where’s my son had no school that could meet his complex needs and in actual fact if pursued would more likely be offered a place then that of her own child. I sat through the remainder of that meeting wondering how many other mothers shared this same view? Thinking about it, the majority of parents that I would often speak to within the group had children with a diagnosis of AS or HF autism, it just goes to show how misunderstood these diagnosis’s actually are!

Every individual on the spectrum is different, each will carry their own set of traits, Little mans being his difficulties with social communication and interaction, social imagination and literal understanding of language, and his sensory processing! Where’s another child may have fewer difficulties within these areas but have more profound difficulties with language skills, learning disabilities, personal care etc, It just depends!

Though each person with autism will have symptoms within the the same triad of impairments, those symptoms will vary from one person to the next. Each person has their own set of traits that defines their autism which makes up only one part of who they are. We all have our own personality and characteristics that define us and that’s the same for everyone even those with autism no matter what kind of autism that happens to be!

I don’t want to wear your shoes mum!

“Mum I really wouldn’t do that”, shouted little man in a stern voice.

“Well, you would if you were in my shoes mate” I replied without taking my eyes off the screen as I frenetically typed my angry email to yet another not so professional, professional!

Silence……

Then……

“Mum, why would I be in your shoes? There far to big and not the kind of shoes I would wear, they are made for girls and look way to uncomfortable for a ten year old boy!”

Yep, you would have thought that I would known better by now wouldn’t you! My use of ambiguous language could lead to alsorts of problems

Little man isn’t stupid, far from it, he just doesn’t understand why people don’t just say what they mean! I’ve explained the use of metaphors to which he will often reply “that’s just stupid and isn’t worth saying” I suppose he has a point but to most these terms just slip out without a seconds thought and that was the case now.

I glanced up from my Mac, to see little man stood before me shaking his head, deep in thought. I knew I would need to explain myself and that once I had he would try to store the new little metaphor deep in his head in a bid to recognise it if ever used again. This technique is often a success but there are a few he just can’t get his head around.

he will often attempt to give it a whirl himself, Sadly more often then not this Is done in the wrong context, using the metaphor at a time it isn’t needed sounding totally ‘odd’ and often inappropriate with no relevance to the conversation often coming across as if to be using sarcasm. (could be a huge problem in later life) I’m very thankful that more often then not little man sees these little metaphors as completely uncalled for and really un-needed.

I put down the Mac and gave little man my full attention.

“I really didn’t mean you would wear my shoes as you are very right they are not suitable for boys, especially children as they are definitely for ladies and as you stated, they are most uncomfortable”

He stood concentrating on my words, taking it all in.

“You see what I meant was, you would likely send such an email if you was in a situation of my kind!”, So, by saying if you were in my shoes… I’m merely suggesting you would take this same action. This is the same for any situation not just an email, it may be that I forgot to do something because I was so busy and if u suggested that I was stupid for forgetting I may say that you would have forgotten too if in my shoes! understand?”

“How stupid mum! it’s pointless as you don’t become a person for wearing their shoes! we all have our own minds, shoes don’t come into it mum” With a huge Si and drop of his shoulder’s he shook his head and laughed at me as if I was silly.

A few days later we were sat on the sofa together watching the film ‘White Chicks’ (a comedy where two black cops go undercover as two young white socialites in a bid to find the bad guys, but mainly save their butts from being sacked) Little man was laughing hysterically alongside me. We sat and watched the whole film together while munching on ice cream and spoiling ourselves with a can of something fizzy (trying to cut down little mans fizz intake, that’s why i refer to fizzy as a treat)

After having watched the film little man turned to me and said, “That was really funny mum! I can’t believe that them guys wore ladies shoes for all that time just to understand the situation”

“What?” I sputtered

As little man went to repeat what he had just said, I stopped him stating, “oh I know what you mean sweetheart” giving him a kiss on the head I got up and made us a warm drink for bed.

Only this time while I stood boiling the kettle, it was me who gave a little Si, shook my head slowly while displaying a slight smile. Let’s leave this one for another day I thought to myself!

Oh and by the way, The little man was right… The angry email really wasn’t a good idea!

How Mummy should have listen to her ten year old aspie!

With the rise in Measles it’s decision time!

This is such a hard post to write, and I really don’t know how to word what it is I’m feeling.

Nevertheless I need to try.

Tomorrow the 25 th March 2011 is the day I will make an appointment for my youngest child, (Little mans baby brother) to have his immunisation  (MMR) with our local GP.

He is almost 16 months old and should have had the vaccine almost 4 months ago. I wish I could just keep my baby under house arrest away from the worlds harmful viruses, but with two school age children how is this possible!

As a mother to a child with Aspergers this has been one of the hardest decisions of my life, but it’s one I must make as a parent. Both little man and his sister had the MMR jab with little man having his at the height of the controversy over the possible link between that of the MMR and autism.

I decided to opt for single vaccinations but sadly with the country having no supplies of the mumps vaccine this is a no, no. So, I called the local surgery and arranged the baby’s appointment for his immunisation with much fear and dread.

With reported cases of measles rapidly affecting a huge proportion of the UK, the pressure rises.

Do I want my child to be autistic? No!
Do I want my child to catch a virus that can potently cause him brain damage, even death?
No!

I don’t wish for either. However with their being proven risks associated with each of these conditions (especially that of measles) do I want to realistically take that chance on my son’s life? Again, No!
I don’t think I can live with myself if anything happened to him!

Measles can kill, It’s not some myth, but a fact that a child’s life can be taken by a virus that has the capability of becoming deadly.

I think I would rather have an autistic child then run the risk of having no child at all.

Some may say that is selfish! Then again some may say the same to those who choose against such immunizations as it’s  not only their own child’s life in danger but those around them, particularly that of pregnant women! Regardless of what society thinks, I love this little person with all my heart and I can’t help that.

It’s not like I haven’t spent time going over this in my mind! It’s been there since the day he was born  December 2009′ Its something that’s always been there niggling away at me.

Since I discovered I was having a boy I’ve faced that worry of him having an ASD. Of course girls have this condition too but the risk seem much higher for boys (regardless of the number of girls who remain un-diagnosis). Whenever Harley does something ‘odd’ or someone comments how like Little man he is I feel my body freeze. Don’t get me wrong, I love little man just as much as I love his siblings, and though I see his Aspergers as a gift, it’s not something I choose for him. I would never change him but this isn’t the point.

Little man has AS and if anything as a baby/toddler I didn’t notice any developmental delays! My child seemed very advanced. His language was amazing and he was out of nappies being dry throughout the day & the night by the age of 2. I didn’t notice any regression once he had received the immunisation. However what I did notice after this time was his in-tensed interests, obsessions, poor play skills etc. However these were things that I would not have noticed prior to the MMR and would have only become noticeable with age!  I believe little man has always had some degree of sensory sensitivity and sensory seeking behaviours from the day he was born. He only eats certain food, would gag if given a dummy, screamed if his blanket was in the washing machine, and had his bottle to age 6 (just for bed) I also remember his interest in trains from a very young age, he loved lining them up. By around the age of two, he was absorbed in Thomas the tank engine mesmerized by it whenever it was on the telly he was there eyes glued to the scene

There was one change I noticed in little man after the immunisation was given. His sleep pattern become a whole lot more unpredictable. Before this time he would sleep well but only in my arms or my chest (would never sleep in a cot, which is funny as he isn’t a cuddle seeker  at least not no more) As a newborn he had bad colic that kept him awake for hours on end screaming, otherwise he slept through anything.

He wasn’t pre-term but 4 days over due. I did have quite a difficult delivery, with him being born with the cord tightly around his neck, very swollen head and features due to becoming stuck in the birth canal and a very strange tone of blue. His little lips trembled and he was placed under the light to warm him up.

He never cried (apart from them few times he had colic), he never went through the terrible twos, he actually didn’t start the meltdowns till he was around 4 years old.

Harley (baby brother) had a great delivery despite him weighing a whopping 9lb. He was ten days overdue which was quite a surprise given the doctors were trying to keep him in there from week 30!

His extremely advanced! At first I didn’t think so, but he said his first word at 5 months, was taking steps at 7 months and wait for it, “having huge full-blown tantrums at 6 months” these involve head-butting everything, resulting in him looking a tad like Mr bump.

Harley is very advanced in his language, even stringing together a three word sentence and he could count to three by 13 months.

Little sister who was born 3 weeks early and the smallest out the three, met all her milestones at a pretty average pace. She is two years younger than little man and isn’t on the spectrum. She had the MMR jab at 12 months.

I know there is a huge proportion of the world who are very anti vaccine, I also know that many of these parents claim their child/children have been affected by the vaccine! I’m not here to say whether I agree or disagree, that’s not the plan at all. I’m writing this as a parent who needs to make an informed decision on what’s best for her own child!

Harley was very sick at five weeks old and we stayed in the hospital by his side for over a week. He had developed a chest infection that progressed into pneumonia and then he went on to contract H1N1 even through I had already contracted the flu virus while in the latter stages of pregnancy. I never want to see my child with feeding tubs and relying oxygen ever, ever again. If Harley caught measles, mumps or rubella and it affected him in such away how could I cope knowing I basically put him there! Contributed somehow.

Harley’s appointment is in 2 weeks time, he will be sixteen months old. Yes, I will sit pondering questioning my decision for that entire time, but I will also be clinging to the hope he doesn’t contract measles, mumps or rubella either.

I could go on forever writing this, reasoning with my own mind while putting it down for the world to see! But I won’t drive my head crazy no more (at least for the rest of today anyway)

This topic has always produced a debate and is bound to for many years to come! Science is a wonderful thing that sadly normally leads to worry. With medical professionals working hard to prove each other wrong which is mainly done in a display of public statements smeared all over the press, us parents hold little hope of maintaining a smooth ride. Faced with choices that have become some of the most frightening choices we will ever have to make!

I guess this is one us parents will never escape.

NOTE…
This is a personal opinion and choice! I am not stating that those that chose not to vaccinate are bad parents etc. For this reason please have respect if commenting. Although I’m happy for all to comment what ever the opinion, abuse and rude comments will not be published.

The need for mummy time

What a half term

Am I pleased that this half term has come to an end!

It’s very rare you will hear this mum quote such words. I normally dread the childrens return to school, but what with little man no long in his mainstream school I’ll be thankful for the break.

It’s been a long week. Little man has had little sleep, meaning I haven’t too (nothing new there then) Baby brother throw his smart phone into the mob bucket, where it stayed for 45 minutes in til it had been discovered, resulting in tears for a good ten hours, Little man drank a bottle of Carpol (yes a childrens’ pain killer because he likes the taste) and to top it all off I’ve had the worst stomach flu to date!

Tidying the little dudes room I came across an empty carpol 6+ bottle in his draw. I had been looking for this over the last three days to give to his sister who has been a tad under the weather, it was as if it had vanished, “Surely not,” I found myself saying aloud! I called little man upstairs and asked him why he had the empty bottle in his draw? To which he replied, “because it’s mine, you brought it for me!” I explained that this didn’t mean he could keep it in his bedroom and more to the point i asked where in gods name the contents had gone!

What came next shocked the bloody life out of me when he said as casual as like, “I drank it mum”

I felt my heart race, my stomach was in my mouth! I tried to stay clam but found myself shouting at him. This didn’t help because for the next half hour I had problems getting anything out of him at all.

I eventually unearthed that he had drank some on Sunday, Monday and lastly Tuesday Checking the bottle I established that the bottle was 80ml and recommended dosage for a child of little man’s age was 1-2 5ml spoonfuls 4x aday = 40ml aday max. So if he drank the stuff over a three day course then he should be fine. Then there was the fact we were now on Saturday, meaning he had last indulged in carpol 4 days ago. Regardless I felt dreadful that I didn’t know! what if something had happened! Oh my god it don’t bare even thinking about.

We had a chat and he just had no understanding why I was making such a ‘big’ deal of the situation! I really did overemphasize the seriousness of what he had done as a means to shock him into listening. He just looked at me with bafflement in his eyes, even laughing at one point. With my head in my hands, I felt lost! He likes it and that’s what matters (so he told me)

I got on the net and sreached online for a lockable medication box, which I found and ordered. All our medication is currently stored up very high on top of a cupboard attached to the wall in our kitcten. Little man would have had to climb up onto the sideboards in order to reach it. Still it had happened and thank goodness he was fine.

Another issue this week has been the constant squabbling between little man and his sister! Yer all siblings quarrel but oh my this is exhausting. Little sister has got to the point were she don’t take no more of his crap, but she’s also acting up a lot more lately. I think she feels a little left out! I think in her eyes her big brother is always doing the wrong thing that somehow leads to him getting attention (good or bad it’s still attention) I’ve notice my little princess who honestly is 99% well behaved has been doing a little back chatting, feet stomping, door slamming this past week. Maybe some girl time is needed.

Well for now I enjoy a drama free half peaceful day (let’s not forget, I do have a 15 month old requesting mummys attention throughout the day and his showing no interest in taking a mid-day nap as yet.

So bye for now, this mum is off to play with building blocks and peek a boo.

Enjoy your day/evening everyone.

The end of a chapter

We’ve come to the end of the chapter

I feel allevated, somewhat calm and strangely satisfied!

I feel we’ve been given the green light, and we can finally proceed with life.

Its all over and I couldn’t be anymore pleased that it’s finally come to an end!

Four days before the SENDIST hearing which was due to take place today, the settlement agreement went through.Yes, sometime during the beginning of this month I finally agreed to a settlement offered on behalf of Little man’s Governing body at his old mainstream primary school (the one I finally pulled him from during December 2010)

A formal apology signed by the head-teacher on behalf of the school and governing body addressed to myself and Little man. Within the letter is a list of incidents they particularly wished to apologise for. This included: being video interviewed on a school trip without parental consent, any distress caused to little man by way of isolation & exclusion, communication could have been better, more reasonable adjustments should have been made, visual timetable not always up to date.

There was a number more, but I think you get the point.

They agreed to training before July 2011 and to review there policies by the same date.

I requested that the letter be signed by the head-teacher, “what would a letter of apology mean to a child with aspergers (or any child for that matter), given by a person they do not even know (governing body)” This was agreed, to which I signed the agreement and withdrew my appeal for Disability Discrimination.

Of course this won’t be an end to little mans school battles, we have yet to face his transition back into a school enviroment (special school) from the one-to-one home tuition he is currently receiving at the library for a total of 5 hours a day, 25 hours per week. As stated in my post before last, Little man has stamped his feet and let it be known that “I’m never ever, ever, going back to school.”

The letter of apology doesn’t make all his fears disappear his still extermely affected by the treatment he incurred why at this school, the countless exclusions, the misunderstandings, not allowed on trips, refusal to allow his participation in school activities, the hurt, confusion and pain it caused.

However now he knows it wasn’t his ‘fault’ he wasn’t to blame (well, 99% of the time) You see there were of course times when he was a ‘typical’ 10 year old child, after all his no angel! It’s not like I would challenge every sanction they imposed (no matter what they may say)

I have watched him over these past few months slowly become less angry at the world and himself. He seems more excepting of the person he is! It’s not as if everything is suddenly perfect, of course not, we have some way to get there yet. There are days he sits and ponders on the things that happened, referring to himself as “not normal, different and misplaced,” other days his smiling huge happy smiles.
They are the days you cling to.

For me the letter means closure. The thankful end to a messy, tiring, soul destroying experience. His just 10 years old so undoubedly we have many more battles to come, I’m not walking around with my head in the clouds thinking, “from this day on, our life is all rosy”. We are still awaiting the final statement of special educational needs being issued from the LEA. The chances that my suggested amendents if any are copied into the statement is looking somewhat grim, and let’s face it, the chances that my preferred school will be named in part 4 is “atrociously” low with the prospect of me having to make an application for yet another appeal being practically set in stone! Some may call me a pessimist I prefer the term “realist”. Let’s face it parents who made us think this way?

Communicating, helping, sharing and just speaking to thousands of other parents and carers through this blog, my facebook page and the extending on/off line community only opens my eyes that bit wider, reminding me that I’m not the only one, little man’s not the only one! There is such an outstandingly huge number of us fighting the same daily stressful battles (normally education based) that technically we as parents, carers, children, human bloodly beings should not need to face.

I hope that Little man’s school did “really” learn something from little man and somewhere down the line, somehow, something good comes from this mess. I hope that if one day near or far, Little man’s school are expected to educate a child like him again, they do so with much care and support enabling that child to succeed in all areas possible. Most of all I hope that child is 100% happy with the person he is and is never made to feel he isn’t valued and worthy of respect, that his existence is worth nothing!

So now I turn over the page and start a new chapter.

With this new chapter I wonder what life will bring?

I’m no psychic, but you can bet your life on it, it won’t be dull! As much as I’d like it to be, we don’t do dull and ordinary in our house!