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Tips For Parents Of A Child Entering The Assessment Process.”

18 Aug

1) No child should receive an Aspergers diagnosis on a first appointment or assessment. That’s not to say it doesn’t happen. Yes, you maybe dead certain it’s Aspergers though professionals have a duty to explore every avenue and give your child a detailed assessment clearly observing them and then providing you the parent with a detailed document of his or her findings.

2) Be prepared, its likely (what with these awful cuts) that your child will not see the same psychologist more than once. You will feel that the continuous string of professionals are not making the assessment process any easier when you find yourselves being bombarded with the same questions over and over. ‘Yes we often ask ourselves… Do these people communicate with each other’

3) When assessing a school age child for Aspergers the team involved will usually request feedback from your child’s teaching team and school SENCO. Is your child’s school acknowledging your child’s condition? If not this can really slow the entire assessment process down. In the end the communication team at CAMHS had to go into my sons school to assess how he coped and acted in the school environment.

4) Remain on the ball. Often we are Frobed off by professionals with statements like they are awaiting a certain professional to get back to them or an appointment slot for your child to meet with the SALT therapist for an assessment. It’s at this times you often find yourselves dangling in thin air and before you even realise it its been months… Your slowly slipping through the net. Bombard the team working with your child with daily phone calls. Who cares if we are getting on their nerves? If we are silent we are forgotten and no one wants to be forgotten.

5) Keep all reports and assessment papers and letters filed within their own folder. This will help you to stay ontop of things. You will have dates at hand and be able to produce any needed documents at ease.

6) Keep your own written records. I’ve found that I’ve been told a lot of stuff of the record that could Potentially help my child but won’t in its undocumented state. I therefore make everything formal but taking notes at every meeting, during phone calls and any other time my child’s case is up for discussion.

7) Try not to miss important appointments as you will often find that its months before contact is even made and new appointments given.

8) Ask questions no matter how silly you think they may sound.

9) Trust Your Instincts. If you don’t agree with the professionals conclusions its your right to ask for a second opinion.

10) Its a long road, be prepared, don’t just go with it, be part of it! After all its your child and diagnosis could be a way to the services you require.

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Your Son Has Aspergers Syndrome

16 Aug

That day was here, it had finally arrived. She put on her coat, took a deep breath as she closed the door behind her.

Sat at the bus stop a thousand thoughts bombarded her brain, she developed a list of endless questions storing them safely to the front of her mind. Boarding the bus she knew it was almost crunch time.

The child & adolescent mental health centre was a modern building boasting floor to ceiling windows that had been brightly stained in an array of colours. She sat staring at the rainbow of colour the suns ray had projected through the coloured glass onto the cold tiled floor only to have her trance broken with the calling of her name.

Looking up she recognised the woman stood before her as the Child Psychologist who along with others, had sat for hours observing the behaviours of her then 9-year-old son.

The Psychologist smiled, though it was one of those awkward half smiles with her head slightly tipped to one side her whole expression cried sympathy!

“How are you?” she asked as they headed for the elevator! She responded by smiling gently while nodding her head and stating “Yes, I’m fine thank you” This couldn’t have been more dishonest! Her life seemed no less than a giant mess, her eyes alone expressed the story of sleepless nights and utter worry.

A weird, awkward moments silence commenced for what seemed like minutes though in reality it was only seconds when finally the ding of the elevators doors rang out. Stepping out of the elevator the Psychologist turned and with that same tilted head and half smile, asked “Are you ready?”

She was as ready as she’d ever be, for no amount of time could ever prepare her for this day.

After a short walk down a brightly lit corridor they came to a door, it was on the other side of that door that answers await, the answers to the question she had asked some two years before!

Entering the room they were greeted by a whole host of professionals, each on armed with a clip board, a glass of water and that same tilted head and half lit smile.

Taking a seat she felt her whole body tense, why did she suddenly feel this way? Looking at the tissues the Psychologist had now placed on the middle of the table right before her, she asked herself “Do they expect me to cry?”

After all why would she?

It had been more than 18 months since that first appointment, her son had seen every single one of these specialist and more besides, almost all giving the same conclusion following observation of his behaviours! Yes, if it wasn’t for the mix up, the mistake of a closed case following a silly mixup in paper work, she was almost certain this day would have come long go.

After that first appointment and first drawn conclusion with a child Paediatrician she had gone home and researched all there was to know on the topic and therefore realised that yes the reality of what that Paediatrician had told her was in fact more than a possibility!

So… why in god’s name would this woman now cry?

There was a whole lot of words, words that went in without being fully absorbed. Each professional adding their view on what support her child would likely require, what this involved and just how to go about getting it!

Then a pause…

Here it comes she thought!

Looking at the psychologist she concentrated on the movement of her lips as she said them words…

“So, we are all in agreement that the most suitable and fitting diagnosis for your child is that of… Aspergers Syndrome”

It wasn’t a shock… as mentioned the possibility had always been put forward.

As his mother she had taken it on board and adjusted her way of thinking when it had come to parenting her son, she already considered him a boy with Aspergers.

So… why did she find herself reaching for the tissues?

She didn’t cry through sadness, she cried because it was suddenly all so real, so official! With the diagnosis also came a certain degree of relieve, a reason for her child’s uniqueness. She could stop blaming his meltdowns or difficulties on that of her own parenting, school could stop shaking their heads and finally wake up to the fact that this is real and not an excuse.

Silence

Then…

“Do you have any questions”

Of course she did, she had that whole long list that she had readily stored at the front of her mind!

So… why could she not think of one to ask?

It’s been over two years and this woman has come along way. Like any family they have good days and they have bad days. She embraces her child’s uniqueness and encourages parents of newly diagnosed children to reach out to one another, sharing the message…

YOU ARE NOT ALONE!
But do you know what?

She still can’t remember that list of all important questions she stored so safely in the front of her mind!

Why don’t you believe me

5 Jun

Why don’t you believe me?

As a parent to a child with Aspergers syndrome, I’ve heard myself ask this question a thousand times in an array of situations.

I really couldn’t care anymore if the lady up the road thinks I’m a bad parent and my son is the child of the devil!

But there have been some situations in the past when I have felt like bashing my head continuously against a brick wall, times when I needed support and understanding. People I felt should be naturally supportive were not, instead they made me feel as if I was an overreacting pain in the arse, one who had a problem with parenting… One who was full of Nonsense!

Those people were my child’s teachers, these people almost cost my child his diagnosis!

My child is challenging at home yet he doesn’t show such behaviour when at school is a common issue for parents who are going through the procedure of trying to obtain a diagnosis of Autism for their child (this is so common it should be added to the criteria for diagnosis)! It’s not that we are crying out for our child to have an attached label but without it we have little chance of obtaining the support we crave for both our child and ourselves.

It’s important to remember that us parents are not alone in such situations, but at the time it sure does feel like it!

It comes to a point when one really does question their own skills as a parent, we often find ourselves questioning our own abilities to do the job correctly. I actually started to envy other parents, their relationships with their children! “Why doesn’t their child violently hit, bite and kick them?” You start to wonder if your child loves you and if he doesn’t then why the hell not? You start to walk on dangerous ground when you start to wonder if this really is a case of “poor parenting”

It’s not easy knowing that your child is sat like some little angel in the class room, yet a few hours later his walking through the door and trashing his bedroom! Then someone suggests the autism spectrum, at first you instantly refuse to believe it, but the more you learn about it the more you realise the pieces of the puzzle begin to fit, in some sense you find comfort in the fact it isn’t down to you, your child doesn’t hate you, he just has difficulties regulating his own emotions, why? Because his frustrated with over loaded senses and an altogether different take on the world.

You climb mountains to get on that waiting list for an assessment, when you finally get that appointment the paediatrician nods his head and tells you his confident that your child has traits consisting of a diagnosis of autism ( in my case Aspergers)! More assessments follow and every medical professional your child meets draws them very same suspicions. Then they requests feed back from your child’s school and although you understand there to be no challenging behaviour you are confident that the school will share other concerns, odd behaviours and so forth!

So, why is it that they don’t… Instead they write a report that indicates your child is a typical boy, a child who communicates on the same level of that of his peers? Why do they fail to highlight any bullying, obsessions or quirky behaviours?

I speak for thousands of parents who have all had their child’s diagnosis held up or dismissed completely as a result of such report writing!

I remember feeling completely alone, So angry, So let down.

Every concern I had was disregarded as a lie, my child’s head teachers blamed me for the way my child refused to dress for school of a morning or when he failed to sleep the entire night. I began to hold back my concerns for fear of being judged!

I had now entered a new world, one that no longer got left behind at the school gate! A world of TAC meetings, CAF forms and assessments, a world of battles ones I’d eventually become accustomed to!

Sat in my doctors office, head in hands I cried, I cried so much I could hardly get the words I needed to say out of my mouth and into the listening ear of another! I was tired of fighting the system, I was tired of fighting my child to get out of bed and dressed each morning, I was tired of having my concerns pulled to pieces, most of all I was tired of being me.

It doesn’t help when your own mental health begins to slip away, when you find yourself only able to get through a day once you’ve tanked yourself up on Prozac! I remember reading my child’s education record some 2 years later, I remember the statements made in relation to my own mental wellbeing! What still makes me angry is the fact that my own health only suffered because of them… I didn’t do this to myself, they did it! Being strong enough to now say that with confidence is a wonderful thing!

Despite the depression I continued to battle on when eventually one year after that report my child received an official diagnosis of Aspergers Syndrome!

Why now? He had now seen a number of professionals and the very last assessment was the one that finally closed his case. A video interview with a speech and language assessment who specialised in the autism spectrum, plus a play assessment which helped highlight his intense special interest and rigid thinking.

School still failed to acknowledge his diagnosis as they should have, he was no longer 5 but 8 his traits were more noticeable yet the school failed to make prober adjustments. It normally came back to the issue of little man having no statement of special educational needs (something I later went on to successfully acquire, though not without a fight). Eventually though things changed direction and finally little man settled at home. This was down to working out his triggers that lead to meltdowns, different reinforcements for desired behaviours etc. Not everyday was problem free (far from it) but the hitting slowed a bit and I felt as though I had gain some control back. This was due to now having a better understanding of his needs. However, with the school’s complete lack of adjustments or understanding, little mans challenging ways started to surface once more… Only this time, it was within the school setting!

It’s a long story, but put it this way… That same child (the ‘typical’ little boy) was now excluded on a weekly basis, never taken on school trips and even taught In isolation. All this lead to a disability discrimination case which I finally agreed to settle before the hearing once all my commands had been met! (letters of apology, rewriting of policies and teacher training)! What a turn around!!!

My child now attends an independent special school for children with autism and Aspergers. Life isn’t perfect, who’s is! But we have the diagnosis, the statement and finally the right school… One where I no longer need to ask “why don’t you believe me”

I’m in the final for the mad blog awards in the inspiring category voting closes today (6th June 2012) at 5pm! Please if you love the blog pop over and give us your vote. Mum and Dad Blog Awards 2012

#HAWMC DAY 25 – D-DAY

28 Apr

That day was here, it had finally arrived. She put on her coat, took a deep breath as she closed the door behind her.

Sat at the bus stop a thousand thoughts bombarded her brain, she developed a list of endless questions storing them safely to the front of her mind. Boarding the bus she knew it was almost crunch time. 

The child & adolescent mental health centre was a modern building boasting floor to ceiling windows that had been brightly stained in an array of colours. She sat staring at the rainbow of colour the suns ray had projected through the coloured glass onto the cold tiled floor only to have her trance broken with the calling of her name.

Looking up she recognised the woman stood before her as the Child Psychologist who along with others, had sat for hours observing the behaviours of her then 9-year-old son. 

The Psychologist smiled, though it was one of those awkward half smiles with her head slightly tipped to one side her whole expression cried sympathy!

“How are you?” she asked as they headed for the elevator! She responded by smiling gently while nodding her head and stating “Yes, I’m fine thank you” This couldn’t have been more dishonest! Her life seemed no less than a giant mess, her eyes alone expressed the story of sleepless nights and utter worry.

A weird, awkward moments silence commenced for what seemed like minutes though in reality it was only seconds when finally the ding of the elevators doors rang out. Stepping out of the elevator the Psychologist turned and with that same tilted head and half smile, asked “Are you ready?” 

She was as ready as she’d ever be, for no amount of time could ever prepare her for this day. 

After a short walk down a brightly lit corridor they came to a door, it was on the other side of that door that answers await, the answers to the question she had asked some two years before!

Entering the room they were greeted by a whole host of professionals, each on armed with a clip board, a glass of water and that same tilted head and half lit smile.

Taking a seat she felt her whole body tense, why did she suddenly feel this way? Looking at the tissues the Psychologist had now placed on the middle of the table right before her, she asked herself “Do they expect me to cry?”

After all why would she? 

It had been more than 18 months since that first appointment, her son had seen every single one of these specialist and more besides, almost all giving the same conclusion following observation of his behaviours! Yes, if it wasn’t for the mix up, the mistake of a closed case following a silly mixup in paper work, she was almost certain this day would have come long go.

After that first appointment and first drawn conclusion with a child Paediatrician she had gone home and researched all there was to know on the topic and therefore realised that yes the reality of what that Paediatrician had told her was in fact more than a possibility!

So… why in god’s name would this woman now cry?

There was a whole lot of words, words that went in without being fully absorbed. Each professional adding their view on what support her child would likely require, what this involved and just how to go about getting it!

Then a pause… 

Here it comes she thought!

Looking at the psychologist she concentrated on the movement of her lips as she said them words…

“So, we are all in agreement that the most suitable and fitting diagnosis for your child is that of… Aspergers Syndrome”

It wasn’t a shock… as mentioned the possibility had always been put forward.

As his mother she had taken it on board and adjusted her way of thinking when it had come to parenting her son, she already considered him a boy with Aspergers.

So… why did she find herself reaching for the tissues?

She didn’t cry through sadness, she cried because it was suddenly all so real, so official! With the diagnosis also came a certain degree of relieve, a reason for her child’s uniqueness. She could stop blaming his meltdowns or difficulties on that of her own parenting, school could stop shaking their heads and finally wake up to the fact that this is real and not an excuse.

Silence

Then…

“Do you have any questions”

Of course she did, she had that whole long list that she had readily stored at the front of her mind!

So… why could she not think of one to ask?
 
 
It’s been over two years and this woman has come along way. Like any family they have good days and they have bad days. She embraces her child’s uniqueness and encourages parents of newly diagnosed children to reach out to one another, sharing the message…
 
YOU ARE NOT ALONE!    

But do you know what?

She still can’t remember that list of all important questions she stored so safely in the front of her mind!

 

Post 25/30 in the wego health #HAWMC

Understanding The Diagnostics Of Autism And Aspergers Syndrome

13 Jan

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”

Subject: Quinn, a boy with autism, and the lin...

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.

Autism spectrum

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.

English: Subject: Quinn, an ~18 month old boy ...

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.

The power of positivity

25 Oct

 A pretty exciting thing happened to me yesterday. I was contacted by a reporter for the “Weekly News” which is part of the D C  Thomson  &  Co (a Glasgow Newspaper and media group)

 lovely guy interviewed me over the phone and had a particular interest in my attitude to Little man’s diagnosis of Aspergers Syndrome.  

 It was my positive outlook that got him, he was interested to hear all about how I know embrace my sons condition instead of fighting it! 

 Now, what took me by surprise, was his interest in this side of things. You see, since I first started the I’ve had a number of journalist from the media contact me wanting a story on our most difficult & trying times. Now don’t get me wrong, I’m happy to discuss this, after all it gives those who are currently experiencing them same difficulties, the feeling that they are not alone, and yes they can come out the other side! But to have someone contact me with an interest I’m my positive approach to Aspergers was somewhat refreshing. 

 You see, if this same reporter had read my blog this time a year ago, he wouldn’t have come anywhere near me for a positive story (well, I wouldn’t have that’s for sure)! Ok, I’ve long had the attitude that I will never change little man, but during them long hard days of dealing with a school that didn’t give a donkeys rear end, or while fighting the never ending battling to obtain a statement, positive I was not! 

 I’m proud to say that I’ve come a long way since pre-diagnosis and the day of diagnosis itself.

When I look on my dressing table and see that glass award with the words “Mads Most Inspiring” I can’t help but break out in a smile, and here’s why! 

 My son’s difficulties were the reason I started using a computer, my god back then a snail could type faster than me and yes, I know a snail has no fingers, so what does that say about me ah? Now I’m so fast at typing I could do it with my eyes shut. Back then I was looking for answers and support, why? Because their was nowhere else to find them! That was in 2008 and that’s when I one day found myself blogging… Blogging, the girl who said she would never write through choice, My goodness, I actually love it now! My point being is it was the online community that provided me support and taught me one of the most important lesson of my life to date, one I will always hope to teach another… 

“My child may have Asperger’s but his still the same child, he is no different! The label will not change this” 

 From that moment on I looked at things differently! Once I got that diagnosis, the one I knew he would get (let’s not forget it was two year prior to his formal diagnosis that the child psychologist first told me he was 99% certain my child had Aspergers) I didn’t see it as something we needed to fight through, I was already past the stage of asking myself, “Why my child” or “Was it something I did?” I leant quickly that their would be a lot of battles I would need to fight as a result of the diagnosis. I learnt not to take it personally, it was all about money when obtaining the right support, not the fact nobody believed me, like I first thought. The system didn’t wish to believe any of us for the same reason! The cost to them to give our children that little bit extra support each one desperately required!

 Yes, I wouldn’t change my child, he is who he is and taking his AS away would change so much about him. However of course there are certain things I’d wish away in a second, things that would make his life a little easier, who wouldn’t? I’m his mother after all!

 I don’t blame the parent of the non verbal child or the child who has great developmental delays, when they state they would want to cure autism if they could! How could I, my child can speak and is that bit more high functioning! However I would state that just because he can speak or has the ability to do Math, doesn’t mean his difficulties are not always as trying. So… yes, I’d take away his anxiety, I love him to sleep better, but I wouldn’t take his brilliant mind, his interests and his inquisitiveness as these are parts of his wonderfully personality. 

 It was a really nice interview and I put down the phone feeling positive and positivity is the way forward when your child has a diagnosis of Asperger’s Syndrome.

 If anything, it’s the only way forward!

I’ve finally gone Mad & proud of it

21 May

Stop it, I know I’m not the full ticket, but that’s not here nor there!

This really isn’t about putting the milk in the washing machine nor falling asleep while stood at the kitchen sink attempting the washing up! This is a different kinda ‘Mad’ altogether!


Do you remember around a month or so ago, when I wrote my shameless, ‘SOS’, post that mostly consisted of a load of begging and up-front pleading form me? Well, I’m here to deliver my second dose of classy begging as last time your kindness resulted in me reaching the finals! Yes, I’ll repeat that incase you missed it! “I’VE MADE IT TO THE FINAL!” and the final I’m referring to that of the, ‘Mad blog awards 2011‘, in which I’m shortlisted in the category, ‘Most Inspiring Mad blogger‘, sponsored by ‘Mothecare’. I’m really chuffed to be shortlisted alongside such talent.

But hang on in there tiger! That’s not it! Hell yer there’s more! I also made it onto the shortlist for the ‘ Mad Blogger Of The Year 2011’ sponsored by the fabulous ‘Parentdish‘ this sees me placed alongside five other very talented parent bloggers, who have some fantastic blogs! This category is not decided by the public but instead a judging panel.

Wow! I have to say that I feel truly honoured and thank everyone who put me there in both categories. You’ve helped me achieve this big fat cheesy smile that’s currently spread across my chops. Gosh it’s gonna take a hell of a lot to burst this mummy’s bubble. I can’t remember the last time I was this excited about anything which is why I’m holding onto this feeling with both hands.

Well, given that it worked last time it only seems logical to do it again, “begging that is” which is pretty much made up of…

“PLEASE, PLEASE, LOOK I’M ON MY HANDS AND KNEES!” or “PLEASE VOTE FOR ME, I’LL LOVE YOU ALL FOREVER AND EVER!”

On a more serious note (though the above was no joke), I would like to state that what really touched me is the fact my readers took them two minutes or so out their day to vote for little old me! I really mean it when I say you guys are totally ace.

I remember when I first embanked on my blogging journey, becoming part of the mummy blogging gang. Of course I didn’t see myself as part of anything at that time, I purely found comfort in writing down my thoughts, fears and hopes. In all honesty I never really considered it being of interest to anyone but me! After all, Who want’s to know? Then you get that very first comment! I remember mine clearly, a fellow mother who had a child & hubby on the autism spectrum! She reached out and without actually knowing so, she reassured me, “I wasn’t alone & showed me that,Yes people were interested in the blog”

As for the diagnosis, its like a roller-coaster of emotions! You don’t only learn a lot about yourself but those around you. Some become closer but some of the closest disappear.

There was a point at the time of diagnosis and that leading up to it, when Little man would not attend school (full on school refusal). This wasn’t dealt with by offering some form of support, but instead by taking me to court. It’s ironic really given my son has been school-less for the past 7 months due to mainstream no longer meeting his needs & no other school willing to take him on. The school attendance officer had written in a formal letter to our CAMH’S practitioner,“I can’t see why she would cry! Her son has a cousin with autism” This was in response to a letter the practitioner had written informing her that he considered it likely that Little man was on the autism spectrum possibly with Aspergers syndrome (which he went on to be formal diagnosed with just over a year later) He wanted the school attendance officer to know this alongside my reaction to the news, stating that they should reconsider court action, instead offering support wherever needed. Her comment was a great example of ignorance in its boldest form, sadly there was plenty more to come.

What I’m trying to get across to you all is that this blog came about in one off our darkest hours! Amazingly though its now become a real positive platform that also opened so many doors, one being to the wider community of mummy bloggers (with or without children on the spectrum).

Although a large number of us have faced some laborious situations, hurdles with a string of challenges to over come, and those constant battles to obtain the basics, such basics that without your child having ever received a diagnosis you would properly never have believed such necessities could be restricted from any child’s reach. You find out what really lies behind the school gates, you sit in the head-teachers office at your child’s school more often then you did your own when you were a child. Nonetheless I hope this blog shows that no matter how hard things become, you do get through it, and do so that bit wiser, stronger and if anything more determined.

What started as just my own personal diary changed over time. Although I still blog about the day-to-day life of parenting three children, one with Aspergers, I wanted to be sure to share anything of use, hear what others had to say and offer support where possible. It became my aim to reach out to parents of diagnosed children, especially those of newly diagnosed children as I was quite aware of that feeling of isolation that nearly always accompanies a diagnosis of autism. I also wanted to connect with those on the spectrum, and anyone else willing to listen. Importantly I wanted to try and remove some of the stereotype views & stigma surrounding autism & aspergers, that often lies with those who don’t have the privilege of knowing someone on the spectrum.

I want my writing to empowered other parents to speak out or to simply see that a diagnosis of autism doesn’t have to be a bad thing (after all that diagnosis entitles your child to services that were previously beyond their reach) If my story has helped just the one family, that’s an achievement itself.

Someone once told me “To beg is not classy” Now when did you ever hear me say I was classy? I’ve thrown all caution to the wind by deciding to get fully involved in the awards, “which I must add are totally amazing” If this involves getting down and dirty with the self-promotion then so be it! After all I’m proud of my little space and if sharing it makes it that bit bolder. That can only be a good thing.

So please If you fancy making this mummy’s day then please visit, ‘The Mad blog Awards 2011’ and Vote 4 me Aka, ‘A boy with Asperger’s as the ‘Most Inspiring Mad Blogger’


Lots of love Claire


Request for Statutory assessment

2 Mar

As my last post explained I have decided to apply for a statutory assessment of little mans special education needs. Wanted to get the request written up and sent of before little mans school decide to change their minds in their decision to support me on my quest to get little man statemented and Into a school better suited to his needs.

I have posted a copy  of my written request for a formal  assessment. Please share any tips and advice you can offer me if you feel the request needs to be written any differently.

  • 1st March 2010
  • Re Giovanni Sarcone
  • 01/10/2000
  • Request for statutory assessment.
  • Dear Sir or madam
  • I am writing as the parent of the above child to request an assessment of his special educational needs under the 1996 education act.
  • I believe that Giovanni Sarcone whom attends xxxxxxx primary school
  • has the following special educational needs.
  • Bad behavioral problems in class and playground. His refusal to follow simple instructions and rules given by his teachers and TAs. I feel this is a result of his diagnosis of Aspergers which is a social communication disorder placed on the spectrum of autism.
  • below average learning age despite having age appropriate  IQ ( underwent IQ test at kaleidoscope in 07 )
  • Giovanni’s  in abilities  in coping with certain situations brought on by his difficulties with sensory processing.
  • Rude and inappropriate  manner and language towards staff and peers
  • reluctance to learn unless the subject falls into something of interest to him. lack of communication in asking for help if he has difficulties in understanding work. This brings on outburst of anger in which causes disruption  for the rest of his class.
  • Giovanni has a number of difficulties that affect his school day. His diagnosis of Aspergers means he has many difficulties  with social communication, Reading social clues , expressing emotions in an appropriate manner, sensory sensitivity and problems with routine ( A change of class teacher often results in Giovanni being taken out of class and even being sent home )
  • My reasons for believing that his school xxxxxxx primary cannot on their
  • own make the provisions required to meet my child’s needs are as
  • follows
  • Giovanni’s behavior becoming increasingly more difficult for the staff to contend with.
  • He often will be removed from the classroom due to him being extremely disruptive.
  • He will often miss out on classroom activities and playtime due to behavioral factors and a reluctance to follow instructions.
  • An increases in letters and phone calls regarding his behavior and refusal to work.
  • Their has been at times a need for me to collect Giovanni from school just for lunchtime as playground and dinner hall staff are unable to cope with him. He has also been sent home early or half day due to not following teachers instructions  and behavior problems.
  • He is on the verge of exclusion  from school which I worry will do more harm then it can possibly do good.
  • I understand that you are required by law to reply to this request within
  • a six-week period, And that if you refuse I will be able to appeal to the
  • special educational tribunal.

  • Yours Sincerely
  • Miss Claire Parkinson

Please note this page was updated on the 20th-04-10. The Name of the school has been removed. It was posted as a genuine mistake. Sorry if this caused any concerns or problems. Clairelouise82 blog author.

Never give up on the fight! The future seems bright.

25 Feb

OMG did anyone read my latest post to little to late? Well things have moved a long a little more! To be honest I’m still in shock, I’m happy, relived and also a little worried and skeptical!

Reasons for all the above is this evening at 5.30 pm I received a call from little mans deputy head. She rang to inform me that little man would be spending time out of class tomorrow. He was on a red card as he had been rude to staff using swear words, then running around the school like a headless chicken. I once again expressed my deep and worrying concerns for little man future. I know that it’s not all down to his condition but most of it is. I’m concerned that taking him out of his classroom again will make him worse as his breaking his routine. Yes he needs to understand consequences for his actions but I still feel that it’s unfair his punished as he is in need of extra help and support and is not receiving it. For these reasons alone I see it unfair! Just then she tells me that from her point of view little man would benefit from a statement as she thinks he is struggling to cope in mainstream school. Hang the hell on let me pick up my jaw from the floor! A STATEMENT!! This is what I have wanted for two long years this is what I spend all my free time fighting for! Why have I been told for so long it’s not an option. I’m told that now she has seen his formal diagnosis she can now offer more support. She said that they are not able to cope with a child with little mans level of needs. He requires one on one but their staff are not trained to deal with his condition. She goes on to say that he would benefit from a special school and secondary school would be a challenge for him. Basically she was saying all the things I had said before over and over again.

I know that the school have done nothing but supple  me with stress. I have had no support and have battled with them over anything and everything. Yes They have really messed up by saying they never received his formal diagnosis when the evidence  that they did is so strong it makes  them look silly. Looking at all these factors I see that maybe they are worried that the Court will see my side and realise  that yes they have failed a child with ASD. Maybe that’s why we have this sudden big turn around but at the same time does it matter what motive is behind it. If  the end result would mean  little man gets the long-awaited support he so needs ?  A statement = A new school which means his needs will be meet by professionals qualified  in dealing with children with social communication disorders. Yes the treatment we have received is worse than poor but I’m starting to get used to this treatment. I found that once Someone listens and takes note they suddenly leave and I’m back to Where I started. The Deputy said that she will tell the school SENCO that she supports my choice in getting an assessments for a statement of needs and from this day on they must offer better support to little man. All of this I will request in writing as who knows what will happen if she decides to leave and I’m not prepared to go though it again.

It was only a few short days ago I took a copy of his formal diagnosis into the school office to be copied. If I hadn’t of done so the deputy assures me that yes he would have been excluded today. It makes me so angry that his diagnosis has only just began to offer a positive effect on decisions made about his welfare within the school. His had the condition confirmed well over a year It should never of gotten this far. What a bloody mess it all become.

We spoke for what seemed like ages. She tells me that the promise of extra help and the long-awaited backing for a statement will not be broken. She is a newish deputy head and this has to be the first time I have really dealt with her and I’m really hoping she is one in a million and keeps to her word and doesn’t let the system fail my little man again. I’m assured by her that the parent will get the biggest imput when applying for a statement. I’m told all the basic information and know its a long road and a hard one but once I have reached the end it will be a great and satisfying achievement. I’m advised to get support from our local GP and DR at kaledoscope where  he was diagnosed all this plus the support of the school will better his chances in gaining a statement. For the first time in ages I feel that things are looking brighter and little mans further in education could be a much happier one 🙂 It’s a feeling I don’t recognized as the situation has never reached this point and at times it did seem pointless. I told the deputy that I felt the school made me out to be a bad parent and all I ever wanted was what she was offering me now SUPPORT. Wow it cost nothing it’s free nothing flashy or over the top who would think that something that seemed so little and silly would mean so so much to me. Support was all I wanted and I wouldn’t ask for anything else in the world right now. We speak about Alice and how it’s all affecting her. The deputy says she finds Alice a very pleasant child who has perfect manners and has grade A behaviour with this she knows that my parenting skills are not an issue when it comes to Giovanni. Wow she must not have read the statements from the educational welfare officer. She made it seem that it was all down to my parenting skills, she made it seem as if I was lazy and didn’t care about his education I was chosing not to take him to school. Then It went on and on about his great behaviour when at school and the fact he displayed no signs of ASD when he was there. Ok she looks pretty silly now with everything that has been going on lately. Well this child with no problems has been excluded a number of times and his deputy head thinks mainstream school is not the right place for him. Yes shes phoned me and told me that she has only just become aware that his experiencing problems and that the school are not coping. I’m guessing she will be doing her best to think up excuses for her statement looking a little less than perfect. Oh well she has a few weeks to come up with something.

Well I just had to share this break through with you all. I’m praying that the end of this chapter is nearing and life for little man is on the up. God knows it’s about time.

STATEMENT OF SPECIAL EDUCATIONAL NEEDS

28 Jan

Ok so you get that formal diagnosis the one that has taken so long to get. After many assessments and meeting have taken place it’s all complete and filed. Yes my child has been diagnosed as having a life long condition but relief floods over you. At long last we can move on! Carry on with life and just get on with it. The assessment process on little man took forever and I know thats exactly how I felt. I had a lot to learn and after talking with other parents of child on the autistic spectrum, reading and just understanding my son I learned a little more each day. However and not surprising There was something I hadn’t learnt. I didn’t have a clue about SEN. Yes I now understood an awful deal about my sons condition Aspergers but what in the world did the word SEN represent. Well lucky for me that was before and that since then I discovered this stood for special educational needs. This was something I stupidly assumed would apply to my son. Well he has a  social & communication disorder, meaning that surely extra help would be on offer for him when it came to schooling. You know from my last angry and frustrated post that little man and SEN don’t go together. Help, extra services what the hell is that ? As I write this I will try my hardest to contain myself. But It’s hard as thinking about the extra support that little man has so crawly been deprived of makes me a tad crazy. But that was far from the end of my frustration

as too much to my horror It turns out having a formal diagnosis of Aspergers is not enough! Shocking I know. It’s up to the school to decide if your child is entitled to or requires any extra educational help. Well god help me! This is the school that labeled my child as having behavioral problems after telling me and others on a number of different occasions that little man was well – behaved in school and showed no concerns. This is also the school who sat and spoke with myself and little mans doctor about his diagnosis, introduced me to the school Senco only to recently inform me that they don’t have a written record of his diagnosis. How on earth is this going to happen? So just when you think the long process of assessments and meetings have come to an end it turns out they have only just begun. In order for your child to access the education that is right for his particular needs an assessment for a statement of needs has to be completed. This is not a day thing but could be a minimum of 6 long weeks. Yes it’s a long time when you are at breaking point and need a school move asap.

So now I wait to see if an assessment can go ahead. The decision to assess is made by the local education authority and in some cases can be refused. It gets better! After inquiring I have been told to state my concerns leading to the request of an assessment. Well from what the school, other parents and children and my son have noted back to me this is some of what I have come up with and I am putting it to you guys before the authority for some much-needed advice and opinions.

  1. Giovanni has problems building relationships with other children with in his school. This makes attending a problem as fear of bullying and rejection.
  2. Finds some of the chosen work un challenging and some to challenging but will not ask for help so therefore will just refuse to do it.
  3. Has issues with using school toilet facilities though fear of the doors becoming locked and also their cleanliness. This has caused a number of problems as I have often had to collect him and bring him home to go.
  4. His outspokenness  has a tendency  to get him into trouble with this being confused with rudeness to other children and staff meaning at times he has unfairly been punished.
  5. Giovanni not eating despite bringing in a packed lunch. Mainly because he wont eat in front of others or maybe another reason that I am not aware of just yet.
  6. The disturbing fact that staff are sometimes unaware of Giovanni not being present at lunch. I then discover He has not eaten a packed lunch for weeks at a time.
  7. His fear of changing for PE in front of others meaning a reluctance to take part or even attend school on them days.
  8. stereo type behavior on Giovanni’s part.
  9. Frustration with others not understanding his way of thinking causing him to have outburst and lash out. His taken a door of its hinges by kicking it.
  10. His need for routine. When ever there is a temporary teacher teaching class he always has problems throughout the day. Mostly being behavioral. This is due to the sudden change. He is also deeply upset if a teacher that has become close to him leaves the school on a permanent basis.

these are just a few of my main concerns and I feel his current school are not equipped to deal with some if not all of them given recent findings and revelations. The school that I wish to place little man at is a school for children on the autistic spectrum including Aspergers, as well as other learning difficulties and certain disabilities. As my child clearly falls into this category I’m hoping he can be offered a place as soon as one is opened. The school has fantastic reviews and always hits its yearly targets. It would be both wonderful and exciting for me and little man for him to be excepted into this school.

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