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

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.

DLA and Aspergers Syndrome

It’s been a difficult couple of weeks. I’m tired and moody, everything and anything seems to set me off!

There has been so much on my mind, an overload of worry that I can’t seem to shift. It’s not like I’ve had any less sleep than I usually would! Plus there has been no real big dramas (well, nothing out the ordinary that is)!

However, there is one thing I guess I can blame for my sudden decrease in mood…. The filling out of the DLA (Disability Living Allowance) form. Seriously it’s enough to make the happiest and most energetic of a person, feel depressed and lethargic! It’s a headache… A big fat headache.

I was first faced with this form back in 2008 when my son started attending CAMHS. I wasn’t sure it was right to claim it, but our doctor stated we should as Little Man was more than entitled to the benefit so why leave it to those that wasn’t! I actually cant imagine how we would now manage without it, it makes up a big part of our income.

I remember the thud when the postman shoved it through the letterbox… It hit the floor and the house shook. The form is just outrageously lengthy and anybody else who has ever needed to fill it out will know what I’m talking about! It’s just so barbaric when you have to answer the same question over and over and over again!

We were lucky as we didn’t need to appeal anything, there was no wrong decisions! Our claim went through the system accordingly and it was one battle we didn’t need to fight.

Just like in 2008 I’ve been faced with the stress of having to fill it out again! And how it hasn’t changed much at all.

Little man’s claim is up for renewal and filling out the form is something I’ve tried putting off for months. Not only do you get that classic wrist ache and dead fingers, but it’s very likely that you’ll slowly be driven insane. The frustration as you read out a question only to see that it’s the same as the one you answered 2 questions ago, only its been rephrased and categorised under a different area of care! Some of them questions you’ll need to read over and over again, just to understand it within your own head, because surly they don’t think that your child’s difficulties are that black and white! As a result you find yourself needing to use the space set out at the end of each section. You know the one… “Use this space if you wish to explain why you have given the answers you have within this section… Blah… Blah… Blah!” When your child is on the autism spectrum you find yourself filling out every single one of those boxes. Then there’s the space at the end of the form designated for “Anything else you think we should know?” plus you end up writing an extra two A4 sheets of paper with all that stuff you think they should know! Stuff you think will help your child’s claim success.

There is no possible way you can complete such a form in a day, not if you have a life anyway. You’re this child’s carer and the time required to fill in such a form just isn’t logical. This time round we have the official diagnosis. We’ve been through the statementing process and have seen a whole host of specialist. This therefore means we have acquired a good deal of paperwork, paperwork that the DLA would like you to send in with your form.

I hate paperwork and find myself requesting everything in digital form. I was then stressing at the prospect of having to print it all out to send it to them. Not only would this be disastrous for a good number of trees but would also cost me a small fortune to send. Thankfully they have allowed me to send it to them via email which makes the process much more simplistic.

The hours spent filling in the DLA form were not jolly, they highlight just how difficult life can be for your child which in itself is a difficult reality for any parent to face.

If your filling out the DLA form for the first time, I’d advise that you don’t rush into it. There are many online sites designed to help with the process and you might want to contact the national autistic society for some advice. Their online site has lots of useful information that is designed to help you fill out the form or appeal against a DLA decision.

A Fun Family Day With Thomas The Tank Engine

As a blogger I’m lucky to find some really exciting invitations in my inbox of a morning and recently I received one of these from HiT entertainment.

This was an invite for myself and the children to visit Drayton Manor Park home to Thomas Land. We would be reviewing the parks many attractions as well as watching a special screening of the brand new film Thomas and friends – Blue Mountain Mystery at the parks 4D cinema.

Alice-Sara was out for the day so myself and a friend took the 2 boys along. Little man had a big interest in Thomas the Tank engine from the time he could walk. His Thomas obsession was one of the many factors that helped CAMHS diagnosis him with Aspergers Syndrome, So, Yes, it was pretty intense. His now into transport as a whole but still won’t say no to a bit of Thomas if Tiny Tot is watching it! Little man collected everything Thomas the Tank Engine when he was younger. He has loads of the train sets (that are packed away and kept out of his siblings reach). It’s a shame as Little Harley who is 3 in December is now a huge Thomas fan and would love to sit playing with these!

Drayton Manor is a fair distance from where we live in South East London, in fact it took over three hours to reach the park by car. Nonetheless I felt that it was worth attending as the boys would absolutely love it! They were dead excited when we left bright and early on a Tuesday morning. Harley especially who was kitted out in his Thomas gear.

Two service stations, some sing songs and one minor meltdown later, we finally pulled into Drayton Manor Park some 3 and a half hours after first setting off.

The car park is massive and given this was the 4th of September, many children had just gone back to school resulting in us grabbing a great parking space quite close to the parks main entrance.

I decided not to take Harley’s buggy as I was guessing he’d be to excited to sit in it! I was right, Harley loved it at Drayton Manor and spent very little time sitting with the exception of the cinema and the rides.

As many know Little man 11 has Aspergers Syndrome and Special needs. He was entitled to a ride access band and this was collected from the guest services. I’ve written an additional review that looks at the parks facilities for those with a disability or special needs (particularly an autism spectrum condition) and this will feature on the blog following this one.

Next stop was Thomas Land. Now we only had a quick peek as we needed to head on over to the cinema and as we had little man with us, as to avoid any anxiety we decided to go over a bit earlier than needed so to avoid any queues. Lucky the screening was closed to the public so it was ourselves and a small number of other families who had been invited to review the film. This was perfect as it meant little man remained rather calm avoiding any meltdowns.

We were given some popcorn and bottled water and headed inside. HiT had organised for a few of its fabulous PR team to demonstrate some of its newest toy releases in connection with the movie. My Harley’s eyes lit up like beaming flashlights as soon as he entered the room. There was some great games and play sets on show. Harley went right for the Mega Blocks – Blue Mountain Quarry (which I’m going to have to buy him for his birthday as he keeps request to play with it)!

Little man coped well with all the people and sat in the corner playing with his brother Harley with a great remote control Thomas.

The film was being shown in 4D and we were pretty excited (even me at 30 years old was itching to get in there)! We were called for the screening by no other than the ‘Fat controller’ himself and inside we were shown to our fantastic seats.

The film was brilliant, it ran for an hour which was long enough for a toddler. The storyline was good and easy to follow, even for the youngest of audiences.

In Thomas’ latest adventure, the Fat Controller sends Thomas to work at the blue mountain Quarry where Thomas spots an engine he’s never seen before trying to hide. Determined to get to the bottom of the mystery Thomas tracks down befriends Luke who tells Thomas he’s hiding because he did something so bad he could be sent away from the island of Sodor forever! Thomas does not believe this and set off on a journey to discover the story of this poor runaway engine. On the way he learns of engines bought to sodor from faraway lands and an accident in Brendam Docks where and engine fell into the sea. But only when he’s learnt every piece of the story can Thomas convince his new friend that there’s no reason to hide.

The 4D effects were perfect for the smaller children. Every so often the chairs would move! There was also bubbles when the lights come on and fake snow that gathered on the stage as the lights went down.

After enjoying the movie we then went off to enjoy the rest of the parks many attractions, in particular Thomas land. This was the perfect place for a Thomas fan, it truly is one-of-a-kind, a real Thomas paradise!

Thomas Land boasts 12 wonderful themed rides, a spectacular indoor play area and a shop filled with fantastic Thomas & Friends merchandise.

We went on almost every ride at Thomas land, we even did the Troublesome Trucks Coaster – a 220 metre roller coaster that runs up and over Thomas Land… Ok it’s nothing major for me, I’ve been on some massive beasts but for the 2 year old… I was surprised. It does go really fast and has some pretty sharp turns! I really thought he wouldn’t meet the height restriction, but he did and given he was jumping up and down with excitement, we went for it and yes, he loved it!

Little man also had a fabulous time he really wanted to ride the Ben10 roller-coaster, only he got a little anxious and changed his mind. In order to cheer him up I got him a large hotdog and we chilled by the parks stunning lake and fed the ducks before finally checking out some of the shops such as the Thomas gift shop and the fabulous cartoon network store.

Not that we needed anything! HiT had provide both of the boys with a Thomas goody bag following the film and Oh my… what a lovely goody bag it was!

The kids had an awesome time at Drayton Manor Park – Thomas Land. They also enjoyed the 4D movie Thomas and Friends – Blue Mountain Mystery which is now out on DVD for all to enjoy.

During our long drive home, there was silence… Yep, within 10 minutes of getting in the car both boys were fast asleep.

Thanks HiT the boys had an amazing day at Drayton Manor Park.

Checkout our Video of the day.

Why don’t you believe me

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.

#HAWMC DAY 25 – D-DAY

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

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#HAWMC Day 2 – A NOT SO INSPIRING QUOTE

There is one quote that quite frankly gets on my Nelly … “An apple a day keeps the doctor away”

Why is this even suggested? Who made this stuff up? Come on, seriously, I live in a country where it takes a month to even get a slot with your local GP let a lone a CAMHS Paediatrician (Child Adolescent Mental Health Service) who is there to assist me with any issues or difficulties relating to Little Man, his Aspergers Syndrome, Anxiety and a whole other host of issues! “So… Frankly, who needs some piece of fruit?”

Yes, maybe I shouldn’t take such old wife tales so personally, actually I don’t! I’m pretty much able to disguise between what needs to be taken with a pinch of salt and what needs to be absorbed as reality, though this isn’t the case for everyone… this isn’t the case for Little man.

This is a child who mostly sees the world in black & white, without the support given from certain therapies he may just spend his days indulging in an apple a day only to get that sudden bump to earth when he actually requires a doctor to come his way and will they?

The likelihood of actually chocking on one of these healthy daily snacks seems more likely and yes the doctor would still be “Away” just when you ironically need him!

Of course my point isn’t related to apples, well not as such, its about services, much needed services that parents like me and thousands of others physically need to fight for! We deal with the hidden disability, the stigma nestled between child mental health and that of neurological disorders… yet here we are still finding our child stuck on a waiting list, one that’s so long it’s not surprising that when you receive the much awaited letter, your child’s out collecting his P45 and your at Bingo.

So, as I sit and watch the UK slowly slip down the pan, as the coalition destroy just about anything in its path I wonder how we move on from here? I basically want to know why a man who promised a better deal to those with disabilities, their families and registered carers, is now doing what can only be described as his “Best” to kick us to the curb first, in his mission to take over the country acquiring himself one or two well deserved nick names a long the way? Is there a game plan, this is politics after all! Surly he doesn’t think that making yourself into this hugely hated figure within society will get you any brownie points in the long run? Is it plain to see that he didn’t receive my vote?

See, now I’m running of course….

The reason behind such a sudden “Pop” directed at the UK Government is for the same reason most find themselves ticked off! As a member of this society, I sure am sick of hearing promises that quickly find themselves forgotten and buried within some dusty old file in the house of commons! As a mother of a child with Aspergers and Special Educational Needs, who fought for a statement of sen only to fight for that same statement to be amended! A parent who has endured the battle for her child’s right to an educational placement that can meet his needs, I was bitterly disappointed at the proposed “Green Paper” and worse the lack of progress since (well, public progress)! Yes, the LEA and Health Authority will now work together, families will be able to access the services “they can’t access now” till their child becomes 21! Lets not also forget that both LEA support services and those provided by the National Health Service will become readily available, what with the change in the assessment process! Remember this is for the benefit of those with disabilities and their families, nothing to do with government cuts and quick fixes at the expense of the most vulnerable! It will all be perfect wont it! Everything will be so much more efficient & faster this way, you may even get a little respite if your lucky … Blah… Blah… Blah… YES, We’re all still waiting?

So, “An apple a day keeps the doctor away?” Um, NO! Broken promises, shabby money saving cuts, and politics, that my friends is what keeps that doctor away!

This post was written as part of the #HAWMC, 30 prompts, 30 days, 30 post (this was day 2)

Check out the wego health facebook page for more info and a whole load more bloggers talented bloggers  the challenge.

Never fulfilling the criteria

Some of you may have read my post “Help me to reveal the bigger picture this world autism day” which I posted no longer than a few days back. I wrote the post in an attempt to gather others by my side, in-order to help me pull of a great idea for this World Autism Awareness day (April 2nd 2012)

For those that didn’t read the post, please do, you can find it HERE.

A very quick summary… Basically I’m trying to encourage people to wear something that contains the colours of the awareness puzzle or ribbon. Maybe one of the two symbols on a tee-shirt, face paints, a home-made funky eye mask, etc… it’s totally up to you just be creative! Next write the words”Doing it for World Autism 2012″on a large piece of card and hold it up. Lastly, regardless of where in the world you are, snap a picture.

This is aimed at all, especially those who don’t have a child, partner, relative on the autism spectrum, as well as those that do! Bloggers, especially mummy & daddy bloggers, health bloggers, autism activist etc, can then upload pic onto their site/blog with small description stating that they are doing it to raise awareness for autism. I’ll add a link to my blog and everyone can submit links to linky.

Would love you to also tweet pics and messages using hash tag #worldautism2012 on Twitter

Those that love to network on Facebook, can upload to there profiles or pages tagging the page A boy with Aspergers, which is the fan page connected to my blog and has become a support haven for almost 5,000 members, who are looked after by myself and a great group of admins who have stuck with it throughout.

I’m hoping to get enough images of people around the world dressed proudly in their autism bright’s with a board in their hands. Why… Because I’ll make this into an awesome awareness collage!

For the full details please check the link, as given above!

Now, that’s done, I wanted to touch on yet another issue That I raised within that very same post a few days back!

Those who read, will know that I gave some examples to demonstrate how the word mild, when used with High functioning autism and Aspergers Syndrome, can all to often be seen in the wrong light, resulting in likely misconceptions, causing many distressing situations for those on the higher end of the autism spectrum. This is mainly due to the term mild being widely used to describe the intellectual side of asperger’s and HF autism which then leads people to dismiss every trait to be that of mild! I tried to demonstrate how this is rarely the case when it comes to the social aspect of HF autism and Aspergers.

Now, I did go off to bed late last night, questioning whether I made my point clear enough, explained it as well as I could have! Some fans on Facebook stated I hit the nail on the head where others couldn’t get passed the need to compare Aspergers to what some describe as classic autistic (lower functioning) I did point out that those with autism often get stuck in their own world where’s those with Aspergers often (well, at some point) realise they are different! they want to socialise and just cannot do so, this can cause great depression within the child.

Now to cut to the chase and reframe from writing that whole essay of a post all over again,I’m here today because I came across a news story that highlights the importance of the issues I raised last time… When I asked you.. “would u use the world “mild” to describe…”

Now I ask you the same with another example, one that was reported within the news. I ask does the article you are about to read represent the word “Mild”?

A 11-year-old boy diagnosed as having Aspergers Syndrome was reported to have run away from home because he was struggling to cope with his autism!

The report told how a massive police search was put in place when the child known as Ben, went missing from his bed sometime during the night. He was found to be missing at 7am in the morning when his parents went to wake him for school!

Ben had left a handwritten note which stated that he did not wish to be found!

His father reports how his son Ben who is diagnosed as having Aspergers syndrome, suffers from anxiety and was particularly anxious due to the Sports day taking place at the school which he attends.

Ben’s parents state that “Ben running away is part of an inability to cope with certain social
situations and pressures, which is part of his condition.”

However it was noted that Ben had never ran away before, making this extremely worrying for his parents and everybody else involved.

A huge search was underway when Ben was thankfully spotted by officers who were searching above by helicopter in Elloughton Dales just after 10am.

It is said that Ben told his parents that he had planned to return home later that day.

Ben himself, is a child who has tried to raise awareness for his condition! It has been reported that Ben previously worked raising awareness for autism as part of the Lifestyle Project, organised by Humberside Police.

As I continued on Reading the article, I sadly discovered something that although unfair and anger provoking, it came as no surprise to me whatsoever!

Ben’s father told reporters, that his son is currently under the care of a paediatric consultant, but has only now, since the incident, been offered more help!!

An all to often situation, parents asking for help before the child in question gets into a worrying or dangerous situation, only any previous request are outrightly declined, with the explanation always the same… Your child nor family fit our “criteria” therefore you’re not eligible for support!

Yes, it was reported that Ben’s parents expressed concerns for their child many times, they were noted to be constantly asking for support for Ben, they fought for Ben, though in the end, it took a situation that could have ended so much worse, for that criteria to finally be
met! severe

After Ben’s return his family contacted their local Child and Adolescent Mental Health Service, known to most as (CAMHS) to demand support for Ben, which was thankfully agreed.

The parents wanted to thank the public, family and friends for support. There was also words of thanks for the guys in blue for their fast and efficient response that lead to Ben’s safe return home.

It was reported within the article that CAMHS had made the following statement.

“A spokeswoman for Humber NHS Foundation Trust said: “All referrals to our CAMHS team come either through a professional, such as a school nurse, who has concerns about a young person’s mental or emotional health and would contact one of our primary mental health workers, or through the family’s GP”

Finishing by saying

“All referrals are considered by the multi-disciplinary team to decide on the appropriate care route for the young person.”

This is just one more example of why we need to be heard, Ben like many others, my own child included, deserve a happy childhood, after all this is what every child should have!

Those older Adults on the spectrum, also deserve good decent services, support, recognition and acceptance.

Please wear your colour and hold up your board this World Autism
Awareness day 2012 due to kick off on the 2nd of April.

Also I’d love you to right-click and save the art work, save and display. If so, thank you that is very kind of you all.

You can read the full article from which I sourced this information by clicking HERE and see

Related articles

• Help Me Reveal The Bigger Picture This World Autism Day (aspergersinfo.wordpress.com)
• Weekly Whirl – World Autism Awareness Day is 1 Month Away! (autismspeaks.org)
• Teaching Aspergers Children Self-Care Skills (eoghann.com)

Melatonin for the child with autism

Image via Wikipedia

 I may have recently mentioned that Little man has had a change of medication. He is still taking Melatonin, however now his on a different brand, ‘Circadin’ which is a prolonged- release tablet.

  Melatonin isn’t a medication given to Little man as a way to control his Aspergers syndrome, it’s actually given to help him to sleep at night and remain that way in-till a suitable hour. Many children on the autism spectrum have difficulties with settling to sleep and little man is definitely one-off them. 

 Melatonin, actually belongs to a natural group of hormones and it’s something everyone’s body naturally produces. It’s the Melatonin we produce that helps us to become tired and relaxes our mind enough for us to sleep. Its thought that those on the autism spectrum do not produce enough of this hormone hence the reason why so many are unable to sleep or sleep for long periods of time. 

 Little man has had this problem since he was baby and in all honesty it’s grown much worse with age. I wrote an article for SEN magazine back in August which describes the time I woke in the night to find my 4-year-old son frying a bit of bacon in the kitchen, a child who couldn’t understand why I would be angry about this. The most worrying time for me was when he turned all the hobs (gas rings) on and almost gassed us (We now have a safety switch located on the wall.) However Little man is now 11 years old and I feel he is that bit more responsible about stuff like this and doesn’t tend to act in these dangerous ways quite as much. Don’t get me wrong he is still so much more impulsive than most children, I’ve just banged on about the midnight cooking so much, I think his got the message!

 As he grew that bit older, I noticed it wasn’t so much him waking in the small hours that was the problem, more the fact he wasn’t settling to sleep at all. I got sick of hearing people’s advice when stating, “Take his computer away, remove the television from his room etc….” What people couldn’t grasp was the fact that these items had sod all to do with it! It was his mind he couldn’t switch off, not the television!

 Little man started taking Melatonin when he was 8 years old around 8 months before formal diagnosis which he obtained from CAMHS following numerous assessments (another post altogether). At first it worked a treat, I suddenly discovered that I’d spent the last few years a ‘Night Owl’ and now couldn’t adjust my own sleep pattern, just as I began making progress, Bang… the Melatonin would stop working it’s magic and we were back to square one! I really didn’t want my child receiving stronger medication, though I’m non judgemental to those that do take this route, I just felt it wasn’t for us. 

 I learnt that by stopping and restarting the medication it worked better, nonetheless this was only for at a few weeks at a time, meaning I walked around with permanent shopping bags hanging from under my eyes. Little man spent a lot of the earlier days out of school and at home sleeping! I knew that the best way to deal with this was to get tough and keep him awake tough-out the day in-order to sleep at night, but trust me, it wasn’t easy! Have you tried to wake a child who can become very aggressive at 7.30-am given he only went of to sleep at the ghastly hour of 5-am? As mentioned Little man didn’t begin on any type of medication till he was 8 years old, yet we had been faced with the reality of sleepless nights from day Dot. 

 When Little man started reception at age 5 years, sleeping was already a big an issue as ever and by the age of 7 years the school already had the education welfare officer on my back. I can honestly say that it was at this very period of my life that I was the lowest I have ever been to date. I was taken to court and fined like some careless mother who couldn’t give a rats arse about her child. Yet here I was screaming at the top of my lungs, “I need some help here” yet it felt like no one could hear me (the cold hard reality was no one wanted to hear me). I was just 24 years old then, seen as a young mum without a clue! The court went as far as to send me to parenting classes and stick me on a parenting order. 

 It was back then I lived my life on red bull and expressos, weighed a little over 7 stone and booked myself into a counselling . Little man’s Asperger’s syndrome was now at its height of making itself known. My own child would hit, punch, kick and bite me. I remember one day falling to the ground sobbing, I looked up to see him stood before me laughing. His grandmother later asked him why he thought it was funny? His answer, “Mummy had a red face” 

 It was such a long deliberating fight to get him on the CAMHS waiting list and I released that It was only me that could get him there. My therapist, who was a god sent, said to me during one session, “You’re not a bad mother, go with your instincts” that was the best advice anybody could give me back then! I refused to listen when teachers told me rubbish, implying it was his home life that was the issue, always telling me they saw no issues at school (note they forgot to mention to myself or CAMHS that he had been placed on the sen register, and was bullied for mimicking the opening and closing of a train door) these were things I didn’t discover till I wised up and requested his entire educational record under the freedom of information and Data protection acts when gearing up for a discrimination case. 

 I think that the school expected miracles once little man started on the Melatonin. He would constantly be brought in late, given I had spent the last three hours trying to get him up dressed and out the door! I always got dealt the same insulting comment, “What did you forget to give him his sleeping meds last night” Yer…. right, of course I bloody did. It always rattled me a little more given the fact I’d not slept a wink and spent the morning trying to persuade him to remain in his clothes instead of stripping and running away. It still makes my blood run cold, how quick someone who is meant to be a professional is so quick to judge. 

 Of course I ended up back in court, thankfully the parenting order was scrapped, nonetheless I was still fined for the hard fact that yes I was his mother and regardless of any medical reasons and so forth he hadn’t been in school on so and so day so I was therefore guilty. Can you believe that the head-teacher wasn’t able to come due to school commitments and as my sentence was said out that same head master was busy leaving me a voicemail, informing me my child was excluded for 4 days (the 3rd exclusion in around a month)! No, they were no longer stating he was the angel at school like they once did!

 It’s fair to say that his sleeping issues that are a result of his Aspergers syndrome, have had a huge effect on our lives and my (looks, ha-ha seriously bags and wrinkles are not a hot mamma look)!  My point is, lack of sleep has a huge impact on everyone’s ability to function in everyday life, combined with the effects of poor social interaction, the ability to see an-others way of thinking, anxiety and the day-to-day pressures of life itself makes life a lot more pressing for a child on the autism spectrum and therefore the family too. 

 The new medication is taken in tablet form which has been a bit challenging as his so used to the capsules. I’ve noticed that once taken his much calmer within the hour. He sleeps well though there are still nights that it starts lacking in its benefits so again we need to break for one or two days, I try to do this during weekends but sometimes it’s the case by mid-week. Despite this the medication is actually much better then the last one which was actually having no benefit at all. 

 The first week of the new meds there were a few side-effects such as a hangover effect on wakening and he become much more emotional, crying on return from school for no particular reason. He also felt really tired and would fall asleep as soon as he walked through the door, which isn’t something we are not used to, and not really ideal when he has to sleep through the night. I must note, however off-putting these side-effects may sound, they lasted a little over a week, then began to disappear so to push on is the key. 

 If you’re a parent and your child suffers from difficulty in sleeping it can have a massive impact on your life. Little man is under the sleep clinic and although things are not always great, there is the odd few nights we get a great kip which compared to what its been like previously, its good progress. 

 I would advise any parent, whether their child has a diagnosis of autism or not, to go with their gut. Don’t suffer in silence, a GP can make the appropriate referrals and is able to prescribe a medication such as Melatonin (those in the states can obtain this over the counter and looks something like the image above). You as the parent need sleep in order to do the best job possible in raising your child, seek advice before it gets any worse (and believe me, it will)!

Related articles

• Research Review: Melatonin and Sleep (appliedbehavioralstrategies.wordpress.com)
• The John Crane Memory Game, So Much More Than Just A Toy (aspergersinfo.wordpress.com)
• A step in the right direction for autism thanks to Anna Kennedy (aspergersinfo.wordpress.com)

The stranger who got right on my wick

I like to write about the positive side to Asperger’s after all the first two years of this blogs content, was filled with nothing but rants, brought on by a mix of discrimination & my battles in obtaining appropriate education for Little man.

 However, I’m really sorry to do this to you all, but this is in-fact a “Rant” 

 Sometimes life isn’t all rosy and you need to unleash the not so good stuff… Today is one of those days!

 There are a few things troubling me that I need to get out my head and onto the blog, somehow just letting my fingers do the talking for me, helps me to adapt my mood and somehow go about getting on with things.  

 Now, the first is one that I’m convinced most will read and think, “Get Over It” and to be honest if you did, you would properly be right in thinking this, I should just “Get over it” I know this! However there are some days when something like this happens and it’s just the icing on the cake (so to speak)! 

 What am I rambling on about, I haven’t even told you what it is troubling me, yet here I am trying to justify my own thoughts! Well, basically I am hacked off by a person I’m pleased to say I have never had the privilege to meet, a complete and utter stranger who really shovelled a generous amount of judgemental bull in my direction! 

 So what! I deal with this shit daily, right? True! However I wasn’t in the most stable mood this day (Note this was a few days back) I was actually darting to a Halloween party in an attempt to save my panicking 11-year-old with a diagnosis of Aspergers, from a pending firework display. My iPhone pinged and alerted me that I had mail (email) this is when I discovered the comment below. 

I was reading that one difference between boys with aspergers and girls with aspergers is that girls mimic people around them and end up blending in with neurotypical people. I believe aspergers has a genetic base. I think you and your daughter also have aspergers. It also sounds like you favor your daughter over your son, and he notices and resents it. The most annoying thing with mothers with aspergers is that they think the way their children are acting is somehow done on purpose just to frustrate, like they thing they are the center of the universe, them when in fact children with aspergers are just trying to do what’s best for them.

  Yes, I’ve had crap like this before but this however really rubbed me up the wrong way. Now here’s what drives me that bit more crazy… You get dealt this type of ignorance, become somewhat fired up, yet all you can do is leave an angry “Mind your own business” reply, containing a fair portion of swear words (which I just about reframe from adding) as well as a load of typos that occur as a result of your mad frantic typing! Then you wait… and wait… In reality I don’t want to get into some full on bitching match with this numb nuts above, yet somewhere muddled within the haze of my angry mind, I want to see his response and I want it now! Yet it never comes, ever!

 I’m my head I was screaming you cheeky patronising *#¡# how dare you read just one, just one post and think you have the right to judge me as a parent! 

 What’s more, what right do you think you have to diagnosis not only myself but also my daughter as having “Aspergers” Goodness me, you have never even met either of us. 

 Oh… and you can cut the other crap about my son acting out his aggressiveness in the direction of his sister because he feels she is my favourite, thankfully you really don’t know me.

 Yes, this asshole thinks he knows it all, when actually he doesn’t even know the slightest. I don’t care if the individual has a diagnosis himself or is even a parent, he still has no sodding clue about me and my family!

 Here’s the thing people! I spend hours punishing myself mentally, due to the guilt I feel every single day! Guilt towards my daughter! Why? Because she deserves so much more attention then I have been able to offer. I spent days and nights, writing to schools, filing in complaint forms, collecting evidence for a discrimination case and more besides.

Then there were and still is the trips to CAMHS (child adolescents mental health service) the nights he sleeps in my bed though his far to old, yet if my daughter asks I have to state she can’t and this is purely because Little man would never sleep and likely complain with every movement she made. So, why not refuse to let my son? Consistency is sometimes hard to withstand when its 4am and his been sat outside your bedroom door since midnight in tears! 

 So, when I sit there thinking about this stranger who I have never met, sat at his computer typing this judgemental bull, when this mother has not had a wink of sleep in three days I tend to become a little bit touchy! 

 I would like to state quite loudly that although I love my son with Asperger’s and try to activity embrace the diagnosis, No, myself nor my daughter have Asperger’s.

How this conclusion was drawn from that one post almost makes me want to roll on the floor laughing but at the same time really rattled my cage!

 Now, here comes trouble number 2! I’m worried that once more, yet on a worse scale, my son’s aggressive and growing violent behaviour is going to draw to a serious end but only when his seriously hurt someone (who knows, maybe this won’t even draw an end to it)! 

 At 11 years old his tall for his age, and is no longer the skinny little boy he once was. His gaining strength and today he punched and kicked me so hard I feel to the ground. This was only after he had finished with his sister and I’d tried to intervene. 

 I hear the same thing from high-end professionals who claim that removing the trigger will solve such issues, but what if the trigger is his sister, seriously she only has to like something he likes for him to feel it’s justified to give her a dig. Planned ignoring wont help either! You can’t ignore one of your own children who you love dearly beating the hell out another, it’s just not  worth contemplating. 

Related articles

• Brain Science of Aspergers and Autism Pt. 2: Anger and emotion (wizzkids.wordpress.com)
• Just because I love him (aspergersinfo.wordpress.com)
• Aspergirls: A Subculture Within a Subculture (psychologytoday.com)
• Siblings and Autism: How Are Kids Affected by Special Needs Brothers and Sisters? (blogher.com)
• Brain Science of Aspergers and Autism Pt. 1: Sensory Overload (wizzkids.wordpress.com)

We all have a right to life

     We all have the right to life!

 As I sat reading through some old post on the blog (as you do) I was drawn to a post I had published in March this year, “With the rise in Measles it’s decision time”

 It was clear from reading the post that the issues I had raised were ones other mothers had felt the need to contemplate at a stage in their children(s) earlier years. It was of an issue full of controversy and remains to be this very day. I wrote it because I needed to express my fears, yet I knew the possibility of a debate could be raised, it was clear I didn’t need nor want one! I was lucky the post didn’t become overloaded with anti vaccine debate, (Shame the same can’t be said for Facebook).

 However, given some of the more recent events that have occurred in my life, I felt the need to write this now and have done so without fear of a verbal battering from overbearing “Anti vaccine campaigners” At this moment in time I’m ready for you, So bring it on!

 So, what is there to say now that couldn’t be said in March?

 OK, here it goes! 

 Dear Anti Vaccine Campaigners  (Yes, those whom have chosen to campaign against the use of vaccine as a way to immunise our children)

 I do ask you ever so politely to please reframe from sending me emails requesting my signature on your anti vaccine petition! Please do not try to add me to your anti vaccine groups on Facebook! I do not want to Re-tweet your anti vaccine tweets when on twitter, nor do I wish to hound those who have chosen to vaccinate their children preaching to them what it is that you believe! 

 Why?

 Because It’s not my belief , nor do I intend to make it mine!

 So, here’s why

 On the very first day of October some ten, almost eleven years ago, I gave birth to the beautiful baby you all know as, “Little Man” It was the year off a new Millennium it was the year 2000. “Me”,  I was just a teen, a very young eighteen (Yes, mum I know that now)

 As the months passed quickly Little man grew and before I blinked he was a toddler. I grew a great deal too! Yes, of course I grew older, “Don’t we all” the growing I’m referring to, is that of the person I was becoming. Little man was a blessing a baby that never cried,(Except for when he had horrid colic) he was a baby that my mother referred to as a, “Little angel” He was easily fixated to the colours that flashed from the telly, the trains at the station and the wheels on his toy car. I weaned him with little problems (apart from his particulars  for finely mashed food). He was a baby and toddler that met all his developmental milestones, even exceeding a few! Yet looking back it was there! The clues, yet so little… What first time mother would notice? My Little man did certain little special things (Yer, they were different, different but oh so bloody amazing all the same)! Admires would glance at him cooing about how clever he was. He walked at a reasonable age through never crawled. He spoke, he spoke too well at times. I considered him a cheeky little monkey as he took my hand using it as a tool to point and pick things up for him. Lazy I had thought! But how wrong, how lazy he was not! Fully potty trained throughout the day and night before the age of two isn’t what most would describe as “LAZY!” 

 My Little man had all his required vaccinations at all the required times! Of course this included that of the MMR and although he almost broke that nurses nose when he delivered an almighty head-butt right on the shaft of her hooter, when attempting his getaway plan. There were no complications at that moment or during the days, months even years that followed. 

Age 4 years was the age in which I began to notice significant differences between that of Little man and his pre schooling peers (Differences that his then nursery had noted too)! Yes, I knew he was somewhat different prior to this age, but in all honesty I didn’t have much to compare his behaviours to. It was the arrival of baby number two, “My little girl, Little mans sister and rival” as he all to often treats her, who was born when Little man was 2 and 6 months old that many issue were raised. 

 Sadly we moved, “Good bye nursery that was so willing to help” Instead we started the long four year battle with the primary school his now escaped. It was only after much upheaval, tiresome and challenging battles that Little man finally got the diagnosis of Aspergers Syndrome just as he turned nine. This was a diagnosis that we had first been told about at our very first CAMHS appointment back when he was just 7 years old. Oh yes, we were told way back then that, “Our little man was very likely to be on the autism spectrum, with Aspergers being the most fitting diagnosis! Gosh what happened in them two years between them words and that final diagnosis is scattered all over this very blog! 

 As for his educational needs, It wasn’t till this year January that we final got the LEA to agree to statement and after the mother of all fights, he was placed in a special school for children with autism! This was just one month ago! 

Back when Little man first attend CAMHS age 7, when I first heard the words Autism My world changed for ever (for one it lead me to this blog back in 2008) I knew that there was a massive controversy surrounding the possible links between vaccines and that of autism. Though this was mainly targeted at the MMR due to it’s administrating of three vaccines within the same time deterioration. I would be lying if I said I didn’t wonder or question the MMR at this point in time, “Of course I bloody did!” but I had a healthy daughter who received that same vaccination, besides, it wouldn’t change the fact he was on the spectrum… I decided to bury it somewhere in my head. I didn’t need answers, I needed to concentrate on the now, for all our sakes! 

 But that changed when my third child was born, my now 20 m old son “Harley” When that time came, I had to dig the question back out and ask my self… Do I want my child to contract a virus such as measles and quite possibly die? Hell NO

Do I want my child to develop autism? Again NO 

Then I asked myself, Do I want my son to catch measles and maybe DIE or do I want to take the chance of my child possibly developing autism therefore avoiding the risk of measles allowing him to LIVE?

 I instantly had my answer! God I called the doctors receptionist within minutes! Two weeks later he was vaccinated.

  I don’t regret my decision, there is NO proven link between that of autism and the MMR! But it’s a known fact that measles can be fatal! Yet despite the, “No Link” being proven you anti vaccine campaigners argue it as being wrong or somehow fixed….I think some just want something, someone to blame! Without that link you have no answers and that hurts! But isn’t it time you focused on what’s important here,”The child” You’re not going to change who they are by embanking on your mission… Its time to embrace your child and deal with the diagnosis.

I will be outspoken and now share my opinion by stating that, “Those that leave their child totally unprotected, opting not to vaccinate a child in fear of autism, are playing Russian Roulette with their own children’s life, as well as that of the life of those at risk like new-born babies to young for vaccination. (I am sorry if I’m offending supporters of the blog, fellow followers on twitter & friends on Facebook, but it’s a view I feel so strongly about.)

 How would you feel if your child passed on rubella to a pregnant woman who ended up giving birth to a baby who was severely disabled including the loss of sight due to the mothers contamination of Rubella during her pregnancy? Would you feel guilty? 

 Last month I received the news that a friend who sadly I had lost contact with 3 years back had lost her daughter to Meningitis (another vaccine that is avoided) her daughter was not yet old enough for that first Jab. This was contracted on her 8th day off life! God this saddens me! 

 I hold no guilt! I can hold my head high as I walk the streets with my children by my side. I know that when a life is lost or a baby is born disabled due to the mother contracting Rubella, It didn’t come from me or my children. 

I told myself, “If the MMR or any other Jab causes my youngest to develop autism then so be it” I’d rather that then risk him never having the opportunity to experience life! 

 There are children in disadvantaged countries that are dyeing every single day. They don’t have that choice, the choice to be vaccinated. Why? Because there is no vaccine, there is no choice, its all about luck, an unwanted gamble, one you all so knowing have no choice in taking. Please Ask them if they had the choice what would they chose! I think we all know the answer. 

 Your child was brought into this world by you, its mother!!!!

Do you want to risk the life of that beautiful child you created, being crawly taken away? Or do you want to do what a mother is there to do, protect!  

raise their child, giving them every chance off a full and happy life (with or without autism) 

 Anti Vaccine Campaigners, I do not apologise for my outspokenness nor do I apologise for giving my children the right to life

Amen  

Related articles

• Autism Because MMR Vaccines? (socyberty.com)
• Will the UnVaccinated Get Sued? (williamflew.wordpress.com)
• So what do parents really think causes autism? (leftbrainrightbrain.co.uk)