Tag Archives: CAMHS

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


Why Autism Sunday Matters!

13 Feb

Today is a big day in the land of autism for today is autism Sunday.

It’s sad but true, that for so many this means nothing. But then if Autism Sunday existed some ten years ago would it have meant anything to me?

“In a nutshell.. No” I would not have gave it a second thought to be honest, So to judge others would be hypocritical of me.

However things should have moved on a lot more given the rise in numbers of diagnosed cases of ASD today.

Little man was given a late diagnosis of Aspergers. Despite being taken on by camhs at age seven. During that very first visit we were told by the psychologist AS was likely to be a suitable diagnosis and referred onto the commications clinic he was actually nine when he received the formal diagnosis. That first psychologist who just knew it was AS moved to sunnier parts of the world and our loss was Australia’s gain. I beleive that if he never left things would have been formalised much sooner then they were. It was said that he displayed a mixed picture as school were insisting that they had not seen the behaviours I described saying that in their opinion any school problems were down to poor school attendence. I had a child who was on the spectrum and school phobic! But who the hell would listen? Two successful court apperances for the LEA shows that no one would. The same psychologist told us before he left that in his opinion it would only be a matter of time before little man is no longer able to surpress his anxieties when at school and as he gets older the taits of his suspected AS would unfold right before they’re eyes in an explosion of meltdowns, inappropriate languge and maybe even episods of violence that are beyond his control brought on by pure confusion, frustration and misunderstandings. By this time it would likely be to late for the mainstream relationship to continue.

As soon as he told me AS was suspected I cried so much that my eyes hurt, they honestly burnt… I then went home and started educating myself on everything autism spectrum. Suddenly everything begain to make sense for the first time in ages. For me it was becoming clear my child did in fact have AS or ASD. Later during my first court apperence for little mans constant school refusal I discovered the letter camhs had wrote to the school… It stated that they thought little man had ASD maybe Aspergers and that I was finding it very difficult to get little man to school, the likely effects his possible AS, insomina and anxieties. He went on to say I would need more support. He said he did not feel little man’s attendence concerns were due to a parental issue. It then went on to state how I was very shocked at the possible diagnosis and had become quite emotional. He had basically told them to give me a break! Yet stappled to that very same letter was a statement made by the then attendence and welfare officer (AWO) that read… “I can’t understand why mum would be so upset as it’s in the family” She was referring to little mans cousin on his fathers side, who was diagnosed with Autism aged 2. I was shocked to the core… How bloody insensitive was she! Come on if you have a family history of cancer, heart attack, diabetes which I do, would it therefore mean a person should not be shocked and emotional with a diagnosis of this kind? I’m not comparing any of the above to ASD I’m simply making a valid point of, “No matter what the bloody family history a diagnosis of any kind is bound to be an emotional one for any parent!” This woman showed ignorance on a whole new level.

Though my nephew now 8 was given a diagnosis of autism at two, I still knew little about the condition despite actually unknowingly raising a child on the spectrum. He was my first born and though I knew he was different I just didn’t know why.

I was treated like a lazy arse mother who couldn’t be bothered to get herself and child up and out of bed in the mornings. The threats of court action that were eventually carried through by the LEA and delivered by AWOs nearly broke me not once but twice! “This wasn’t what me or little man needed!” I would think to myself while sat though parenting classes that were directed at parents of unruly children (mainly teens) A few of the topics discussed included drugs, truancy, sexual relationships and teenage pregnancy! I stood up one evening and said, “what the hell am I doing here? My child is eight years old!” This was absurd, to my knowledge little man didn’t have a bloody clue about drugs! and I sure as hell hoped he wasn’t planing on making out with the ladies just. Still I sat through many useless classes as a result of that first court order.

Lucky for me the second court apperence was a nice big fine instead! Note, * Pure Sarcasm* Yet it could have been worse the LEA were taking me to court on the more serious charge of 4441(a) which basiclly means… Being a parent of a child of compusory school age who has failed to ensure their school attendence and the parent knowingly allows this by not taking him/her to school as opposed to 4441 of the education act that just means the above excluding the knowingly allows part! So how could it have gotten any worse? Well the penalty for 4441(a) is a prision sentence, level 3 fine or both. The judge dismissed the LEAs claim and although I was punished for having a child with AS who was a school refuser it was treated as 4441 meaning a lighter punishment of a £300 fine that I didn’t have so had to pay in installments. Of course this money would be better spent on my children, but hay injustice is never fair.

You really need all this what with being a parent of three children, two school aged (one with AS) and a newborn baby (yes second court apperance was served on me a few days before I gave birth to my youngest

Well the psychologist was right and those that read regularly will know that yes little mans AS did unfold before the schools and LEAs eyes and was dealt with by way of isolation, exclusions (I’ve lost count) In fact little man was being excluded as I stood in court like the naughty mummy I am! and now he receives education otherwise then at school while he awaits a place at a special school and the copy of his final statement of Special educational needs. There is also a pending disability discrimination hearing so a lot has happened since them court apperences most of it isn’t great as you can clearly see.

It’s no good being bitter, It eats away at your insides! However it’s hard not to be given you have stood in court twice, your childs school reported no issues and a year and ahalf later his had more exclusions then I’ve got shoes, you battle for a statement and work your arse of preparing your case for the tribunal due to your claim of discrimination, your child is now without a school and has zero self-esteem, you read reports from education professionals that show that they spend more time assessing you as a parent and questioning your mental health, that the child is left to fall through the cracks in the system, your tired.. so fucking tired that you burst into floods of tears because you spill the cereal at breakfast and you even forget your own bloody name when filling out forms!

Despite all the above I can now say I’m not bitter! I’m stronger! Though my battles are clearly not over and likely one will always arise. I’m putting my experiences to good use by helping others. I’ve done my training and now help other parents of children with autism with a right of appeal to the tribunal. I’m working with little man and his tutor to repair the damage of late diagnosis and mainstream school and today I will be saying a pray asking god for better understanding and support for those children and adults with Autism and Aspergers. Please Note this is not because I believe they are incabable of leading a perfectly good normal life, but because I believe the system does a pretty fine job at trying to make sure they can’t! Late diagnosis, long waiting list, battles to statement, lack of provision, jobs and support services are lacking and though I follow an array of campaigns trying to better all the above, progress is still lacking!

I think David Cameron needs to do a little more then say a few supportive words in aid of autism Sunday! However what did we expect when words are free! Let’s not bank on any support that costs money! The man is slowly stripping the country of it’s children services alongside the very few service supplied to adults on the spectrum.
I think in all honesty the man has some bare faced cheek.

Later today I will be posting an interview on the blog that I had with a very nice man called Coiln who wasn’t diagnosed with Aspergers till he was 44 years old. Did he get the support once diagnosed?

I think we all know the answer to that. What will it take to make things better? Anyone!

I wish you all a great Autism Sunday! Let’s aim to raise some real awareness today to all those untouched by ASD.
We are not asking for anything but a little less ignorance and tad more understanding as the odds are rising that someone you know now or sometime in the further, will have a autism spectrum condition with numbers of diagnosed cases rapidly increasing it seems like an idea to me.

Ignorance is bliss

3 Feb

It’s heartbreaking yet somehow comforting knowing there are other families facing the same battles.

I love that this blog has created a place to bring these families together.

Sometimes, despite our family & friends we feel so isolated.

Surrounding yourself with those that relate…

Is comforting & fills us with the strength needed to carry on with the daily …

battles the system brings!

I’ve heard so many horror stories from parents who in some way or another have been dragged through a system that leaves them both physically and mentally exhausted. Many will tell you, “It’s not their child’s condition that takes them to the edge… But the length’s they have to go to get that condition recognised and provided for!”  Most will come out stronger for it… what choice do they have? These are our children and we only want what’s best for them! Every child deserves an education, an understanding environment, a chance to succeed & be valued for the person they are.

Today’s post is not written by myself but from a dedicated reader who I’m so pleased contacted me to share her journey. In so many ways I related to her story, like I’m guessing many well… Helen is a single mother of three. Her eight year old son Max has a diagnosis of Asperger’s syndrome and ADHD… She talks of her challenge to gain his diagnosis and have him educated alongside his peers. Though Helen has been fighting this battle for a few years she still has some way to go… Here she tells us why…

I am a single mum with 3 great kids Lydia 11, Imogen 10 and Max 8 and a half. I’ve been bringing up the kids by myself since Max was 9 months old. I suppose I’ve always known Max was different but things started to go wrong when he started school. I’d already expressed my concern to his reception teacher before he started but this fell on deaf ears and they wouldn’t even consider a statement even though his pre-school teacher had already recommended one. To cut a long story short,  every time I picked him up from school I’d be taken to one side by his teacher with a look of horror on her face and asked to explain his behaviour which of course, I couldn’t do as I’m not a child physiologist. I couldn’t understand why they seemed so shocked and surprised as I had already stated that I thought there was a problem but still they wouldn’t request a statement and I felt they were laying the blame on my parenting skills. The pressure became too much and soon i was overwhelmed. i was already being treated for depression(postnatal after Max was born and after the breakdown of my relationship) eventually i had a complete nervous break down and the children went to live with my parents for a few months while i recovered. they went to a brilliant school while staying with my parents and Max’s teacher was sure that he was on the autistic spectrum. When the children returned to me and back to our local school Max was referred to the schools pediatrician who diagnosed him with DAMP. Things still didn’t improve and by this time he was regularly being excluded. He was seen by the ED physic and she very helpfully suggested that Max’s issues were down to him not feeling he had  control in his home life(he was 6 at the time) and that mother was known to have mental health issues! Thank you! Although we’d had our problems, the children have a very stable upbringing and the girls were model pupils with no issues at all, in fact they were excelling and still are! At every meeting (and there were loads)! Some teacher/armature physiologist would suggest that Max was emotionally disturbed so I went to my GP and told him that if my son was going to be labelled emotionally disturbed then I would want a qualified physiologist to tell me so and offer him and me( as they were so convinced it was my fault) some support. I asked for a referral to CAMHS but was told it was a school issue! This went on for years with endless pointless meetings and bad advice and opinions from people who had not even met Max. In the end it took me to break down in tears with snot everywhere after being summoned to the school again when max punched the head mistress in the face(and by this point, can’t say I blame him)! And beg them for help. He was finally referred to CAMHS and diagnosed with aspergers (heavily affected apparently) and ADHD. Just after this another expulsion and after that I was expected to take Max to school at 9, pick him up at 10.30 take him home, take him back at 1 and pick him up again at 2.30. After the ADHD diagnoses I felt the pressure from the school to medicate Max and he was prescribed Ritalin. I was very uneasy about this and it worried me that the school seemed so keen. It may have made a slight difference in his concentration but I saw little evidence of this, it did however decrease his appetite and have him bouncing off the walls at night. Max has major food issues probably due to his amazing sense of smell and it’s a real struggle to get him to eat at the best of times and I probably don’t need to tell you about sleep issues! All I know is that the Ritalin made his senses and anxiety go into overdrive and was making him ill so after long discussions with the GP and CAMHS  took him off. This was frowned upon by the school and he was excluded that day. I went back to CAMHS and agreed to give another drug a go. Straterra. he took it for the first time on Thursday which was also his first day back in school after me keeping him off for a week because of the latest exclusion. While I was in the heads office discussing the new arrangements a TA came in and told us Max was being disruptive and seemed very tired and was told to take him home for a rest. He was up most of the night the night before because he didn’t want to go back so took him home and laid with him in my bed to try to get him to get to sleep. He suddenly started pointing at mid-air and asking me what was going on because he was seeing flashes of colours! I immediately referred to the literature that was given to me about the drugs but couldn’t see anything about it in there so I looked at the leaflet that came with the drugs in the packet. CAN CAUSE HALLUCINOGENIC EPISODES AND PSYCHOSIS!! I phoned CAMHS and was told not to worry and keep going and told the school about it and they dismissed it and said it would take time to get used to the drug. OH! That’s Ok then! When I took him back this afternoon he started seeing colours again and seems very lethargic and this is frightening him. He describes them as scary /pretty colours. Again the school are not at all bothered. Is it me?? Am I losing the plot to be concerned about this? Does it make me an over protective and neurotic mother to be worried that I might be giving my otherwise healthy child a drug that could make him mentally ill instead of a drug that made him physically ill just so he fits in with societies rules and makes their job easier? Nothing makes sense to me anymore, maybe I’m the one that’s ill! His statement was still 5 months away at this point and by this time I’d found your blog(a god send by the way) this helped me to realise that the statement would probably come back and bite me in the arse anyway so I told the school that I was very unhappy with the way things were going and was concerned about his lack of education so I wasn’t sending him back. On top of all this, I’d been offered a place on an early bird+ course arranged by CAMHS and specialist teaching but was told by the head the day before that I wouldn’t be able to go because they didn’t want Max in school for a whole morning. I was devastated. I desperately need to meet other families like us and need to learn as much as I could. Thankfully early birds have offered me a place in the summer and recommended a book by Tony Atwood which I’m reading at the moment. A meeting was called at the school last Monday where they persuaded me to hang on until the statement comes through and have promised to arrange to have Max until 11.30 and then for me to home educate in the afternoons. I suspect they were given a bollocking by the specialist teaching service for not supporting me. Ok, I’ll give it a go, but I’m not convinced. He didn’t even make through the doors this morning before I was asked to take him home and bring him back at 1.

My issues are that they have treated me like I am the worst parent in the world for long enough. I have done everything that has been asked of me and it’s them that keep moving the goal posts. I’m sick of being patronised by them and it really annoys me that suddenly everyone’s an expert on aspergers ADHD and Ritalin when they clearly haven’t got a clue. They keep telling me that they have never had a child in school like Max and refuse to believe that I do not have the same problems at home. Max is a funny, loving, good-looking (he gets that from me) charming little boy with a brain the size of a planet and he deserves much more than this. He’s being treated like an outcast! How the hell is he gonna come out of this with any sense of self-worth or prospects? Fast coming to the end of my tether and don’t know where to turn next. They treat me like I’m stupid and incapable of making informed decisions. Max has been badly let down by the system because they were too busy judging me! I am beginning to realise that we are at the beginning of a very long and exhausting journey and we will have to fight for everything. I feel very alone and isolated especially with the school timings, I feel like I’m under house arrest! Trying to take one day at a time at the moment but I lie awake at night worrying about the future. At the moment I think Max is shielded by his aspergers, he doesn’t seem to notice or care of other people’s reaction to him. I’m sure this will change in the near future as he gets older. Friends with kids have moved away from us and friends without kids just don’t get it and just see him as a naughty boy. Basically we keep ourselves to ourselves now and pretty much don’t see anyone. I couldn’t be more proud of Max, he’s such a brilliant kid! Him being diagnosed with aspergers came as a huge relief but it has also broken my heart as I’m sure you will understand. Another, unexpected twist has come of this as well. The more I learn about this condition, the more I am convinced that I have it as-well. Not to the same degree as Max but it explains a lot about my life. I have always felt like I’m on the outside looking in. I have always wanted to fit in but never quite managed it. Now that I’m older this doesn’t bother me as much. I find most people superficial and selfish. I’m quite happy in my own company and quite often go out by myself and just people watch. Even when I’m surrounded by people I still feel alone. It has never occurred to me before because even though at times I can be quite reclusive when I’m out and about I have a whole other person and I’m very charismatic (or so I’ve been told) and out going. It appears on the outside that I’m quite confident and comfortable in my own skin but actually I have a very low self-esteem. I read that aspergers can be more difficult to spot in girls because they are more able to hide it. It’s slowly dawning on me that I cope with some social situations logically because I don’t seem to understand the rules. I’ve spoken to my parents who are also learning all they can about aspergers and they are beginning to think the same. I reckon it has come from my dad’s side of the family. Not sure if I should push for a diagnoses or not as it’s probably too late anyway but it might help me understand some of my demons.

I’ve decided I’ll hang on till the statement comes through but unless he is offered a place in a school that welcomes him and understands him I’m pulling him out and home educating. There has to be a place for him somewhere and any where is better than this.

By Helen (Mum to Max)



The fight to get it right

27 Jan

It’s not easy being a parent, the choices we are faced with can be overly overwhelming. For our choices impact greatly on our children. We are forever making decisions for them, sometimes it’s done with ease… What to dress them in as little ones, what to get them for Christmas & birthdays, what time is bedtime and how much pocket money to allocate. Other times these decisions are far bigger… choosing a doctor, dentist, vaccinate or not vaccinate, school placement, diet, when to start increasing independence… Although many parents find these decision hard, having to make them for a child with AS or ASD is daunting. Choosing the right dentist for example… If you get this wrong and the dentist is somewhat ignorant when it comes to AS/ASD the impact on the child can be huge… a display of public meltdowns everytime they have a checkup isn’t desired. having experience on parenting a child both on and off the spectrum has highlighted the difference my decisions can have on the children.

I now hold this paper in my hand that is full of decisions that would make up my child’s educational further. Yet these were decisions that were not made by me but someone who had never even met my child but was based on the observations made by others and the conclusions they drew. Some of this came from doctors who may not know us personally but on a professional basis for sometime, others were educational professionals who to be honest don’t really know him at all despite his existence at his previous mainstream school for the past five years, the EP who had only meet him the once and an AWO who had always considered it her lifes mission to prosecute me for non school attendance instead of looking at the “whole” picture (how helpful when your little aspie is ripping your hair out from the roots as u try and get him out the street door to go to school!) Then you have the outreach workers who have met him once or twice and despite giving such good advice u still feel a tad concerned as your the parent and it is out your control. The only chance I had to voice my concerns was through the parental advice I would give that I was sure to make both detailed and impactful, not missing a point… Fifteen, A4 pages is a detailed report that I hoped would make some impact.

For all those who have not yet gathered what the hell I’m yabbering on about.The paper I am referring to was the paper so many families fight so hard to hold but are never given that chance. It was little mans proposed statement of special educational needs… and to be 100% honest it was mostly a load of rubbish!!

I’m not no blonde dizzy bimbo who has a head full of air, I’m also no Einstein … but this statement was ignominious in it’s current form. Yes it could be used to access a “special school” but in terms of providing him with support it was useless, the provisions were largely made up from common sense! and though many teachers need to be told this in way of a statement, there was so much more they should have provided! Did I expect anything less? “No!” yet it would have been great to be surprised, but hay we can dream!

So what was the problem? Did it not describe all little mans needs in part 2, was the description not detailed so as not to leave any doubt to what his needs/difficulties were, did the objectives in part 3 not cover all his current needs, did the provision in part 3 not meet the needs of the objectives and provide provision for every difficulty listed in part 2 or was the provision not specific and quantified leaving no room for doubt at who would provide it, monitor it, how long it would be given (hours per week) and how often he would receive it? Maybe it was the use of wolly fluffy words like: “reguler, access to, opportunities, encourged to” that were my problem?

Funny enough it was all the above!!

Yes, every possible issue was an issue! The appendices was filled with advice from those I mentioned above & funny enough a huge proportion of this advice was actually good. His own senco had however wrote hers in a way that was considered by myself as pure ignorance (she just seemed to make him out like he was a brat) however his behaviour outreach teacher gave a fantastic report and great advice. Reading it back today it’s clear to see that regardless of her only having known little man four or five months, she “got it” she wasn’t a specialist autism teacher but at times I wondered. She was in fact an outreach from the PRU the school tried to place little man in (you know the one that had that who “lock down” style going on) The special schools outreach teacher wrote a reasonably good report which given that they had only observed him the once was pretty good (thing was the school she was based later said they could not meet little mans needs when we tried obtaining an emergency placement) the communications and outreach (ASD “specific” outreach team) are always super and it showed in there report. AWO “yep that’s attendance welfare officer to you and me” wrote half a page that just consisted of his attendance issues and not much else ( no surpises there then) As for the SALT well, I think obtaining a report from 2008 isn’t much use to anyone…. The fact that the school attached his ADOS report (autistic dignostic obsevation schedule) that was carried out by a ASD specialist SALT in 2009 as part of their evidence attached to their advice, the LEA still igonored it and chose to go with the 2008 report. This just shows how sly these foxes are. It’s my understanding the LEA are meant to be following the Cop (code of practice) they should therefore obtain reports and advice given on his most current difficulties, if they want to use a report that was taken from a SALT who visited the school when little man had little issues… was somewhat aloof at the time and just happily faded into the background. Just because it stated he had no SAL problems then I’m inclined to insist they also use reports from 2007 detailing traits that warrant no provision today but did then. These traits are no longer an issue as they have been replaced by others. my point is… Do u think the LEA would have used the report if it indicated high cost provision should be made? The ADOS was clearly backed up by all additional advice including the EP so it was only reasonable it was used instead. If not another SAL assessment should have been ordered. As for the EP report I was surprised… I had heard the horror stories regarding them writing reports that were not very beneficial due to the fact they were employed by those wanting to draw out a budget statement. She gave a pretty good report and picked up on problems such as his sensory sensitivities and literal understanding of language.

Despite the fact most of the reports reflected one another the LEA choose to leave difficulties unlisted, or just including them in part 2 only to not provide for them in part 3. I love how the parental view only gets a small dedicated sections comprising of two or three short sentences… Yet we are the best professionals to ask when it comes to our children, no one knows our child better then it’s parents, no matter how much they think they do!

Well, I’ve spent a little short of two long weeks making sure these “decisions” that were made with little control from me are amended by writing my objections and suggested amendments. I also made my prefernce for a school placement in part 4. Its fair to say that this was the hardest report I’ve ever written… I cried, got frustrated, laughed like a loony, feel asleep, swore out loud and researched a stack of reading of reading material while I typed… It was one emotional process because it is an important one, and having taken this long to get here it had to be right

If statement were for sale, this statement could be brought at our local Tesco store (British supermarket for those more far a shore) you would find the statement on the economy shelf displaying the words Tesco Value range or if sold in sainsbury your looking at the basics section.

Money, it all boils down to money… To them the statement has to be in line with the use of the LEAs efficient resources!
To us that means your screwed because the LEA are tight fisted numb nuts preferring funds to go to the most needy causes like student artist who receive a fat hand out so the LEA can display “pointless ugly art” around the borough.

So here’s my advice to any parent just starting their journey…
… Get ready for the ride of your life. Walking into the world of SEN is like riding the worlds tallest fastest bumpiest never ending rollercoaster… Once your on it’s pretty hard to get off!

The Highs and Lows…… 2010 in a nutshell (Part2)

5 Jan


Hello everyone…. Happy New Year, Here’s hoping 2011 is the year for all of you (Myself and little man included)

As you can see… Me being me, this post is a little later than first intended! I really did mean for part 2 of my blog to be posted on New years eve so it would be my final post to the year. Well things didn’t go to plan and with a zillion other things to do, It just never happened…. Well as I’ve often been told… Better late then never. With that I will leave you with part two of the post, “The highs and lows… 2010 in a nutshell”

July….

July was a month made up of tears and meltdowns… It was a crazy one. Another multidisciplinary meeting was held at the school, I had finally received  the letter from the LEA refusing to carry out a Statutory Assessment of Little mans special educational needs… This meant I could finally prepare and lodge my appeal to the sen first tier tribunal. The overall outcome of the meeting was for the school to resubmit the Assess 1 (Which basically means… again requesting the LEA carry out a statutory assessment, only  this time the school will be do the requesting, rather than myself. Little man had now been observed in school by a number of outside agencies who were all in agreement that Little man could not cope in a mainstream school and would require a statement of Sen and a placement in a Specialist school. It was decided that when the school request the assessment they should also request that the LEA find Little man an emergency assessment place at a “special school” better suited to meet his needs. The meeting was a highly emotional one for me, I hate crying in public, but I spent most of that meeting in tears! What was read out by his 1-1 teaching assistant and his outreach worker was heartrending to have to listen to. There was one part that even stated…. “Other children are afraid of him! I really like his TA and know she was just stating her observations, but I felt like screaming “His just a little boy… Not a monster”

I tried to raise my concerns over trips but….. I was told that we could discuss this after the meeting! ” Why couldn’t we talk now?”…. This month it all got to much and I felt I had no choice but to lodge a discrimination claim with the tribunal. I did however offer plenty of opportunities for the school to simply apologise and change things so we can fix this sorry mess and concentrate on my Little mans floundering education and emotion well-being being. I heard nothing and instead felt ignored. I was angry that they felt such treatment can be justified… No matter if we win or lose the tribunal, I will be able to hold my head high knowing I did what I considered to be the right thing for myself and my child. It’s not about hate or bitterness…. It’s about a ten-year old that now has no school placement and has been placed in this worrying position because the early interventions, we so badly needed… Were never there! Who listened when I expressed my concerns four years back? Not one off them… Now we are here and my son is a ticking time bomb:( I would do anything to help others avoid such a stressful situation…. No child should be in this position, nor should their parent(s)

The Relationship between myself and the school has become incredible strained… I hate it… Every time you take your child to school you feel that awkwardness floating in the air…. Horrid, horrid situation to find yourself in! It’s just not productive at all!

One a higher note I was contacted by the TSS (tribunal support service) Where I was offered an interview for the training programme that would enable me to become a TSS adviser. First I would need to pass the interview followed by the first module…. If I passed I would then have to pass the following nine for an invite to the two training weekends …  This was fantastic news, and was made even better when I  passed the interview… Yay!

August…

August I’m jumping for joy… Literally jumping up and down like a crazy woman! My reason…. School summer holidays of course. Yes Little man is hard work but then again his sister has a cheeky side too. I would take anything god threw at me right now as long as it isn’t school related! I really don’t think I can contend with one more day of it!

We went on plenty of day trips… Some of these trips little man coped with brilliantly, others were not so good. Of course we indulged his special interest and went bus riding a number of times, But we also embanked on a number of other fun trips. One was to Southend On Sea with my mother and younger sister It was fantastic…. All three of my children loved and the stinky Southend sea air must have got my little man in a pretty good mood as he was happy chap throughout the day. This was also the month that we went to Chessington World Of Adventures, courtesy of Merlins magic wand…. Who we are most grateful to for making our day so brilliant. We were not made to queue for rides and was shown on each one using the rides exit entrance. This was great as it was two hourly waits on most rides and can you imagine that! Little man would be abusing the whole theme park within ten minutes and that’s being generous. Despite this Little man had two mini meltdowns…. One on the train & one on the way there, and the last while in the park. But on the whole a great day was had by all.

August was the month the LEA sen team wanted to play silly buggers. First the tribunal refused our appeal in relation to the LEAs refusal to assess… As we just missed the deadline… But thankfully five days after this, the decision was revoked and overturned. With this the LEA suddenly wanting a mediation meeting…. “Funny how they ignored my calls when I was requesting mediation… Just goes to show, how they operate…. So carless and thoughtless… It all boils down to money.

I also made my discrimination claim on this same month.

Oh… I passed the Module, so on the training programme now. nine more to go and pass.

 

September….

So the day I had dreaded arrived… The children’s first day back at school was here! I felt apprehensive about what lay in store for little man. Anyone would think given the children had been off school for a long six weeks and little man seemed to be at home more than school in general… I would be pushing them out the door, with an over enthusiastic wave & a smile! That so wasn’t the case. Little man wasn’t sleeping till the crazy hours and I knew he was worried about his return to school. I also knew that given the fact he had made one or two friends with his peers, he was also quite eager to attend. I held onto the comfort that he still remained with the same teacher whom he had the year previous, “At least that was one change he wouldn’t have to contend with” I was hopeful that the school had changed their ways…. As since we spoke about my unhappiness… The exclusions had faded, fewer calls were made. Things seemed to have calmed to some degree. Little man worried himself sick about other changes that were to take place. Some being…. New Class room, his workstation being moved, and the biggest…. The introduction of school uniform!

First day back his visual schedule was not in place causing huge meltdowns at home and school refusal on just day 2 of the new school year. If this wasn’t bad enough, Sensory overload was now an issue… The school shirts were driving him potty, yet it kept being insisted that he tucked it into his trousers… To which he would bluntly refuse. This situation became tensed and once more he had to be kept at home. Then all of a sudden the phone calls started once more and sadly so did the exclusions. Again these coincided with trips and activities…. YES ON ALL THREE EXCLUSION! Another chain of three just like those in March! However these were much closer together…. 17th, 22nd, 28th…

October….

The last exclusion of September was for a period of five days but they had no intentions in having him return, what with no reintegration meeting booked but instead a meeting at the local pupil referral unit with its 50 foot high prison style fences and what could only be described as security guards that walked up and down with keys hanging from their belts like prison guards. I went with my mother, they visited us at home, then lastly I took Little man. Lets just say…. “He didn’t wanna go!” and that was good enough for me.

Little man also celebrated his Birthday on the 1st- October while on exclusion. His father took him out for the day doing his two favorite things! “Bus riding and shopping” the latter only counts if it’s shopping for himself!! Later that evening we had a few people round one being a boy from his class, who stayed for tea and Birthday cake.

As we had no date for Little mans return to school… And the fact he was now on day 7 of his five-day exclusion I decided enough was enough and took him back. The LEA had decided to carry out the Statutory assessment of little man special educational needs! “*Fan-bloody-tasic* at long last some excellent news” This also meant we were done to one tribunal date as opposed to the two. The Educational Psychologist came in to observe Little man in his class the day he return following a conversation I had on the phone with her the night before. However the school wouldn’t allow her to observe him in his classroom alongside his peers so this was carried out in the school library with myself present. He was like a caged animal being hidden from the world. After the assessment from the Psychologist I spoke to the Head teacher who suggested that it would be better to take little man home for the remainder of that day, and to bring him back the following one. It was also suggested that he should be isolated all day (work alone with a TA in the den) this had been agreed for the mornings  as to allow him time to reintegrate back into class, however the whole day was out of the question, and with that I started flexi schooling (homeschooling from midday)

Over the month things began to worry me! Certain little things Little man said, his sudden outburst of anger, but most of all that look on his face every time I had to break his heart and tell him “No you wont be attending this trip or that activity… I’m sorry” The worse was the trip he was made to miss at the end of September (He was only excited as it involved traveling on a coach) Little man spent the week policing children as an attempt to make sure the trip would not be removed from his grip! Only to end up the only child not going!

After this emotionally tiring month it got that bit more depressing when….. A large section of our ceiling came crashing to the floor just as it did less than one year before. The ceiling and walls had only been fully repaired a few short months ago. Turns out the plasterers had gone through not one but two water pipes that connected to the radiators in the above bedrooms, when he had attached the new plaster-board. This resulted in the pipes slowly leaking for a year…. “And boy did I know it!”

regardless of these horrors above…. Some good finally came… I PASSED ALL MY MODULES! I had struggled to get them done what with my crazy home life and often did them throughout the night. I never expected to do as well as I did.

I will now attend the training weekends on the first weekend of November and the end of November.

Here’s my good news email…

… Hi Claire,


Hope you are well!

Just a quick e-mail to let you know your module results which were as follows

mod 1- 99%
mod 2-98%
mod 3-98%

mod 4-97%
mod 5-98%

mod 6-100%
mod 7-98%
mod 8-100%
mod-10- 98%
mod 9- to follow as not yet marked

Extremely high marks across all modules, well done!-just one or two marks knocked off for lack of details on a couple of q’s and Re-module 10, question 6- It actually does matter who makes the request for statutory assessment, it is only if it is the parents or the school  make the request that they have a right to appeal the decision-if it is a social services or request from a medical professional they don’t ( although to be fair it is nearly always the parents/school who make the request) section 329 and 329A of the 1996 Education Act.

Sorry all… *giggle* you must think I’m a girl with a bit of a large head! I really don’t mean to be… It just couldn’t have come at a better time! It picked me up and made me feel that at least all that hard work and long nights were not for nothing.


November…

What with the LEA deciding to carry out a statutory assessment, you would think things were looking brighter! The “Special school” we wanted Little man to attend on an emergency assessment basis, stated they could not meet his needs nor had space to do so. I had viewed the school and all I had been told was there wasn’t space! Well as some may already know…. If a school refuse on the grounds that they do not have a place to offer due to space the LEA can override this as it is said that no school is actually full. So I guess the logically way out is to claim “We can’t meet his needs”  The school refused to take him three times before the LEA gave up! Every other school that was approached some, even those that were so far out the area stated they did not have the space or cannot meet his level of need. It’s the school situation that is fueling his fire and I feel like I’m powerless to control this.

What with Little man being flexi schooled, and given how much his missed out on… Mum turned teacher (over night) decides to take her little man on my vision of a school trip! That’s right… I need to do something to bring him up as his self-esteem was so low and he was stating, “It would be better if I wasn’t born” Desperate to turn things around we embanked on our very own special school trip to the transport museum. He was in bus heaven! Remembering my own school trip days… I used the trip as a way to engage him the following day. He actually created a huge project with pictures, cuttings, bus tickets, pictures and drawings…. He even filled the sheet with interesting London Transport facts. extremely pleased was mum:)

It was in the first or second week of November that little man started going to school fall time for three out the five days. The next step was the whole five days. He was still in the den (nice world for isolation) in the mornings but afternoons he would be in class. We got to the middle of the week (Just three days in) When I got the dreaded call that I knew was going to be made that very day. It was the call to inform me little man was to return to isolation all day or if I didn’t want that, then the return to flexi schooling. How did I know this was coming? Because the following day Ofsted were visiting…. That’s how I knew! We reluctantly had to flexi school once more.

This was such a mess, and wasn’t of benefit to anyone but school.

MY high in November was attending the two training weekends… Not only did I have a bit of selfish “Claire” time but i felt like I was doing something to help those families that are experiencing what I have. “Support is like a rare gem… Once you get your hands on it you hold on as if your life depends on it”

I made new friends, and learnt a great deal. Best of all I passed the entire programme, so could now spread some love by doing my thing:)


December…

December is meant to be a month full of Joy & Christmas spirit. I wasn’t seeing much spirit being thrown in Little mans direction. Not when his being isolated from Christmas! This for Little man, For me, and for the family as a whole… Was the last kick in the teeth. We were not prepared to take this any more! This nightmare was being brought to an end. School placement or no school placement, we couldn’t afford to stick at it another minute! We were well and truly beaten down, then trod on! They had allowed for Little man to attend the after school Christmas party… However the few friends he had were ban from attending. I was told he was well-behaved during the disco, he had just walked around the dance floor 😦 So please explain your reasons for not allowing him back in the classroom for his class Christmas Party… For just one afternoon…. AFTER ALL IT’S CHRISTMAS! The best he was offered was a visit from a few of his class peers… By this I mean they come and observe him in his “caged environment” I have a lot of respect for his Teaching assistant as she understands him so much more than the others and if it wasn’t her in the Den with him them mornings…. Fear would have over taken over me. All though he likes this TA he had still become very low due to never being able to join his class. We got told at the meeting we attend this month that there was no intention of him EVER returning to that classroom… I could keep him in the afternoons if I still desired. It wasn’t in his best interest to go into the classroom and “enjoy” himself… Of course it wasn’t said in these words… but I don’t have ASD and can read body language a treat! They were clinging to the hope he is offered a placement in January, but if not he will have a new TA and remain isolated… “FUCK THIS!” (Pardon me) These people really don’t have his best interest at heart, Is it easy to sleep at night knowing that Little man is stressed like no ten-year old should ever need to be.

So we left and that was that!

We were told the purposed statement was being drafted and would be with us sometime the following week. Well that was the beginning of December and it’s not yet her today on the 5th January 2011. I’ve spoken to the Sen caseworker who has informed me It was posted today.

Tribunal is set for January for this reason I had to submit the evidence on the 6th December the day my sister was attacked. This resulted in some mad rush and high blood pressure… I scanned, emailed, and faxed at once…. It was pure craziness.

The end is a whole lot happier…. Aww… Christmas was beautiful…. A tad stressful but like dealing with a pussy cat compared the school or a meltdown Little man style.

So there it is… In black and white (With a touch of pink and grey) Our year in a post…. A nutshell was somewhat of an understatement I think!





The child behind the mask.

8 Jul

It’s been a while since I last posted anything and if the truth be told I’ve just been so tired and not in the mood to blog. It’s rather annoying when your head is willing and happy to blog but your fingers and rolling eyes can’t keep up the pace. Nevertheless here I am with a head full of stuff that I need to write. I think its wise to start this blog by letting you all know I’m still alive and then jumping onto what’s been happening in terms of little man and his floundering education.

Since last time I posted thinks have progressed in some ways but have become progressively worse in many others. It’s so soul-destroying knowing your little boy is not being seen for the true bright child that he is. I’m not blaming the staff for this I’m blaming the educational settings in which I chose to place my son within only to find it the battle of my life to remove him from them.Yes, I can pull my child out tomorrow but any parent going through what we are will understand that without a statement I will be forced to place Little man in yet another mainstream school which in itself will only cause him heighten anxiety. Yes, maybe another mainstream school better suited to his needs, more understanding and willing for the challenge is out there! But how many schools will we have to send him to in order to discover it? Well, I’m hoping that at last something positive will happen and somehow the right steps taken. The reason for this small hope that I cling to is one my Solicitor has put in my appeal for a statutory assessment and two because the school have decided to put in the Assess one form with a number of professionals evidence to prove his current place of school is not the right place for him after all. To many this sounds extremely positive and yes it does to me too but I’ve learnt that with the educational system nothing is set in stone and sometimes the outcome isn’t what you expected nor wanted it to be.

The meeting that was held at little mans school on the fifth of this month was not only the largest we have had yet (In terms of the number of staff and professionals that attended.) But it’s also the one that’s had the most positive outcome. What I didn’t expect from this meeting was for it to be an incredibly emotional one. I was only in the room a few minutes before I could feel myself getting upset. I’m unsure why I hate showing my emotions when in the kind of situation I was in, I just do. I already knew that certain people were attending and I found myself nervous for the best part of the weekend. Every meeting I’m the same but this time it was more than that. I think it was because I had a certain subject to raise and wished I didn’t have to because the communication with the school had improved a little and also the fact I would hear everyone’s opinion on my child. Little man has a range of difficulties and I’m aware that many of these will cause a problem in the setting he is placed in. I am his Mother who has stressed my concerns for such a long time without them being heard. Yes, once I finally got little man the referral to CAMHS they were great. The first clinical psychologist little man worked with was the one who first made Aspergers known to me he was the one who handed me tissues to wipe my tears and gave me a ton of reading material to get stuck into. But what I’m most grateful to him for is being that first person to listen and tell me CLAIRE IT’S NOT YOUR FAULT! These are the words that I still tightly hold onto through everything that has come our way! The battle to convince school that something was wrong, the many assessments, the oh so familiar looks from strangers, the diagnosis, two court cases for attendance and like many this very meeting. Sadly this psychologist left for a job in the sunnier parts of the world but we met other understanding professionals along the way and we were very lucky to meet a great specialist teacher who would also attend this very meeting. Others that stand out from the crowd is his morning teaching assistant a person that has better skills than most and In my opinion could do with a raise. She really should train and find herself a placement working with children like Little man as her support and dedication to my son is a rare gem to unearth and when Little man has finally left his current mainstream school she will be sadly missed by him. It was the statement written and read by this teaching assistant that was very overwhelming. To hear someone other than yourself speaking about your child and at the same time expressing concerns that have been your own concerns for many years can bring about a roller coaster of different emotions. I felt sad, worried, helpless, and surprisingly a little relieved. I went through one extreme to another and found that for once I didn’t have to convince any one person in that room that my son did in fact have a range of problems that were down to a diagnosis of Aspergers. His teaching assistant stated that Little man is for ever anxious and for this reason he is very unpredictable. Little man often lashes out and children are scared of him but have in time learnt ways to ignore and deal with certain behaviours. Wow can you blame me for becoming upset. My son was seen as some kind of aggressive monster by other children. All I could see was this little boy who himself is faced by fear as his scared of the world he lives in. I also heard from an outreach worker who works with little man once a week. She was the one who opened the meeting by stating that although she could see a gentle polite child she also saw an anxious one who is unpredictable and once she loses his attention it’s near on impossible to get it back. She finished by saying working with Little man was like walking on eggshells. This is a statement that I myself have used to describe the behaviours displayed by Little man.

A number of other people spoke and in turn I see a clear picture emerging of a child who was constantly trying to be someone he wasn’t. Hiding his interest in fear of them being seen as stupid by his peers. He was wearing this mask and with it he became a ticking time bomb. My little man had become a child that others feared, others liked, and others were unsure how to approach. All this because he just wants to fit in he just wants to be liked and seen as what he calls “NORMAL” The front door to our home closes and outcomes this child who just wants to relax and be himself. He grabs his pencil or my glasses and then will corporate these unusual household objects into the game that he will often play for hours. My son has transformed himself into a real moving, talking and beeping London bus. Whatever you do don’t try to ask him how his day went nor what he wants to eat for dinner unless you want abuse, tears or an overload of emotion displayed in an undesirable way. Now is his time to offload the stress of his day. This is his coping mechanism as well as his favourite thing to do. This is when little man removes the mask that he has created for himself! This is when his HAPPY.

The meeting went well and although the topic of school trips was brushed aside by the Head till after the meeting, I was still pleased with the outcome. Meeting the ASD outreach worker was extremely helpful and I only wished I had met her sooner. However we do plan to meet soon and I’m looking forward to gaining some more advice from a lady with her expertise and knowledge of the spectrum. We now play the waiting game to see if the LEA assess and if he will be assessed at his current school or in an emergency placement in a specialist school as advised.

In terms of the discussion surrounding school trips (Allotment gardening project) and my upset at little man being excluded from a number of them only to now be told he will no longer take part did happen but it was after the meeting. However I am pleased my Mother was present and that the discussion did happen. All I will write on the matter is that I do believe little man has been discriminated against in terms of not being allowed to attend and take part in the project just like his class peers. Anybody who is a parent will understand my upset and concern on the matter but although it’s upsetting I have decided not to write about it leaving the matter to be addressed by my solicitor.

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