Who will help my child?

I am tired. I am exhausted.Little M is regularly waking during the night with night terrors, fear of the dark, her duvet not being ‘right’, lost her toy etc etc But that is not the reason for my exhaustion.The reasons are this :-

1) I have fought for nearly 3 years to get support, understanding and a ‘formal’ diagnosis for my son. he is slowly having some support put in place at school- his ‘formal’ diagnosis has still not happened yet.

2) I have had concerns about my daughter for some time now…. the stress of ‘ is this ‘normal?’ ‘Isn’t this just like her big brother at this age?’ and the whole bury your head in the sand and stick your fingers in your ears and go ‘ la, la la’ because this can’t happen twice… can it? And then the stress when you realise yes it can , but who the heck is going to listen to you and you think….. you’ve been through this … surely people will listen THIS time….

3) You get referred to a ‘specialist’ children’s nurse ( not ‘ specialist’ in ASD’s , sadly) rather than a paediatrican ( think because this seems to be the ‘way’ for girls in our area- haven’t got to the bottom of why this is the case.) Who looks at the 7 pages of concerns, listens to the family history, tries to engage with my beautiful girl ( who hides behind her bag and says not one word) and decides, ” Although I am no expert, I think she is on the ‘extreme end’ of normal and I think she will surprise you.” She will ring the nursery ( who say they have ‘no concerns’ – just as my son’s nursery did with my son because a) they aren’t trained to notice the sometimes subtle ( and sometimes not so subtle- yet still fail to spot it) way children present with high functioning ASD’s and anyway aren’t all children with autism boys? Like Rainman?

4) You have some VERY tough times with your daughter where she is ‘ lost in herself’ , very echolalic, rarely smiles and the only thing that raises a smile is a ‘squeeze’ in a duvet , a ride on a swing or to line her Disney Princess figures up over and over again ( and pretty much anything else she plays with.) Where the need for control is so strong it is very difficult to get through a day without feeling like it is a constant battle, where the needs for ‘ sameness’ is so strong that going the ‘back way’ home rather than the ‘front way’ results in a meltdown of such huge proportions , people cross the road to avoid the scene and people offer helpful comments like ‘ she needs shutting in a box!’ and my daughter is almost physically sick from screaming and hysteria.Then the violence in the meltdowns start.

5)Then you notice the that some of the meltdowns have a pattern :- guaranteed after nursery. Just like my son. Where the pent up stress and anxiety has to be unleashed.I do not drive and I am only fortunate that my son has had some good days and I haven’t had to deal with both my children in full blown ‘ M’ mode ( sorry if the ‘ M’ word offends anyone – it seems in some ASd circles it is not ‘ good etiquette to mention it. But to hell with etiquette , this is reality.)Because I really don’t know how , not how I would cope, but how i could keep them both SAFE. That simple thing we think we can do for our children and I don’t know if I could do that if they are both in the throes of an ‘M’ and we are near a busy main road…. I struggled to hold my daughter on her own today.

6) After chatting to nursery staff you realise they HAVE indeed noticed some things about your daughter but never thought to mention it to me OR to the specialist nurse. Things like :- likes to walk round in circles, always pretends to be ‘ stuck in mud’ in a car ( reinactment of Peppa Pig) screams and covers ears if the water tap is turned on full blast or the handryer is used, can’t go near the pet rabbits as ‘ they smell’ and she starts gagging. She spends more time with the adults than the children. Then you realise they are perhaps ‘scared’ of her behaviour as she ‘ kicks off’ when they try to prompt her to put her trousers on the right way round , so they leave her to look a numpty with her trousers obviously on the wrong way round ( patterns up the back, zip to the front), or leave her to wear fleece hat and mittens and coat despite soaring temperatures because they “tried as her hair is all sweaty underneath, but she wasn’t for having it!” This said by the nursery MANAGER. There is ‘ child led’ and there is ‘ child controlled’ …. one aids child development, the other avoids confrontation for the sake of the staff……

Tonight I held and rocked my daughter after she had worn herself into such a state after leaving nursery… I had been hit, kicked, screamed at inches from my face ( all with onlookers enjoying the scene) to try and make her feel safe in a world she is clearly finding overwhelming and scary. I say clearly, it is clear to me and her close friends and family. I always held the ridiculous idea that if your child was suffering and needed help, your child would get it.My experience with my son showed me how wrong I was. My daughter is suffering daily, but I have no-one who will listen to me and take my concerns seriously. Her behaviour is way outside the ‘ extreme end of normal’, yet her specialist nurse is not willing to accept that.She is not under a specialist of any other kind as this nurse seems to act as a filter. The nursery are not qualified to comment as to my daughter’s struggles and yet feel able to say she is perfectly fine’ to the one person who may help her.

Every where you read about the need for early intervention for autism …. where is it please? Where can I get that for my children? Why do children have to suffer because of a ‘postcode lottery’ when it comes to help and it just so happens that my area is one of the worst in the country with regard to the length of the diagnostic path for ASD’s and for the lack of support before and after. It is AT LEAST a 14 months waiting list to be assessed for an ASD. But what people don’t realise is that it can literally take YEARS before you can even get anyone to place your child on this extensive waiting list and then when the ‘diagnostic day’ comes…. a high functioning child can ‘not reach the threshold for a diagnosis’ if they happen to be having a good day and a high funtioning girl is at a double disadvantage…..the diagnostic instruments are trialled on boys and only valid to assess the symptoms as they present in boys…. girls can present VERY differently.

So who will help my child? Her family….. that is the only support my beautiful daughter can be sure will be there.

The New ‘ Special Needs Budgets for Parents’ a.k.a. spending cuts masquerading as an olive branch

For anyone who hasn’t read or heard about it:- http://www.bbc.co.uk/news/education-18061348

For my children and for 1000’s of other’s, this could have serious consequences:-

So let me get this right- they say they are giving parents ‘ more control’ – so how exactly does that work then? By some ( highly likely unqualified or even more likely inexperienced) person decide what is a ‘special need.’ For those children with high functioning autism or Asperger’s even some professionals are guilty of just seeing a shy, quirky, naughty , socially inept child and may even blame parenting skills ( or alleged lack thereof) for years. So will they be bunched into the ‘ persistent social, emotional and behavioural difficulties’ rather than being given the specialist help they require for a NEUROLOGICALLY based lifelong condition.Aren’t things enough of a battle already?

And let us not forget that by 2013, Asperger’s Syndrome is going to be removed from the DSM-V ( the main diagnostic criteria guidelines)…. so my children are a) going to have a condition that ‘ no longer exists’ and b) no longer have a ‘ special need.’

But you can take ‘labels’ away, you can rename anything you like, or refuse to accept its very existence but that doesn’t mean that it isn’t real and it isn’t being experienced. It just means it no longer shows up on medical documents, education records or government statistics……it is a government ‘ initiative’ equivalent of sticking your fingers in your ears and going ‘ la, la , la.’ If it can’t be assessed and diagnosed and it isn’t recognised in schools , we don’t have to fund it. Voila! money saved.

Strangely there is an old philosophical thought experiment:- that has sprung to mind here “If a tree falls in a forest and no one is around to hear it, does it make a sound?” And it basically comes down to this premise:-The possibility of unperceived existence or can something exist without it being perceived? For Asperger’s syndrome- the answer is a resounding ‘ yes.’ Ask any family member of a relative with Asperger’s……

And then there were two…….the journey just got more complicated

I apologise for not writing a post for while I have only the same excuse I gave to my mother’s social worker for not yet competing the carer’s assessment forms….. I am too busy [caring] to complete them! That in itself could be a whole blog post on its own … and don’t even get me started on the hours of free time I need to complete DLA forms….!

Anyway, I actually have a few 5 minutes spare and felt it was the right time for a post.There is good news and bad news with this post. And for once I am going to break with tradition and go with the good news first ( I usually like to get the ‘bad stuff’ out of the way first.) My little man is coming on in leaps and bounds. He is almost one term into his new school and he is such a happy,mature, confident, cheeky little boy these days. Yes, he still occasionally enters meltdown mode but this is usually sensory related ( last one being because he didn’t want to put his feet down on the floor of the swimming pool when walking in ….until the ability to hover has been developed , he will have to make do with a carry from mum!) or perfectionism related… usually around homework time… curse those little ‘flicks’ on ‘ a’s’ that he is so determined to write just ‘ so!’ But he is on the whole anxiety free, gaining in confidence and skills & is such an amazing big brother to little M- he is always thinking of her ( so much for Aspies lacking empathy.) He has won another headteacher award for his handwriting, won a prize for world book day ( dressed up as an alien from ‘ Aliens Love Underpants), still loves his Roald Dahl, is playing Wii Mario Kart on his own, is sleeping better ( even on nights without melatonin) and is teaching himself French! His teachers say he has a lot of potential….I know – he is one in a million:)

More good news is that it is thought my arthritis is not of the rheumatoid variety. i went to see a specialist for ultra sound on my joints & the first thing he noticed was that am hypermobile and this is linked to arthritis. So, am still in quite a bit of pain some days but he is confident it can be managed with physio and some injections every now and again, so just waiting for those appointments.

So on to the bad news. That is unfair to term it that as it may offend some people or little M may read this in the future and feel she was a disappointment & she isn’t & never could be… she is my special little lady and always will be. I have posted before about my concerns about little M and her ‘ little ways.’ Well, as she grows up, her ‘ little quirks’ are becoming more apparent… her lack of eye contact more obvious, her sensory issues more pronounced, her advanced vocabulary, her need to line her Disney Princesses up, her lack of ability to sleep until her duvet cover is ‘ just right’,her upset if we try to catch a bus from a different bus stop, her pedantic language,her full blown meltdowns that kick in about an hour – 2 hours after being at nursery, her pretend play that is so convoluted & yet I realise mainly scripted from Peppa Pig and Balamory & Tinkerbell, her fascination with patterns and colours and her inability to form friendships with other children. She desperately wants to but she invades personal space, becomes repetitive or chases other kids with the rubbish they dropped on the floor and pleads with them to take it from her ( she hates rubbish on the floor and tires to pick it up wherever we go.) It is heartbreaking. The signs are so subtle in many ways and yet so similar to her big brother’s… just a different presentation with more ‘sulks’ than ‘ meltdowns’. Alarm bells are ringing a cacophony in my head. I doubt any professional will immediately see what I see and even if we make it to a golden date of assessment… the good old ADOS test was trialled on boys mainly… so can miss the subtleties that girls can show. But, I have to try. I have to get the ball rolling for someone to see my baby girl may need some help and understanding. So, we are going to the GP on Monday afternoon to see if he will refer to little man’s Paediatrician.We will see……

What an amazing book!

It is rare I have the chance to a) read and b) read a work of fiction. But recently, reading has become my ‘escape’ and my means of dropping off to sleep on a night when my brain is in overdrive. This came highly recommended and it didn’t disappoint.It was well written, gave a real understanding of Asperger’s, had me laughing , crying and nodding in agreement to so many of the main character’s little ways and unique way of seeing the world. Although the subject matter is a tough one ( the main (AS) character is accused of murder and it has moments of frustration and terrible sadness and utter despair… Jodi Picoult never fails to inspire hope in her characters or her reader. Fabulous book:)

Formal Diagnosis……plus ‘2 broken leg’ analogy rant

Last Thursday (19th January) a fabulous (private) psychologist (http://www.btss.org.uk/) diagnosed my son as being on the autistic spectrum and more specifically diagnosed him with Asperger’s Syndrome. She explained there was little doubt, asked alot of questions , tried to engage J in conversation ,saw some of his self stim behaviour (e.g. flapping at dust motes in the sunshine), his anxiety over little things ( e.g.couldn’t find his lego tree) and noticed his obsessions (Roald Dahl books and talking about Wii game.) Although tinged with a little sadness ( we realise although we can help J massively, it will never entirely ‘ go away), it also came as a relief… all the cr*ap taken from his last school, lack of support, lack of understanding , telling me he had no issues, was not on the spectrum and to look to home i.e. it was my parenting.

She also pointed out that although he gave no eye contact apart from when she came in ( but I had forewarned J someone was coming….won’t be doing this again…I forget they need to see J’s worst moments and not when he has been helped to be told ,well he would act like X if I didn’t tell him… they need to see him act like X!) and gave none for the rest of the 2 or more hours she was here… when CAMHS do the ADOS, the little box for ‘ eye contact’ would be ticked.We talked about all the things we had put in place to support j and she said this is brilliant for J long term as he is developing these into his own coping mechanisms. She has also pointed out ( which we knew anyway) that many higher functioning kids do not get a diagnosis under CAMHS- not for a good many years anyway…. mainly because of money. J is high functioning, he has also been helped ALOT at home to develop ways of deaing with things because I want him to be all that he can be. So at a time when CAMHS have messed up ( J not even on waiting list- messed up on their system- grrr!) and they are coming out on Tuesday to decide if they will even accept his referral- I am in huge doubts as to whether they will a) accept his referral and b) if they do , he will get the diagnosis that will help him get the support he needs.

To be honest I want to rant , complain and scream and invite Tony Attwood himself to come at look at out local services and assessment for autism and look at the higher functioning kids! In a local parent autism support group I know of 2 boys who have yet to be formally diagnosed- 1 has been through CAMHS assessment 2 x ( he is now 7 I believe) and the other boy is coming up to 9….it is only recently that an autism outreach worker has agreed he is on the spectrum. These 2 boys and their parents have been through hell- they have been told they are neurotic, stupid, making mountains out of molehills, that there is nothing wrong , their children don’t need support…. but these parents have also been the ones that have ( like me) held their boys after a bad day at school, helped with the bullying of their child, fought and fought and fought for their boys since they were younger than my J now. I am no expert ( their parents are) but these boys seem very ‘ typical’ for children diagnosed with Aspergers… obsessive, advanced language, lack of social ‘ niceties’…. both parents have said how similar j is to them …. yet they have no diagnosis. I was absolutely gobsmacked that CAMHS had not diagnosed them. That was until recently… when i am still gobsmacked but I understand why these boys do not have a diagnosis…..

A child I know has recently been diagnosed with high functioning autism… they would say Aspergers ( he is verbal- but he does not have advanced language skills or different prosody) but they are fading this diagnosis out. That in itself annoys me DSM V is only in proposal stage ( not due to come into force until May 2013!) but out local team have decided to implement it anyway it seems. Like I keep saying , I am no expert, I am not clinically trained but I have worked as an ABA tutor for 2 children with autism for over 10 years, worked with adults on the spectrum for 6, specialised in autism in my psychology degree and have a child on the spectrum. The boy in question is adorable and he also has ‘ savant’ abilities which i think sometimes mask his more autistic traits if that makes sense. Apart from the fact he is verbal and shows these savant abilities he shows no other signs of ‘ Aspergers’…. he does not want to interact at all- oblivious to his peers ( I have been led to believe AS kids want to interact, but don’t know how, or do not interact appropriately..,.like J, like the 2 undiagnosed boys), he does not obsessively question, he does not have anxiety, he is not fully toilet trained ,he is obsessive about certain things ( microwave etc), he is awaiting a 1:1 statement at school ( let’s face it- many parents of AS kids will tell you- a school often misses or refuses to accepts an Aspie child’s difficulties never mind that a child needs 1:1 support.) To me he is moderately autistic with savant abilities. Why is it any of my business what diagnosis he gets? Firstly, none really i suppose – i shouldn’t be so nosy! BUT and that is a big BUT it basically says to me that CAMHS are diagnosing moderately autistic children as ‘ High functioning’ so that in reality a) these children will not necessarily get all the support they need as they will be considered more high functioning than they actually are and b) What about those kids who actually ARE high functioning…. like my boy? or the 2 boys at the local support group? Ahh yes- they will remain undiagnosed for as long as possible ( until they become ‘ challenging’ for someone other than their parents) and their parents will be left angry, depressed and desperate and the boys will miss out on vital support. It seems to me they have just shifted the ‘goalposts’ for diagnosis to meet their own budget. Ethical? i don’t think so!

To me it is like this :- ( analogy here!) a child with 2 broken legs ( severe- moderate on the Autistic spectrum) will get a diagnosis… a child with 1 broken leg ( HFA / Aspergers).. there is nothing wrong with you- you can go through life with a limp! we can’t afford to diagnose or help you… get on with it and be grateful you don’t have 2 broken legs!

I am sorry this has offended anyone. I don’t think it should be a competition as to who has the most ‘ autistic’ child… every child on the spectrum is so different. Once you have met once child with autism, you have met one child with autism as the saying goes. BUT, why is is then we as parents, believe in this but professionals will just tick boxes without seeing the real picture? I just think it is unfair for children to struggle for years without support because of opinions of non ASD trained school teachers ( that ed psychs are willing to listen to… see my earlier posts) and because there is only the money available for the most ‘ severe’ cases. This usually is in line with the most severe non compliant , challenging behaviour in a school environment than actually based on any real assessment of a child’s struggles or real difficulties. Many AS kids mask their symptoms at school and then ‘ explode’ at home…. their ‘ symptoms’ are no less severe in many ways ( apart from advanced language… but anxiety often renders them mute anyway…. cue angry {untrained} teachers saying .. “we know he can talk, he is just being naughty”) and add to this their desperate want to interact but often rebuffed by peers… leading to low self esteem and depression , school refusal, self harm and sadly, thoughts of suicide I am told. And lets not forget that As kids often have huge sensory issues too…. my son does… bright lights, loud noises, textures.. especially in his mouth- often refusing to eat… but guess what? there is no money for OT assessment and help either! Add to this the general public’s ignorance about Aspergers…. there seems to be a little ( not alot I grant you) more understanding for autism itself. And the good old comment ‘ he looks perfectly normal!’ is still said…. since when did anyone on the spectrum ‘ look different???’Does it still seem like they can still ‘ limp’ through life ok with that 1 broken leg now? I didn’t think so…. but there are 1000’s of kids expected to.

Which Century are We in ?


Really, REALLY need more time to write my feelings down about this – ok rant about this. Remind me again- which century are we in? Parents don’t like children with a child with an intellectual disability or autism in their class…. yep come across that. I know some parents think that all children with any disability should be in a special school … so Victorian attitudes to institutionalisation still prevail? No surprise there then. Oh and just for the record, although my son deserves a mainstream education, and I am lucky as we have found a great school for him… if I did want my son to attend a ‘Special school’ ….. there is one in my area ( Kirklees – population approx. 409,000…. just a bit smaller than Liverpool) and there are 6 places and it is a C of E school, so religion plays a big part in the selection procedure.The bottom line is… he wouldn’t get a place and nor would 100’s of other kids on the spectrum. So, looks like that notion of Tolerance really needs some work as ‘ Plan B’ – but let’s face it, it should have been ‘ Plan A’ all along.

How to Vastly Improve the Educational Experience for Young Children with Asperger’s Syndrome that cost the School or the LEA Nothing.

Whilst I keep saying, it is early days,but the difference in J in his new school is truly astounding. I went to bed thinking of what exactly this school has done so differently that has really helped him not just to cope, or ‘ exist’ at school but to seem so content. The answers that came to me are pretty simple really. They don’t require a statement or a huge amount of funding or even any funding and many are common sense. Here are the ones that spring to mind:-

1) As a teacher of a child with AS, read a little about AS… not a huge amount, just a five minute scan of most common signs on the internet would suffice to start. This means assumptions are not been made. ( At J’s last school, iIwas so tired of being told different things about my son that were incorrect, misread or downright untrue and there wasn’t a single person had the faintest idea about AS and not one had bothered to find out either.)

2) Greet the child on arrival and say goodbye on leaving. Be the adult. The child may not respond, don’t be petty and think ‘ I get nothing back, so I won’t bother’- the difference this can make to an AS child is huge. Don’t forget AS children desperately want to interact but find it incredibly difficult, so don’t assume they aren’t interested. 4 days of making the effort to greet J and his teacher was rewarded by the biggest smile yesterday:) This comes down to manners and common courtesy more than anything else.

4) Any change that is going to happen, inform the child. Not the parent, the child. They are not stupid. And will understand. I love the fact that J’s teachers always remind him which teacher will be there the next day. A simple, ‘ don’t forget J, it will be Mrs X in the morning, as I won’t be here, but I will see you on Thursday. Have a good few days and see you on Thursday.’ Perfect. He is informed, respected and understood by that little sentence.

5)Be respectful. Don’t shout like a banshee even if you feel like it and never belittle a child. ( that goes for all kids, but a kid with As is often hyper sensitive and will take even the slightest criticism to heart. J once tore a tissue to little pieces whilst a presentation was being done at his last school. His teacher began ‘ going off on one’ for want of a better expression…’ what silly thing to do, what did you do that, you are not a baby etc etc. If she had just said, ‘ Ooo would you like to put that in the bin J and if you need another, they are in the box over there.’ Mess tidied, child’s self esteem intact. Simple.

6) Know your child development. For example. It is perfectly ‘ normal’ for a 2 and 3 year old to play alongside other children, with little or no interaction. It is not normal for a 4- 5 year old, ( on occasion if the children are concentrating on something but on a regular basis with no other kind of play) especially if there is no eye contact or conversation. The child is not just shy or quirky. Be aware of it. Look at the AS’s child’s interests. J loves computers- yesterday his teacher paired him with a child who also likes computers and whilst there wasn’t much eye contact, J talked and talked and he came home and told me all about ‘ playing’ with this other child and he was pleased as punch!

7) Finally. Listen to parents. They are experts on their own child and the experience and insight of all the paediatricians educational or clinical psychologists or SENco’s in the world does not even start to come close to their understanding of their child.

New Year, New School, New Nursery and New Dancing Shoes!

It has been a while since my last post as I just haven’t had the time to post and when I HAVE had any time, I have been so tired ( pretty sure it is due to the arthritis- the exhaustion is hard to describe. Thank goodness J is now sleeping well on Melatonin or I hate to think of the state I would be in!) But today is a big day. Both my children are in school (J) and nursery (M) and I have a couple of hours of ‘ me’ time. I must admit I feel a little lost. I SHOULD be completing an order ( I work from home- craft business) or vacuuming or tidying or doing the 1001 things that need doing…. but as this is my first lot of ‘ me’ time, I thought I should celebrate and write a post. ( It will take my mind of my little ones and clock watching too- I miss them so much.)

Christmas was difficult on occasion.. J was totally overwhelmed often and he employed his own coping mechanisms that helped him out alot- the first was obsessively holding onto and reading his Christmas cards,regularly.The other was having a regular game of Wii Mario Kart- he adores this and can talk about it quite obsessively and we have had to put some level of ‘ control’ in ( e.g. Not before breakfast, not on a school night etc or he would be lost in his own little Mario world and hard to ‘ bring back ‘ to us. ) Yet another was regressing and behaving like a baby- crawling, baby talk. Really difficult to see how much he was struggling with social gatherings- thank goodness we only have a small family. We had a few meltdowns and a few trashed rooms, but we also worked together on visual timetables for his bedroom wall to help him cope with the lack of routine and this undoubtedly helped.

New Year’s Day 2011 is a day I will never forget. I know I tweeted this so sorry for repeating myself but it is such a ‘biggie’ it has to be mentioned again. Just before getting in the bath, J said ,’ I love spending time with Mummy because I love Mummy.’ And then he stroked my hair and put his arms around me.I was absolutely astounded. J has never said he loves me and it was so unexpected and so beautiful. I cried and tried to stop asap in fear he may never mention it again as he thought he had upset me. J may never say this again or it may be weeks, months or even years but it will be a moment I will treasure always. I feel like it was the most positive start to a New Year I could ever wish for.

January 4th was a big day for J. too. He started a new school. With my utter exasperation, disappointment and downright anger with his last school and the fact that J. was clearly unhappy there,the fact that the distance had become more of an issue since my arthritis had been diagnosed, it was clearly time to find a new school.. ( meltdowns regularly before and after school and weekends aswell as avoiding like he was terrified of certain children.. I know he doesn’t interact well, but this was clearly a fear. In one of his meltdowns over Christmas J. started to nip and pinch- something he has never done. Everytime a new behaviour appears , it has always been traced back to someone doing it to him first. So I am convinced other children had been doing this to him- this could explain the fear and some of the unhappiness.) So he started last week, doing just mornings. I don’t want to tempt fate but it has been a really positive start. His teachers are lovely and keen to really get to know J, They make a real fuss of him on arrival and when leaving and he feels wanted and special like all kids want to feel. ( His last teachers didn’t bother to even say good morning to him….. no help for a child with a social communication disorder.) They have experience of working with ASD’s ( there is another child in J’s class currently awaiting assessment for autism…. so it is nice for both boys ( and their mums!) to have an understanding other in school and at at the school gate.) and it really shows. Apart from a slight bit of anxiety in his face on his first morning, J seems content. Very content. No meltdowns, no clinging to legs, no ‘ rabbit caught in headlight’ expressions. He even ran into his classroom this morning and forgot to give his mum and little sister a kiss he was so keen! His teachers are asking appropriate questions and they are utterly astounded by J’s reading ability and are carrying out an assessment today to make sure they are ‘ meeting his needs’ ( wow- first time that has been said to me!) with regards to his reading and language abilities. His teacher was shocked when I said what stage ORT book he was on and that he could read more complex texts but his last school has kept him on these to check his comprehension ( to be honest if ti hadn’t been for me he would have still been on stage 1, bored silly, and the reason he was kept on level 4 seemed to be more to do with the fact that accessing the higher level books was too much effort for the teachers. Sorry if that sounds harsh but in J’s part of his last school, the highest book level they had was 4 so a level 5 would require his teachers to walk to another cupboard in a different part of the school and this was clearly too much effort. Despite the fact, they had agreed for him to pick his own books in their own library for his additional needs plan… it never happened. Grrr!)

Anyway, when I went to pick him up on Friday, the school secretary was falling over herself to talk to me, saying what an amazing little boy I had. His teacher had been having palpitations apparently as she could find a word J couldn’t read and had taken him into the office where he had read ‘ administrative’ and ‘ frightened’ and ‘ documentation’ to name a few words. Hence, she had asked if it was alright if she assessed his reading today. So it seems this school is really willing to see J as an individual and work to meet his needs. His head teacher has set up a 6 week timetable for J, gradually increasing his time at school with the aim of him being full time after half term.She pointed out that despite J’s advanced language and PC skills his numeracy is average ( he seems to have inherited my number skills rather than his daddy’s- who is a number whizz. ) so they want to make sure he is keeping on top with his numeracy and as these lessons are in an afternoon, they are keen to get him in afternoons asap. I totally agree. But they are also aware that is it all seems too much for J , he can revert to an earlier finish for a while. It is a strange experience to be almost totally relaxed whilst my son is at school. I am normally so worried for him and it is a lovely feeling.:)

Today little M started nursery ,just one full day a week, to get her used to being apart from Mummy for that length of time , yet freeing up the rest of the week for us to have some real quality time together. She looked so grown up with her Noddy backpack and Hello Kitty lunch bag ( all her own choice!) I held it together until she turned round and unprompted gave me a kiss and wandered to her new friends without so much as backward glance and then the tears came! Silly old Mummy as J would say:)

Another first for little M is dance classes every Saturday. She is always dancing, the minute she even hears music in a shop she is dancing away. Her Nanna bought her a ballet dvd and her first ballet shoes for Christmas and there has been no stopping her so classes were arranged. Her Nanna was a ballerina in her younger years ( accepted by Royal Ballet but chose to go into medicine instead!) Everyone thinks their child is smart ( just like I have said countless times with regards to J’s reading ability, but with no frame of reference it is hard to know if it is ‘ just’ motherly pride or something more than that…. By the way, Motherly pride is more than enough for me,.I will never be a ‘ pushy’ Mum, but I will always be the proudest:)) Anyway, at 3 years old, my daughter, the youngest and smallest in her class, picked up routines with ease and grinned and grinned and ballet danced and tapped her way to huge admiration from her teacher and to more tears from a very overcome but proud mummy! I think she may have inherited a real gift from her Nanna and it couldn’t have come at a better time. Little M has started to stammer ( just like her daddy did when he was young) and it just starting to affect her confidence in her speech. Dancing doesn’t require her to speak and it is so lovely seeing her sense of freedom and unbridled bliss when she dances. Needless to say, Mummy’s bank account is now a little worse for wear now new ballet and tap shoes etc have been bought ( the tap shoes are the smallest available… they are like little dolly shoes!)

I don’t want to tempt fate, but I feel 2012 is going to be a good year:)

Another family that needs a helping hand before they fall off the cliff, not when half way down……

After years and years of j not sleeping well and us doing all we can to help within our power, 2 weeks ago I went to our gp absolutely desperate for help for my little man and for us as a family. J has not slept through the night ( not once) for over 3 months. This isn’t just the odd grumble, ask for mum and then drop back off again- this is serious sleep deprivation sencarios. I worry about his development as he just isn’t sleeping enough and the bags under his eyes are now the colour of a fresh bruise. My boy no longer has a problem going to sleep, just staying asleep ( and no he doesn’t nap during the day, if only it were that easy!) here are some of his [lack of ] sleep issues :-

1) nightmares – he has dreamed of being lost in trees, of beetles running over his bed, of drowning etc etc and he screams and is covered in sweat and can take up to 2 hours of rocking him and hugging him for him to dare sleep again, if he does at all.

2) Active brain :- I totally sympathise as my brain sometimes struggles to switch off too. He will cry and say ‘ tired mummy’ but he is physically unable to sleep. Sometimes it is just his brain ticking over random thoughts he cannot communicate and sometimes it is more tangible- 1 instance being where he had ‘ forgotten’ ( temporarily!) how many moons Venus has! A quick look through his favourite astronomy book and he was happy…. but it still took over 1 hour for him to sleep….

3) Genuinely requires less sleep than the average 4 year old. So if he has ( rarely!) slep through till maybe one a.m.- he is quite happy to get up and want to get on with the day. Cue mum encourageing back to bed…. cue major meltdown in the early hours.

4) Obsessions…. J’s obsessions last a few weeks to be replaced with a new one. We have had a particular book on trees, a parricular book on the solar system, marbles, vtech camera, magnetic letters. his latest is a little set of ‘ Alphablocks’ from the tv series. He adores them. If any items of his current obsession are in his room, he literally cannot sleep for thinking of them. So after much fight (!) we have said they are not to be in his room on a night) but he can have them after breakfast on a non school day or when he gets home on a school day. This has helped this issue.

Add to this he will not have dad go into him, only me, so i do not even get a break on the weekend. i am nearing the point of total exhaustion and haallucination… I am not prone to exaggeration, i really mean this. Add to this, he is only at school 3 days a week and i have little m to look after, so I have no means of ‘ catching up.’ i cannot remember when i slept more than 3 hours in a row. Soooo- to the gp 2 weeks ago. Gp says cannot do anything- have to wait for CAMHS. the waiting list is ridiculous- my son will be lucky to get his appointment through by NEXT Christmas. I cry and say I cannot go on like this , there has to be a plan B. Meantime, J has entered meltdown mode ( overhead strip lights, unfamilar room, doctor, focussing in on numbers on weighing scales…. he is angry, aggressive and becoming destructive) Gp wants to admit him to the paediatric ward due to his destructiveness!!!! I calmly explain, I do not want him admitting to hospital, I just want some help to help him sleep, so he, me, we can all function better. he cannot prescribe the drugs so says he will ring the paediatrician in the morning and they will get back to me regarding re- assessment. ( I point out here, j has never been ‘ assessed’ for sleep or anything else – just referred to camhs and will he also help with sensory issues as sometimes he is refusing to eat due to the feeling in his mouth and this can go on for days. Said yes.)

It is now Friday. I have not heard from paed or gp. I had 2 hours sleep last night ( not altogether either). I have rung paed’s secretary- she is on holiday but stand in says she will get back to me asap. I am still waiting. What the heck am i meant to do. i have told them I cannot cope and we are all struggling. Sleep deprivation has huge consequences on people’s mental health and we have coped for so long.

In the meantime… the stress just keep coming. School SENco decided as J shows ‘ no issues’ ( i disagree massively and have put my concerns in writing) at school – they must look to home- what has changed???? For goodness sake! Ed psych says as my son smiled at someone they don’t think he is any longer on the spectrum… looking at interactions at home. So our loving home life has been brought into question by iincompetent professionals. I dared to disagree and was met with ‘ I have a doctorate in child psychology, I’ll be the judge of that.’Ed psych has since been out, done a u turn and is now going to do a full cognitive assessment on J as she aslo feels he is functioning more like an 8 year old and this may be why he doesn’t interact well, as he has nothing in common with his peers. ( Yes, the same woman who said his ‘ interactions were fine.’ God, give me strength.

Then the biggie. My mum has had a stroke- quite a big one- a haemorraghic stroke where blood bleeds into the brain. I thought something like this had happened as she was very confused in the early hours of last Friday morning and I thought maybe a TIA. Gp did home visit and said it was just high blood pressure. Hubby and I not happy, contacted everyone we could to try and help us as my mum so vulnerable and cannot be there 24 hours a day and I am her only relative. No-one could. GP appointment booked for the Tuesday- for me to attaned with her and push for mental health assessment and CT scan. My mum rang her emergency call and to cut a long story much shorter, a stroke was confirmed in a and e with CT scan. My mum’s GP left a vulnerable lady who had had a stroke. What kind of professionals do i have to deal with here?! Hubby and I are pursuing a formal complaint. My lovely mum, is on a stroke unit at the local hospital. Her future changed permanently.

Aside from my mum and other issues of stress ( I won’t go into now!) I feel numb from lack of sleep, from fighting schools, ed psychs, senco’s etc etc My son struggles daily with so many things. then I read about Merlin’s wand and their discriminatory behaviour towards children on the spectrum and, seemingly, those higher functioning kids. I challenge anyone to live my life for just 24 hours….see the struggles my son and all his family has, his routines, his anxiety, his inability to eat regularly due to severe sensory issues, his fears and phobias , his lack of sleep…. No my son does not yet have a diagnosis and he doesn’t attend a special school…. this doesn’t mean he is coping, he isn’t- far from it. But once again my son is penalised.Just as he is with financial support, play scheme support and lets not forget my son does not even have a play mate other than his sister as he is unable to form friendships…. he wants to, desperately too. So this impacts on his self esteem too. Yes, he can speak very eloquently, ( if a little obsessively at times!) and can read like an 8 year old BUT I bet he would swap that in an instant just to have a friend and just to be seen as ‘ normal.’ What a terribly unfair world my boy has to face.

‘Put up or Shut up’ – I am no good at this biting my tongue malarkey.

Well, it has been a while since I posted as life has just been getting in the way. I think it was John Lennon who said something along the lines of ‘ Life is what happens when you are busy making other plans.’ I am so with him on this one.

It has been half term this last week and it has been lovely having my little ones together and we have had some lovely times. I think alot of this is thanks to the fact that I created a visual timetable for J 2-3 weeks before half term and he has known it was coming and we have talked about it and planned things to do all together, so there has been little anxiety for him which is just lovely. However, J has been really poorly this week. High temp., vomiting, listless, lethargic, very clingy. His temp refused to come down so we ended up in A and E and narrowly missed a stay on the children’s ward ( his temperature came down a notch, after yet more meds.) I am so glad we could come home… my poor boy would have not handled a hospital stay at all well, no matter how poorly. He is now, VERY slowly on the mend but  left weak and exhausted and he went horse riding yesterday ( his favourite pastime in the world) and I had to stop his lesson as he just looked so pale and he was not his usual smiley self.

I has a tough start to the week too. I went for the results for my 2nd blood test to the GP, regarding my joint pain and I have now been referred to a rheumatologist as once again I have shown blood results consistent with arthritis…. not sure of what type yet… so will know more in December when I have my 1st appointment. I am worried, some days the pain is so bad and I have only ibuprofen to take and sometimes it doesn’t help at all and I could literally cry and I have a high pain threshold , believe me.

My biggest concern is getting j to school- it is 2 and a half miles away,I don’t drive, no direct bus route, can’t afford taxis all the time and I normally take M in a buggy and let J ride on the back when tired ( thanks goodness for the strength of Pliko pramettes!) If I had had a crystal ball and known about J’s ASD and that my health would be suffering too…. I never would have sent my boy to the school he is at now. But now I just have to deal with it and it is a big concern as I am not hugely happy with J’s support at school anyway or their understanding or even their ability to do what they say will do and then i am struggling to get him there too… ack what a mess:( I did look at another school, but it just didn’t ‘feel right..’ Yes I am picky…. because i do not want for j to go through the stress of changing schools to receive the same lack of support whilst dealing with the change, so the school has got to be right or it is simply a case of ‘ better the devil you know.’ I have been criticised on a forum as my son is receiving more support than some other children and a particular lady said in her area alot of money has been thrown at AS. Firstly, I’d like to move to her area and 2ndly I was not playing th ‘ my child is worse off, no my child is game’…. I wish there was more money going in to SEN across the board. Anyway, the basic message was… ‘put up or shut up’…. i.e. I should be happy with any crumbs thrown in my son’s direction. But I am not very good at this. My son is not receiving the support he needs, I am not being listened to, professionals are not doing what they say they will do or even contacting me regarding observations on my son…… and I am meant to accept this and be grateful into the bargain? How can that be right for my son’s sake? Yes, there is little funding, yes professional services are overstretched etc etc but alot of my ‘ bones of contention’ come down to common courtesy. If you say you are going to observe my son and will contact me to discuss the observation…. please do so. If you say you will make an effort to say good morning to my son to help him with greetings- please don’t ignore him constantly every morning. None of these such things take much time, effort or funding. I am sure it will be written on my notes for my son ‘ PITA’ ( pain in the …) but , so be it. I am not out to make friends just to merely get the support my son needs and deserves. I don’t want to make any enemies either… but I can see this is going to be unavoidable as I am not going to sit back and accept this ‘ put up or shut up’ attitude.

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!